Living with dying
The needs of carers
Husbands, wives and partners may play an important role in caring for people with a terminal illness, and their needs must be considered too. Many of the people we talked to were keen to point out that carers have feelings and worries, but often get forgotten. A woman with breast cancer suggested that carers have to struggle alone without any support.
Discusses the needs of carers and suggests that support is not available.
Its actually much more difficult for them and there's nothing for them, there's no support for them. I think that would be a good subject to use for your thing on the internet. You know, support for carers, because that's a huge problem isn't it? And we talked about it and I said, 'Nah, my husband gets upset if I make a noise, if I go, 'Oh' like that, he goes, 'You alright what's hurting?' ', and I've got so many aches and pains that an involuntary gasp like that is quite a regular occurrence. And he gets so upset and I say, 'Oh, it's nothing, it's just my foot or my wrist or...' and he said, 'Oh I thought it was your arm or your back' and then he gets himself in such a state.
Healthtalk has a separate website on 'Caring for someone with a terminal illness' that you may find useful.
When a person is first diagnosed with a terminal illness the partner is also likely to feel a sense of shock. Plans for the future must suddenly be re-thought, social activities may no longer be possible, holidays may have to be cancelled, and the whole approach to life may need to change. Family relationships may radically change or reverse if a parent who has always provided care starts needing to be looked after. This can profoundly affect relationships.
Explains why caring for someone with terminal illness can be difficult.
They might think everything's nice in life and then suddenly, this happens and if it's, I was going to say, if it happens sort of early on in retirement as I suppose it did for us, when you think you've got many years ahead, then it's a big shock.
I mean my mother lived to 101 and her sister lived to 103, well, it was only six months after my mother died that I acquired this illness quite out of the blue when I thought I'd got another forty years to live, and so it puts a different emphasis on life and you have to change your attitude really, and that isn't easily done and it may be even harder for the carer than for the person who's ill.
So I think that the support which somebody such as a hospice nurse, or it might be a Macmillan nurse or there are other forms of palliative care, I think these are essential really, to help people to get through it because I can quite see how perhaps a carer could have a nervous breakdown because of the huge changes in life.
I mean it may be even worse if the person who's ill is working and is bringing, normally bringing in income and then is not able to do so. I wasn't in that position but a young family... so there must be terrible shocks to the system that have to be coped with really.
Carers may feel a sense of love and achievement, but they may also experience many negative feelings and emotions, such as helplessness, resentment, anger, guilt, anxiety, sadness, frustration, loneliness, fear and worry about their own mortality.
It can be physically exhausting to care for someone else, and sometimes the health of the carer suffers too. A couple who regularly went to the gym together both stopped when the wife became ill. As a result the husband put on weight, and was later found to have high blood pressure.
Her husband's health suffered because of her own illness.
And we discovered that whereas the two of us had been going to the gym regularly twice a week, it all suddenly stopped when I became ill and so he wasn't going to the gym, and so he put on weight and then he was found to have high blood pressure and so on. And so that's all been dealt with now, but it was actually over a year before we realised that his health was suffering because of my illness, so that's something which has to be born in mind.
Caring for someone who is seriously ill can be very time consuming and may leave the carer feeling isolated. One woman who cared for her husband stressed the importance of having one's own time. She tried to see her friends while he was asleep in the afternoons.
Some carers give up work to care for a husband, wife or partner, sometimes with serious financial consequences. Lack of work may also affect self-esteem and sense of dignity.
People sometimes forget that carers have a very hard task.
Right. Care Allowance is not brilliant in Good Care Allowance. I don't know how much it is. I think it's about '53 now.
When you think somebody's given up their work and they're full time nurse and carer for 24 hours a day, it's not a lot to give a person and they certainly lose their dignity. For my own husband that happened.
Is that what happened?
When did that happen?
Quite early on in the disease when he became a carer because at the time my children were very young and they needed... and they were very unsettled because every time I'd go to hospital I'd end up being admitted or they'd come home from school and find me collapsed on the floor not breathing. One time my eldest found me totally unconscious, got me breathing and then rang for an ambulance. At the time he was 5 years old. No 5 year old should have to do that.
So your husband, you say, is a full-time carer?
He was, yes. He is back in employment now, mainly because I think it's important, especially at his age. He needs to be in a job. Plus it also puts a normality range, that even if I go...
Are you all right?
Yes. Even if I go he has still got a job. He's still got something to keep going and I think that's important for a carer. People forget the carers; it's a very hard task. Ironic, you know for a while I was my son's carer and then I became ill so I needed a carer and it is hard. You're on call 24 hours a day and sometimes with him I would never get to bed for 3 days. We'd go 3 days with no sleep.
Support from social services may be needed (see 'Care at home: social services'). One man we talked to had multiple sclerosis. His wife cared for him at home, but she was over 80 years old and needed help with domestic work. He said that carers should insist that they are entitled to the help they need. A social worker can assess a carer's needs.
Says carers must insist that they are entitled to help from social services.
Now that is very sad but that does happen so it is important that if you suffer with any illness, but MS and you have, you don't have the help that you require, that there are ways that you can get it and the first port of call should be the Social Services office in your area. Now some of them are very slow and they try to delay things. You have to be able and be prepared as a carer to push and to insist that you are entitled to help because care in the community is supposed to be the modern concept so go for it and insist that you get the help you need.
Do you think that your wife gets enough support as a carer or are there gaps to be filled?
There are gaps, but I have to, we have to accept a responsibility for that ourselves. I would like to see my wife having for example someone to do a bit of domestic work, because my wife is eighty odd and I don't want to see her driving herself into the ground and I sometimes get very guilty about it and I do. For example if I'm sat in my chair and not in my wheelchair, if I want anything at all I have to turn to my carer who is my wife. Care is very very important.
Carers may be able to get support from wider family and friends. The GP and local palliative care team should be able to help too. Some support groups have special meetings for carers, and individual counselling may be available. However, one woman we talked to said that her husband didn't feel a need for a support group or individual counselling, perhaps because he could talk to her and other members of the family.
Some areas have special centres for carers where advice can be obtained. In Oxfordshire and some parts of London the Befriending Network has volunteers who are trained to offer support to people with a life threatening illness or who are dying at home. The Buddhist Hospice Trust also has a volunteer befriending scheme for non-Buddhists as well as Buddhists, and the Terrence Higgins Trust provides a befriending service for people with AIDS. Some hospices have local befriending schemes too.
For more information on being a carer, see our carers information.
For more information, see resources.
Last reviewed July 2017.
Last update August 2014.