Living with Dementia June 2008

Peter Gould was the sole carer for his wife, Sylvia, who had Alzheimer's. Although he now enjoys life, he reflects on how his caring role drove him into the ground.

I didn't know what I was doing most of the time

says Peter Gould, referring to what he has labelled his 'annus horribilis.'

Peter's wife, Sylvia, was diagnosed with Alzheimer's disease in January 2002 aged 74. Her deterioration was so rapid that she died in November 2003. This swift deterioration took its toll on Peter, then aged 80, who had very little support and was in ill health himself.

Peter says,

When the diagnosis was made, we were told to get in touch with social services but apart from this there was no information. Someone came to assess her financial needs but confusion over the questions meant we didn't get any support. We were also told it was too late to get an EPA as Sylvia's dementia was too advanced so she couldn't give permission. But it wasn't really money I needed, it was guidance.

Peter had a daughter who lived locally, but a fall out with Sylvia made it difficult to accept help. His other daughter was in Australia, and Sylvia's own children worked long hours so could not provide support. Peter, meanwhile, was trying to cope single-handedly with back, shoulder and prostate problems.

He says,

As the year went on I had to be more and more focused on what I had to do for Sylvia and it was becoming increasingly full time, without help. Sylvia was in a world of her own. Sometimes she would answer and other times she would ignore what I said and drift away. I started to get lonely as we could no longer have a proper conversation.

I didn't have a lot of sleep during the night so had little energy during the day to do all the necessary things. I couldn't go leave Sylvia alone. On one occasion I went for a break in another room and the next thing I knew she was half way down the street. My neck and shoulder problems were exacerbated as I had to help her all the time, and this affected my confidence.

The situation was also making Peter's prostate problem worse, and by September he had developed a hernia. His GP arranged for him to have a double operation on his prostate and hernia.

Peter said,

I couldn't see how I could go into hospital for an operation for two  weeks. I didn't know what to do. Sylvia's daughter and son-in-law had returned from holiday so I presented them with a fait accompli. Sylvia's daughter agreed to move into our house and take turns with her brother in looking after her.

Following the operation, Peter's daughter Pat offered to help for four days a week. Peter says,

Pat's help was essential but I was anxious not to overtax her. Events were unravelling faster than the remedies to deal with them. I was at a loss.

Peter contacted his GP, and within a couple of days later a nurse, Clare, called at their home. She provided them with incontinent equipment and arranged for Peter to have respite. He said,

I remember Clare calling offering a week's respite for the following week. I broke down and said, ''I don't think I can last until then.'' She then called and told me she had arranged for Sylvia to into the local hospital dementia ward the following day, permanently.

This was unqualified relief as I felt I was on the verge of a nervous breakdown. Within ten weeks, Sylvia was transferred to a nursing home, where she died two weeks later.

Following Sylvia's death, Peter went to Australia to spend three weeks with his daughter. He said,

Going away made all the difference. I came back full of beans and now have a very full life. I belong to the U3A, give talks on deaf awareness, I belong to Worcestershire Air Force Association, and have just had a book published about my ten years in the RAF.

Reflecting on his caring role, he said,

I always thought I could cope with anything. During my time in the RAF I completed 45 operations over Germany but the stress of caring became too much. I still find it astonishing that when I was 65 I was considered too old to do a job I could do standing on my head, but at 80 I am considered young enough to do a 24-hour day job for which I've had no experience or training, and with no support.

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