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.

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.

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.

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.

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!

a lovely little stranger

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

"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

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?

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

"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

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...