The emotional impact

Coming to terms with the fact that a member of your family is suffering from a progres­sive form of dementia, such as Alzheimer’s disease, is very difficult. It is hard enough in the early stages to cope with the shock of the diagnosis and the changes that are already noticeable in the sufferer. As the patient’s illness progresses and the symptoms worsen, you will have to adjust to new signs of deterioration. People who care for someone with a chronic, dementing illness need a great deal of support to help them deal with the powerful emotions that their sad predicament is bound to produce. It is very important, if you are in such a position, to recognise your own feelings and to realise that you will need emotional support from others. Far from being selfish, this will help you to cope more effectively.

In this chapter we describe some of the feelings that you may experience and offer some advice.

SENSE OF LOSS

When someone close to you is diagnosed as suffering from dementia, you are bound to feel grief. The changes that the disease brings about in the sufferer’s personality and behaviour and their increasing inability to live a normal life arouse emotions similar to those experienced after a bereavement. You will have to cope with feelings of sadness and distress at the loss of companionship – you are losing someone with whom you previously shared concerns and joys and you may also be losing a sexual partner. This sense of grief will be heightened as you gradually understand the implications of the diagnosis. Coming to terms with your own feelings at the same time as having to look after the sufferer is a double burden.

What should you do? Sharing your concerns and feelings with family and friends can help you accept the situation and perhaps ease the sense of loss. Your doctor will be able to offer you psycho­logical support and to refer you for counselling if you think this would help. Meeting other people who are in a similar situation is another way of finding this sort of psychological help.

There are support groups for carers in most parts of the country and there should be one near you. Some of these are independent local carers’ groups, while others are run by national organisations. The Alzheimer’s Disease Society specialises in the needs of carers looking after people with all kinds of dementia. Age Concern and the Carers National Association are also involved in support groups for the carers of dementia sufferers. The last chapter of this book contains addresses and telephone numbers of these organisations. If there is no support group in your area, perhaps you could start one. Your doctor or district nurse will probably be able to put you in touch with other families, and you could put up a notice in your local surgery or library asking people who are interested to contact you.

ANGER

It is natural to feel angry and resentful: angry that such a terrible thing has happened, angry perhaps that other members of the family don’t help enough, and resentful that the future you had looked forward to has changed. In addition, you will have to deal with the daily exasperations and irritations of looking after the sufferer. People with dementia behave in ways that may make them very hard to live with.
Many people fail to recognise their anger or are frightened to express it. They may pretend to themselves that they are not really angry. Perhaps they are ashamed that they are angry with someone who is ill. But denying or bottling up these feelings of anger is not a good idea. Unless it is recognised and expressed, anger will lead to bitterness and resentment, and this will only make it harder to cope with daily life.
One way of handling these feelings is to find ways to express them. Talk to other people about your irritation and anger. Other carers will know what you are going through, and discussing your feelings with them will help you to cope better.

GUILT

Guilt is also a common emotional reaction. When the disease is first diagnosed, it is natural to look for some explanation for what has happened. Sometimes people feel that perhaps something they did or failed to do caused the illness. If you have worries like this, it may be helpful to learn more about the disease and to discuss your concerns with your doctor.

Feeling embarrassed or even disgusted by the sufferer’s behav­iour, losing your temper, wishing someone else could take on the responsibility of caring, or caring for someone to whom one has never been close – all these can produce feelings of guilt.

You may feel resentful and uncomfortable at having to take on tasks that were normally the responsibility of the sufferer, and this too can cause guilt feelings. Caring for someone with dementia can sometimes involve a reversal of roles. You may be in a position of behaving like a parent to your mother or father. The sort of assistance that sufferers need is that required by a small child from his or her parents, such as help with feeding and washing. It can be hard to adjust to this change of roles.

Most of us find it hard to accept that we cannot always live up to the expectations of ourselves or others. It is very important to be aware of your feelings, to try to appraise the situation realistically and not to expect too much from yourself. You may reach a stage when you feel that the difficulties and stresses that caring for a demented person impose on you and other family members are too great, and that the time has come to arrange for long-term residential care for the sufferer. This decision may produce a sense of relief as the burden is lifted, but also intense feelings of guilt. Talking things over with others may help. Realising that such feelings are common and discussing how other people have coped with them will help keep your guilt feelings in their proper perspective.

EMBARRASSMENT

One of the early effects of dementia is a loss of sensitivity to other people in social situations. The skills that are needed to maintain relationships are often among the first to disappear. The sufferer may lose the judgement necessary to behave or speak appropriately. It may become embarrassing to take them out, especially as strangers often do not understand what is happening. One way of dealing with this is to share your exper­iences with other carers.

Learning how others manage will help you to handle such problems with greater aplomb and less embarrassment, and even to laugh about them. Explaining the illness to neighbours and friends can also reduce your embarrassment, as they will then understand the reason for the sufferer’s behaviour.

LONELINESS

Being a carer is a lonely experience. The pressures of looking after a demented person make it difficult to maintain social activities. You may feel very much alone if the sufferer is the person with whom you used to share everything. Loneliness can make it harder to solve the problems of everyday life, so it is important not to let caring for the sufferer prevent you devoting time to your own needs. Make arrangements to share the care so you can spend time with family and friends or go to meetings and support groups for carers, such as those run by the Alzheimer’s Disease Society. Talking to other people in a similar situation, who understand your feelings, can provide both support and friendship. Make some time for yourself to do things that you enjoy.

Key Points

✓It is extremely difficult to come to terms with the fact that someone close to you is deteriorating mentally

✓Emotional reactions to the diagnosis of dementia include a sense of loss, and feelings of anger, guilt, embarrassment and loneliness