March 16, 2012

Saturday is when Mum and I eat together and has been for a while. For a couple of years, I took Mabel and Ian out in the car and we ate a picnic lunch together while parked at some beauty spot. That became difficult. Then, for the next year or so, Dad and I would eat lunch with Mum at a table in the dining room of the home. That became unfeasible too. Now it’s just me and Mum. Most Saturdays I feed her at a little table by her customary chair in the lounge while eating the same meal myself.

Today, I arrived to find that Mum had already been given her soup. I suppose this is fair enough. Mabel needs a long time to eat and so the carers often get her started before lunchtime officially begins. My bowl of soup arrived and Mabel seemed oblivious as I ate it. Certainly, other than the most ambiguous of hellos, she hasn’t responded to my attempts to get her to speak.

Now we’re waiting for the main course. Another resident, Barry, sits on the sofa, close to Mum’s armchair. As long as I’ve known Barry, he’s been toothless and skull-revealingly thin. He is showing no interest in the plate of soup in front of him. When a carer walks by and says encouragingly “eat your soup, Barry,” Barry opens his eyes, to register the message, but his arms remain crossed over his chest and soon he shuts his eyes again. I get the impression that eating soup is not very high on Barry’s ’to do’ list.

The main course arrives: steak pie, carrots and cabbage for me; a puréed version of the same for Mum. I put some of each of the brown and orange and white onto a spoon and move it towards Mabel, whose mouth opens in response to my voice as much as anything. I then alternate between the colours, so as to give Mabel constant variety of taste. When she’s halfway through her own bowlful, I spice it up with the odd slice of carrot, shred of cabbage, lump of meat, or piece of pastry from my own plate, because the textures are part of the taste experience, surely. Eventually, when Mum’s lack of response suggests she’s had enough, at least for now, I tuck in to my own food.

In my line of sight, Bessie sits with a large plateful of nosh in front of her. But she’s shaking her head at the loaded fork that a carer is trying to tempt her with. “I can’t eat it,” she says, sobbing. Dry sobbing is her default condition, and it leaves her, I guess, too upset to eat. Meanwhile Barry is being asked if he wants a main course. Barry uncrosses his arms for long enough to perform a short, sharp, horizontal karate chop in the air that clearly indicates his insistence on nil by mouth. Well used to this instruction, the carer does not even put the plate down in front of him. Basically, Barry doesn’t eat, at least that’s how it seems to me. Instead, he sits bolt upright with his eyes shut and his arms crossed. A realistic long-term alternative to taking in nutrition? Well, he’s still here, more than three years down the line from when I first saw him in this unyielding mode.

I ask about Bessie. A carer tells me that in an hour or so, when she’s at a different stage in the completely-upset-to-only-slightly-perturbed cycle in which she exists, she’ll whisper that she’s hungry. And at that point something will be rustled up for her to eat. As for Barry, now he’s being offered a cup of tea, and as a gesture of goodwill to the regime under which he lives, he nods an acceptance of both the tea and the chocolate digestive that comes with it. Barry takes the biscuit in his hand and bites – or rather gums - into it. My God, Barry is eating! Where is my camera when I really need it? Well, no, I shouldn’t take photographs of other residents, which could be an invasion of their privacy. It’s Mum I have a power of attorney over. But that too has to be used with sensitivity and discretion. So I’m not taking photos of her today either.

Renata, the senior carer on duty, tells me that Mabel ate a good breakfast this morning: toast and porridge. Actually, I already know this, because I’ve been along to Mum’s room where her HASP (Holistic Assessment and Support Plan) file is both updated and located. As Mum’s input of food is being monitored, each day is divided into six sections and in these the carers record what Mabel ate and drank - either at a meal or as a snack in-between meals. The fourth section, mid-afternoon snack time, is often filled-in by me, because that’s when Mum is in the car with Dad and I, sharing flask of tea and eating cake or biscuit.

HASP is a person-centred assessment and support tool. It’s supposed to provide a detailed record of the needs and aspirations of the residents and to set out how best to enable the individual to achieve these. In some ways, Mabel, thanks to her dementia, has gone beyond HASP. Because who can really tell what her aspirations are these days? ‘To be presentable for my husband and sons,’ I hope. ‘To keep going regardless of my quality of life,’ I suspect.

Also recorded in the HASP each day is the information that, in order to try and prevent the forming of bedsores, Mabel of the thin skin is turned three times during the night. At midnight, 3am and 6am, a carer enters Mabel’s room, noting if she’s awake or asleep, and turns her from lying on her left side to lying on her right, or vice versa.

I can’t help wondering what Barry’s HASP reveals. Primary aspiration: ‘To eat nothing by day.’ Seconday aspiration: ‘To eat three square meals by night.’ Yes, perhaps the carers feed Barry while turning him at 12, 3am and 6am.

I don’t mean to mock the system and certainly not the carers. Basically I think it’s amazing that so much effort and goodwill is going towards helping our mothers and fathers through theses late phases of their lives. Always remembering that much effort and goodwill comes from within themselves too.

Not for the first time in this blog I feel I should invoke Samuel Beckett. On this occasion, I’m put in mind of words from the end of
The Unnamable. The interminable last paragraph that finally concludes ‘…you must go on, I can’t go on, I‘ll go on.’