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.

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.