LOOK AFTER YOURSELF CARING FOR A RELATIVE WITH DEMENTIA: GUILT

For many people, guilt is the most destructive of all the emotions aroused by caring for a person with dementia. It can undermine the carer’s self-esteem and can arise, initially, as a consequence of choosing a course of action deemed best for the sufferer. On the one hand the family may decide to have an elderly parent living with them, so that they can care for him or her; on the other they may decide that the sufferer would be best looked after in a hospital or a home. In each situation the carers will believe that the path they have chosen is best for their relative, either because they are preventing them from having to live in an institution or because they are avoiding the need for them to live at home where everybody else in the house may be out at work or school, for example.

So often, both approaches result in considerable guilt. The family that have decided to entrust the care of their relative with dementia to an institution feel guilty about not looking after him or her themselves, while the family who have elected to keep their relative at home may worry that by providing such a high standard of care they have prolonged a life that is causing distress to the sufferer and may also have introduced all sorts of stresses and strains into the family that they never dreamed would occur. Whatever you do is likely to appear to be wrong at some time. There are very few situations to which there is only one correct answer — in most you have to accept the best compromise, and this will vary very much from family to family. It has to be remembered that by the very nature of compromise, there are bound to be disadvantages to the chosen course of action.

Many of the other problems that are mentioned in this chapter — anger, changing family responsibilities, the possibility of your own physical illness, sexual relationships, and so on — may well make you feel guilty and undermine your self-confidence. As with so many other similar positions it is impossible to come to terms with such a problem and live with it until you realize what is happening and can accept it. In these circumstances you also have to accept that you are in a no-win situation and as long as you know that you are doing the best that you can, that is all that anyone can expect of you. It is essential that you break free from your own particular circle of guilt as much as you possibly can and don’t allow it to stop you thinking positively about the future.

Guilt that is festering inside can be very damaging. You may not wish to talk to other people about it, either because you are too ashamed to admit that you feel guilty because of something that has happened or because you feel they won’t understand your own emotional responses. This is where counselling can be very helpful, whether in the form of attending a support group or on a more individual basis, and discussing the problem with others who have either faced the same problems themselves or worked very closely with families in a similar situation in the past.

You may at times be embarrassed by the behaviour of your relative with dementia, whether this involves something dramatic like screaming in public or forgetting to pay for things in a shop, or more minor problems like poor table manners which are apparent to other people. Incontinence and changing sexuality also cause embarrassment. Many carers feel guilty about their own embarrassment, but this is a situation that you should be able to tackle. Explaining the situation to others involved and asking them to make allowances would be much more helpful than trying to pretend that nothing is happening or that you don’t know what is going on. Sharing the problem, where this is possible, will often relieve the tension and sense of embarrassment. This in itself will help alleviate the degree of guilt that may be felt. So it should be possible in some but not all situations that are potentially embarrassing to reduce the feeling of guilt by reducing the extent of the embarrassment.

Arranging for a relative with dementia to be admitted to a home or a hospital, even for a short period, is one of the situations that often arouses the greatest feelings of guilt. Even if a break is desperately needed or you have been caring for your relative for years and really have got to the end of the road, the feeling of relief is so often mingled with one of shame at having apparently abandoned him or her to the care of others. If the admission is a short-term one, to allow you to recharge your batteries, being advised to stay away or to go away on holiday so that you have a complete break, may make this feeling worse. It is important, however, to put each of these situations in the correct context. As far as a short-term admission is concerned, this is the sufferer’s side of the contract. In return for being unable to continue living at home the sufferer has to accept, albeit unknowingly, some of the consequences of the unsatisfactory nature of the compromise that has been forced upon all involved. A short-term admission to allow the carer some relief is after all in the sufferer’s best interest. It will usually result in being able to stay at home for longer and even if he or she is distressed while away from home, and disturbed for a while afterwards, the memory will soon fade.

When institutional care has had to be arranged on a permanent basis, whether in a hospital or in a private home, there is no need to feel a sense of abandoning the sufferer. The need usually arises after the carers have done all they can to cope for as long as possible and when, because of their own particular circumstances, and possibly others relating to the sufferer, they can no longer provide the necessary level of care. At this point, the sufferer is usually best looked after by people with professional skills. The fact that some families manage to continue caring at home until the end of the illness should not make others feel guilty if they are unable to do the same. Circumstances are never the same and we are all made differently; some people can cope more effectively with particular situations than others and some dementia sufferers are much more difficult to cope with than others.

There is also no need to feel that you are abandoning the sufferer if you continue to visit him or her on a regular basis while it still seems to you that you are eliciting some kind of response. For many dementia sufferers, however, the time will come when it is no longer important who looks after them, but essential that they are looked after in the best way possible. Social interaction is eventually reduced for many, although not all, dementia sufferers and there will come a time when regular visiting may seem less important. If this situation does arise, it is still important to visit from time to time for the sake of the professional carers who have taken over. It will also enable you to keep in touch with what is going on and to be happy that as much as can be done, is being done.

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