2002

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

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

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

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

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

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

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

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

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

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.

    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

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.

jokes and old folks

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

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

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

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.

a winter's tale

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

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

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

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

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.