My Demented Dad: it’s not all in the mind

Jill Sinclair

Monday 14 January 2013

I’m not very good with New Year’s resolutions.

They're a bit like Valentine's cards - a nice idea, but they can be hard work and don't always give you the results you're after. But I am a great believer in that ‘use it or lose it’ edict.

The need for mental stimulation is well known for anyone with dementia, and with the generous help and tremendous expertise of Alzheimer’s Scotland I think Dad has been pretty well served in that department since his diagnosis. But it may be that we rather neglected his physical well-being while concentrating on keeping his mind occupied. Dad has never been an energetic person; no golf, or football - he didn’t even walk the dog with Mum. In fact, he would delight in telling us that he got all the exercise he needed by walking from the front door to the car! Mum, on the other hand, was an enthusiastic walker, played tennis at Wimbledon, rode horses, cycled until she was eight months pregnant with my younger brother, and was doing keep fit classes well into her 70s. But Dad would have none of it. And although Mum’s fitness didn’t, in the end, stand her in very good stead, Dad’s inactivity hadn’t really been a handicap until last year. Despite all the advice to the contrary, Dad’s previous care regime had routinely kept him in bed, even when he wasn’t ill, and he quite quickly lost the ability to stand. He had been using a wheelchair for some time but could still manage to get from the wheelchair to the car or from his bed to the wheelchair and so on. But once he stopped being weight bearing and couldn’t transfer from place to place, his carers had to use a Stand-Aid. When I first saw it in action I was horrified – Dad hated it, it seemed brutal and I was sure that we could coax him back to using his legs just well enough to make the short journey from bed to chair. Easier said than done. A combination of his lifelong aversion to exercise and the convenience of staying in bed meant that his muscles continued to atrophy. When he couldn't any longer use the Stand-Aid the carers ordered a hoist. A ghastly contraption that lifts Dad into the air, swings him round and dumps him down like a sack of coal. And that isn’t the worst of it. More or less as soon as I arrived home last August I was told that Dad had the wrong sling for the hoist. The existing sling held him much like a stork holds a new baby, completely swaddled, and there was no way of getting Dad’s trousers down so he could use the loo. This was something his care workers had been complaining about for weeks, they told me, but their complaints weren’t being taken seriously. When the weekend carers came in, they made themselves comfortable on the sofa and announced they were on strike. 'We thought it might help you get a better sling if we refused to use that one,' they said. ‘Ok, so how do we get Dad onto the loo then?’ I asked. ‘You don’t.’ It seemed our choices were to a) not put Dad’s trousers and pants on so he would be naked from the waist down, with just a blanket over his knees to protect his privacy and keep him warm. And then when he did have to be moved to the loo he would be dangling with his backside exposed. Or b) get him dressed in the usual way, but risk an ‘accident’. I phoned the home-care supervisor the next morning and arranged for her to come to the house. I showed her the sling, miming the difficulties and getting into a proper tangle, much to Dad’s bewildered amusement. Within a week we had a brand new, easy access, toileting sling and it has made a huge difference. Both to Dad and the care teams, who then told me about the unsuitability of Dad’s commode. The one we had was the, er, bog standard type which wobbled and had the sort of hard plastic seat that would discourage anyone from sitting on it for too long. If it had come with its own loo paper it would have been that scratchy stuff we had at school, barely absorbent and with the potential to give you a nasty paper cut if you weren’t careful. I tried three or four times to get the people in charge of commodes to phone me back and just when I was running out of ideas a girl answered who said she was ‘just a temp’, and what was it I wanted? I told her. ‘Your address?’ she asked and then ‘Is it OK if we deliver it on Wednesday?’ The guy who brought the replacement commode, beautifully wrapped in that industrial strength cling film and bristling with newness, said ‘Ah well. It’s easy for her. She won’t know anything about budgets. These temps just say yes to everything.’ I felt a little guilty, as if I was in receipt of stolen goods, but we’d got what we needed - a modern, state of the art commode – with a padded seat and a sturdy frame. It’s the equivalent of 4-ply, quilted and with added aloe vera. Very often it’s the physical stuff that is the most wearing. More so than the dementia, the frustrations and struggles of which are, literally, soon forgotten; but being in pain, or just being uncomfortable for long stretches can be the thing that makes life so wretched. Dad is now doing daily chair exercises and who knows, maybe he will be able to stand again and we can dispense with the hoist. Not so much a resolution but a faint hope. And my resolutions, now that I'm faced daily with such a vivid illustration of what can happen if you don't 'use it', are to walk more, learn to play bridge, or find some kind of card playing circle - if anyone knows of any clubs I could join? - and to stop swearing quite so much. I had forgotten the Glaswegian fondness for the ‘c’ word and have begun using it myself – never at people, but about them. It’s such a powerful word, but in the case of swearing the ‘use it or lose it’ mantra works in reverse. The more you use it, the less it works. Or as Dad used to remind us when we were growing up ‘Swearing is the effort of a limited mind to express itself’, so I think I’m going to try and cut down.

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My Demented Dad: it’s not all in the mind

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