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The living and caring experience

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He wakes up and finds me sitting by his bed; his smile is seraphic. He says he has had a lovely sleep. It is unusual for him to sleep like this in the afternoon but the carers say he was very tired. Maybe he did not sleep well last night.

Recently I was told by one of the night carers that he had been talking to her with remarkable clarity about his awareness of his dementia, his appreciation of the love of family and friends who visit him every day. I was touched and grateful that he has someone so sensitive who will help him through the wakeful reaches of the night.

He finds it less easy now to complete a sentence or to follow through what he wants to say. It is exasperating for him when a train of thought dissolves before he can capture it. We try with gentle hints to remind him of what he wants to say but change the subject before he can become distressed. This feels like condescension towards someone whose brilliant intellect and ready wit were what defined him. Still sociable and wanting to communicate with visitors and those around him, what he says does not always make sense. He is negotiating around the black chasms in his brain.

The lack of mobility and incontinence which would normally come at a much later stage of the disease are caused we are told by bleeds in the brain, a quite separate condition; how unfair to be hit by two. But fairness does not come into it.

Getting him from bed to wheelchair to chair takes two carers or sometimes three if he needs changing. Now they often use a hoist to transfer him between bed, chair and wheelchair. This complicated contraption needs patience from them and complete trust from him that they will not let him fall but still he panics. His lack of balance must make him feel that the unreliable ground is shifting beneath his feet, as though he were at sea.

I am with him every day, sometimes when meals arrive. Judging the distance from plate to mouth is tricky for him now as the state of his clothes at times bears witness. Not wanting to jeopardise his independence, I spread a napkin on his lap and hold my breath as the loaded fork or the cup wavers towards its destination. He is vexed when he drops something and fastidiously wipes his mouth with the napkin. Not surprisingly, the meal takes a long time and much concentration. The carers cannot possibly devote this much time individually so I wonder how he manages without me.

I try to imagine what the long day is like for him; how does the time pass? It is a life made up of disconnected moments, not a sustained narrative. The present, past and future do not seem to have the distinct boundaries we are used to. The time of day becomes immaterial, so that what happens now is a continual surprise. The past can be summoned up in flashes when prompted but the future is an unknown country.

He is luckier than most in having stimulating points in the day from his many visitors who bring poetry and music which he loves, talk of his favourite football team Arsenal and his daily copy of the Guardian. But the ever present television in the sitting room is a blight of sight and sound which I surreptitiously turn down or change to a more interesting channel. Old black and white films and documentaries are what he would like best and I have occasionally managed a short burst of music from radio three which seemed to go down well, but there has to be a democracy of interest among the blessedly small number of residents who share the sitting room with him.

These people, about eight men and women suffering from various stages of dementia, have become his extended family and, because I visit daily, mine too. Inevitably I become involved in their lives and learn a little of their past. Those who are able care for each other intermittently and in their own way. His natural kindness and tolerance are stretched at times but he now seems to prefer to spend his days with them rather than in the separate conservatory or in his room.

The inevitable institutionalisation from being in one place without remit could be fended off by getting out for even a short time, but his lack of mobility made our one attempt to go out in the car something not to be repeated. The next outing will be to the dentist for a tooth extraction. Maybe his one expedition in the home's adapted minibus with a small number of other residents and their carers to have tea in a local theme park could be tried again, though it is hardly his scene. How do I really know what 'his scene' actually is any more?

The carers are his other family and the most important of all. Nearly all of them, young and older, are kindly, efficient and willing; several have been dedicated carers for a number of years. The dementia patients are totally dependent on them for their daily intimate care, the food and drink they need and their very important psychological support.

For example in the early evening he is sometimes subject to what I now know is called the 'sunset hour syndrome' for dementia sufferers. This manifests itself in agitation, anxiety and sometimes a kind of suppressed anger or depression, perhaps brought on by the mental exhaustion of getting through the day. It is then that I have to rely on his carers to soothe his troubled mind if I am not there. But they are also busy getting frail patients into bed. And they have been on duty for the best part of a twelve hour shift.

These are the people who, despite the pressures of their own lives, we rely on to be consistently kind and alert to the needs of the most vulnerable people who we entrust to their care for every moment of the day and night. How can it be right that they are paid at low and even minimum rates, well below the living wage?

Linda Lamont

Tags: care homes, carers, workforce Written 2014-09-14

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