Lifeclass: 'my husband is dying of cancer' Last Updated: 12:01am BST 13/05/2008 Page 1 of 3  Have your say      Read comments

Lesley Garner responds to a woman whose husband is slowly dying of cancer Our new lifeclass page More health news and features Dear Lesley, Having read your article about grief, I'd like to ask how you can so glibly say that a sudden death is harder to recover from than one that comes at the end of a long illness? Have you ever had someone close to you die slowly from cancer?   Caring for someone with a terminal illness is a kind of death on its own My husband was diagnosed with cancer about two-and-a-half years ago. He now lives in a nursing home because he needs too much care to stay at home with me. We've lost most of our friends because we can neither go out with nor entertain people any longer. Neighbours avoid eye contact with me as they don't know what to say. Those friends who do phone only want to talk about my husband's cancer, not realising that, after a day sitting by his bed, it's the last thing I want to discuss. I am neither a wife nor a widow. I will live in limbo for however long it takes for my husband to die. And I am having to work harder physically than at any time in my life because of all my responsibilities. advertisement At least if someone dies suddenly, the bereaved person is free to return slowly to normal life. I don't do anything outside the house, because I'd feel guilty enjoying myself when my husband is so ill. So no, I don't agree with you that death at the end of a long illness is easier to bear. Deborah Dear Deborah, Thank you for your letter. I am sorry for your difficult situation and I think there has been a misunderstanding. I said, on the evidence of what Daily Telegraph readers wrote to me, that the death which follows a long illness is less shocking and pole-axing than a sudden death that finds survivors utterly unprepared. What you describe is a kind of living death. People who are caught in the business of caring for sufferers of chronic or terminal illness talk of beginning the grieving process before their loved one dies and of having time to prepare themselves for the coming death. They also say that their feelings about such a death are mixed because there is a release in it, for themselves and for the person who has been suffering for so long. That isn't the same as saying that caring for someone who is dying is easier than being caught unawares by the sudden death of someone you love. Caring for someone who is dying is a kind of death of its own, and that is what I want to look at this week. The Prime Minister, Gordon Brown, and Health Secretary Alan Johnson may promise to look into the future of care but they are not there when you are chained to someone's bedside in a never-ending present. You are not the only person I have heard from who is lost in this draining and exhausting limbo. I have no easy solutions, but I really want to get across the message that carers need, before anything, to care for themselves. I have had three letters from women who talk of this kind of half-life they are living. One has a husband with Parkinson's disease, another has a husband suffering from Alzheimer's, the third cares for a husband disabled by a stroke.

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Caring. I cared for my husband at home while he died of prostate cancer. He died at home because that is what he wanted but it was totally horrendous with no support from professionals that I had expected to be there. This is not the reason that I am writing but because one of the things that I inherited from my husband was his widowed mother who is now 96 years old. She lives "independently" in her own bungalow - in other words I do her shopping, cooking, cleaning etc. as she won't have anybody in. I am firmly tied in a place where I do not wish to be. I am locked into the past with her and unable to move forward in any way. Financially it is also very difficult because half my income died with my husband but I can't claim carers allowance for caring for my mother-in-law because if I do they will deduct it from her income!This is one of the quirks (and governmental excuses) that are used to cut back spending on carers. Because of my caring role I am unable to work, because we were stupid enough to save I have too much capital to claim any form of benefit, I cannot claim carers allowance. I have to make holes in my capital because I am maintaining two homes. I'm going broke and I'm exhausted but who actually cares?
Posted by Frances Turner on May 13, 2008 7:04 PM
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I care full-time for my 88 year old father and have found the 3 hours per week respite provided by Crossroads for Carers to be an absolute lifeline. I was referred to Crossroads by hospital social services, and find that this break from my caring responsibilities enables me not only to do shopping and other essential taxks, but also gives me a much needed "battery recharge". Unfortunately, Crossroads for Carers are very under-funded and short staffed; they need and deserve all the credit and suport they can get.

Posted by Denise Jackson on May 13, 2008 5:43 PM
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With regard to your article of 13 May. I would like to express my agreement with both Deborah and Lesley.
My first wife suffered from MS for 10 years before she passed away in 1999.
She became increasingly disabled through that period. Unusually for MS, she started losing her mental facilities early on, but also became progressively more disabled, being unable to feed herself or bath or toilet herself from fairly early on, and was bedridden and on a a feeding tube for her last two years.
My experience was similar to Deborah's. Our friends disappeared and our families could not cope. They virtually cut us off or refused to provide any assistance, becoming abusive if we sought help.
The result was we became completely isolated apart from one supportive friend. The 24 hour care required by my wife meant a social life, hobbies, friends and interests all disappeared.
I was very fortunate to have a supportive employer, so I continued to work and they provided private nursing care when I was at work. Only that kept me sane.
Then my wife died and there was nothing. No friends, no interests, no hobbies. Everything that took all my time and attention had gone.
No one can prepare you for that. I can understand the desolation of a sudden death, but the sudden 'nothing' when the person you have been caring for 24 hours a day dies is completely devastating. I think far more so than the bereavements I have seen from heart attacks in the last few years. because they still have friends and families.
Posted by Richard Aspden on May 13, 2008 5:04 PM
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I knew for nearly 12 months that my mother was going to die. Even at the end, when it was obvious to everyone what was happening, it still came as a truly mind-numbing shock.

My step dad died of a sudden heart attack in the kitchen, my mum died a (painless) death from lung cancer. I really don't think either way is easy, although I would say that being there when someone dies never leaves you..... it's part of life though, and it's ok: death no longer bothers me.
Posted by Bill Beetham on May 13, 2008 3:10 PM
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Its awful when it happens but it is part of life. And this woman's problems are going to come to an end quite naturally sooner or later. Barbara Gray-Forton seems to have a much better point of view. I don't think one can be too caught up with oneself in a situation like this. After all, it is her husband who is suffering the real pain and fear. For better or worse....
Posted by veracity on May 13, 2008 12:51 PM
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I agree with Lesley - I too have been caring for my husband since he sustained a severe stroke in November 2003. Following six months in hospital then returning home - some months later diagnosed with colon cancer. I agree this has been a most painful part of my life to bear physically and mentally. My husband and I work hard each day to make it as enjoyable as possible despite him feeling ill most of the time. With regard to neighbours - on the whole we are fairly lucky. They did shy away but we just pushed ourselves forward ignoring their slights. One very close neighbour who had has ignored us for almost four years tried to run away when my husband approached in him in his wheelchair - the neighbour explained he hadn't been to see him because he had been too busy! What prejudice or ignorance of long term illness. Incidentally, very early on into my husbands illness I stopped referring to myself as a carer (maybe on paper) because it took away that which is most sacred to us 'our marriage'. We carry on each day with as much humour as we can muster.
Posted by Barbara Gray-Forton on May 13, 2008 11:25 AM
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