wits' end

2002

2010-11-17T02:19:00.001Z

Eight years ago now. This story had already begun. I was concerned by Mum's vulnerability, but I had no idea... no idea....

ANITA 14th October 1928 - 15th November 2010

2010-11-15T23:27:00.008Z

7:48pm, I was heading towards the pharmacy aisle in the Supermarket when my phone rang. It was Mum’s Care Home. I’d already had a couple of updates on Mum’s condition since Mum was discharged from Hospital, so I wasn’t overly alarmed.

The Carer, H, began by telling me that Mum wasn’t well just now, that she’d suffered vomiting and diarrhoea earlier today. My heart sank a little, but I still didn’t guess what was coming.

“I took your Mum some tea to drink in her room at 6:50. I checked in again at 7:20 and she wasn’t breathing.”

I sat down on the floor.

“The Paramedics are with her now,” H said, her voice breaking into a sob. “They’re doing CPR on her, but haven’t been able to get her breathing so far.”

“So, it’s been longer than 30 minutes since she stopped breathing?”

“Yes.”

I felt numb and very, very calm, as is my custom in a crisis. It’s a practical trait but I always feel self-conscious about how cold it might appear to others. I told ‘H’ that I needed a moment to collect my thoughts. I told her that I was very sorry, since she was obviously so upset. I asked her what she thought I should do. She told me to wait and that she would ring again when they had news, maybe in 10 minutes.

I walked home and then rang the Care Home to tell them that I was going to drive over. ‘H’ told me that the Paramedics had ceased their attempts to resuscitate Mum. I asked her what the procedure was now and she explained that the Police would have to be called, since this was classed as a sudden unexplained death. Then the Undertakers would take Mum to the Hospital.

I asked that they delay until I got there, and I quickly packed a bag and drove over the Pennines.

‘H’ sat me down and warned me that I would find Mum still intubated (as an avid viewer of hospital dramas, I had anticipated this). Once I was ready, we entered Mum’s bedroom. The radio on her bedside table was tuned to Classic FM, and they were playing the Adagietto from Mahler’s 5^th Symphony, the piece used for the movie “Death in Venice”. I thought the radio was a lovely gesture. Mum was there in bed, sort of. I find I’m having trouble these days recognising faces, and Mum’s face looked smaller and most unfamiliar. She looked like a bit like a waxwork, but with an unconvincing blue/grey pallor. As I reached the end of the bed, I thought she’d opened an eye at me and was conscious, but it was just that one of her eyelids was slightly open, and my change of angle had made this look like it had just happened.

I asked ‘H’ to tell me about Mum’s last day, and we sat and reminisced for a few minutes. Then ‘H’ asked me if I wanted to be alone with Mum and I said yes.

Once alone, I sat closer to Mum and tried to talk to her. I stumbled over a few clichés about hoping that she was at peace now, and so on. Then I wanted to feel whether she was cold and I placed a hand on her forehead. The top of her head didn’t feel cold, but maybe the forehead was slightly colder than it ought to be… I wasn’t sure. I took some photos of Mum lying there. It felt horribly wrong, but I knew I wasn't quite "in the moment" and that I would need to see her again to absorb this. Then I pulled back the cover slightly and reached for her right hand and took it in mine, manipulating her fingers so that we were clasping each other’s hands. I don’t recall what I said then, but it felt more honest and meaningful. I put her hand back just as ‘H’ returned to tell me that the Undertakers had arrived. She tactfully suggested that I leave them to their work, and I guessed that Mum might have voided her bowels or something in the hours since death and that ‘H’ was kindly trying to preserve my last memory of her. I went back to the Lounge and answered the Police Officer’s questions. Before long, the Undertakers were wheeling their trolley back through the Lounge with Mum in a body bag. I could make out the place where the material was tight over Mum’s nose – a surreal moment trying to determine the contours of my Mother’s face through polyester. Then she was gone.

It looks like there will have to be an autopsy, since Mum wasn’t seen by a GP within the past 7 days (Hospital Doctors “don’t count”, apparently, and won’t sign a Death Certificate in any case). I will have to correspond with the Coroner to arrange the funeral details once he has released her body later in the week.

I am in shock, I think. I am still feeling very calm and I’ve been able to say some very rational things to the people here about how it’s comforting to know that Mum died quickly “at home” and without suffering a long-drawn out death in Hospital. I know she was glad to be back in familiar surroundings and that she died sitting in the chair by her window, where she always told me that she enjoyed listening to the birds outside. I just wish I’d been perceptive enough to see this coming, that I’d consciously said my goodbyes to Mum whilst she was alive, if that makes any sense.

Perhaps I’m calm because I’ve already done my grieving for Mum. Over the past 3 years I’ve come to terms with her loss because her Self, her deliberate Self, the Mother I knew, was already gone. I took guardianship of the helpless, happy, loving, child who took her place for a time. And doing that forced me to grow up a little. It forced me to give something back. It helped me adjust my opinion of myself just a little bit to the positive. I did some good things for Mum and gave her peace of mind and security and care when she needed it. And that gives me some peace of mind, too.

She left me, as graceful in her departure as she was throughout her life. I’m grateful to her for all of this.

Thank you, Mum.

poetry on ward 3

2010-11-10T23:48:00.000Z

It's Mum's last full day in Hospital today. When I arrive, she smiles at me and asks: "Didn't you know I was in here?"

She doesn't remember my other visits. I take comfort from the thought that at least she knows she is in a Hospital today.

She is shaking again, though she tells me that she is warm. I know that tremors can be a sign of advancing dementia, but I suspect she is just nervous. My presence here is frightening because she knows that I will find her out, that I know her well enough to notice that something is wrong. For years she has been hiding a growing problem, with varying degrees of success, but she suspects that it's obvious now, that the task of hiding it is beyond her capabilities.

I try to get her to sit up, to face me, but she remains curled up on her left side, staring fixedly at the Nurses' Station just beyond the entrance to the ward. Whenever I say anything, her gaze flickers to me and then back. Her face is set in an anxious grimace. It's like she's waiting for something or someone to arrive. Not me.

The Consultant visits us, a young Canadian, and he is rewarded with her rapt attention. I take the opportunity to ask about her condition, about the tremors. There are no definitive answers. He is content for her to move on tomorrow.

I stroke her hand. She seems to like that. Soon her eyelids are drooping and she is asleep.

There are 3 other ladies in the room, having a conversation about favourite remembered poetry. The one who seems the most far gone into dementia keeps stating over and over that she loves "the one with the host of golden daffodils". The other two attempt to recall the words. When they progress to talking of their own favourites, the first lady brings them back to Wordsworth's "Daffodils".

After a few minutes of this, I get up quietly and visit the Nurses' Station to ask if I might access the internet. I google the poem, print it, and take it back to the ladies. They are thrilled to have someone do something for them. The first lady is unable to read, so I offer to recite it to the room. By the time I'm finished, all three are in tears.

I wish Mum had seen this. I know she would have been proud.

I was proud of myself. Not just for doing something nice for the ladies, but for keeping my voice steady whilst reading a line I had forgotten: "A poet could not but be gay..."

update

2010-11-09T23:55:00.001Z

Mum was expected to be in hospital only a few days. She is still there.

On days when I haven't been able to visit, I've rung the ward where Mum is convalescing. The usual routine is that I ask the Staff Nurse how Mum is doing. The Nurse fails to recognise Mum's name. The Hospital staff are calling her by her first name, which Mum has never used and to which she doesn't respond. No matter how many times I correct this, they haven't altered their information in 2 weeks.

Then, when I ask again, the Nurse puts the phone down before I finish and goes to speak to Mum, who of course says that everything is fine, which the Nurse reports back to me. I then have to inform the Nurse that Mum has dementia and is hardly a reliable source, and that I was asking about the progress of her recovery and not her mood.

When I called a few days ago, the news I got back was alarming:

"Oh yes, we've had someone in to assess your Mother for Nursing Care and we're attempting to place her in a Home."
"Excuse me?"
"We've assessed her as unable to walk, so we need to find her a Home."
"She's IN a Care Home ALREADY."
"Ah......... er......"

The phone was handed to someone else, who repeated the above statements. She explained that my Mother's Care Home is listed in their records as a "Residential Home". I took the opportunity to correct this misperception and informed them that the Home is more than adequately equipped to deal with Mum and that there is a dedicated Nursing floor in the building, should nursing be required. I got the distinct impression that I was being humoured at this point.

I rang the Care Home in a state of panic. They reassured me that Mum could not be taken off their hands without their own assessment taking place first. The member of staff, who sees Mum regularly, told me that Mum is often uncooperative with people she doesn't know and that, in her opinion, Mum was probably unwilling to trust the strangers who were attempting to get her to walk. She said that she had seen Mum refuse unfamiliar Care Workers in the Home.

Just as my blood pressure was returning to normal, however, the member of staff said: "We'll make our own assessment and decide then whether she can come back onto the household."

I was perplexed because Mum being unable to walk isn't a new situation. She was in a wheelchair for a few months back in 2008, around the time of her 80th birthday. After that, the local GP gave her some cortisone shots to her knees and Mum was able to walk with relative ease almost immediately. When Mum's knees started to trouble her again this year, I requested that the shots be repeated, but this wasn't done. I couldn't understand why this same situation was now threatening a change of environment. The member of staff informed me that fees for the Nursing floor were substantially higher, upwards of £900 per week. My heart sank. The fees for Mum are currently £625 per week and her income is £400. Taking on a shortfall of £500 per week would mean that we would run through Mum's capital quickly.

I experienced a lot of paranoid thoughts at this point. I thought that the Home was probably seeking to maximise profits by taking the opportunity of Mum's assessment to charge more, even though she has been in the same condition in the past with no question of changing her care. Then I started to worry that this was all MY fault, because I had informed the Home of the reason for Mum's infection - the inadequate hydration regime. I felt that we were being persecuted now for daring to criticise.

I despaired and sank into helpless inactivity.

Today, the acting Manager of the Care Home telephoned me to inform me of the Nursing assessment, unsure if I had been informed. I questioned her vigorously on her reasons for treating Mum differently this time and she was obviously surprised to hear that Mum has been in precisely this state before without anyone changing her status. She told me that since 2 other residents on the household were now also in need of nursing care, Mum's change of status would be too much for the team to handle and that Mum would have to return to the Home on the Nursing floor.

"So the other 2 people get to stay in their familiar surroundings and Mum is penalised?"
"Not penalised... but moved."

I went into a long explanation of our finances and she eventually reassured me that the increase in fees would be met by a Local Authority subsidy of £108, although I was not at all convinced that £625 + £108 = £900. It turns out that newcomers to the Home are being charged £795 per week and that Mum benefits from a discount for having been there from the start. The £108 is based upon the discrepancy between £795 and £900. The Manager assured me that we would not notice a hike in our payments if Mum was assessed as requiring a move to the Nursing floor.

After much grizzling from me, we eventually agreed on Mum coming back to her familiar surroundings for 2 weeks, giving her a chance to feel at home and possibly receive cortisone shots to her knees. After this 2 weeks, the assessment will be made about her future.

I'm visiting the Hospital and the Care Home tomorrow.

Hallowe'en Fright

2010-10-31T23:18:00.233Z

The phone rang a little after midnight. It was from the Care Home. Mum was on her way to Hospital. They told me that she had been throwing up, had suddenly gone very pale and clammy to the touch. They would call again if there was more news.

I arrived at the Hospital in the afternoon. It was alarming to walk in and see Mum looking so altered. She was canted over to one side in bed and looked dishevelled and shrunken. Her left hand was shaking as she pawed distractedly at the cannula fitted to the back of her right. "Hello Mum", I said and she gaped blankly before peering out of the door past me, looking down the corridor to the activity around the administration desk on the unit. After a few more attempts to get her attention I asked her outright if she knew who I was. "You...are...Greg", she said, eventually. She couldn't have looked less interested.

I went to find a chair so I could sit beside her bed. On my return, I noticed that Mum's arm was still shaking and I wondered if she was nervous, so I reached out to hold her hand. As her hand rested in mine, I felt the coldness below and realised that the bedclothes were soaking wet and soiled. The window was open and Mum was sitting in a draught in her own filth - she wasn't shaking, she was shivering!

I closed the window and called a Nurse into the room. As he went to get someone else to replace the bedlinen, I noticed that Mum's IV drip was empty and that her oxygen mask had slipped. How long had she been like this? How long would she have been left like this until someone had noticed? I began to panic about the future and how I would cope when Mum was more seriously ill.

The Nurse came back in to check on Mum's vital signs. They were low, and he fiddled with the oxygen supply before replacing the mask on Mum's face. I was ushered out of the room while they changed Mum's sheets and gave her a couple of blankets.

The Staff Nurse gave me a rapid summary of Mum's condition and their treatment plan, but his accent was strong and he peppered his talk with so much jargon that I ended up deciding to ask someone else. The other Nurse, who'd brought the clean sheets, was much better - warm and chatty - and both Mum and I warmed up chatting to her whilst she brushed Mum's hair.

She told me that Mum's illness stemmed from an infection in her bowels, brought about by impacted waste which was, in turn, due to constipation. The reason for the constipation was dehydration. She said that anyone brought in from a Care Home was always dehydrated - they just don't push sufficient liquids in these places. She told me that the Hospital had given Mum a couple of enemas to stimulate a bowel movement and had performed an endoscopy to inspect her inflamed innards. She thought Mum would be here a few days yet.

By the time I had to leave, Mum was doing much better and I didn't feel quite so conflicted about leaving her as I had before. I believe my visit helped the staff see that Mum wasn't some unwanted husk. Someone cared how she was doing.

A close friend just told me: "it's a good thing you were there for her today". And for once I feel able to accept that I have done something good for Mum.

82

2010-10-14T23:54:00.002+01:00

I'm let onto the household by F, a jovial Zimbabwean care worker, and we walk up together towards Mum. I see her looking at us both blankly, her mouth hanging open. I know she's been told I'm coming but I'm curious to see if she'll recognise me. Nothing. A few steps away, I relent and say "Hello Mum". She checks both my face and F's face before deciding that it was me who spoke. Then she beams.

It's her 82nd Birthday, and we admire the flowers sent by my Brother-in-law, open the cards that have come (significantly fewer this year, but still treasured). Then I open the huge box of clothes I've brought. I spent last night sewing labels into each and every one, and I've taken photos of them all. I'll be interested to see how long they remain in her wardrobe.

After lunch (and much birthday cake), I take Mum downstairs for a hair appointment. When the hairdresser is ready for us, I help Mum over to the washing station, noting that the seat she's been sitting on is now soaking wet. Mum is oblivious, and I wait until her attention is elsewhere before I find some paper towels and set about cleaning up. Dementia is like being a passenger in an aircraft coming in to land through cloud: it's rarely a smooth descent and there's no indication of how quickly the ground is racing up to meet you. This wet seat hits me like a little air-pocket.

Back on the household, F tells me that my visit has made his day and that what I've done for my Mum has warmed his heart. I'm always at a loss to respond when someone praises me like this. It's not as if I'm looking after Mum personally at home - that would be heroic. I feel guilty for accepting his high regard.

I'm not the pilot, I'm just another passenger on the plane.

leitmotif

2010-09-30T02:47:00.002+01:00

I'm sitting with Mum and other residents in the Lounge. Everyone has pretty much shot their quiver of arrows as far as conversation goes, and we're taking a break. My thoughts drift to how Mum has been relating to me today, as if I'm possibly her spouse but she's not quite sure.

I gradually tune in to the music playing on the stereo. It's Cliff Richard, singing:

   Son you are a bachelor boy
   And that's the way to stay.
   Son, you be a bachelor boy
   Until your dying day.

Just like on a previous occasion, it seems to me that a soundtrack is being scored to my life by a rather heavy-handed ironist. Evidently my story is intended for those without a use for subtlety.

The next track up is a version of "I Remember You". I try to keep my eyes from rolling. There couldn't be a less appropriate song to play in this household.

We are joined at the table by resident 'C', who notices that we are all absorbed in the music and decides to treat us to an old song I don't immediately recognise: "Around the world, I've searched for You..."

Mum looks lovingly at me and says: "I don't think I searched around the world to find you, did I?"

Actually, you know, she did precisely that. She travelled from Tokyo to the UK to adopt me when I was 2 months old.

I can't find the words to answer her right now and I just smile, and she smiles back.

   Around the world I've searched for you
   I travelled on when hope was gone
   To keep a rendezvous.
   I knew somewhere sometime somehow
   You'd look at me
   And I would see the smile you're smiling now.
   It might have been in County Down
   Or in New York
   In Gay Paree or even London Town
   No more will I go all around the world
   For I have found my world in you.

location location location

2010-08-15T11:58:00.000+01:00

I'm sitting at a table with Mum and two of the other more high-functioning residents. All three ladies are neatly dressed, articulate and plausible. All three look askance at the woman by the next table, still in her night-shift, which is wet and which she is asking me to feel. There is a hierarchy here - I'm sitting with the Heathers. In conversation, of course, all plausibility is quickly shattered. Each of these women is living in her own world, a world she has shored together from a heap of broken images, the shards of her life.

Heather no.1 brings the conversation back to her favourite anecdote. In her head, she is a young girl again, living at home in a large family of older brothers with whom we must all be familiar. They are evidently just out of sight for now but will be here soon. Her story is one where she scolds one of them and he shrugs his shoulders, looking sheepish. She swells herself up to mimic him. She finds the tale hilarious. I've heard her tell it for two years now. She is always happy, firmly rooted back home in the bosom of her family.

Heather no.2 drums her fingers on the table and tolerates this story. She knows that she is an adult and that she is retired. Just retired, in fact. And she recognises where she is, worked in the same building, in a different wing. Perhaps I know it? She worked "with the infants" (hospital or school, I don't ask). She is serious, professional, rising above those around her. Just occasionally she will betray a little nervousness as to our precise location. She names first one town and then another. I reassure her that we are nearby to both. Then the tape loop begins again and she's telling me that she used to work here. At one point Heather no.1 asks her a question, calling her "Nana", and she scowls.

Mum's preference is to listen rather than tell stories. Over the years, as her dementia grew, I think she learned to stay quiet and not volunteer information which might then be queried and lead to her exposure. It's only when I open my laptop and begin showing her pictures that she perks up. We go through the usual responses to my childhood pictures (adoring) and to pictures of her Husband (completely baffled). And then I show her a video of the approach to her last residence, her retirement apartment and ask her if she remembers it. She says, "That's this place, of course." I distract her and stop the video before it becomes obvious that she is wrong. It won't do any good to correct her, and I'd rather she believe she is home, too.

Each woman at this table addresses herself to me almost exclusively. I see their need for confirmation, for me to validate their conception of the world. They can't get this from each other because their realities conflict. For Mum and Heather no.1, they are both home and that's all that matters. As the property shows keep telling us, it's all about location.

bugger

2010-08-06T12:06:00.001+01:00

I posted a similar news story back in February 2009, but I'm linking to this new one because the probability of me developing Dementia, myself, seems to be increasing each time they release a study.

First they said that inactivity could lead to Diabetes, Depression and Dementia. Today's report is that you are more likely to get Dementia if you have had Diabetes and Depression.

Do they just look at "D" conditions, do you think?

If they cite Dandruff next I'm going to go ahead and book myself a room in Mum's Care Home.

maybe I didn't love you

2010-07-16T15:19:00.124+01:00

I've just come from a rather emotional counselling session where my relationship with Mum was, as it often is, central to what was discussed. As you might expect, one focus of the counselling is on finding reasons for my adult behaviour in what happened to me as a child. Today I told the story of "Mum and Blame", something I mentioned last year in a response to a comment on another post. Essentially, the story is as follows:

I've tried all my life to have my Mother comfort me but she wasn't really the warmest person and never seemed to be "on my side, no matter what", the way I saw other Mothers behave. If something went wrong for me and I was upset, I would invariably go to Mum for comfort only to have her make me feel ten times worse. I would reach for a hug and she would, in turn, reach for whatever explanation she could find to make it all my fault, even when it was actually no-one's fault and all I needed was some sympathy. As I've grown up, I've witnessed other parenting styles and I've come to realise that I never felt that either of my parents would support me or stand up for me. I didn't feel protected. In my late teens, I went through a phase of staying up late talking to Mum, trying to tell her as much about myself as possible. I hoped we were finally connecting, but all my confessions and confidences just got thrown back at me later, whenever it helped her win an argument. I think it's because of this that I'm sensitive to any talk of blame these days and always try and shy away from such talk. Looking back, I find myself playing psychologist and I speculate that Mum (on some subconscious level) panicked whenever I presented myself as unhappy and was unconsciously desperate to prove that whatever had happened wasn't her fault.

Anyway, on coming out of the session, I bought a sandwich and was heading back to my car in my usual dazed state, when I passed a busker on the street. He was singing a slow ballad, and I didn't recognise the song at first because I had only ever heard a "disco" version by "The Pet Shop Boys". As I strolled up the street, I didn't properly take in what was being sung:

Maybe I didn't treat you quite as good as I should.

Maybe I didn't love you quite as often as I could.

Little things I should have said and done,

I never took the time....

It was only as I passed him that I took in the words:

Maybe I didn't hold you

All those lonely, lonely times

Suddenly I was alert. I had the strange feeling of everything being in focus, the feeling that my life had become a movie, complete with an appropriate soundtrack:

If I made you feel second best,

I'm so sorry I was blind.

You were always on my mind.

It felt like a message. I wondered what the Universe was trying to tell me.

All I can say for sure so far is that it is true: I do seem to be always on Mum's mind these days. She has entirely forgotten her Husband, to whom she was married for 46 years, but she knows me and looks dotingly on me. The question is: can I accept the overflowing, unconditional love that she is suddenly showing me as having any value, knowing that it is only showing up now that some negative aspects of her personality have been deleted by the dementia?

Tell me, tell me that your sweet love hasn't died.

Give me one more chance to keep you satisfied.

I don't know if it's too late for me to accept this love as meaningful.

shape and hold

2010-06-27T09:45:00.003+01:00

Mum had a beauty appointment while I was visiting the Care Home this time, so I went down with her to check on the in-house facilities and record the experience.

Her knees are bad again this Summer, so it was easier for us to take Mum down to the salon in a wheelchair. I looked on as the Hair Stylist washed her hair and set it in rollers, before lowering the dryer over Mum's head.

Mum kept catching my eye in the mirror and grinning impishly, like a kid playing peek-a-boo. Whilst she was under the dryer, another resident arrived and the Hairdresser began attending to her at the next station. I caught Mum scowling at the drop in focus on herself. She glanced resentfully at the lady having her hair cut, before noticing me again and beaming.

Once Mum was out from under the hood, the Stylist set to removing the curlers and plumping the hair into loose curls. She explained to me that Mum's fine hair didn't seem to hold onto shape for very long. It struck me that even Mum's hair has a problem with memory.

I'm planning to ring the Doctor next week. I want to understand why he has decided against giving Mum another Cortisone injection in her knees. It worked so well a couple of years ago. I worry that maybe he's just trying to save his Surgery some money, thinking that no-one cares about Mum.

more poetry, I'm afraid

2010-05-25T14:26:00.005+01:00

best before

The yoghurt pot is four months past its date,

Her fridge a necropolis for foods

Forgotten, pushed to the back, replaced.

She wants a snack and thinks that this will do.

I tell her she should always check the label

This pot’s “Best Before” was back In April.

It’s August now. She hesitates and frowns.

“So? Then I can eat it”. She reaches out

And I see at last she’s lost her grip on time

And, with a shock, I understand that I’m

The one who’s failed to read the signs, who’s left

Something far too long until it spoiled.

jokes and old folks

2010-05-10T16:48:00.007+01:00

So, I'm downstairs in the Café below Mum's household, buying a Diet Coke, and I spy these jellybeans on sale beside the cash register. They're advertised as "Senior Citizen Pills", with each colour combatting an ailment or affliction associated with advanced years. I don't think it's a particularly funny joke - it seems pretty insensitive, in fact - but I don't feel like challenging the fundraising efforts of the Home.

Upstairs again, I'm sitting with Mum and a couple of other residents. As usual, I stopped and bought Mum some of her favourite chocolates en-route, and I'm folding the plastic bag to put it away in my pocket as she scrabbles her hand around in a big box of Maltesers.

"Oh, I was wondering why you had that bag with you," Mum says.

"I brought your chocolate in it, Mum." I say. "I'm going to hang onto it because they charge 5p for a bag in some shops now."

This prompts muttered outrage from the old folk in our circle.

"Yes," I say, "I always end up having to pay the 5p because I keep forgetting to take an old bag in with me."

"You could take me with you," says Mum, quick as a flash.

I have to say, her speed and delivery took me by surprise and made me look Mum in the eye. Maybe the fundraisers should leave the jokes to the old folks.

night terror

2010-05-05T13:36:00.000+01:00

Sometimes it takes you by surprise.

You've tidied up the mess, smoothed down the edges of your life, and you expect an untroubled sleep.

But then you wake up in the middle of the night in vertiginous wordless despair as, in your dream, your mind has intuitively grasped, for a second, the total horror of your Mother's situation: the appalling plummet from the full person she was to that unbelievably insulting parody sitting in the Care Home, spooling a few silly phrases endlessly on a loop, like someone's answer-machine that you ring long after they died, just to hear their voice.

And then comes the aftershock.

The thought that occasionally she might have a similar insight.

turbulence ahead

2010-04-25T02:13:00.013+01:00

I had a phone call on Thursday to tell me that Mum had "had a fall" just outside her room and was on her way to hospital to be x-rayed. I was tempted to get in the car straight away but I was advised to wait until the results were in. It turned out that there were no broken bones and Mum was back by the evening. I resolved to drive over on Friday.

I arrived in the early afternoon, and found Mum quite happy and not suffering any pain. Sitting in the Lounge, we had a cheerful conversation with a few of the other residents. Mum's face darkened a couple of times when she told me that she hadn't fallen but had "been pushed over by two girls". It was clear to me that she was referencing a childhood story that she repeats frequently, but the Home had launched an investigation into the incident on the basis of Mum's allegation. I was able to add some context there, hopefully saving them some trouble.

Life in the household is very calm these days. A couple of the more troublesome residents have moved on (one died, the other was placed in another home), and the atmosphere has noticeably improved. The staff have more time to spend with the residents and the residents, in turn, aren't annoyed or distressed by the old troublemakers.

However, there's a problem ahead.

The Home has decided to create a "High Dependency Dementia Unit" to cope with exactly such difficult cases. And they have decided that they want to base this Unit in Mum's household. The Relatives were "consulted" last week (I was unable to attend), but apparently the meeting went badly. The Home presented a fait accompli, telling the Relatives that the plan was going ahead - the specialist staff had already been hired. In turn, the Relatives told the Home that their elderly charges were happy and settled and were NOT to be moved. It seems that the Managers were a little stunned by the vehemence of the reaction. This might look like a stalemate, but I was told that they will simply wait for natural attrition and then move more "challenging" cases into the vacated rooms.

This means that the idyll is doomed.

Of course, this all comes down to money. There is FAR more money to be earned from the State in looking after difficult charges. I am bitterly disappointed that this organisation - a charity - is behaving in a fashion more suited to a business in seeking to maximise profit ahead of the wellbeing of its existing residents. I'm all for them starting up a new unit, but I wish they would leave their existing clients to enjoy a peaceful and relaxing end to their days. If only a "calm and pleasant" unit was prized (and priced) as highly as a "complex and unpredictable" one.

Mum could, of course, be moved to another household in the Home, but she would lose contact with the staff members on whom she currently depends, to whom she has grown close. Also, I chose Mum's room very carefully - it is at the end of the household, away from the noise of the Lounge and with a very pleasant view over the garden and a field. If Mum were to be moved to the first available room in another household, she is bound to suffer from the upheaval and she would inevitably be placed in a less advantageous room. As someone who is paying full whack for Mum's care, I feel outraged that decisions like this have been taken without my consent. It's like paying for a good hotel room and then being switched to a budget chain after a few nights.

I have made several attempts to speak to someone at the Home about this but have been fobbed off, told that someone will call me back, which doesn't happen. On Friday, I was told that the person who had been avoiding my calls was now on leave, but that the General Manager would speak to me later - he then left early. I am becoming annoyed about this. I intend to pursue this one and raise some publicity about what's happening.

school report day

2010-04-04T22:22:00.001+01:00

I found Mum sitting at the desk in the Lounge, having just taken a call from a relative. She couldn't remember who it was that had just rung off. Her Key Worker told me that it was her Cousin.

Mum looked well, but was wheezing and very out of breath by the time we got to the armchairs. Ever since my Father died from Pneumonia, I've been alert to low lung function, so I checked with the Key Worker, who showed me records to prove that Mum had been seen by the Doctor. Apparently, all is well with her lungs, so it's a bit of a mystery why she's short of breath. Mum and I sat there smiling and holding hands, with nothing much to tell each other about our lives.

The Key Worker took the opportunity to sit with me and go through Mum's 'Life Plan', checking that I was still in agreement with various protocols in place around Mum. The only one that had changed was that the sensor under her mattress now alerts staff immediately once she rises during the night, so that they can come and help her in the bathroom. Originally, the alarm had only sounded if Mum didn't return to bed within 10 minutes, giving her time to see to herself. She is past being able to cope now, and the Key Worker was quite frank that Mum is now essentially incontinent.

It was surreal to be sitting next to a beaming Mum all the time that this was being discussed. The Mum I used to know would have angrily denied most of the stuff we were covering. Sometimes it makes me feel so guilty that I find it easier to like this version of Mum. She's much more easy-going and non-judgemental.

We discussed Mum's activities. Mum always claims that they don't do anything, but it turns out that she goes to every single event in "The Venue": sing-alongs, poetry readings, bingo, movies and dances. I was treated to some charming anecdotes about her participation. It seems that Mum is going through a bit of a jewellery-flaunting phase, and regularly returns to her room to add another rope of beads or a broach to add interest. She's still competing for the attention of any young men who come onto the household, with a view to securing a boyfriend.

The Key Worker asked me what I thought of the ever-changing decorations around the room. I told her that I felt reassured, as a relative, to know that the staff themselves were taking the trouble to make artwork for the walls - this month the walls are alive with Easter Eggs and Bunnies and there were some South Park-esque wall decorations which included real twigs and artificial birds. I told the Key Worker that seeing the effort that the Care Staff put into the decorations helps me believe that they are committed to more than their shifts. This went down well because, apparently, the Management are considering installing permanent artworks and banning the "tacky decorations". I was asked to complete a questionnaire on the issue and I was lavish with my praise of the team's efforts. I made the additional suggestion that maybe the residents themselves should be involved in making the decorations, but conceded that this would probably require more staff members to supervise the activity.

This is when I learned that the Care Team are also resisting the Management's decision to cut staffing to the level of 2 workers per household. As the Key Worker told me, this would mean that the residents would be unsupervised any time that both workers were needed to lift or bathe someone. The staff are currently documenting everything that they do in an effort to justify the presence of the third staff member. I am somewhat alarmed that the Management is trying to cut costs in this way whilst the fees I'm paying rise ever higher.

Mum's overall 'Well-being' report was very positive: she's relatively active and participative, sociable and friendly. She shows some awareness and can ask for help. I left the Home in the evening, feeling happier about the Care Staff, who seem more attentive than they were last year. I've seen a marked improvement over the past months, since the Gerry Robinson TV documentary. Simple changes, like sitting down to eat alongside the residents, can make a huge difference in normalising the experience for everyone.

metaphor

2010-03-22T14:05:00.010Z

One of the consolations of Autumn is the glorious colour of a Maple. Last year, the display was a brief one in my garden - the leaves on my tree had barely turned red before they fell as one, overnight. It was a shock to come down to breakfast and see such a change in my elegant friend - the tree was bare, twiggy and forlorn where, only the day before, it had been demurely beautiful.

I was struck immediately by the metaphor that Nature was handing me for describing how I felt about Mum's rapid fall, and I've been working on a poem to capture and preserve that moment ever since. It may not be quite there yet, but since I've added it to my poetry blog Losing My Grip, I've decided it has a home here, too.

I'm not sure if the effect works, but I'm trying to capture the moment of epiphany I had. I start off ostensibly talking about a tree but, by the fourth line, I hope the reader understands that the subject is in fact a person. The title has been "Maple" and "Fall" before (I liked "Fall" very much), but I've reverted to "Mother" for now, to clarify what I'm doing. Writing down "At a stroke" gave me goose-bumps.

Mother

I awake to find a stranger in my yard.

The maple is naked, stooped in frame,

Bent over tumbled leaves spread below,

Like the jumbled paperwork on her table.

At a stroke, she has lost all vanity,

Stands bedraggled, gaunt and vague,

Oblivious to my pity,

Unable to account for yesterday.

a winter's tale

2010-02-20T23:53:00.003Z

It was a particularly cold Winter that year. The snow had fallen thickly on the golf course that lay between our home and the beach. Mum and I had spent the afternoon on the shore, picking up large sheets of ice from rock pools. "Lifting the lids" never got old for me, and neither she nor I noticed how late it was until, all at once, night had fallen. I remember stars in the sky.

As we crested the dunes, we saw that it was even darker inland. The golf course was a vast unlit area and our path home was obscured by the snow, which had drifted deeply and made a nonsense of the landscape. I held Mum's hand and we started forward across the suddenly unfamiliar territory.

As a kid in unaccustomed snow, I was still enjoying the adventure, but I could sense that Mum was tense. The lights of home on the horizon blinded us to the ground directly in front of us. We quickly lost our way.

We walked gingerly, our footsteps in the snow doubled, crusting and crumping.

As I remember it, Mum decided we should climb to the top of a rise to check we were still headed in the right direction. Once we had our bearings, we started off again but suddenly she WAS GONE from my side.

I was dumbstruck.

Beside me there was a hole - a Mother-shaped hole in the snow.

It was just like a 'Tom and Jerry' cartoon, when Tom runs through a wall and leaves his outline behind. Beside me was a hole that clearly showed two outstretched arms. It took a second for my brain to work out what had happened. Just as I heard Mum's outraged cry, I realised that she must have walked over the edge of a deep bunker filled loosely with snow.

For probably a full minute I was unable to help Mum because I was laughing too hard.

I'm not sure Mum ever truly saw the funny side, but it became a family story. It's been told so many times over the years that I'm not sure whether I truly remember the details or whether I'm recalling images evoked by the retellings.

And, of course, now the story has a poetic poignancy for me. Because Mum and I are wandering once again across uncertain territory, walking haltingly across a landscape of forgetfulness.

And so very often I feel the Mother-shaped hole at my side.

career choices

2010-02-04T22:53:00.002Z

Mum: "See that man over there? I think he's a Pilot."
T: "Really?" [confused]
Mum: "Yes, I think that's what he said."
T: "OH.... I've been thinking he was a PIRATE!" [clasps one hand to her eye]

And so ended the more lucid part of the afternoon's conversation.

* this week's wall art is 50s-themed. The staff do all the work themselves.

sold

2010-01-22T10:41:00.019Z

Mum's apartment has finally... finally sold.

I haven't wanted to jinx the process by posting about it before, but we found a buyer in October and it has taken this long to process, despite it being a cash purchase.

The buyer was a woman looking to relocate closer to her Son. I can see the wisdom in that, having myself undergone so much stress coping with Mum's deterioration over a distance of 250 miles.

The apartment cost Mum £195,000 back in 2002 and would doubtlessly have fetched well over £200,000 if I'd put it up for sale in 2007. While I concentrated on getting Mum settled, and fretted over my responsibility for the dismantling of her life, the market slumped. When I put the place on the market in last June, the agent suggested that I ask for just £175,000. I held out for £185,000 and we achieved a figure halfway between the two. After Estate Agent and Solicitor fees and a last-minute nasty surprise, I'm left with £172,000.

Not having a copy of the Lease, I was pretty disgusted to find out that we would lose a further 2% of the proceeds as fees to the Managing Agents for the property. These jokers really gouge the residents and provide a minimum of service in return and these 'transfer' and 'contingency' fees are outrageous. I'm tempted to remind them that their representative at this block is currently in court, accused of a massive theft from a couple of residents. I've been grateful that there was no publicity about this whilst I was trying to sell Mum's flat, but I've a lot less to lose by going to the papers now. I wonder if they might let these charges go?

Up until this week, I had been intending to use the proceeds of the sale to buy another property and then rent that out to cover the shortfall in Mum's Care Home fees. Specifically, I had decided to purchase the house I am living in, enabling me to be free to relocate whilst also keeping the asset in our family (this house is set to appreciate in value due to a nearby development). I was getting quite giddy exploring my options. However, I've taken advice from a Financial Advisor and concluded that the best place for Mum's money is an Insurance Bond (a "with-profits bond with income"). If I invest the full amount, we will be able to take up to 5% interest out each year as income. What's more, the money will be tax-free and not counted towards any future Revenue means-testing. At the moment, 4% just about covers the shortfall.

So, that's the end of that. Even though it was not our family home, it feels odd to let the place go, and I still feel a vestige of guilt whenever I act on Mum's behalf in financial dealings. It's a similar feeling to when I'm in an airport and walking through the "nothing to declare" Customs channel. Although I've never had anything to hide, I still always feel guilty and end up forgetting how to walk casually, and I probably look shifty as hell whilst attempting to broadcast my innocence. I found myself doing a similar thing with the Financial Advisor.

christmas 2009

2009-12-25T23:41:00.002Z

I arrived around 4:30 in the afternoon to find Mum's household quiet, with half the residents out on family visits. The lounge was dripping with decorations and the dining area set up as one long table, where a buffet was being set up. The Lead Care Worker was dressed in Santa garb. She told me that Mum had suffered a little accident today.

My heart skipped a beat, but she quickly explained that she'd visited Mum's room earlier to find that she had vomited copiously everywhere, having entirely scoffed a large box of biscuits. (Hmm... I think that must have been my Brother-in-Law's gift). Apparently, Mum had been very distressed that I might find her in this state and they'd spent time restoring the room (and Mum) prior to my visit. It's still strange for me to imagine Mum being anxious to impress me - it seems so backwards, but I guess I'm the Parent now.

We found Mum asleep in bed, with a bad case of bed-hair (there will be no portrait of Mum this week). I gave her my present, which was a mostly a selection of size 16 clothes from Marks & Spencer, and I set to work ironing in some identity labels. Mum sat on the bed, looking adoringly at me and chatting away.

We moved through the standard checklist of conversation that comes up every visit nowadays:

1) have I heard from my Sister?

2) how is my job going?

3) who is that man in all the photographs on the walls?

answers: (1) "nope", (2) "umm" and (3) "your Husband of almost 50 years"

Mum's reply to answer (3) was, "Really? I never thought I'd hang onto a man THAT long!" (It's becoming apparent that Mum was something of a Man-Eater in her early years).

When I'd finished doing the labels, we walked down the corridor to the Lounge and joined the rest of the residents, who were sitting watching "Happy Feet" on TV. Mum introduced me to everyone.

In light of the documentaries I've watched recently, it was interesting to note that the staff members on duty were busy up the other end of the room getting on with their tasks whilst the residents were left in the care of some animated penguins. When I sat down amongst them they all became a bit more animated themselves and each of them was keen to have some interaction with me (I've noticed that they mostly ignore each other). They'd ask me how the penguins had been trained, or where penguins lived, or whether the penguins were really talking, because it seemed like they were talking... Each of them looked very happy that I was there to respond to them and I saw the truth of what Gerry Robinson had noticed - the importance of someone simply being there responding to the residents rather than merely servicing them.

However, it's obvious that there IS interaction at other times and I think the Care Home had done a good job of Christmas this year. The decorations were pretty amazing and spoke of a lot of effort expended, and I heard that there had been Carol Singers and parties in other households leading up to the big day.

Merry Christmas, Everyone!

behind closed doors

2009-12-22T22:33:00.000Z

London: The Saatchi Gallery

I'm at the top of the stairs, looking down into the basement gallery at the exhibit "Old Persons Home" by Sun Yuan and Peng Yu. A dozen or so very lifelike old folks are patrolling the floor in motorized wheelchairs. "Lifelike" isn't really the word because every one of these figures is either slumped forward in sleep or keeled over in death. The chairs are fitted with remote sensors to prevent collisions. They edge across the room in an endless dance of seemingly random charges and parries.

I'm the only visitor in the room, and I don't think the young gallery attendant has noticed me. She looks bored and is repeatedly stepping in front of one of the old guys, frustrating his attempts to move forward out of a corner. The hyperreality of the figures and the pathetic futile motions of this old fellow to get out of his trap begin to work on my emotions and I suddenly feel I'm witnessing a cruel case of casual bullying.

What previously was a gratuitous one-joke artwork suddenly means something more disturbing to me. I want to know that nothing like this is happening to my Mum.

a lovely little stranger

2009-12-14T21:15:00.016Z

I watched a couple of excellent Dementia documentaries on the BBC this week.

The first, "Can Gerry Robinson Fix Dementia Care Homes?" was a terrific exposé of how even what I'd consider the better care homes can fail to stimulate their charges. Gerry Robinson, an industry 'fixer' toured examples of both high-scoring and 'failing' homes (although I've seen a lot worse than those shown in the programme). In one very interesting case, 2 homes were owned and operated by the same man: one excellently at £750 per week and the other 'failing' at £400 per week. The difference in the staff and their willingness to sit with their residents was marked. Gerry Robinson caught hold of this crucial quality-of-life issue and ran with it, grasping that a happier atmosphere would encourage both full occupancy and better staff retention, improving life for the residents AND ensuring a profit for the owners. This particular owner, however, failed to support his staff, penny-pinched over their meals and fretted that his care homes hadn't been quite the cash-cows he'd hoped for. The camera lingered over his £4m stately home and high-end cars as he whined.

The second documentary I saw also focussed on stimulation as a key to the care of those with Alzheimers. "Alzheimer's: The Musical", part of the 'Wonderland' series, centred around the retention of song memory long after other functions are long gone and the "Singing for the Brain" initiatives that exist in parts of the country. There were scenes where some quite far-gone and unreachable sufferers became animated by the sing-along and participated so vigorously that they became indistinguishable from their partners and the volunteers beside them. The documentary included many poignant stories of couples involved and gave, I believe, an accurate picture of people today coping with partners with Alzheimer's.

One participant, Ted, talking about his wife, Hilda, crystallised how I think about Mum sometimes:

"I can't reach her. She's gone. She's disappeared... She's a lovely little stranger, but that's all she is, really"

lick

2009-12-01T22:26:00.003Z

"I've got a Teddy Bear in my room. I walked into the shop and there it was, looking right at me. And it was only £10, so I said 'I'm going to buy that'."

Mum's talking about the Bear I bought her for her Birthday 6 weeks ago.

We are the stories we tell ourselves. Mum is recycling herself.

It's slow work. There are pauses of over a minute in the middle of sentences where she scans the remote horizon. Sometimes she frowns, sometimes she chuckles, sometimes her expression is quite blank. On a couple of occasions I am just about to break the silence myself when she resumes.

"Do you know, I was on this train travelling to......London. And these older girls......... they pushed me off it....?"

This happened just recently, she tells me.

"And I was in hospital.......and I came around and I said to the Doctor 'they licked me' and he was very surprised...."

Mum's family moved to the UK from Cambridge, Massachusetts, when she was around 10. The "licked/hit" confusion story has been a family anecdote all my life, but I've never heard the origin of the injury before. There may be some truth in this.

However, as the morning progresses into the afternoon, it turns out that each of several different stories Mum is telling ends with the same incident, the hospital confusion over the word "lick". Gradually, Mum begins to get the punchline wrong, until it's only the words "lick" and "Doctor" that indicate she's telling the same tale.

Mum's pauses in speaking seem beyond rumination, they are like a re-buffering, a re-spooling of some tape within her head before she can go on. They remind me most strongly of the way she's been walking for months now: several steps followed by a pause where it seems she cannot recall how to make a step at all. I'm beginning to recognise it as a signature in Mum's dementia.

birthday girl

2009-10-14T23:53:00.007+01:00

This year I really struggled to think what I could get Mum for her Birthday. She doesn't read books anymore, can't follow movies, doesn't seem to care for music, new clothes wander immediately, and it seems I already turn up each month carrying twice her weight in chocolate. As the day approached I could feel myself panicking and I reacted in my normal way: I ignored the problem, left it until the last minute, and hoped for inspiration.

And so there I was wandering around a Department Store en-route to the Care Home, looking in just about every section. Eventually, I settled on.... a Lava lamp. A pretty lame choice, I suppose, but it was something I'd had in the back of my mind since seeing "The Savages" last year - I remembered Laura Linney turning up with one for her Father and thinking that it would be a soothing item for Mum's room. I also bought her some Chocolate Gingers and Turkish Delight (her two favourites), a pretty Birthday Cake, a flashy Birthday Card and (on impulse) a Teddy Bear.

I arrived at the Home in the evening of the day before Mum's Birthday and checked into the guest suite. Before bedtime, I decided to test the lamp (just in case) and it was then that I realised I'd made an error: the leaflet in the box declared that the Lava lamp should not be operated beyond 6 hours a day. I knew this was a stricture that Mum wouldn't be able to follow reliably and my heart sank. I went to bed thinking, "I'll have to return it to the store and take Mum with me to chose something more appropriate." I berated myself for buying something for Mum that was really for me - exactly the sort of glamorous treat that I'd always wanted as a child but was never allowed.

By the time I awoke, my sub-conscious brain had provided the answer: all I needed was to buy a timer-plug to turn the lamp on and off. So, I headed into Mum's household with all my gifts. Mum was sitting with a box of chocolates and a large bunch of flowers, both from my Brother-in-Law. She's always thrilled to see me these days but, with gifts to open as well, she was quite overcome. She reacted somewhat bemusedly to my Lava lamp but LOVED the card and the Teddy Bear most of all. I wondered how parents feel when their infant children play more with the packaging than the expensive toy.

Note to self: keep it simple and sentimental in future.

For the first time in a year, I took Mum out for a drive. I had been so freaked out last year at her 80th celebration, where she had an "accident" whilst out, that I'd not dared risk it since. So we made it to the Department Store and I took her around in a wheelchair, pointing out things I thought she'd enjoy while Mum scanned the floor for young children - Mum is enthralled by toddlers.

I must confess, it's cute to see the reaction of a small child in a buggy as they look at a grown-up person being pushed around in a larger version of their own chair...

At Lunch, in the store restaurant, Mum was already asking about dessert before her main course arrived. She ate a few chunks of seared tuna and a couple of boiled potatoes before putting down her fork and looking at me quizzically. I turned parent and told her that she must eat her greens.

I had to laugh 20 minutes later, when she was scoffing the last bit of green decorative icing from a carrot cake and said (without irony): "I must finish this green, here."

I'm really glad I arrived the night before and got to spend time with her in the morning. Mum was on relatively good form before lunchtime, but by mid-afternoon her personality was unravelling and she was erratic and I was fractious. Our second toilet stop of the day saw me having to get a bit more hands-on than I'd hoped (surely a rite-of-passage for any Son), but I coped far better than I thought I might and wasn't half as scared as I was a year ago.

Our day together was effectively over by 4pm. Although I was there until evening, Mum was only with me in body.

will he be there when we get home?

2009-09-18T10:57:00.005+01:00

Our relatives, D&G, visited Mum yesterday.

D was a bit glum on the phone this morning. She said that it had been saddening to see Mum so confused and lost for words, that there had been less of the "woman she was" there.

As usual, they had eaten lunch together in the restaurant downstairs from Mum's flat. At the end of the meal, when they were getting up to leave and take her up again, Mum asked, "Will Greg be there when we get home?"

For me, that one little sentence is so rich with pathos that I can hardly bear it.

If I was counselling someone else in my position about this I would probably try to reassure them that they were at least remembered and wanted. But it doesn't help. I just feel so desperately sad.

love and alzheimer's

2009-09-04T22:11:00.002+01:00

"Is there anything I can bring you next time I visit?"

"No, I don't think so, Dear,...unless...."

"Unless?"

"I'd like a Boyfriend."

I smile, keeping my response "That's two of us!" to myself. Mum's just told me that she is 35, so I'm guessing that I'm not an "out" man this week.

At the next table, two of the residents have been a couple for the past year. In previous visits I've been a bit concerned that the man of the two was a bit overbearing - I worried that the woman had been coerced into this relationship. Tonight, it suddenly strikes me that they're the two least deteriorated residents in the room, and I wonder if their mutual focus and companionship is somehow slowing their descent. I wonder if Mum grasps this on some level. Mum is a tenacious survivor and has an almost infallible instinct on health matters.

I know that there will be many many cases of loving partners who have watched their spouses slide away into dementia, so I'm not naïvely suggesting that love can slow this disease. However, there is an intensity and focus required when one is courting someone (as I dimly recall). Wooing requires a special effort to present oneself at one's best and take pains to learn and retain as much about the other as possible. These are both strong tides to resist in dementia. If there's something in this, I envisage a task-force of gigolos and 'ladies of easy virtue' to be activated and sent into Care Homes up and down the land.

I think it's time for me to rent the movie "Away from Her"

fan club

2009-07-17T14:31:00.010+01:00

Mum clasped her hands and beamed at me, besotted, gasping "Oh... aren't you handsome!"

That's a nice start to a visit.

I'd brought my laptop and a movie chronicling the city of Liverpool over the past 60 years or so. I'm not sure whether Mum genuinely recognised anything. I had thought she might respond to the sequences onboard the "Overhead Railway" (nicknamed "the Dockers' Umbrella"), which is where she and my Father first met, but the only point where she made a comment was when there was a shot of the New Brighton Lido. I'm confident that this was only because I've given her photos of herself as a 20-something, posing at the same Lido.

Afterwards, when I set a slideshow of photos going, Mum was quick to recognise herself in most shots but didn't know either her Husband or Daughter. I find it requires a little tact to reintroduce one's Mother to one's Father. I do it in a matter-of-fact way, not registering the shock I still feel when Mum has forgotten him. It's clear that, until corrected, Mum is minded to consider ME her Husband.

I stayed overnight for the first time - there's a free guest suite which I found an oasis of calm. I'm going to start doing this in future, as it will allow me to spend longer with Mum instead of worrying about my return journey within a couple of hours of my arrival.

As I signed out at Reception the next morning, a lady with a Zimmer frame passed, screwed her hand forcefully into my behind and gave me a sailorly wink.

I've found my key fan base - 80 and female. I've been looking for love in ALL the wrong places, it seems...

fatter transferrence

2009-07-10T02:25:00.012+01:00

As some of my readers have been kind enough to comment, I've managed to lose some weight since February (5-and-a-half stone, which is 34 Kg or just over 75 US pounds). I haven't talked about it in my posts because this blog is about Mum.

However, it's just occurred to me that something very strange is happening here. You see, as I've lost weight.... Mum has suddenly ballooned.

Now, while my weight loss took 4 months (see here for a picture of what I looked like before), Mum has piled a LOT on in just one month. I'm concerned. Of course, she's had a very big appetite since she arrived at the Care Home in December 2007 and I was grateful to see her fill out a little from the tiny skeletal bird I rescued that year, but she's been healthy-looking since, up to now. Suddenly, in the space of a month, it's almost like her face is drowning in a sea of flesh and I struggle to recognise her. Thankfully she is carefree.

Is this a sign that another prop has given way in her mind, that some autonomic system that regulated her weight is now lost to her? I know it's easy to join the dots to see how this has happened: Mum eats a lot of pudding and isn't getting any exercise. But why gain so suddenly? Why now?

Fantasy time again: did Mum take my fat away from me? Did she selflessly take it and store it on herself?

Did I have a "Mummy-tuck"?

wishful thinking

2009-06-25T13:18:00.013+01:00

Sometimes, as I drive over to see Mum, an idea comes into my head: a poignant fantasy that stops my heart for a moment and I have to shake my head and try and ignore it.

In this fantasy there is nothing actually wrong with Mum and she's actually just pretending.

As the movie violins kick in, I dream of a Mother who saw that her Son was holding back on his dreams because he was worried about leaving her behind when he went off on his travels. She cleverly faked her slide into Dementia in order to fool him into placing her in Care.

I know it's solipsistic and stupid, worthy of a daytime soap-opera plot, but the emotion behind it is strong for me, and I invariably get quite teary-eyed and short of breath thinking about it.

And I know why. It's the idea that Mum could be selflessly maternal. I realise that I've spent my life testing her maternal instincts and she's never passed that test. It seems there's still a child within me who still needs his Mummy.

I spend a few minutes with Mum and the fantasy evaporates. She really isn't pretending. I feel sadness for her, of course, but some also for myself.

the power of now

2009-06-21T23:39:00.004+01:00

I made another trip to visit Mum today, taking along six more picture frames.

I had spent a lot of time during the week choosing the photographs to include, getting them professionally printed and then arranging and re-arranging them in the frames [I have serious issues to deal with at home just now and I find that spending all my time doing something for Mum is a great way of ignoring my other responsibilities. You can't feel guilty when you've been side-tracked doing something nice for someone who is helpless.]

Apart from one set of 3 recent portraits, all the pictures were taken from our time spent living in Japan and India. Here I was, nailing our past to the walls, trying to cling on to a family's memories. Mum, meanwhile, was attempting to swallow an entire Toblerone in one go with the minimum of chewing.

Once we'd both finished our tasks, I reclined on the edge of the bed whilst Mum sat in her chair by the window.

Mum asked me how my job was going. I told her that I hadn't worked since December.

What was I doing for money? I was living off savings for now.

Did I still want to go travelling? I couldn't do that until I'd seen her apartment sold and the funds invested for her.

Had I heard from my Sister recently? No, not for a few years now.

These questions always come, and we chant through the same call and response every time, as though at a Church service. I'm no longer frustrated or alarmed by this; there's something comforting in the familiarity of the routine nowadays.

We sat and listened to the birdsong coming in through the open window. Mum sighed and said how much she liked sitting in the window alcove and looking out through the trees and across the field.

I had been listening to an Eckhart Tolle audio-book on the drive over, and I was struck by how Mum's condition means that she follows his precept of living only in the present moment. For Mum the past is equally as unknowable as the future, so she is neither troubled by bad memories nor concerned over what's to come. She doesn't go crazy from boredom or terror because she exists only on the cusp of now, seeing only her present circumstances. Meanwhile, I stew and fret and spend most of my time daydreaming about a future I could most likely never afford. I could learn a lot from this woman.

On my way out, Mum introduced me to everyone as her Husband.

one day you'll write about me

2009-05-19T17:23:00.004+01:00

The other night, someone very close to me reminded me of a story I'd told her about Mum a while back.

Mum and I went through a rough patch in my 20s, as I first disappointed her by coming out as Gay and then by dropping out of University. Almost overnight, I turned from being the star pupil she could hold up as her achievement to a mortifying embarrassment and a source of family shame. Apart from one letter where she scolds me for bringing the threat of AIDS into her home and tells me that I'm "wrestling with devils on the edge of an abyss" I didn't hear from her for over a year and things were strained between us for many years afterward.

Mum was aware that I had ambitions to write. Indeed, as I struggled to define myself I found that writing aided me greatly as a meditative exercise, helping me distinguish feelings that I'd hitherto been unable to articulate, including feelings about my Parents. They were not curious people, however, and showed little interest in what I produced. I kept my poetry to myself, in the main.

However, in later years, whenever Mum found herself in the wrong on some issue, she would invariably try to distract me from her inability to apologise by saying:

"Some day you'll write about all this, won't you? You'll write about your terrible Mother."

And I would insist that I had no intention of doing so, that the events themselves were traumatic or tedious enough as they were, and why the hell would I want to experience them all over again by writing about them? To me, it seemed like Mum was accusing me of a betrayal, and that it was simultaneously somewhat arrogant of her to assume that she merited my efforts as a biographer. Most of all, I didn't like that she was implying that I could be vindictive in that way. I sincerely meant it when I said I'd never write about her.

Only now, it seems that I've made her my subject after all.

Life is one long joke at our expense.

recycling remembering

2009-05-17T12:37:00.016+01:00

Recently, within an hour of joining my local "freecycle" network I saw someone advertising a Dymo label machine which I gratefully picked up. I was at Mum's place yesterday, putting pictures on the walls and adding labels to each picture.

I didn't want to turn it into a quiz for her, so I resisted the urge to put her on the spot and ask, "Who is this?" about each picture, but I did note anything that she volunteered. True to the stereotype about memory and age, she had no clue about the pictures of her grandchildren, but identified her own Father right away. She pointed to a large portrait of her Husband and said that she liked that one of Dad, but then a few minutes later she asked me who he was and guessed it might be a picture of me. I understand her confusion in a way - I fill the function these days of being the provider, the closest family, the most important male figure in her life.

I'd also brought over all our family photo albums which I discovered last year locked away in a trunk and obviously forgotten about for a decade. I encouraged Mum to leaf through them. She was far more intent on demolishing some Turkish Delight I'd bought, but at my prompting she picked up the same album again and again, making the same comments about the same pictures. She didn't recognise herself in the photos from Japan, adamant that she had NEVER tinted her hair in her life so it couldn't POSSIBLY be her. I told her that photographs were great for showing us that all of us can forget the darnedest things.

I was pleased to see that when she DID find a picture that excited her she very much wanted to take the album down to the Lounge and show it to them all. Mum has found a new peer group, a new set of friends, a new family.

I waited around until dinnertime and, whilst Mum was eating a hearty meal, I took out the laser spirit-level, electric drill and plasterboard fixings from my bag and fixed a large Japanese screen above her bed. It's something that I've debated doing for a long while - the screen is ancient and painted on very fragile paper and there's a danger that it will be damaged here. But it's mostly out of reach of poking fingers above Mum's headboard and I feel I need to acknowledge her life with this little touch of exotic luxury. I want to proclaim that this is a person who has lived an unusual life and seen wonderful things.

And if it doesn't outlast her I won't be too upset: it's not something I've felt comfortable having on my own walls these past few years - it didn't feel "mine". If I am going to go off travelling later this year it makes more sense for Mum to enjoy the screen rather than it going into a storage facility.

And perhaps there was another motive behind my decision. By choice Mum has lived within bare walls for the last 10 years. After Dad died, she moved to a newly constructed apartment and got rid of so many family possessions, favouring bland modern furniture over items I'd grown up with, things that we had bought or had made for us whilst we were living overseas. I suspect that she chose this Care Home because it was brand new, too. I often wonder if Mum's memory might not have stuck around longer if she hadn't so willfully scrubbed these physical reminders from her vision. I hope I've done the right thing in trying to put some of the memories back on the walls around her.

spare me your charity

2009-04-28T21:36:00.007+01:00

A couple of weeks back, our relative D rang. She and her Husband are briefly back in the country from one of their long trips (I think this one was South Africa again). Anyway, they'd been over to see Mum and D had noticed that Mum's wardrobe was pretty depleted. I told her that I was well aware of the situation and that I'd bought clothes for Mum at Christmas which had also quickly wandered.

"Well that's not good enough, Greg! Just not good enough!" she said.

I told her that I knew the Home would always dress Mum and that, at the moment, it didn't seem a good idea for me to go and spend any more money on clothes when I was really struggling to make Mum's monthly payments just to keep her there. Mum's pension income falls short of her Care payment by about £600 per month. I've successfully applied for a Government allowance that covers a little more of the ground but there's still a shortfall and, until I've sold Mum's old apartment we're down to our last couple of thousand pounds.

D absorbed this and said, "Well, what if I were to buy your Mum some clothes?"

I told her that I'd be very grateful because we could use the help and, particularly since she would have a better idea of what to look for in skirts etc. I thanked her over and over for her generosity.

D rang me today to say that she was heading back to see Mum on Sunday and that she'd been shopping. She listed a few items that all sounded good. She kept mentioning how much she'd spent (£107) and how well she'd done to get this or that discount. It's no coincidence, I thought to myself, that the wealthy have a zest for a bargain. Finally, she told me that she'd bought some perfume for Mum, too, and said "I mean I bought it - that's from me."

I got a sinking feeling.

She asked me how I planned to "settle up" with her for the clothes.

[pause for breath]

I'm lucky it was a relatively small amount, I suppose. I counted to 5 in my head and told her that I'd send her a cheque right away and I asked her please NOT to buy any more stuff for Mum as neither Mum nor I can really afford it.

I'm thinking of writing a parable where someone's "help" ends up putting the benefactee out onto the street.

woman's hour

2009-04-17T14:39:00.009+01:00

Back in December 2007, when I was settling Mum into the Care Home, I read that the place would be officially opened in mid-January by Jenni Murray, a well-known presenter of BBC Radio 4's "Woman's Hour". Mum used to listen to this show every day during my adolescence, and I thought it would be a treat for her to meet this star - and it might bolster her appreciation of just how special this new place was.

The day came and I remember ringing Mum in the evening and asking what had happened that day.

"Oh, nothing much. No, I can't think of anything we did."

I felt sad that Mum had missed out on the big event.

So imagine my surprise a week or two ago when I was signing out at Reception and I happened to look up at the TV screen they have there showcasing the place. I saw that Mum featured in picture after picture. And there, indeed, was Mum with Jenni Murray, sitting at the dining table, standing in the doorway to her bathroom. It seems that Mum was pretty central to their promotional activities.

Anyway, I asked them to forward me some shots and here are a couple. Bear in mind that Mum looks a lot better these days, now that she's eating better and has access to a hair-dresser (the in-house salon had no staff at this point).

closing the closet door again

2009-04-12T20:44:00.006+01:00

"Oh, don't you look handsome with a beard!" says Mum, as I enter her room.

I've been bearded for 2 and a half years now, and Mum wasn't so complimentary back in 2006. This is just one of those plausible comments that Mum makes which disguise her lack of any true memory.

I hand her a large Easter Egg and notice fresh flowers in the room. She tells me that she has no idea where they came from. After a few exchanges, we fall into a conversation about the telephone and how she's just not using it (I haven't seen any billed calls for a good 10 months now). I ask her if there's anyone she'd like me to ring and I'm unsurprised to hear her nominate her Cousin. I dial the number and get through and am astonished to hear that the Cousin visited Mum only last week (so that's where the flowers came from). It's really great to hear that another family member has visited Mum. Before I hand over the phone I get to hear all about how well Mum looked and how lovely the building and facilities are.

After the call, Mum announces that she'd really like a boyfriend, though she's unsure that a suitable candidate is going to turn up any time soon. I tell her that I feel exactly the same way, and she stuns me by asking me 4 times in the next 10 minutes if I've met a nice girl recently. I'm trying not to correct her these days but just work with her reality, so I find myself making the sort of throw-away excuses I had to make to relatives all through my teens and twenties.

who's who

2009-03-22T22:31:00.001Z

We're sitting downstairs in the café, for a change. I'm wolfing down a huge salad I bought en-route and Mum is eating her way through my gift of a box of Krispy-Kremes. As usual, I have asked what she's been up to these past few weeks and she has no idea.

Then suddenly she says: "We saw a movie yesterday. It was called [Mum's name]"

I put 2 + 2 together and realise that the DVD slideshow I made for Mum's 80th Birthday has re-surfaced. It seems that she watched it this time.

Upstairs, the Chief Care Worker tells me that Mum watched it with a few others and they were asking who everyone was and she was narrating each photo. They're mostly the same pictures I put in her digital photo frame which, as usual, I have to turn on when we get to her room. The first picture that comes up is my Father in his 20s, about the time that they met.

"Now, you'll be able to tell me," she says, "Who is HE?"

moving along

2009-03-09T22:49:00.006Z

Mum has been using a walking frame for the past few weeks. Unlike the one here, hers has wheels on the two rear legs. I remember her adamance, in years gone by, that she would NEVER accept one. But, as with everything around her these days, Mum thinks the frame is marvellous. She is blessed that her particular brand of Dementia is the Pollyanna variety. Looking around at the faces at dinner time I can see compulsion, fear, torpor, disorientation, even malice. Mum floats above it all, serene.

But we have less and less in the way of conversation these days. She cautiously asks me how "work" is going, and I can tell she's feeling her way through a dark cave. In pity for her I decide not to be a jagged rock wall and tell her that work is going fine. In turn, she has no news to report, even though I know they had a comedy troupe visit them only today in the run-up to a national day of charity fund-raising.

In the couple of hours I'm there, she only needs the toilet once, which I take as a sign that she is less nervous around me tonight. I watch her glide off slowly down the corridor to her room, standing ramrod straight with the frame before her - as if she's holding onto the rail of a launch which is ferrying her across the Grand Canal.

I count her steps - at every 6th or 7th step she will hesitate, as if suddenly she can't recall how to move her legs.

money, money, money

2009-03-06T17:01:00.005Z

I drove down to Sussex again last weekend, determined to tackle the last of the jobs that stood in the way of disposing of Mum's old apartment. The place has been empty now since I cleared it of furniture last Summer, and I've been slack in tackling these last few issues. Of course, I wish I'd been able to get things moving with a sale last year, before the credit crisis and subsequent slide in the housing market. It galls me to think that, for the sake of a few cosmetic touches prior to sale, I've watched the value of the place slide by probably £40,000 (possibly more).

Anyway, it's all done now. My biggest concern was the bathroom, which looked tired and unhealthy, with a badly-stained carpet and flaky and swollen MDF cabinetry. Over the course of Sunday and Monday, I sanded and painted the woodwork and cut and fitted a new carpet, whilst clearing the cupboards of the million things that I'd actually left behind the last time I thought I'd "emptied" the place. I worked into the early hours, cleaning every surface as I went (not bad going for someone on 700 calories per day at the moment!) I think the bathroom is acceptable now, and hopefully won't put off any prospective purchasers. Still, those are expensive repairs, when I think about it.

It was one of those "my life is guided" weekends. If I hadn't been at the apartment, I might never have known, but I chose to go on the spur of the moment and ended up witnessing a dramatic event. The Warden/House Manager there, who has been wonderfully supportive over the past 4 years, was arrested for stealing blank cheques to write out for himself. The aggrieved parties had copies of cheques retrieved from their Banks, and I saw them written out in his unmistakeable handwriting for figures in thousands. One Lady, since deceased, had lost £92,000 to him. The place was in uproar. The Police held a meeting in the Lounge to inform us of the progress of their investigation and to exhort us to check our Bank records.

I feared that Mum would have been a victim, given her extreme disfunction with money, which I'd often discussed with the House Manager, but I've since had a look at her records and can't see any suspicious large cheques, thankfully. It still feels quite unreal. I don't think I should upset Mum by telling her about all this and spoiling her fond memories of the man, but at the same time she is the only person I know that I could discuss this with and I'm still reeling with the shock of it all.

The flat is now listed and it's a question of waiting to see if there's any interest out there.

I'm doomed!

2009-02-17T10:50:00.001Z

BBC News: Inactivity link to mental decline

one from the vaults

2009-02-07T15:47:00.006Z

I was tidying up my study again last night (the clutter only makes me worry I've already started with the 'brain diabetes'), and I found a piece of Mum's correspondence from July '07 in a box I was emptying. It was a letter giving Mum permission to go ahead and remodel her bathroom at her old apartment, with the Leaseholders waiving the fee of £41.12 [story here]. Her returned cheque was attached.

As I prepared to shred the cheque, I noticed something odd about the numbers. Why had Mum put two decimal points? She had written "41.12.0". Looking over to the written side of the cheque, I realised with a shock that here was evidence that Mum was already 'time travelling'.

Mum had written the cheque out in pounds, shillings and pence. UK currency went decimal in 1971.

If I'd seen this at the time I think I'd have felt a mixture of panic and victory: panic that things were indeed heading downhill and victory that I had some proof to take to Mum's Doctor. Nowadays, with Mum blissfully detached from worldly affairs, I can look at this as a curiosity and smile: Mum's in a good place.

alzheimer's "is brain diabetes"

2009-02-03T11:04:00.002Z

Click here for an article on the BBC News website which reports on research into links between Type II Diabetes and Alzheimer's.

A spokesman for the Alzheimer's Research Trust says:

"People with Diabetes are at higher risk of developing Alzheimer's. It is well known that insulin affects how the brain works, and this research adds more evidence to the possibility that Alzheimer's could be a type of brain Diabetes."

Bugger

Guess which blogger was diagnosed with Diabetes in November...

All this time I've been thinking that I was lucky to be an adopted child, with no genetic legacy to worry about from Mum. It seems like Mum was on to something when she suggested that I move into her Care Home with her.

wordle

2009-02-01T04:07:00.004Z

This is the first time I've followed a "meme" (if that's the right word), but I was curious to see what would come out in the wash if I put the entire text of "Wits' End" through the Wordle "Word Cloud" generator.

The result is fairly predictable and not that revelatory. However, it's good to know that I haven't strayed far from my topic, by the looks of things. I'd say this was a fairly good representation of my jumbled brain at the moment, too.

veronica

2009-01-26T11:15:00.006Z

I've not had much to report for the last month, which is good news in one way.

This morning my impish iPod gave me a nudge in the form of Elvis Costello's "Veronica".

"Do you suppose that waiting, hands on eyes,

Veronica has gone to hide

And all the time she laughs at those

Who shout her name and steal her clothes..."

I never imagined, back when this single came out, that this would ever become my reality.

christmas

2008-12-25T09:23:00.001Z

I'm not spending Christmas Day with Mum this year. Bringing her to my home isn't possible any more: she wouldn't be able to manage the stairs to get to the bathroom. Besides, over the past year she has increasingly looked lost or unhappy when out of her new home and has visibly perked up when returned to its familiarity. The alternative is for me to spend the day at the Home with Mum and the rest of the residents (yes, they're all celebrating Christmas there rather than going to their relatives). I must admit that I'm choosing me this year and spending the day cooking a big meal with friends.

Merry Christmas All

[photo is the doorway into Mum's room, with cards]

a confession

2008-12-24T17:24:00.012Z

I visited Mum yesterday and shopped en-route for some new clothes for her, as a Christmas present. It was pretty exhausting trailing around the various stores looking for her taste in light summery clothing in creams or beige when everywhere is stocking heavy winter party clothes in black and purple.

This leads me to confess something that I've held back on writing about all year. I've considered myself pretty honest and open about everything on this journey, good or bad, but there's one thing that I haven't recorded out of shame and that is what has happened to Mum's clothes.

When I moved Mum into the Home this time last year, she had a very fine wardrobe of clothes - in fact she had so many that her wardrobe doors could not quite be shut. Within about 6 weeks I was noticing that individual items were missing: I'd come to take Mum out for a meal and think "I'll just get Mum's favourite warm top" and it wouldn't be there. The lead Care Worker on Mum's household would say "Oh, it's probably in the Laundry", but these things never turned up again. By Autumn this year there seemed never to be anything in Mum's wardrobe at all, and I noticed that Mum's jewelry box had been forced open by someone who couldn't work out the hidden catch. Mum was invariably wearing something that I didn't recognise when I visited, and I felt dreadful about it. However, since Mum was content and oblivious to all of this, I didn't mention it to her.

But, you see, it's all my fault: I should have labelled all Mum's clothing before she arrived. I had, in fact, bought sew-in labels over the internet and had them ready. But in the days before she went into the Home, when she was living with me, I was run so ragged in dealing with Mum minute-by-minute that this was the one last job for which I never found time, and I handed Mum and her clothes over to the staff in a state of exhaustion.

I've since felt so guilty about all Mum's lovely clothes going missing. I know they weren't lost in the laundry - someone took them and I think I know who. I arrived unannounced once and walked into Mum's room to find the lead Care Worker coming out of Mum's en-suite bathroom with the jewel box in her hands. I can't prove anything and I don't want to cause any problems because this is someone who is very attentive to Mum and is the only person Mum knows by name. I know that Care Staff aren't highly paid, and I'm sure it's tempting to relieve someone like Mum of her nice things since she is unlikely to notice.

So, along with the hundreds of pounds of clothing I bought yesterday,

I bought a laundry pen and sat in a car park writing

Mum's room number and name on the washing tags of each and every top, cardigan, slip and panty. I have no illusions that this will prevent the cashmere cardigan from disappearing, for example, but at least this time I've done what I can.

sticking to the story

2008-12-05T18:12:00.005Z

My relatives, D&G visited Mum today.

D rang, as usual, to give me a report. It seems that the cortisone injections to Mum's knees might be doing some good, because Mum was no longer confined to a wheelchair and was getting about with the use of her stick again. Apparently Mum was very bright and cheerful and seemed better than at the big party a few weeks back. They shared a nice meal in the Bistro downstairs where Mum apparently ordered Cumberland Sausage only to say "I don't like sausage" when it was served. [Mum is quickly becoming the Child I will never have]

D said, "I hope I didn't put my foot in it, but I mentioned about you leaving your job and she didn't know anything about it."

I told her that I'd planned to keep the news from Mum until I had confirmed my arrangements. There's no sense in confusing Mum with plans about travel when I might be held up for a few months selling her apartment and getting my own affairs in order. D reassured me that Mum had very quickly said, "Oh, well he was never happy in that job anyway and I've told him for years that he should go overseas."

Whilst that isn't quite true, I was glad to hear that Mum was tacitly supporting my decision.

When I rang the Home, however, I heard a different story.

Apparently, Mum was in tears and very distressed after D&G left, worrying that I had been "sacked" and would never get a job again. I spoke to Mum and told her that I hadn't been sacked, that the company had offered us all a package and that I had decided to go for it so that I could do some travelling. By the time I mentioned travelling, Mum had already forgotten the package and was saying "but you'll need some money for that". I think there's going to be some turbulence ahead for Mum as she remembers fragments of this conversation. I've explained the situation to her Care Worker so that she can correct Mum when she distresses herself.

As soon as I've worked out what I'm going to do I'll have to start telling Mum a stripped-down version that I can repeat and repeat like a bedtime story until she knows it by heart and owns it.

what do you do?

2008-11-12T22:51:00.004Z

I almost forgot one funny thing. As I was leaving last night, one of the Care Staff asked me what line of work I was in. I launched into the always convoluted explanation of what it is exactly that a Management Consultant does.

She stopped me by saying: "Oh your Mum told us that she thought you were a Butler."

What? WHAT? Where on EARTH did THAT come from?

Mum never ceases to surprise me.

I was born under a wand'rin' star

2008-11-12T14:03:00.007Z

[image from the ever-inspiring postsecret]

I accepted a Voluntary Redundancy package from my company yesterday. My life is going to change in the coming months and this is likely to affect my contact with my Mum.

The office where I signed the forms is about 10 miles from the Home where my Mum lives, so I travelled on afterwards to see her. I think it prudent to drop in unannounced from time to time.

As I came into the Lounge, I spotted Mum leaning out of an armchair, her attention fixed on a conversation taking place at the dining table. She was smiling, rapt in fascination, and I was instantly glad that she is here now, surrounded by activity, and no longer isolated and unvisited in a flat 300 miles away.

Mum was delighted to see me and started introducing me to everyone: staff and residents that I already know by name, having met them dozens of times over the past year. Mum told me that she kisses a picture of me every night before bed, although she's previously told me that she does that with a portrait of my Father, so I'm not sure if she wasn't a bit confused.

I started going through Mum's 'Life Plan' folder, signing my name to observations and suggestions made by the staff: the Home is very diligent about telephoning every time the Doctor prescribes new medicine, but they were keen that I leave some written record of acknowledgment.

So I was sitting there, turning the pages and reading about Mum's mobility problems and thinking about my own mobility plans - the possibility of doing some traveling once I've worked my notice. Just then, one of the Care Staff walked behind my chair, talking with an IT technician about a webcam.

I had intended to ask about emailing Mum from wherever I was in the world, but it turns out that they've just installed a webcam on the computer in the Lounge, so I might even be able to chat to her face to face from Outer-Whereveristan.

I'm not superstitious normally, but it's moments like these that make me feel guided by angels.

big badda boom

2008-10-26T23:46:00.004Z

So we had the big family do today: the one that my relative D organised to celebrate my Mum's 80th in front of the wider family.

My day didn't start too well. I'd been up until 2am burning a slide show to disc and setting it to music (a desperate attempt to regain some sort of input in a day that had been taken out of my hands). I woke at 7am and hurried across the country to pick up my Niece, only to find that I could have slept in an extra hour since the clocks had gone back the night before... We got to the Home in good time and found Mum in her wheelchair, unable to take a single step now, so that I had to lift her up and place her in the car seat. She made horrible noises of pain even though I was as gentle as I could be.

When we got to the venue, it was beginning to spit with rain, but I had my golf umbrella prepared. Mum still complained that she was getting wet [ * important]. We got her inside and found that the function room was upstairs and there was, of course, no elevator. Mum announced that she needed the toilet and my Niece and another relative took her into the Ladies. Then the relative came out to tell me that my Mum needed a new skirt and underwear [ * Mum had thought it was the rain making her wet, but it hadn't been]. I drove back to the home with D, where we ended up having to search the laundry for clean underwear.

Back at the Inn, some male relatives had supervised Mum's ascension to the upper floor in her wheelchair, carried aloft like the Queen of Sheba. My female relatives got Mum changed and we began the meal. The food was excellent but Mum was pretty out of it: she didn't really recognise anyone save me and D and didn't take part in any conversation. I had to cut up her food for her. She was falling asleep before the dessert came.

We trooped back to the Home, where the Function room had been laid out very nicely by the Care staff for the second half of the celebration, where Mum's fellow residents could join us. There was a full buffet but none of us were hungry any more. Mum was quite bewildered now and didn't seem to understand where she was: she kept saying that she would need to go upstairs to use the toilet, and I couldn't make her understand that she was back home now and mere metres from her own facilities. While everyone else enjoyed the slide show, Mum couldn't keep her attention on the screen and ended up looking sideways at something else.

It seemed to me that poor Mum was being put through an assault course of demands and psychological disorientation and, not for the first time, I questioned who this was all being done for.

By 6pm the relatives were beginning to say their goodbyes and I had formed two conclusions about the day:

(1) I was glad that the wider family had finally seen where Mum is now living, and were impressed with the facilities

(2) D had learned that she can't do this to Mum again (I made sure she acknowledged it out loud)

An odd thing happened to me today. One of the new additions to our family by marriage is a capable chap I'll call C. During his student years he had done a stint working with the elderly and infirm and he spent the day being very practical and take-charge. He was wonderful with Mum. After a year of coping single-handed with this situation, it seemed like I was constantly chasing my tail today, running around looking for my car key (in the ignition), thinking that someone had stolen my umbrella (again in the car), losing the DVD with the slide show (again in the car). I was hot and sweaty and confused and I found myself wiping tears from my itchy eyes and telling C that I believed his competence was allowing me to finally let myself go to pieces a bit.

the hole in the wall

2008-10-25T11:26:00.005+01:00

My last entry provoked an anonymous response which I found both comforting and illuminating.

The Commenter, who is in a remarkably similar position to myself with regard to her/his Mother, reassured me that my feelings of coldness and distance are sometimes a necessary protection for the Carer.

But I was particularly struck by a wonderfully apt description of how it feels to talk to our relatives with dementia:

"It's like I'm trying to talk to her through a hole in the wall and the hole is getting smaller and smaller."

I would have been delighted to come up with such a perfect simile. Somehow, for me, the more precisely I can describe an event or situation in my writing here the more tolerable I find it. I can only hope that my anonymous friend gains an equal comfort.

grief and guilt

2008-10-23T23:27:00.011+01:00

Just to lighten my mood [!], I've been reading Andrew Holleran's novel, "Grief". It's a Platonic exercise in which a rather thin plot exists to enable various archetypes to hold forth on their particular experience of or views about Grief, so that the book ends up investigating the subject from many different perspectives. I know, I know... it sounds like a real riot. For me, it's a return to a writer I used to venerate in my 20s.

Anyway, there was a statement midway through the book which caught my attention, since it brought to mind something that I've often thought about since my Dad died:

"When your parents die, you know, your audience is gone. You really have no one who cares about what you do. But I think somebody has to care about you - someone has to think you matter"

When my Dad died in 1999, I was already writing in my journal that it was the end of historical certainty for our family. I already knew that my Mother could not be relied upon to recall events from our childhood or even from the minute before. She was no longer a reliable Witness to our lives. I didn't yet understand the reason for that in those days, but I knew for sure that Truth had died with my Father. And for that I grieved. Now, of course, the situation is closer to what is described in the quotation above. Even though my Mother is still alive, she is not there to care, in any real sense, what I do. There is no point, indeed, in even telling her things that would only serve to confuse her. She's not even sure who I am, sometimes, unless the staff have been reminding her all morning that I'm on my way to see her. I visit her as I would her grave. *

There's also another pertinent remark, in the final pages, which I won't quote other than to say that it points out that a Carer can potentially make an expiation of their lot, assuaging some guilt through a situation which allows them to act selflessly. This idea hit home, hard. All along I've felt a degree of unreality about the way I've cared for Mum. My actions were outwardly those of a loving Son, but I felt cold inside and experienced a growing guilt about that disparity. It has slowly become easier for me as I've done more for Mum. Maybe I feel that I am a slightly better person for having done all this for her, or maybe I've just got better at presenting the facade and it's comfortable to hide behind it, a small mean unworthy thing rattling around inside a shell.

At some point, does it even matter any more what motivation, or lack of one, lies behind a caring action?

*[I'm shocked that I wrote that]

birthday: part II

2008-10-14T23:38:00.008+01:00

Mum was inching her up the corridor to her bedroom when I arrived. She was unable to work out how she could turn around to greet me so she froze, clinging to the railing with one hand and holding her stick in the other. Her face was bright red and peeling, as if from a bad sunburn. A staff-member told me that they'd found some face products in Mum's bathroom again - she's under instruction not to use these as they encourage a fungal infection that is inflaming her skin.

Mum's white hair and red face seemed cruelly mocked by her white blouse and red skirt.

I gave her my arm and we slowly made our way to her bedroom. I've never seen her move so slowly and in so much pain. I kicked myself for not buying her a 'walker' rather than this silly photo frame.

When we got to her room, I let her use the toilet in privacy, but she had to call me inside since she couldn't find the toilet paper or the toilet flush (she was turning to her right when both are to the left).

I sat next to Mum on her bed to show her the digital photo frame. The first picture that came up was one of Mum and my Dad. Mum poked the glass, leaving a smudge over his face.

To my horror, she asked: "Tell me, who's he?"

I died inside.

We watched just about all of the 400 or so photographs as they displayed. It was so difficult to keep Mum's attention on the slideshow, as she kept looking away to the bathroom door. I found myself announcing what we were seeing, because hearing her pathetic guesses was heartbreaking. By the end she was getting better at spotting childhood "Greg" but she occasionally turned to me when my Dad came up and said "that's you, of course." Mostly, it seemed, she just wanted to go to the toilet again.

Afterwards, I got 2 plates and some cutlery from the kitchen and I cut us each a slice of the cake I'd brought. It was a shame to cut into it, but it proved to be equally delicious as it was beautiful. Mum didn't use her fork but instead grabbed chunks of rich chocolate sponge and chocolate truffle sauce by hand and crammed them into her mouth, making a mess everywhere. When she had eaten most of her slice she became distressed looking down at her chocolaty hands and told me that she couldn't understand how they'd become so dirty. I fetched some napkins.

After cleaning her up and helping her down to the Lounge again, I started to feel very sad and I decided that I had to go. In any case, I was supposed to be at work this afternoon and it was already 4:30pm. I had a two-hour journey home ahead of me, followed by a delayed "afternoon shift" that would take me through to midnight or later.

On my way home I pondered my unhappiness. I realised that I had put myself through a LOT of stress to get every detail perfect for someone who could no longer appreciate these things. Who had I really been doing this for? Myself, maybe? Mum would have been happier to be taken out somewhere instead. It's late and I'm exhausted ... I'll have to come back to this.

* I have chosen photographs that make Mum look a LOT more lucid than she proved today because I just can't bear looking at the ones I've discarded.

birthday: part I

2008-10-14T12:00:00.000+01:00

I've spent the last week in a continual panic, trying to cope with an increasing workload piled on top of me by my increasingly unavailable Manager. At the same time I've been trying to get everything in place for my Mother's 80th birthday (today).

As I've mentioned before, one of my relatives has taken it upon herself to organise a family get-together for Mum at the end of the month, and has taken the preparations so far out of my hands that I have not been allowed to invite Mum's closest relation "because there's not enough room". In many ways, what's being planned for the end of the month has little to do with Mum any more and is really about my relative, who always exhausts herself micromanaging these things and then has a nervous breakdown at the event, when her guests want to do their own thing, and declares that she's never going to organise ever again!

I decided that I couldn't let today go by without marking it in person, just Mum and me.

To that end, I found the most wonderful cake at the weekend, which is a chocolate sponge surrounded by what look like Shoji screens. The chocolate bird's nest and rose are somewhat over the top, but I'm excited at the prospect of eating gold leaf!

I also bought a rather expensive but elegant Sony digital photo-frame and I've spent the last 4 nights delicately teasing photographs from albums (quite scary when they've been glued for decades) and scanning them into my computer in order to transfer the images to the frame. I was up until 4am Friday, Saturday and Sunday night, and 2am last night, working until I couldn't safely wield the blade any more. Last night I painstakingly re-titled the images with numbers, hoping to display them in an order showing Mum's lifetime, but when I finally came to upload them at 2am this morning, I found that the frame's slideshow ran according to other criteria and photographs from the 1940s and 50s were, for some reason, distributed across the other decades.

Oh well, nothing I can do about it now. And the photos do look amazing. I hope she doesn't cry. I've telephoned the Home and made sure that they're expecting me. They've agreed to present their own birthday cake with the evening meal, so that mine is the first that Mum sees.

It's midday and I'm about to set off.

Happy Birthday, Mum!

birthdays

2008-10-06T10:02:00.010+01:00

My 13-year-old Niece stayed with me this weekend. Naturally, Grandma was a topic that came up in conversation.

I was explaining to her that Grandma often gets her muddled up with my Sister, and will typically dredge up a story from our 80s schooldays and attach it to my Niece's name. I explained that it wasn't just her, though, and that Grandma sometimes thought that I was still at school, myself.

My Niece told me that last year she'd received a birthday message from her Grandma that said, "Happy 24th Birthday!" It was hard not to be slightly amused at that one. I sometimes wonder what it must be like to grow up with a dotty Grandma. At least my Niece will know what's happening if her own Mother begins to get things wrong.

Mum's 80th is just over a week away. She's finally caught up with the age that she's been telling everyone for the last 3 years. We're having a family get-together later in the month. I'm planning to scan a pile of photographs and make her a DVD of memories which we'll project onto a wall during the event. I think I might buy her one of those digital picture frames for her Birthday and load some of them onto that.

if the shoe fits

2008-09-26T12:31:00.003+01:00

I'm on the phone with Mum:

"These slippers I'm wearing are too big, they're slipping off."

She's told me this a few times now. Last time I visited I checked and there was no looseness as far as I could tell, but I made a play of unfastening the velcro and pulling the fold-over tighter, and then Mum was content for another half hour until we went through the same process.

There's little point in me telling Mum that we had to buy them big because her feet were very swollen at the time and may well be again ("Really?" she'll ask, professing ignorance), or even that the velcro can be adjusted ("Well, I didn't know that!"), but I usually do go ahead and explain anyway.

This time she started relaying what I was saying to a member of staff. It went something like this:

"You can adjust them to make them tighter, if you want, Mum."

"Really? Oh... He's telling me that they fit"

"We had to buy them that size because your feet were so swollen a few months ago."

"I don't remember that."

"So... all you have to do is unfasten them and then pull the fastener over a bit further to make the slipper tighter."

"He's telling me that this is a company that takes pride in being one-size fits all and that these are special shoes that can fit anybody..."

I'm almost tempted to speak any old rubbish into the phone if she's going to make it all up anyway.

the right to die

2008-09-19T20:31:00.004+01:00

I noticed this story on the BBC News website today: once again someone has suggested that those with Dementia should be allowed to end their lives if they feel they are ‘a burden’ to others.

This brings back memories.

When my Father died nine years ago, I went home to help Mum with the funeral and ended up staying for a month. I had to go through all their papers as part of my role as Executor. Hidden away in one part of the study I found a stack of magazines from the Euthanasia Society. It turned out that these were Mum’s. She tried to tell me her feelings on the matter, which I suspected were somewhat parroted. Having just lost Dad, my sympathy with these ideas was not great. I rather angrily threw the magazines away with the junk.

Over the intervening years, Mum’s concern shifted from wanting to end her life at a time of her choosing to being terrified that she might be cremated alive. “When I die I want you to make sure that I’m dead,” she would anxiously tell me and I would picture myself hesitating over her prone body with a hammer. She even asked her Solicitor if she could put a stipulation about it in her Will, but we pointed out to her that by the time the Will was read it would most likely be too late. We talked about a 'Do Not Resuscitate' order, something I'd seen countless times whilst watching 'ER', but nothing was ever drawn up.

Now that Mum has Dementia, if anything I feel more resolute on this issue.

You see, I know that Mum can be so very easily influenced to believe strongly about just about anything. She is incredibly dependent, not just physically but mentally; so much so that I need to be extremely cautious what I say around her. Her ‘Self’ is so wispy and undefined these days that any strong statement from me could distort her into someone unrecognizable. I’m not going to be using words like ‘burden’ around Mum, ever.

And just because Mum is losing her wits, it doesn’t mean that she isn’t capable of enjoying the attention and stimulation she’s getting at the Home. She’s happier now than she’s been for a few years.

If Mum was sound of mind and suffering from something incurable that was only going to get worse and more painful then sure I would countenance her right to make an informed decision about the manner of her passing. But she lacks the ability to make such a choice now.

My reaction to this news story is based entirely on my experience of one individual with Dementia and I'm not claiming any authority on the subject. I haven't even read the originating article that prompted the news report. I just worry about less sympathetic carers influencing their relatives or clients for nefarious purposes. It's a gut reaction and I may revisit this subject another time.

I will survive

2008-09-09T00:25:00.004+01:00

Folks, can I point you to a new link in my side bar for the blog 'citygirltalks' ?

I've linked specifically to one post because it's a history of her Mother's long illness all in one entry and it's all useful. There's some of it I know already and some I hope never to see personally. I find it very moving and I love the sentiment at the end:

" you will survive. "

Thanks, Citygirl.

(by the way, although I've linked to the one entry, there's plenty more to see in her blog)

now and then: a visit

2008-09-05T16:17:00.009+01:00

My Brother-in-Law and my Nieces were in the country last weekend (one of my Nieces is starting school in the UK). I picked up Mum and took her to see them. Here's a photo of Mum with my Neices (that's me hunched down behind the chair). We spent a lovely afternoon together eating, looking at photos and catching up.

On the day it seemed like business as usual, with me shepherding Mum through hurdles (physical and mental) as patiently as possible. In some ways I could see a deterioration in her: I had difficulties helping her up the steep stairs in the house whenever she wanted to use the toilet, and she told a story about giving away a toy dog 3 times while we were there and a further time on our drive back. But I just smiled and let it pass - Mum hasn't got so many stories these days so I should let her enjoy those she can still remember.

However, looking at this picture I am struck by how much happier and healthier Mum looks now. It sends me back to the following pictures I still have on my phone, taken last December when I decided that I needed to intervene in Mum's life.

a dream

2008-08-25T16:32:00.005+01:00

In my dream this morning, I was with Mum at a construction site of some sort, maybe apartments. We were wearing hard hats. Mum announced that she needed the toilet, so I was taking her upstairs to the nearest one. She was out in front of me. I remember a spiral staircase and then a balcony area that wrapped around a central atrium. Then Mum sped up and got away from me, lost. I was running around corridors looking for her.

A year ago this would have been a nightmare. Today I just woke up thinking about Pacman.

times are hard

2008-08-21T17:21:00.006+01:00

Mum had some visitors today.

D just rang me to tell me that she and my Uncle spent a pleasant afternoon with Mum, taking her out to lunch at the place where we will be hosting her 80th Birthday party later this year. D said that Mum appeared well. They had asked her if she was settled and happy and she had assured them that she was, and had extolled the staff and facilities.

D said, however, that Mum was noticeably quieter than on previous encounters, and that it had been difficult to engage her in conversation. Also, Mum had seemed a good deal more confused than at their last meeting.

For instance, Mum had announced that they were now forced to sleep two to a bed at the Home, and that the lady sharing her bed last night had rolled over and fallen to the floor.

When I heard this, I wondered whether this was Mum time-travelling back to her Depression-era childhood (Mum was born in 1928 in Boston, Massachusetts).

D told me that she had questioned a staff member at the home and discovered that the doubling-up idea had originated with Mum's neighbour, who cannot find her way back to her bedroom in the evening and had wandered into Mum's room and exclaimed "do we have to sleep two-to-a-bed now?" The rolling out of bed incident had had happened to another resident ('screaming lady') a few weeks ago.

D told me that when she questioned Mum's version of events, Mum had become uncharacteristically angry and insisted that it had happened exactly as she had described.

folly

2008-08-08T17:00:00.007+01:00

I just checked and this little pile of boxes cost my Mother £300 (reduced from £480).

The boxes contain pills to combat hair loss (something that Mum obsessed about constantly whilst all the time losing something much more important).

I rescued these (and there were several times this many) from my holistic holocaust a while back, when I threw away all the 'alternative' potions and pills, lotions and sprays I found all over Mum's flat, all of them opened and then stuffed in a drawer, most of them out-of-date.

I rescued these because of their name. I know that it refers to hair, but I'm struck by the irony of "folly grow".

nobody home

2008-08-07T14:11:00.007+01:00

It's taken me 8 months to clear Mum's old apartment.

I live 5 hours away by car and I'm usually too exhausted to drive down at the weekend. Those weekends I could spare I've usually visited Mum in her new place rather than get on with this job.

But now it's done. All I have to do is call a handyman to come and touch-up some woodwork in the bathroom, replace the stained carpet there, get the place professionally cleaned, and then I can put it on the market.

Mum was living in this flat for 6 years but you wouldn't know it. She refused to have pictures on the walls, preferring to stack family portraits beside the boiler in the hall cupboard. Maybe she found blank walls soothing. Maybe they mirrored the growing blankness within.

6 years ago, I can remember being annoyed by what seemed Mum's meekness, her wish not to disrupt the authority of the plasterwork. Now I'm grateful that I don't have to have the place redecorated for sale.

Thanks for making it easier for me, Mum.

Bstrd Lady

2008-08-07T12:34:00.004+01:00

Yesterday I was down in Sussex, finally clearing the last of Mum's possessions from her old flat.

On the mantelpiece I found a list Mum had drawn up of all her fellow residents and their flat numbers, perhaps when her memory for names was faltering. Looking down the 27 names, I saw 'Joyce', 'Dori', 'Vanda', 'Barbara'........and 'Bastard Lady'.

I was highly amused. Growing up in this family I certainly never heard my parents use such a word, so it's comical to find my prim Mother even thinking of it. I wonder what the lady in flat 2 ever did to Mum?

Anyway, I spent hours moving heavy trolley-loads out of the flat and taking them either to the charity shop or the local 'household recycling point'. The corridor from Mum's flat is long and twisty and there are double doors at the exit that were hard to navigate on my own with a trolley. Directly by these doors is a communal lounge, where a group of about 15 residents were sitting and passing the day together. I recognised Mum's neighbour and several other faces. I got a nod in return for my 'hello'.

No-one asked about Mum.

No-one stirred to help me with the doors.

Bastard Ladies

back to school

2008-08-01T17:04:00.008+01:00

I haven't seen Mum for a few weeks and I can't go this weekend.

Even though I've already visited her more times this year than the past 5 put together, it's hard not to feel guilty.

I give her a call. As usual, at the other end it sounds like they're having a great time, laughing away at something as Mum comes to the phone.

"Bums on seats!" I hear someone call out as Mum settles herself.

We have the usual generic conversation, necessary as she can't recall anyone's name there or any activities she may have been engaged in. Typically, Mum gets caught up in the conversation around her for a bit and I'm left with one side of the discussion until she's prompted to talk to me again.

I'm just telling her that I'll visit her next weekend when she stuns me with: "Yes, it's difficult for you with you being at boarding school, isn't it? When you come it can only be for a few hours."

This is another example of Mum explaining the world to herself with the available fragments of memory. It's 33 years since I was at boarding school (a miserable and traumatic period for me), where I was only allowed out for a few hours on a Sunday.

Recently I've tended to visit on a Sunday and my visits have typically been from lunchtime through to early evening. So I can see why that particular jigsaw piece seemed like a good fit for her.

It's still a shock whenever she does this, though. And shocking in the context of our family, where my incarceration has never been discussed as it used to upset me so much. Her mention of it felt like a slap but I know it was entirely innocent.

The irony is not lost on me that I've now been the one to uproot her and place her in a Home not so very far from that dreadful institution...

Munich dreaming

2008-07-10T19:35:00.003+01:00

Folks, I'm on holiday in Germany (I know... it seemed a good idea at the time), so I've little to post at the moment. I'm trying to keep my mind off Mum for a week, but it's difficult.

Today, I thought of a way to convey Mum's odd deja-vu moments to you.

Here's the scenario:

We're driving down a country lane. Suddenly a fleet of flying saucers cross the road overhead. I slam on the brakes, my mind boggling and my heart pumping.

I can guarantee that Mum's response would be to say:

"You know I was just thinking that they always cross in THAT direction."

simalacrum

2008-06-26T10:40:00.005+01:00

Phone conversations with Mum are increasingly bringing to mind the Turing test.

Her conversation is plausible on the surface, but after a few exchanges I'm aware that Mum's responses are generic fragments of her former speech, crusts of old sentences tossed into the mix, comments that would imply credibility were it not so easy to spot the prompts in my news that have triggered each facsimile phrase. There are so few of them that it's easy to anticipate what's coming up next.

There is no familial nourishment in these conversations, no sense that I am communicating with another soul. Her larder is quickly emptied of stock expressions and Mum ends the call or suggests that I talk to a member of staff. It's almost as if Mum is conscious that she's taking a test and wants to keep it short to avoid exposure. I'm left feeling that I've missed a connection.

family wedding

2008-06-11T04:49:00.006+01:00

My favourite member of staff at the Home had made sure Mum visited the hairdresser, had bathed her and had picked out and accessorised an outfit for her. She told me that Mum had been asking every day of the week whether Greg was coming. It’s gone into Mum’s 'Life Plan' * now that they don’t tell her about anything more than 24 hours in advance.

In the car, Mum turned to me and asked, casually, how things were “back home” and then asked after the health of a couple of relatives who have been dead for 12 and 30 years, respectively. My heart sank a little: Mum was trying to prove competence again, which is seldom a wise tactic on her part because she inevitably proves just the opposite.

Or maybe she was just time travelling again and was visiting a time when these relatives were alive - in that case, who was I?

At the Church, I helped Mum down the steps and we shuffled up the aisle, past our remaining family. I saw a couple of them visibly shocked at the transformation in Mum as I helped her gingerly into a pew. For her part, it didn’t seem like Mum recognised anyone at all.

After the Service and the confetti and photographs, we made our way to the Reception venue (a 20 minute car journey). En route, Mum asked me 6 times where we were planning to go for lunch. Each time she had no recollection of a wedding or where we might therefore be going. Irritated, she took to pointing out things in the villages we passed through, saying how she’d seen whatever it was last week and was amazed that it hadn’t moved. This is something I’ve noticed Mum doing for about 6 years now – she experiences unshakable déjà-vu and treats my logical proofs that she’s never been there before with unconcealed disdain.

At the Reception, Mum ate unenthusiastically, glancing at me in her inscrutable way and replying in the vaguest terms to questions from other guests. She lasted longer than I had anticipated, but a couple of hours after the meal she’d had enough and suddenly asked to go.

As we said our goodbyes, I stood beside her and quietly announced each person as they came up to her, but she didn’t seem to register either names or faces. She didn’t even appear to understand the significance of the girl standing in front of her wearing a big white meringue…

Safely installed back at the Home, Mum gained confidence and gave me the first true smile of the day. I sat with her for an hour or so and she regaled me with the usual stories about the other residents. Here she was happy and engaged and interested in what was going on around her, in a way that had been lacking all day.

[*a continuously-updated document stating Mum's memories, relationships, life events and her wishes and needs]

dialling down

2008-06-04T12:51:00.005+01:00

I get an itemised phone bill for Mum from the Home every month. Over the last 6 months I've noticed that I'm the only person she's telephoned in the whole period. I've urged her to ring the friends and relatives in her phone book, but obviously to no avail.

On the plus side, at least there is enough stimulation in the Home that she doesn't feel the need to ring Directory Enquiries every few minutes for the human company. That proved very expensive last year.

On the negative side, I'm saddened that she has lost the knack of staying in touch with her friends.

The latest bill arrived this morning. There are only 10 entries in all. Looking down the list, I see the 4:45am call that disturbed me in April. After that there are a couple of calls and then signs of a further decline. I see variations on my number, where she's made single-digit mistakes, or repeated a digit.

After that she is dialling too short, with a 5 digit number, a four digit number...

The final attempt is '01'. That was a couple of weeks ago.

table manners

2008-05-19T17:56:00.005+01:00

Mum’s looking at me with an inscrutable expression. It’s quite unnerving. Every time I look up from my plate she’s staring at me.

After a few minutes of yes/no conversation, we’ve lapsed into silence and I’m (as usual) worrying what it means and (as usual) concluding that she’s upset and unhappy with me over her change of circumstances. I hold her look for a second and it feels awkward. I pull a face. After a few heartbeats she raises her eyebrows slightly. A minute later we’re doing it again.

“I’m wondering…..whatever happened to that gorgeous little boy I brought up.” she says, eventually.

After a stunned moment, I realise that this isn’t a snide remark. I think she really is having a little trouble recognising me as Greg.

Mum’s worrying me this week. She’s very frail and uncertain, hesitating over her knife and fork, looking to me for cues, reaching for her glass when I take a drink from mine. She seems nervous and out of her depth. How much longer will I be able to take her out to restaurants like this?

Getting up to go, she needs one hand on my arm and the other holding her stick. She does a sort of stationary jig before we set off, like she needs to wobble her legs into motion.

Tokyo... 1968-70

2008-05-10T12:37:00.006+01:00

I have no idea what age I was here - maybe 2? Anyway, I like the composition. The girl on the right was called Hisako and took to me as if I was a little white-blond puppy. Dad was the local Vice President of an international US travel firm and he and Mum hosted lots of cocktail parties for ambassadors and visiting Hollywood stars. I tell everyone that being exposed to Judy Garland and Ethel Merman at such a vulnerable age explains everything...

incomprehension

2008-05-10T12:14:00.008+01:00

Mum's still a bit croaky and on anti-biotics, so here's another letter from last year. When I registered my Power of Attorney over her affairs, I was surprised to find a new account in her portfolio: a telephone account, requiring a password to operate. I was surprised, as this wasn't Mum's sort of thing, so I closed it and moved the balance back into her savings. My guess is that someone from the Bank's marketing department had rung Mum and persuaded her to open this account.

Anyway, amongst all the scraps of paper that were piled on her table or her desk was this letter from the Bank, listing the details of the new account:

Notice that Mum has written: "This offer not taken up" at the bottom of the page. She didn't understand what the letter was about. She thought it was an offer which she decided not to accept when in fact she had already accepted it and this was a confirmation of that decision.

I find that note poignant, a little bit of administration where Mum is trying to demonstrate herself in control of her own affairs but simultaneously showcasing her incomprehension.

write it down

2008-05-05T12:47:00.005+01:00

Mum was a bit croaky over the phone this weekend, so we decided that I should visit next week instead. So here's something I turned up whilst trying to clear my 'Mum' in-tray. I picked it up from her apartment last time I was down there. It's a letter that was sent to her last year to inform her of an appointment for a scan.

As you can see, it's heavily annotated by Mum, mostly with the same two phone numbers over and over. From my experiences with Mum, I'd say that she kept finding this letter on her dining table, getting concerned about the arrangements and ringing the number at the top of the page. They would have given her the correct number to call (already shown at the bottom of the letter), which she noted down before ringing. Mum's written down the number 12 times on this piece of paper alone, but I'll bet there were other places she wrote these numbers. She could have been doing this at an interval of about 5 minutes or over the course of a week.

I do recall an occasion last year where a scan was brought forward suddenly - I wonder if they just got tired of her ringing?

Just a glimpse into the mind of someone falling into dementia.

there's talking and there's listening

2008-04-27T20:50:00.002+01:00

“Sorry I didn’t get to see you this weekend, but I was very tired and I figured that you’d already had some visitors this week.”
“That’s okay, Dear. So, do you think you’ll be able to come and see me in a few days?”
“No. Sorry. It’s Sunday now, so I’ve got a week’s work ahead of me before I could visit.”

[pause]

“Okay… Right, I’d better go and… I’m just thinking I should go and ask to have a … to use the pool* tonight so that I’m clean before you arrive.”

[*bath]

plans

2008-04-24T10:12:00.005+01:00

I tried to ring Mum in the evening to hear how yesterday's visit had gone for her, but she was already in bed by 9pm, most likely exhausted by the excitement. So I rang again just now.

Sometimes our conversations remind me of those I used to have with my Nieces when they were very young - no matter what I asked them I'd get a one or two-word answer. All Mum could tell me was that it was all "very nice" and I got "yes" and "no" answers after that.

Then she perked up with: "I suppose you know that D has got her teeth into arranging a party for my Birthday."

Family get-togethers are D's speciality, and I'm grateful to her for wanting to arrange this for my Mum's 80th in October and I'm sure she'll do a better job than I would. D and I had an initial scoping discussion last night.

It sounds like Mum's already told everyone in her flat that she's having a big party.

"Do we know who's coming?"

"Well, your Birthday is a long way off yet, Mum, so we've got plenty of time to invite people and arrange everything."

"Oh....er.....when is my Birthday."

I still get little shocks at things like this. I suppose it's because the accepted model is that those with dementia lose their retention of recent events but remember the older, core stuff with great clarity. But it's more complicated than that, of course. The holes in the Swiss cheese aren't just in the top inch - they can be anywhere.

dementia and racism

2008-04-23T23:54:00.007+01:00

Mum was taken out to Lunch today by our Relatives (D&G). I phoned the Home a few times this morning to ensure that Mum had been bathed and had her hair done in the on-site salon, because I knew she'd feel happier if they caught her looking her best. D told me later that the visit was a good one and that Mum looked very well.

Apparently Mum referred to the incident where she called me early on Monday morning. She said "I upset Greg." Now, I didn't get angry with her at the time and certainly not the next time we spoke, so I was a bit embarrassed, but maybe she'll actually remember the lesson if that's the story she tells herself.

Mum's new embellishment to the story, however, disturbs me.

To back-track slightly: when Mum called me at 4:45am her tone was definitely cheerful, as if she was calling me at a normal time. After I had pointed out the inappropriate hour for the 4th or 5th time, however, Mum searched around for an alternative explanation for why she had rung and told me that she was frightened and had called because she could hear people in the hallway coming towards her room (we'd been talking a few minutes by this point). I told her that they would be staff coming to see why she wasn't in bed and that I knew this hadn't been her real motive (it's pointless to argue with someone with short-term memory problems, but sometimes I just DO). Anyway, I told her to open her door and, sure enough, I could hear a staff member asking her if she was alright.

Okay, so today her story was that she'd upset me by calling early, but that she'd only called because she was so frightened by (and this I find shocking) "Negroes coming into my room".

I have never heard my Mum use racist language or ever condone any such language used by anyone around her. I've never heard her use that term. The idea that she would even choose to mention the skin colour of the staff member totally dumbfounds and alarms me. My Mother has mixed with people of many different nations and ethnicities in her life - she lived in Pakistan, in Japan, in India and travelled extensively throughout my Dad's career, taking in every continent. I don't recall her ever being frightened by a skin colour. All I can imagine is that she reverted to some pre-1950s attitude - maybe the sort of language she heard her own parents use.

I haven't got some cute way of ending this entry. I'm speechless.

half a night's sleep

2008-04-21T13:27:00.008+01:00

I'm jolted awake. It's dark and I'm disoriented for a few seconds. I realise that the phone is ringing. A wave of dread washes over me - a call at this time can't be good news.

"Hi Greg. I thought I'd better ring you because I'm short of money."
"Mum! It's....oh no...it's 4:45am. You can't call people at this time of night!"

Mum doesn't apologise. In fact, she sounds completely unconcerned, as if she hasn't heard me.

We go through the standard conversation where I explain that everything is paid for where she is, that there is money for her in the safe at Reception, that in the past 5 months she has not once needed money for anything. This is all news to Mum. She asks me what I mean by 'Reception', even though she often eats (for free, as a resident) in the café down there.

I get nowhere in trying to explain why it's bad that she's called me up in the middle of the night. It's something I struggle with, her lack of sympathy, or is it empathy? Mentally I have no problem accepting that Mum's ability to to do either has atrophied. But emotionally? That's a different matter. It's been years now since I could rely on her to feel sorry for me if something bad has happened, but I still am not used to it and I feel the pain of it afresh every time.

I may have to have the phone removed from her room if this happens again. It's a good thing that she's fallen out of the habit of calling anyone else. I think back to last year when I got a few sheepish phone calls from people asking me if there was anything I could do to stop Mum phoning them in the early hours.

Finally, I ask "What do you need money for Mum? What is it you want to buy?"

"Oh, I don't know.... food?"

bookends

2008-04-16T18:51:00.006+01:00

"Long ago it must be
I have a photograph.
Preserve your memories.
They're all that's left to you"

Bookends theme, Bookends, Simon & Garfunkel

It's a haunting tune, but what they don't say is that you're lucky if your memories are left to you.

finances

2008-04-15T19:32:00.002+01:00

When I first realised that Mum needed more sheltered/assisted accommodation, I worried how we were going to pay for it. True, Mum had a reasonably generous pension coming in each month from my Dad's old firm which topped up her finances nicely. But it seemed that every home I looked at charged almost double her income... and most of them were places I wasn't happy to show Mum anyway. I realised that I was going to have to sell her apartment and use the proceeds to pay for the shortfall each month. After a few selfish moments where I lamented my vanishing inheritance, I set to finding the best place for Mum at whatever the cost.

As my entries from last year show, I was lucky to find a place that not only surpassed all the other 'standard' and corporate homes I looked at but was also a little cheaper. We're still losing around £160 per week on top of Mum's pension, but that's a whole lot better than losing another £350 every week. Okay, I'll stop dancing around it - the place costs £560 per week and Mum's income is around £400.

Since December, I've calculated that the proceeds from selling Mum's apartment ought to see her alright for another 20 years. Of course, if her money runs out sooner, the State would step in to make up the difference (this is where you start commenting bitterly, those of you from the US). It's a comfortable situation for Mum and that's all that is important, but I'm aware of the irony that she'd get the same level of care if she had nothing (6 out of the 8 people in her household don't pay a penny) and that's all my Dad's hard-earned cash disappearing down the drain.

So I believed for the last 5 months. But then a couple of weeks ago I fell to chatting with a distant relative about Mum's situation.

"You need to buy a flat or a house with the money and the rent will pay for the shortfall," she said.

I'm such an idiot. Why didn't I think of that? I rent out a house myself, so it should have been obvious. The rent raised could cover the shortfall and we would still have the asset at the end!

I'm posting this not just to how dense I can be, but as an option for those in my situation. It's currently my intention to do something like this when I get around to clearing Mum's apartment and selling it (falling market permitting!)

It could be that there's a flaw in the plan. Judging by my past performance, I ought to see it by August.

soap opera

2008-04-07T19:26:00.004+01:00

I'm beginning to learn more about the new characters in Mum's life.

I was with her on Saturday. I took her for a cosmetics run to a large department store, where we allowed the Clinique girls to go to town on her face and sell her some new playthings. The staff quickly worked out that giving Mum a choice wasn't a great idea and that she takes suggestion well. They cooed over me, saying that she was lucky to have a Son like me to take her out. It made me wonder what normal Sons get away with. I don't feel like that brilliant a Son.

Anyway, back at the Home, the Screaming Lady was mostly asleep at the table and when she was awake she was feeble and whiny and sounded very scared. I did hear her refer to "those bitches" but she was immediately challenged by a staff member, which I found reassuring. I'm a bit sorry for her now, as she sounds very confused and seems to live in a frightening world where everything is being taken away from her. As I keep telling Mum, this is a troubled lady, but Mum no longer has the subtlety of distinction necessary to understand this. Like an child in a playground she categorises people only as 'nice' and 'nasty'. I try to tell her that every drama needs to have some conflict and that she's now living in her own private soap opera with Screaming Lady as her Nemesis.

'The Gentleman', is my new focus of concern. He was constantly wandering off down the corridor, past his own room and disappearing into those of others. I made a point of running after him whenever he was headed for Mum's room, and the staff member on duty caught on and began coming with me. 'The Gentleman' kept insisting that they were all his rooms, which claim we firmly refuted. When the staff member asked him what he wanted in those rooms, he said that he was looking for cash, which pretty much answered for me the question of what happened to the £100 I left in Mum's purse all those weeks ago. At one point, the staff member took him to each one of 'his' rooms and pointed out that they all belonged to different people and each had that person's name on the door. 'The Gentleman' strode back, apologetic and saying "You're quite right", but 2 minutes later he was off down the corridor again. He's too much of a handful when there's only one staff member on duty. I need to speak to the Manager about him.

So we have a Nemesis and we have a Gentleman Thief.

Also in the lounge was a new resident I hadn't met before. At first I wondered why she was in the Home, as she seemed normal enough and made sense in conversation. But after a while I noticed that her conversation was cyclic and came around and around to possessions of hers that had gone missing. Now I knew that she and Mum had clashed over a black coat in Mum's wardrobe to which this woman laid claim. The woman's own coat had then been located in her own wardrobe, but this didn't stop her retelling the story about 5 times while I was present. When I circumvented her on the last occasion to say that I knew all about it and that Mum hadn't taken her coat, her face fell and she asked for the telephone and started weeping, holding it in her hand. We had actually met this woman earlier in the department store, shopping with her daughter, and she was wearing her black coat...

So that's a Nemesis, a Gentleman Thief and an Accuser.

Then I met Mum's Special Friend who, again, seems quite normal, if maybe a little fragile and excitable in temperament. She sat next to Mum gazing adoringly at her, as if Mum was made of diamond, and drinking up anything that Mum said and repeating it back to us both. She seemed positively ecstatic to meet me (so she's definitely nuts). Mum doesn't even remember her name, which is slightly embarrassing. She's told me before how her new friend hugs her and kisses her goodnight, but I was amazed to hear that they've even shared a bed on occasion when Screaming Lady was prowling the corridor.

Oh my, this is a progressive soap opera! It seems we've got a potential Lesbian love interest, too.

I'll be back after these messages from our sponsors....

if the shoe fits

2008-04-04T19:15:00.011+01:00

A while back, on one of my visits to Mum, we went shopping for shoes. Mum has suffered from enormous bunions for a few years now, and it turned out that she needed a size 4 shoe on her left foot and a size 5 on her right. Thanks to the pesky new technology at the till we didn't get away with 'accidentally' picking up mismatched sizes from the shelf, so I ended up having to pay for 2 sets of shoes in each style.

Recently, Mum's feet have swollen up even further and a staff member at the Home rang me this week to suggest that I buy some especially-stretchy numbers from the 'Cosyfeet' catalogue. I got her to sit with Mum and pick out the styles and colours she wanted, and then the staff member rang me back with the catalogue numbers. She's gone for the Eliza slipper and the Katie shoe, in a size 6 this time, and I've had to buy matching Velcro extension strips for when Mum's feet swell even further. These are both pretty ugly examples - there are nicer ones in the catalogue, in my opinion. I'm tempted to see these choices as another sign of Mum's decline, but then it could well be that she was steered towards them by someone who doesn't know her tastes the way I do. The trick these days is how NOT to influence Mum's decisions.

I'm still going to use a wheelchair when we go shopping, though. It can shave a whole hour off a store visit!

throwing mum away

2008-03-24T22:34:00.001Z

It’s like an archaeological dig clearing out a parent’s home. Every cupboard, every drawer divulges some artefact that you remember from elsewhere in your ancient childhood.

Then there are the geological strata of purchasing to go through, where useful items like, say, batteries have been bought, stored, covered by something, then bought and stored again in repeated cycles. Empty canisters, used products are added to the heap, unaccountably. Peeling away these layers of carelessness is depressing. Once again, the bin bags are swelling as I come across new stashes of detritus. Everywhere there is evidence of Mum trying to carry on her life but failing, and stashing the evidence rather than disposing of it. This chaos is indicative of her mental state, it somehow is her, and I’m ruthlessly throwing her away in handfuls.

I am in her bedroom now. The bed is one of those electrically adjustable ones. It’s frozen in a half-up state. I find that a cable has been dislodged. How long has it been like that? Is that another reason why Mum started sleeping in her chair in the Living Room? This is all so pathetic that I feel tears rising.

I sit in the Living Room trying to concentrate on the flickering, malfunctioning TV, eating my microwave meal. It’s too quiet and lonely here, and I write as someone who normally looks for solitude. I think about Mum’s existence here and the tears come.

bridge

2008-03-24T22:31:00.002Z

I’m ending a call with Mum and, as usual, I ask if anyone has called her. No. So…has she called anyone? No.

At this point, it is my habit to suggest someone that Mum might telephone, and the last few times I’ve suggested ‘J’, each time provoking an enthusiastic reaction.

This time, however, Mum says “Now I’m glad you mentioned that because I can’t find my address book…” And Mum launches into a detailed story of how, when she came here, she had packed her (one) suitcase and it had been “full to bursting” and that she remembered putting the address book in a front pocket on the case, but that when she came to unpack it wasn’t there and she wonders if maybe it fell out on her journey.

This is confabulation, a sort of mental bridge that Mum has built across a chasm in her memory to help explain her current situation. She has been doing this for a year or two now. It must be half-conscious because she accepts my own version of events without any argument. I remind her that she didn’t pack or unpack, that I did all her packing and that there were several cases and a couple of car-loads of stuff. What’s more, I say, every time I visit her she tells me that she has no address book even though it’s either lying in plain view beside her telephone or in her dressing table drawer.

Mum grasps onto the idea of the dressing table drawer and says that she’s going straight to her room to look for it.

“And then you’ll phone ‘J’?”

And I get the usual enthusiastic reaction as if the idea of contacting ‘J’ has come right out of the blue.

Happy Easter

2008-03-22T22:33:00.000Z

I’m down in Sussex in my Mum’s old apartment, trying to make some progress in clearing the place. I’m noticing that every time I make a start on a task I suddenly remember a telephone call I need to make or a blog entry I need to compose. The jobs before me are each manageable in their own right, but I panic at the huge cliff-face rather than focussing on the first hand-holds that will start me on my ascent. This is very peculiar after the huge steps I took in December – why am I freezing now?

So, anyway, for a few minutes I’ll record some news that I’ve missed out over the past few months.

Firstly, Mum is generally very happy in her new home. I never find her in her own bedroom when I ring her – she’s always in the Lounge. She has made a close friend on the household and is very fond of the staff members, even if she can’t recall anyone’s name. She praises the food and loves the way they do her hair. There seem to be some group activities going on from time to time.

Secondly, Mum has had visitors at last. My Brother-in-Law and my Nieces turned up in the country on a whistle-stop tour and visited Mum in February. They told me that they were very impressed with the Home, which came as a tremendous relief to me. D & G also visited and took Mum out to lunch one weekend. They were equally enthusiastic about the Home and told me that I couldn’t have found a better place for Mum. It’s stupid how important this is for me to hear.

I’m a bit disappointed that no-one else has been in contact, though. Those of Mum’s friends who’ve found out where she is now living have all said that they would call her, but they haven’t. It’s like a taboo for them, like if they don’t speak to her it won’t be true. I suppose they just want to remember Mum as she was, but it would be lovely for Mum if they’d call. Yes, she’s a bit confused about where she is and what day it is, but she’s still the same person. All that’s changed is that she’s being looked after now (in a “hotel”, if you believe her).

Right…. I’d better go and get busy with the bubble wrap.

Happy Easter!

fight club

2008-03-21T22:30:00.000Z

Mum’s telling me about a run-in with Screaming Lady. As usual, the crone had come up to her and was calling her a Bitch.

“So I pushed her and she fell over and was screaming even more.”

I’m shocked to hear this. I’ve never known Mum to be violent in any way. Even more shocking to me is Mum’s amused tone of voice. I tell her that she can’t go pushing old people to the ground.

“She’s not old” she says, scornfully, “She’s young… she’s a young woman.”
“Mum, she’s older than you!”
“No…. she’s about… “. I hear Mum ask a staff member…. “She’s 86.”
That’s 7 years older than Mum. I don’t expect Mum to be able to do the calculation, but I would hope that she would realise that 86 is “old”.
“Mum! You can’t push over an 86-year-old. She could break a hip or something. You’ll get into trouble. Can’t you just walk away from her?”
“I suppose so.”

Parenting is so hard.

reminder

2008-03-19T22:26:00.002Z

Mum calls me: “Hello Greg. I thought I should call you because we haven’t spoken for quite some time now.”

This is Mum’s current favourite opening line, although she rings almost every day. I suspect, to her mind, that it makes her sound competent and like she’s managing me. Mum has thought about this call in advance, and she quickly switches to a theme I haven’t heard for a while: that she’s short of money. Once again I go through the familiar list: she doesn’t need money at the home for things like hair-dressing and chiropody; I’ve left money at Reception for her and she only has to ask for it; in three months she hasn’t once needed money for anything… This is all received as shocking news to Mum and she keeps interjecting with “Really?” or “I didn’t know that!”

Then our talk turns to this weekend. Mum wants to know if I’m going to visit her. I explain that the Easter weekend is the first time since January that I’ll have a chance to travel down South to continue clearing her apartment, and that I’m working in London on Thursday and will continue on to the flat afterwards. I start listing the things I have to get done down there. When I say that I’m going to lift the carpet in the bathroom to find out why the floor is swollen, Mum says: “But there isn’t any carpet in the bathroom – it’s just… lino” and I realise that she is thinking about where she is living now (her new bathroom is a wet-room). I explain that it’s the flat in Sussex I’m travelling down to, not where she is living now. Mum pauses for a moment, but I don’t immediately see the significance.

We’re finishing up the call soon after, and Mum says “Well, I’ll see you at the weekend, then.” I say that, no, I’m travelling down South to work on her old flat. She hesitates again and I suddenly realise something. “Mum… do you know where you’re living now?” Mum is indignant “Of course I do. In the place that… that… we bought for me!” “And where is that, Mum?” And she names her old address down in Sussex.

Mum’s memories of the last 5 months haven’t stuck in her head. This is why she cannot name anyone she’s living with or any of the staff members. Now it seems that she has elided her new home with her last one. I suppose it’s a positive sign that this place feels like home to her. I’m reminded again how good a thing it is that she is being looked after and I think how wretched her life would have been now if I’d not done anything a few months ago.

the way we were

2008-03-16T13:39:00.005Z

I was in stuck in town recently and expecting a call back home, so I rang my house phone to listen for messages. It turns out that my machine insists on playing every stored message before getting to the new one.

As the first messages played I was transported back to last October and the calls I would get from Mum.

As usual, I feel guilty for this further betrayal in posting these calls but, at the same time, I want to preserve them as a record.

memory

2008-03-09T01:15:00.006Z

The phone rings once, then stops. A couple of minutes pass and it rings, once, again. Mum's trying to call me.

I'm out of the bath by the time she gets it right. She tells me that everything is fine. She wants to know when I'm visiting next as it "has been a while" but then, when I protest, she claims to remember my visit last Sunday. She tells me that she'll have to go as she needs the toilet. I've worked out that this is her subconscious strategy to avoid facing that she's got anything wrong.

30 minutes later she's back on the line and sounds down in the dumps. I ask if the Screaming Lady is giving her a bad time. No, she says, but someone phoned her with some bad news. She can't remember who it was, but she names one of her relatives and says that the caller told her that he's very ill. Now, this relative died just after Christmas, and I know for a fact that Mum has been told the news 3 times since. I gently remind her and she claims to remember, and says she needs the toilet and that it's only because her life is so hectic nowadays that she made the mistake. Hectic?

As we end the call, I suddenly remember a conversation we once had when I was a teenager. Mum was talking about my childhood and the amazing places we lived while my Dad worked abroad.

"Whatever happens, Greg, no-one can take your memories away from you. You'll always have them."

Funny I should remember that now.

Mothering Sunday

2008-03-03T13:26:00.005Z

I turned up at 1pm with a big bunch of flowers to find Mum at the dining table clearing the last morsel from her plate. The staff member on duty gave me a guilty look - perhaps suddenly remembering that I'd phoned to tell her I was taking Mum out to lunch today. I sometimes feel like pointing out to this place that their web url contains ".org", which stands for "organisation" - something they noticeably lack.

The table was booked for 1:30pm at a Restaurant about 5 minutes away by car, so we got there 20 minutes late. Since the parking was around the back and Mum walks so slowly that passing glaciers tut as they overtake, I let her out of the car directly in front of the Restaurant and said, "There's the door - follow those people inside and tell them we have a reservation. I'll park and join you in a minute." I found a space and ran back around the corner to find a gaggle of old ladies assisting Mum, who had managed to walk another 20 yards down the road and had been trying to enter a private house, telling the owner that she was sure she had a reservation. Mum wore her usual beaming bewildered expression that is there whenever she is the centre of attention.

I thought maybe Mum would perhaps just manage a starter and dessert, but she ate a whole second lunch. At the table she regaled me with the same stories of Screaming Lady and the Gentleman, who has morphed over the weeks into Screaming Lady's husband in Mum's imagination. She's still calling the Home "that Hotel I'm living in". She tells me the same stories every time we speak.

A very large lady came in at one point and sat at the next table. Mum very loudly commented that the lady's blouse was not the best choice for someone so fat. I think even the kitchen staff heard that one.

We had a good afternoon and I didn't get frustrated with her once. Well, it was Mothers' Day and not "Chronically Single Sons' Day", after all. I must look up that date.

disoriented

2008-02-24T13:04:00.004Z

I'm in Mum's room, sitting in a chair in the window alcove, looking out over the garden. We're going out to have lunch in 10 minutes or so. Mum, being Mum, needs the toilet first. She decides against using her own bathroom, and says that she'll use the toilet down the hallway.

A couple of minutes later, I hear one of the staff members directing her, as she has evidently lost her way and doesn't know her way to the bathroom, though she's been living here for 2 months now.

A few minutes later, I hear the astonished exclamatory noises that Mum is prone to making on entering a room, only I can tell she's at the other end of the corridor and has obviously walked down to the lounge. I hear the same staff member gently reminding Mum that her Son is visiting her and is waiting in her bedroom. Mum sounds genuinely surprised.

Last year, little things like this would have worried the hell out of me. Now, I just feel a wisp of sadness pass over me and then I feel relieved that Mum is being cared for here.

stray

2008-02-17T14:16:00.004Z

There's a dog on my street with dementia.

A few times recently, I've arrived home to find this dog loping up the driveway from my garden out back. She gives me a baleful look as she passes me and then trots into the next driveway. Moments later she emerges in the driveway of the house beyond. This dog has forgotten where she lives.

The first time this happened, I caught up with her and read her tag and rang her owner. She lives about 20 houses down the street and has an infant who takes up all her attention. Apparently this dog is old and just doesn't recognise her home any more. This isn't just a stray - you can tell as soon as you see her. There's a look of dull panic in her eyes that I've seen in Mum's on occasion. This dog keeps in motion because she knows that something isn't right. There's a robotic quality to her relentless search for something she has forgotten. The normal doggy responses are missing: stop her and she stands unresponsive as you pet her, waiting to resume her search. Walk with her up the street and she tries every driveway along the way unless encouraged onwards. Her own home is greeted with no more enthusiasm than any other.

Meeting her again this week felt like a nudge from the universe.

the savages

2008-02-09T21:15:00.000Z

I just got back from seeing "The Savages". In my current exhausted state, I stumbled into the cinema having forgotten why this movie had stuck in my consciousness as something to look out for. I sat down thinking, "Well, Philip Seymour Hoffman and Laura Linney are always interesting."

Of course, within seconds I remembered that this was an unflinching look at dementia and caring. There was a LOT here that I recognised, both in the portrayal of the Father and in the conflicted behaviour of his children. I'm not sure what anyone who hasn't gone through this would get out of watching the movie, but I could feel a lot of issues being externalised and I blushed at times. I've been Jon, unwilling to get drawn in but ultimately both responsible and realistic, and I've been Wendy, neurotic with guilt about what she's done. I wish I could say it was cathartic to watch, but at least there wasn't some Hollywood solution that I'd missed in the real world.

It is a wryly comic movie, though. And the characters grew (slightly) towards the end. There's hope for me yet... as long as Tamara Jenkins is writing and directing my life (oh wait... my writers went on strike years ago).

ADDENDUM: I ended up going out again for the late showing of "Juno", which cheered me up no end - this year's "Little Miss Sunshine".

intruders

2008-02-04T21:30:00.000Z

Mum is happy in the Home but there are now a couple of residents causing problems for her.

Firstly, there's the jealous old lady I've previously described - she is now, it seems, finding her way up the corridor to Mum's room and coming inside screaming at Mum. When Mum mimics this for me, baring her teeth and wobbling her jaw from side to side, it's very frightening because it makes her look truly demented. Trust me, that's not a look you ever want to see on a member of your family.

Secondly, to my surprise, the rather charming and solicitous gentleman of the household, who I've seen fending off Screaming Lady's attentions, has himself turned up in Mum's bedroom wearing only his underpants, prompting Mum to eject him vigorously. It turns out that he tells everyone that he owns the place. I suspect one of his relatives told him "this is your home now" and he took her literally.

Of course, my first reaction on hearing of these incidents was a strong urge to remove Mum and find her somewhere more genteel, but Mum insists that she doesn't want to be moved. My quandary is that Mum really needs looking after 24 hours per day in a place geared for dementia, but anywhere I found for her is bound to have residents like these (or worse).

When we got back from lunch, the gentleman's jacket was draped over Mum's dressing table chair. He'd been into her room again.

I have shown Mum that she can lock her bedroom door. What else can I do?

micro-managing

2008-02-04T18:10:00.000Z

My visit this weekend reminded me how much I'd forgotten already. Maybe I ought to get one of those brain-scan thingamajigs for myself.

I had forgotten just how much organisation it takes to do the simplest thing when Mum's along for the ride, how each action needs to be broken down into tiny steps, and how I need to over-estimate the time required to perform each step by a factor of 1o.

I'd forgotten the shocking fact that I now have to be the one who has to choose what Mum wears, what she eats, have to teach her how to use a seat belt every time we get into the car (and out of it), have to steer her along the sweet aisle in the supermarket to the items I know are her favourites and stop her picking up every bag and bar on the way.

I'd forgotten that, months ago, the Social Worker told me that Mum wasn't really capable of communicating, that she was winging it, instead, by responding in generic phrases that sounded credible but didn't really add up. I miss conversation with Mum. What we have now is entirely driven by me: I say something and Mum gives an expected response which tells it back to me in hand-me-down phrases.

I realised something new this weekend. For ages, Mum has taken to reading things out to me (road signs, menus, anything on shelves in a store). At first I was irritated and would say, "Yes, Mum, I know you can read. You don't have to prove it to me." But now I understand that Mum's choice has eroded away and she's only capable of reading out the options in the hope that I will make the decision for her. This was another symptom of her dementia all along.

careful what you say

2008-01-31T11:48:00.000Z

I rang Mum last night and we had a really good conversation, one that was somehow more lucid than usual.

Perhaps that's why I dropped my guard and I told her that I was going to come and visit this weekend, told her what I'd bought for her and would be bringing with me.

Silly Greg.

First there was the 6am call. Then the one at 8:30 on my way in to work. Then, later in the morning, one of the Care Home staff calling me to ask what time I was planning to arrive...

How many times does it need to happen before I learn? The future is always today with Mum now.

rude

2008-01-29T20:21:00.000Z

There's a woman in Mum's household who screams at her.

She's a rather angry-looking crone who seems to have claimed (unilaterally) the one and only male resident (at least 20 years her junior) as her love interest. Apparently she will put her arms around his neck and hang off him until the staff can pull her away. Whenever Mum is about, this woman is hostile, and I suspect that she sees Mum as a rival. It's another form of dementia, of course.

I saw this woman there a few weeks ago on my last visit. The four residents of the household were eating and those of us visiting were having a rather stilted conversation across the table. The crone was sulking powerfully as we engaged her paramour. He was talking about his time overseas.

"I had a cousin who lived in Canada," announced the crone, interrupting Mum as she began to say something.

A few minutes later, in the course of conversation, Mum tried her best to engage this woman by making reference to this cousin.

"What is she saying?" cried the woman, "I don't understand what she's saying!"

Mum blushed quite redly but kept her temper and repeated herself again calmly.

I wanted to remove Mum from this awful situation, this embarrassment and indignity, but it was another case where I realised that Mum is still capable of fighting her own battles sometimes. There's no reason to concede to this woman when the home is just as much Mum's as hers. It's my guilt at being responsible for Mum's move that is behind my desire to remove her at the first sign of difficulty. It's obvious that Mum still thinks this place offers enough to balance one difficult woman.

remember me?

2008-01-22T20:12:00.000Z

Mum called this afternoon, and we had the same conversation we've had 10 times since I visited her last, which was 10 days ago. As usual, she started by enquiring about her bank account and asking me if I knew that she gets a pension from Dad's old company...

I resisted the temptation to mouth the words to myself, and I let her get it all out in her own time without interrupting her. A couple of days ago I bought Mum a writing notebook and I've printed out a simple diagram explaining her finances. I'm hoping that she'll refer to this when she wakes up at night with her "sudden thoughts".

Midway through extolling the food again ("... and it's free, you know") and telling me what had been going on at the Home, Mum paused and asked me: "Have you ever been here? Have you visited this place?"

That took me aback somewhat.

office

2008-01-15T23:35:00.000Z

“Ah, he's here... Hello, Greg?”
The call comes around 4:30pm while I'm at work. Mum sounds bright and urgent. I can hear activity in the background.
“Hi Mum. What can I do for you?”
“I’m in the office here and I wanted to talk to you about this….er..... So…. I’ll call you later.”
“Mum… I don’t understand… You’re calling me now to tell me that you’ll call me later?”
“Yes.”
“Is there anything wrong? We can talk now. What did you want to tell me?”
“Well it’s about the money… this money… this 5… er…. To pay for one room here.”

Mum's clutching at straws. She’s desperate to make sense to prove to me that she’s competent, but everything she says betrays her. Behind this conversation, I suspect, is the loss/theft of the five £20 notes I left in her purse 3 weeks ago. At the weekend, we had several discussions about this, where I explained how all her pension was now going towards paying for her stay in the Home.

“Well, so I’m in the office now…”
“Is Christine (the Manager) there?”
“I don’t know… [shouts]… is there a Christine here?…. No…”

I hear a plate go into a washing-up bowl.

“Where are you, Mum?”
“In the OFFICE… I told you! You know… where we have the television and the sofas and they cook things for us in a kitchen.”
“The Lounge?”
“Yes, the Lounge.”

I first noticed Mum’s word-substitutions at Christmas. They're cropping up more and more frequently.

scrabble

2008-01-13T22:57:00.000Z

I’m sitting playing Scrabble with two relatives of another resident in the communal lounge/diner, wondering if the presence of a Scrabble board here is therapeutic or a cruel joke, given the level of Aphasia in this room.

The staff member is having trouble getting Mum to the table for her meal. The food keeps going back in the oven because Mum has wandered off down the corridor to her room. She’ll go and fetch her but the moment she turns her back to plate the meal, Mum has risen because she’s just remembered something or she needs the toilet. For someone who has such trouble walking, Mum certainly puts in some good mileage.

Eventually, she is sitting and eating.
“I must show you the pool,” she says to me, standing up suddenly.
“Pool? I didn’t think this place had a swimming pool.”
“Oh yes, a large one. It’s over that way. They use a chair to lift you in and…”

Mum’s talking about the bath.

my perceptions confounded

2008-01-13T14:56:00.000Z

A couple of days ago I came home to find my answer phone blinking. The caller was Mum. As usual, she had started talking too soon, and all that the machine caught was "This isn't working." I thought the worst, naturally. This was Mum's judgement of her new living arrangement. She wanted to go back home.

When I listened again more closely, I could hear that there had been someone with Mum helping her use the phone. Mum had probably been thrown into confusion when my answer message began, and she had told the staff member "this isn't working."

I begin to see a pattern now: I misread the signs, projecting my own fears and concerns onto Mum's somewhat Delphic utterances, and then sometimes I am granted a clearer understanding.

Yesterday was a case in point. Now, I've felt conflicted ever since the day I took Mum to live at this Care Home, chiefly because she was simultaneously offered a place at the home nearer me, the one where she had received day care. In my estimation, the place near me was far nicer, better organised, more genteel and genuinely warm and caring. Without wanting to sound a snob, it felt more like my Mum's sort of place - a Country Club, if you will. The only trouble was that they didn't cater to those of more advanced Dementia than Mum, and Mum is likely to deteriorate further at any time. Oh, and the place was too far away from other relatives for them to visit easily.

So, since then I've found myself holding Mum's new home up to comparison with the 'nicer' one, and I've been hypersensitive to every discrepancy in care that I can see, wracking myself with guilty feelings. Anyway, yesterday I arrived at 1pm and took Mum out to a restaurant for Lunch. I had decided that we should go shoe shopping afterwards (Mum had been complaining about her one pair of shoes hurting). As we got into the car to go to the Mall, Mum said: "I hope you're not taking me back to that place."

My heart took a dive, somersaulting expertly on its way down into an Olympic-sized pool of misery.

"What place is that, Mum?" (Where did THAT question come from?)

"You know... the place where you talked to them and... er.. I don't know how to describe it."

After several attempts, it finally transpired that Mum was talking about the 'nicer' Care Home. She told me that she had never felt that she fitted in there, and that she felt the residents excluded her somehow. She went on to say that she was happier where she was now and that she particularly enjoyed the food.

I kept a straight face, but inside my brain someone was reworking the layout and doing extensive renovations.

wits' end

2002

ANITA 14th October 1928 - 15th November 2010

poetry on ward 3

update

Hallowe'en Fright

82

leitmotif

location location location

bugger

maybe I didn't love you

shape and hold

more poetry, I'm afraid

jokes and old folks

night terror

turbulence ahead

school report day

metaphor

a winter's tale

career choices

sold

christmas 2009

behind closed doors

a lovely little stranger

lick

birthday girl

will he be there when we get home?

love and alzheimer's

fan club

fatter transferrence

wishful thinking

the power of now

one day you'll write about me

recycling remembering

spare me your charity

woman's hour

closing the closet door again

who's who

moving along

money, money, money

I'm doomed!

one from the vaults

alzheimer's "is brain diabetes"

wordle

veronica

christmas

a confession

sticking to the story

what do you do?

I was born under a wand'rin' star

big badda boom

the hole in the wall

grief and guilt

birthday: part II

birthday: part I

birthdays

if the shoe fits

the right to die

I will survive

now and then: a visit

a dream

times are hard

folly

nobody home

B*st*rd Lady

back to school

Munich dreaming

simalacrum

family wedding

dialling down

table manners

Tokyo... 1968-70

incomprehension

write it down

there's talking and there's listening

plans

dementia and racism

half a night's sleep

bookends

finances

Bstrd Lady