Carers of people with dementia

Friends and family

To be the principal carer for someone with Alzheimer's disease can be lonely and exhausting, it may mean being available 24 hours a day. In such a situation friends and family are invaluable and make all the difference between a life which can be endured with courage and effort and one which is quite likely to destroy the carer before the one who is being cared for.

But supporting a carer is not something that everyone does naturally. Some people seem to fail to appreciate how much they can help or perhaps fear that if they offer they will find themselves committed to doing more than they feel able to accept. Many carers said that it is in this situation that you find out who your true friends are, but many more praised the selfless and sensitive way in which help was offered. One elderly carer suggested that friends were likely to find her very boring now that she did nothing other than care for her husband at home. One carer realised that a neighbour and former friend was frightened by his wife's dementia.

One woman described how hurtful it was when she was looking after her husband who was much older than her and she felt that people avoided contact with her and even seemed to cross the street rather than talk to her, but that after he died they suddenly seemed pleased to see her. Others talked of people who promised to be in touch but never were. Some, who felt that many of their old friends were unable to cope with the situation, described the support they got from new friendships that had arisen through meetings with other carers.

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One man who had felt that he had lost touch with many of his former friends made a conscious decision to get in touch with some of them with excellent results.

One woman who had a full time job while caring for her mother, at first nearby and later in a nursing home, described how their many friends shared the daytime surveillance of her mother some of them on a voluntary basis others accepting some payment. One man who belonged to a choir made a point of telling all the other members of his wife's condition and as a result there was a rota of volunteers, eager to be of help.

Members of the family can be can be an essential support, a source of irritation and a worry, sometimes all of these together. One worrying situation for a carer was when she didn't want to have to admit to her husband's elderly mother that he had Alzheimer's disease.

Two of the carers interviewed had young children. In one case they were very young. For a time, before the diagnosis was made but after he had lost his job, the children were cared for by their father with dementia while their mother worked to earn a living for the family. However, it became apparent that he couldn't be relied on to remember what what they needed, it became impossible for his wife to continue to care for him and the children.

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Another mother became worried when it was apparent that one of her children was developing psychological problems which were attributed to her distress over her father's increasing dementia. At first she was worried that the presence of their father could be an embarrassment and that her children would feel uncomfortable about inviting friends to the house. But she decided that they were old enough for her to be very open with them about the nature of their father's illness and she was convinced in the end that this was helpful for both her and them.

Several people caring for a parent at a distance admitted that this put considerable strain on their own families who had to come to terms with either being abandoned at short notice or having to make frequent visits to their confused grandparent when an emergency arose.

Siblings may be expected to feel an equal responsibility for caring for a parent who has dementia, but in practice it was often one member who saw themselves as carrying the main burden of care. There were various explanations for this. Sometimes it was geographical, the parent happened to live closer to one of their children. Sometimes the carer perceived their relationship with their parent as being in some way different, closer than their brothers and sisters.

One carer could appreciate that for her brother or sister to visit their mother involved several hours travelling, but wished that they could at least inform her when they were going to visit so that she could know when she was going to be relieved of the responsibility, which she felt otherwise was constant.

Four sisters who tried to take equal shares in the care of their mother admitted the tensions which existed in this situation, especially when it came to the deciding whether the time had arrived for their mother to go into a nursing home.

In other cases, carers commented on the fact that their parent's illness had actually brought them closer to their siblings than they had been for many years. One carer describes how her brother and sister were helpful in letting her off the hook when she seemed to be tempted to ask her mother to live with her.

Sometimes the attitudes of family members were distressing. Some people felt unable to face visiting their demented parents, claiming that they could not see the purpose of visiting someone who was not aware of their existence. In one case it was the son who found visiting his mother too much to bear while his sisters found ways of getting on with her which was particularly welcome to their father.

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One carer felt that her partner's son was afraid of the genetic implications of his father's illness and for this reason wanted to distance himself from it. One carer whose own children offered her much needed support felt unsupported by her husband's children. She described how her husband's daughter who lived in America rationalised her reluctance to visit her father.

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Last reviewed March 2015.

Last updated March 2015.

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