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Keeping in Touch

with someone who has Alzheimer's

Keeping in Touch by Jane Crisp
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This book is for people who find themselves in the same situation as my father and I - someone close to you (your spouse, your parent, a dear friend) has been diagnosed as having Alzheimer's disease and you want to keep in touch with them as long as you possibly can. This desire to stay in touch may be because you love them, or feel a sense of duty or responsibility towards them; probably it will be a mixture of both. You'll be relying on these feelings of love and responsibility to carry you through the times ahead, whatever the circumstances.

The person with whom you want to keep in touch may be living with you. Later they may well be in full-time residential care, as my mother eventually was. The suggestions in this book apply to either situation. Some people who want to keep in touch may, like me, be living at a distance and have other responsibilities to fulfil. If so, the strategies in this book should still help you make best use of any time you can spend visiting a family member or friend who has dementia. There are also some suggestions about how you can maintain a sense of contact during the periods when you are absent.

Many professional carers should also find this book useful, given the increasing emphasis on the need to treat people with dementia as people and to meet their social and emotional needs as well as their physical ones.

Ausmed Publications; August 2004
130 pages; ISBN 9781597340113
Read online, or download in secure PDF format
Title: Keeping in Touch
Author: Jane Crisp

It means continuing to be in contact with the other person and to interact positively with them. It can mean simply being there for them as a friendly presence, as someone who cares. This is the essence of keeping in touch with anyone, whether they have dementia or not. Keeping in touch is possible, despite the inevitable changes

Keeping in touch in this basic sense is possible with someone who has Alzheimer's disease, even though your interactions with them will gradually change.

You will find that they become less able to engage in exactly the same sort of conversation or activity that you once enjoyed together. My mother, for example, gradually forgot the Jane Austen novels that had previously been a constant point of reference between us. Sharing with them any new interests that you now have may become less possible. They may be unable to recall what you have told them about your recent life, and hence, generally speaking, may seem less concerned about your doings than they once were; they may well eventually forget your name or call you by the name of someone else in the family.

Despite such changes, the essentials of many previous interests that you had in common will survive. My mother and I still shared a love of gardens and animals, and a pleasure in words. Her liking for teddy bears survived too and was to prove an invaluable source of playful interactions between us. And even when my mother became unsure of my exact name, she still had a sense of my basic identity as a much-loved and 'very important person' (these were her own words, during my last visit to her, in reply to a passerby who asked who I was).

What counts most is being in touch - still giving attention to and responding to each other - however simple or minimal the content of our interactions becomes. The physical side of keeping in touch

Keeping in touch is also a matter of physical contact, of being literally close to someone. This was one reason for choosing keeping in touch to sum up what this book is about. An essential part of the pleasure of being with a friend or with someone whom we love is their warm, friendly presence - the familiar look of them, the sound of their voice. We can hold hands, exchange loving hugs, offer a supportive arm when walking together.

I always had a very warm physical relationship with my mother. Touching her, hugging her, helping her with personal grooming were things that I felt comfortable about doing; and these were to become invaluable as a way of maintaining contact with her. Even if your own relationship with your family member or friend was previously not a demonstrative one, you will find that touch becomes more and more important. You will be touching the other person when you are giving them the help and care that they will require; moreover, you will find that more and more they will need the basic reassurance that friendly human contact gives.

Given the increasing importance of physical contact with someone in my mother's condition, there is no substitute for being able to spend time with them in a routine, regular and informal way. I regretted the fact that I lived too far away to be able to help my parents on a daily basis. However, there are ways of keeping alive the other person s sense of you as someone who cares about them, especially if there is someone on the spot who is happy to co-operate in this. When I did visit, I made sure that I was there for at least a week so that I could be company for my mother as I had been on visits home in the past, rather than just someone dropping in to see her in passing. Keeping in touch with someone you know

We usually want to keep in touch with someone because we know and like them - they are 'our sort of person'. Once they have Alzheimer's disease, though, our feeling of still knowing them may well be threatened. They forget things that formerly interested you both. Similarly, changes in their behaviour and in the way they use words make it more difficult to understand them or to see them still as the person they were. However, if we learn to look beyond the changes produced by their dementia we will realise that more of the essential person survives than we might expect. We can draw upon our personal knowledge of their past life and interests to help us recognise and reinforce these surviving elements. But as well as recognising their past self we also need to have some insight into the person that they are now. After all, most people do change and develop over the years, so keeping in touch with someone usually includes catching up on their present self as well as reminiscing about the past. We can do this with someone who has Alzheimer's if we bother to spend time with them and listen to what they are saying. Keeping in touch over the years

We expect keeping in touch with any friend to involve maintaining contact with them over a long period of time. We need to bear this in mind in the case of someone who has Alzheimer's disease, since they may well live for another seven to ten years after being diagnosed. But being with and caring for someone with dementia is often difficult and exhausting so we must take stock of what we will be able to sustain in the long term. If we begin by setting an impossible standard for ourselves, refusing all help and trying to be there for them all day, every day, we will end up exhausting ourselves. Any negative feelings we may have about the person and the burden of caring for them feelings which even the most loving and devoted of carers are bound to experience from time to time become stronger and more frequent. We come to resent the time, energy and money that caring for someone with Alzheimer's involves and wish that they would hurry up and die. And these feelings, and our guilt about having them, exhaust us even further.

My father cared for my mother as long as he was able to, first at home and then in sheltered accommodation attached to the hospital to which she was finally admitted for full-time care. Much as he hated to admit defeat (he has always been a doer and an achiever) he recognised that there were limits to what he could do for my mother if he wanted to last the distance for her. Because he was on the spot he could keep in touch by visiting her each morning, but he also had his own writing project to which he gave time each day and which, he said, 'helps keep me sane' . I had family and work commitments in Australia but I made extended visits to my parents, either alone or with my husband, whenever possible. While I was there I could afford to spend most of each day with my mother, and my father took this as an opportunity to have a break from regular visiting. We also persuaded him to come to stay with us occasionally for several weeks, although he would do this only at times when other close friends were able to make frequent visits to my mother in his place.

In an ideal world, and with unlimited money and energy, we could probably have done more for my mother than we did. But by learning to accept the limits of what we could manage to do, both of us were able to last the distance and to keep in touch with her, regardless of occasional setbacks and bad days, right up to the end. Being realistic about what you can manage to do

What you can manage to do, then, will depend on you - your health, your family and other commitments, your financial circumstances, and the type of relationship that you already have with the person who now has dementia. The choices you make should be ones that suit you as an individual, that allow you to 'last the distance'. Be realistic about what you can sustain over an extended period - caregiver burnout is recognised as a serious problem in caring for people who have Alzheimer's and looking after the health and wellbeing of the carers themselves is a major priority for support organisations such as the Alzheimer's Association.