The role of friends and family of a carer for a person with dementia

To be the principal carer for someone with Alzheimer’s disease can be lonely and exhausting, as 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.

A former friend was frightened by Iris’s changed appearance seeing it as a sign of ‘madness.

Age at interview 78

Gender Male

Age at diagnosis 76

View profile

Earlier on when Iris was still in her social stage that, people who were immensely kind and, to, in any form of trouble or sort of illness, are very often terrified of madness, they, I don’t mind saying this just to you. A very nice woman who lives just in this road who, would do anything for one and you know kept an eye on things when we went away and that sort of thing, was really quite unable to help at all. And I entirely sympathised and I said ‘Look, don’t worry, I quite understand.

And the sight of Iris filled her with literally terror. Something in the way of the eyes, the change in the face perhaps and I mean I think you know this is a very natural reaction. People always have been frightened of madness and you can’t do too much about it, some more than others.

Embed Print Transcript

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.

Being a carer affected her perception of relationships with others.

Age at interview 60

Gender Female

Age at diagnosis 72

View profile

Have your relationships with family and friends changed over this period?

Not with my family I don’t think, although they don’t live near, they live down in [place]. They, were very good, they came up when they could. And in fact [my husband] always recognised them. He had no family of his own. And he was, always pleased to see them, and he, even if he didn’t know who they were, he knew them.

My relationships with friends yes, has changed. Some have become much closer but others, I’ve all, I’ve lost touch completely over the five or six years and although they say ‘Oh its nice to see you back,’ if I go somewhere, I think well, you know, you didn’t even bother to pick up the phone to see. You knew [my husband] was ill. You knew I couldn’t get out and you didn’t even bother to really just, even acknowledge my presence sometimes. And some of them simply, if they saw us in the town, and if [my husband] was behaving less than ‘normal, would simply avoid us.

And I mean I do, understand completely that. And I do, and I don’t hold it, I suppose I don’t hold it against them, but I have the greatest difficulty in forgetting it. And also other things I find that I am slightly bored by the trivia of things. You know, who won which darts match or cricket match, or who won this, or what the neighbours said, not that it was ever of any great interest I must admit!

But I am simply, I’ve become more detached from people I think. Partly as a result of being isolated for a long time and partly because of the circumstances of how it came about. So I think yes it has changed.

Embed Print Transcript

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.

Making the first move resulted in restoring friendships and discovered why people had been reluctant to get in touch.

Gender Male

View profile

What I did was to deliberately make contact with one or two friends that we hadnt seen for some time.

And the response in every case was, was very interesting and was actually quite similar. They were all immensely relieved, very pleased indeed that wed, that Id made contact. Said, I think all of them that I spoke to said We didnt quite know, we wanted to make contact with you, but we didnt quite know how to do it, or whether you would welcome it, or whether [name] was able to meet up with us again. We just didnt know how to play it at all, and were so pleased that you made the first call. And wed love to come and see you, or you must come over and see us.

So weve picked up again, in some cases with people we havent met for a number of, a number of years, and that’s been, has given us both great, great pleasure, and I’m hoping that we can go on doing that. So I think that what I want to say about that is, is that, if you’re in any doubt as a carer whether you should pick up a telephone and talk to old friends or not, I would say do it.

I can only think of one case where I think the message I got was perhaps we Don’t want to know about this you know, OK, and I understand that. But in general it’s brought us a good deal of, of pleasure. So things are slightly better than they were a few months ago.

But of course, at the same time you do make new friends, people in the same situation and those have been immensely important to us, and are as, are as dear to us now as some of the friends weve had for the whole of our married life. So that’s important as well.

Embed Print Transcript

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 and 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.

Was open about the problem with all their friends and found himself with 16 regular volunteer helpers.

Age at interview 72

Gender Male

Age at diagnosis 62

View profile

I was always very open with it, with all our friends, we were both in the newly formed choral society and I made no secret that there was a problem to my friends. As a result they knew how to react. I ended up, this is what [name]s always amazed at, the fact that I had sixteen volunteers I could call on and I still have a list with the dates, so I look up, Oh I havent used so and so for three months and Ill ask them, if there was a meeting I wanted to go to or something like that.

And they were marvellous, they came and they all knew [my wife] well, they knew what the problem was, it wasnt that bad apart from the fact that one couldnt leave her on her own, she got anxious. We both also sang in the local church choir which again is the same sort of membership. And because my son plays for the local cricket club we were very involved there socially. So we had volunteers from the cricket club as well. Most people seem to have about two [name] reckons, she said Ive never met anyone who had sixteen.

Embed Print Transcript

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.

Unhappiness at having to admit to her husbands mother that he had Alzheimer’s disease.

Age at interview 62

Gender Female

Age at diagnosis 50

View profile

And I think another very bad moment was when I had to tell his mother who was in her eighties, that [my husband] had got Alzheimer’s, because I’d pussy-foot around a bit because she was terrible worrier and I kept saying ‘Oh [my husband]’s got a neurological problem. And she kept saying ‘Oh he keeps going to the hospital, haven’t they found out what’s the matter yet, haven’t they found out what’s the matter yet?’

And then in the end, I mean in a way I was hoping that [my husband]’s mother would die before – because she was quite poorly – and that she would die before I needed to tell her because I think she knew what it meant because she used to work as a volunteer in a hospital and had seen dementia.

And having to tell her I think was a horrible moment because I think your child suffering with dementia must be almost worse than having your spouse, because still, you still see them as so much younger. Time and again she said ‘I wish I could change places with him. That was a nasty moment; it really was.

Embed Print Transcript

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 they needed, and it became impossible for his wife to continue to care for him as well as the children.

Had to choose between caring for her husband and caring for their children.

Age at interview 52

Gender Female

Age at diagnosis 46

View profile

I certainly couldn’t have looked after [my husband] and the children and I couldn’t have looked after [my husband] and continued working.

And there came a point when it, when it came to a choice between [my husband] and the children, I had to choose the children. But it was never a decision that I put much thought into because I say it was never a decision I intended to make. It was made for me, by the circumstances and by the fact that I just could not continue to keep [my husband] at home;

Once he started needing personal care, it was bad enough keeping the system going around [my husband]. Once [my husband] needed looking after rather than just a safe environment to survive in, then it was more, I think it’s more than one person can do, but it was certainly more than I could do.

Embed Print Transcript

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.

Benefited from being open with her children about how their father’s dementia affected all of them.

Age at interview 52

Gender Female

Age at diagnosis 57

View profile

And another thing I would say, if you’ve got children that are not adults off, you know, leading their own independent adult lives, be completely and utterly honest and open with them. Children sense when they’re not being kept in the picture. And the disease itself is an isolation, if it’s a dementia. If within your family you then further isolate your children because you’re not being honest, that’s, that’s very difficult for the child. I think most children can cope with the truth. They can cope far less easily with not being sure whether they’re being included in the truth or not.

That’s my experience. Weve always been open and it’s worked. And if somebody is finding a particular facet of [my husbands] behaviour difficultNow the one person who couldn’t be open about that ended up with anorexia. And the others have been able to be open. Weve cried together, weve laughed together, weve prayed for each other. And that really is, if you can just keep everybody communicating and if somebody is feeling desperately guilty because they’ve flown off the handle and highlighted a deficiency when they wish to goodness they hadn’t, you know, let’s have that out and help the person through it, that’s what weve done.

And if you feel you know, particularly my youngest daughter, she felt that she had been getting irritated and then perhaps she tried hard not to, if you can, you know you can see that too, and acknowledge that too, hopefully. I think you’re just in it together really, particularly if you’ve got school age children. But they need to feel that and it’s a great-heightened sense of security, because it’s a terribly insecure feeling when a parent is changing from what they were. And they need to feel as secure as they can really.

Embed Print Transcript

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 that of their brothers and sisters.

One carer could appreciate that for her siblings 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 deciding whether the time had arrived for their mother to go into a nursing home.

She communicated with her siblings by phone and email over important decisions about their mother’s care.

Age at interview 45

Gender Female

Age at diagnosis 77

View profile

Was that a difficult decision, to go for a nursing home rather than some other arrangement?

Well certainly the whole nursing home debate, I mean were four sisters and were all strong characters has, is, is ongoing, it, the debate rages on. Two of the sisters, my sisters feel that she should stay in her own home for longer with a carer. Myself and another sister feel cos weve found such a lovely place which is very specialist in the treatment of people with Alzheimers and is a very caring place that it would be better for my mother and all of us if she was in, the home.

So were sort of tugging. You know, January really is the crunch time because then well know if there is a place available. You know, in a way its, what can I say, you know. In some ways its great to have four of you cos you can support each other and in another way it can add difficulties cos also four characters have to make one decision.

So theres a lot of emails that get written, a lot of phone calls. Weve probably become closer because of it. I mean, as I say weve had, more arguments, weve had more heated discussions and stressed sort of debates cos obviously what happens to your mother or any aged parent is a very emotional issue and were all very close to my mother. So we all have a very good relationship with my mother.

So I think we, the four of us I know, often several times a week lie awake at night thinking about it. Thinking about whats the right thing and what isnt the right thing, tossing, turning. Then its the secondary repercussions about Should I have said this to such and such a sister? or What does she mean by that email? or Ill have to talk to her separately. You know, we have a lot of side group meetings.

And I think its coming to a head with us actually Clive because my mothers about number three for [name of home] which is a home near [town]. Shes on the list at about number three so probably Jan/Feb time well know that theres a place coming up. Thats what weve been told. So there might even be a place next March or April and two of us at the moment think we definitely should go for that because the stress is actually, its creating for the whole family group and I think if anything Im very aware of the stresses its placed on us all and our own inter-relationships with each other.

I would say, you know, there has been some, you know, in the heat of the moment because its a very emotional subject about, also with, when theres four of you caring for one person, who does the most is always the biggie at meetings. People feel over-loaded, were all busy people. Three of us have children and jobs, we all work full time. Thats always a heated one, about who seems to be doing the most. The other is who doesnt get thanked by anybody or who does get thanks. You know, about how we acknowledge each other in a sort of long running group.

Because if youve been going for 3 years and youre meeting regularly I think it sort of, it does affect your relationships. I mean I would say that I, for, have fallen out with one of my sisters about all of this and that relationships sort of not in a very good state cos of things that have been said over the years about Why havent I done more? Why hasnt she done more? You know theres been some sort of nastiness thats come through because were, were all people under pressure.

Embed Print Transcript

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.

Shared decision making with siblings who prevented her from taking on more than she could manage.

Age at interview 53

Gender Female

Age at diagnosis 61

View profile

When it came to looking for nursing homes it became a lot harder in terms of what we wanted and I for a short time debated about whether I would care for my mother here and whether. So we did have a discussion around whether we would sell my mother’s house and, for us to buy a, you know a house and have a granny annexe. And both my brother and sister were quite adamant that they didn’t want me to do that because they felt it was too much.

I was quite prepared to have a go. Well I was, I thought I was! But they were quite firm on that and, not about selling the house but about me taking on caring for my mother. So that wasn’t a disagreement. It was very much you know they both said ‘No, you’re not gonna do that, you can’t do that, and you’ve got your kids to think about,’ and so on. And I suppose that was relieving me of a feeling that I needed to do it.

In terms of the money, because my brother was the Power of Attorney I’ve always had to discuss money issues with him. And I, weve probably had a slightly different approach at times. I don’t think it’s led to any disagreements or anything, it’s whether or not we sell all the shares or you know what were gonna do. And, so yes weve had discussions but it’s never led into a disagreement about you know, no fundamental disagreement.

Embed Print Transcript

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.

His son had a different approach to his sisters to visiting their mother.

Age at interview 78

Gender Male

Age at diagnosis 68

View profile

Well with the family I think my son was different from the girls, I’ve got two girls and a boy. My son used to use the expression that he couldn’t hack it. The fact that his mother was ill with an illness that made her not his mother made it so difficult for him that he didn’t visit her very often. And when he did visit it was a fairly quick affair.

He used to occasionally go along and take his young son with him. His young son knew my wife as Nanna but he, and he used to talk to her as though there was nothing wrong with her and you could see that she enjoyed it, initially anyway. But after a while even the son, the grandson’s attentions began to irritate her from time to time.

And [name] my son gradually reduced his visits and it was always a little bit of a bone of contention between us, the fact that he didn’t carry on, or he didn’t go to see her very often.

Both the girls pulled all the stops out. They went to see their mother as often as they could. They made a fuss of her when she was there, a greater fuss than I could make, made her face up and cut her nails and did all the sort of things that ladies like to have done to them you know.

Sometimes even though it wasn’t fully appreciated at the time it did them good to do it. And throughout the relationship with the two girls was great. They knew I’d done what I could and they were concerned about me and they did their best to share the burden, theres no doubt about that.

Embed Print Transcript

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.

His daughter explained to her stepmother why she chose not to visit her father.

Age at interview 61

Gender Female

Age at diagnosis 70

View profile

She said his face, his voice and his mannerisms were all still there ‘but dads gone. She said it was really eerie not to, find him because everything else was the same. And she said ‘I think I choose to remember him as he was, the brilliant father and grandfather that I knew. I thought ‘That’s a change of attitude!’ Because when I’ve spoken to her shes had quite a lot to say about her relationship with her dad. But she wants news, she said keep her in touch and, she just said a few other bits about my holiday and what have you.

But, I can understand the feeling of wanting to retain your, old memories but I think if shed seen him with me and perhaps come out with us and seen how much he gets from the moment, you know how, although it’s gone almost immediately hes actually happy at the time.

He enjoys doing things and I think if shed seen that maybe shed have felt better about it rather than just remembering him as an empty shell who rejected her. I think that’s a really bad way to finish. And I don’t know whether to get back to her, because shes in America I don’t really want to be tied up on the phone forever and ever. But I’d like to find a way of communicating with her that didn’t sound critical.

I think looking back a lot of her behaviour while she was here was perhaps denial or some sort of deep, deep fear about what she was going to find and how she was going to deal with it.

Embed Print Transcript