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Hospital as a way of life

In the bed next to My Loved One, in the peaceful Lewisham Hospital top floor ward overlooking leafy Ladywell Fields, is a man I’m pretty sure is a retired clergyman. He has a Bible and BCP on his locker, visibly prays, has a loud booming voice and a wife with vicar’s wife-type social skills. Chatting to me last week she looked at MLO who was asleep as usual and, not unreasonably, asked me what his illness was. She was surprised when I told her it’s Alzheimer’s. “I hadn’t appreciated that it affects sufferers physically as well as mentally” she said. She isn’t alone.  Her husband, incidentally, aged 86, has an infection and is expected to recover. Mine, of course, will not. MLO’s brain is rapidly breaking down and that affects every part of the body. That’s what the disease does. It’s unrelenting and irreversible.

It’s very odd how few people understand the progression of Alzheimer’s. Yet it was very clear in that wonderful film Iris in which Judi Dench played the older Iris Murdoch. She became increasingly confused, rapidly more infirm, went to a care home and died after a short period of semi-consciousness in bed. I suppose memory loss is easier to comprehend and deal with. While there is no cure it’s almost taboo to dwell on the rest of it. You can almost romanticise early stage memory loss and you can certainly joke about it as I have often done in these blogs. Even now he mutters funny things sometimes. This morning he was, inconsequentially, on about rawlplugs, for example.

In contrast double incontinence, inability to swallow, feed yourself or stand up are about as unglamorous and unfunny as it comes.  Someone said on the Alzheimer’s Society website recently “When I was diagnosed, it felt like a death sentence”. Well, yes, that’s exactly what it is. No wonder so many people delay seeking help and becoming a dementia statistic. The longer you put it off, the longer you can delude yourself. Not a good idea really but I can certainly understand why people think that way.

So MLO lies there in his hospital bed, quite peaceful and comfortable, with Ms Alzheimer’s snuggled tightly under the bedclothes with him. Her fangs and nails are now deeply embedded in him but the one thing she doesn’t seem to do is cause him any pain.  Sometimes he’s awake and from time to time he says something or tries to. It’s rarely anything I can understand or respond to and he speaks only in whispers. I think he usually recognises me even if he often isn’t sure who I am.  As far as I know he hasn’t been out of bed for three weeks. Physios keep trying, using hoists, but since he can neither bear weight nor take instruction, it’s abortive. Given that it was being unable to stand up which put him in hospital in the first place I am at a loss to understand why anyone there thinks he’s likely to be any better at it now after three weeks in bed getting more wasted every day.  This is, after all, a degenerative progressive disease.  Why, therefore, keep disturbing and upsetting him?

I keep expecting to be told that he must be discharged because he’s bed blocking but to the great credit of the staff on the ward –  who are all kind, courteous, caring and friendly from the ward manager down to the woman who sweeps the floor silently but always smiles at both MLO and me – no one has yet mentioned this except very vaguely as something for the future. In fact, whenever I ask, they tell me that there’s no question of it until occupational therapists and social workers have made sure that everything is right and ready for him at home. And none of them has yet raised the subject properly with me. Maybe they know something I don’t and there will be a call at 3.00am one morning telling me to get down to the hospital pronto. Or maybe this limbo will go on for months. And so we move into the fourth week … accepting, as the consultant put it this week, that “this may be the new baseline”.

Meanwhile I go to the hospital every day, fitting it in as best I can around work commitments. It now feels like a very familiar part of life. I even have a loyalty card for the café where staff  recognise me when I pick up a cup of tea to take up to the ward with me. I’m also au fait with Ladywell station from where I have several times gone on into central London.

At present I’m stoical rather than sad most of the time although I wish very much that Ms A had allowed MLO a bit longer to enjoy the fruits of our move back to our native London three years ago. We had such plans for all the things we were going to do (visit  the museums we missed in childhood, walk the Thames path, attend lunch time concerts at St Martin’s in the Fields etc) but because of his illness we have done almost none of it. Two years ago I tried to get him to do the Green Chain Walk from Crystal Palace to Nunhead but we had to abandon it half way. Earlier this year I walked him from Angel Underground to Kings Head Theatre, Islington (maybe a third of a mile) and he frightened me so much veering across the pavement that I bought a wheelchair the next day.  The move has been a great success, in many ways, not least – as things have turned out –  the escape from a large house with 52 stairs. For myself, I really love living where we now do, especially from a work point of view. The novelty of being about to meet someone for coffee at National Theatre half an hour after walking out of my front door has yet to wear off.  I just wish he’d had more chance to relish it all too.

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Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
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