Forgotten, ignored ... why isn’t there any real help for carers?
My 85-year-old wife was diagnosed with mild alzheimer’s in 2008 and now has the advanced form. It took me some time to persuade her to see our very helpful GP and it was quite a time after diagnosis that she agreed to go public about her illness. I can’t see any advantage in all this pressure for early diagnosis. Who wants to be told before it’s absolutely necessary that they have an illness for which there is no cure and, as a result, they will gradually become brain dead? My wife tried — unsuccessfully — the only medication directly related to alzheimer’s, which may slow the progress of the disease for a short time. She was excluded from the Memory Clinic by a consultant with the words: ‘We can’t do anything for you. Try the alzheimer’s Society.’ Since then, no one from the Memory Clinic has inquired about my wife’s health. apart from our GP and an occupational therapist, no one in the NHS or any relevant charity has contacted us to offer help. one national dementia charity simply ignored our absence from a dementia cafe for a few months. When I asked why, I was told: ‘We don’t contact people by phone as we may be accused of harassment.’ Instead of pushing for early diagnosis, the health authorities should be looking hard at how little is done to help carers acquire the skills needed to cope with the many changes in behaviour that occur as the illness progresses. In my wife’s case, I have to cope with aggression, both physical and verbal. I care for all her personal needs and have full responsibility for keeping her clean, as she has no idea what to do. She gets out of a car if left alone and even tries to do so when travelling on a motorway. She hides things. She constantly tries to get out of the house and I’ve been woken up to eight times in the night for years. She calls me ‘dad’ and constantly asks where her husband is. In all the time I’ve spent listening to NHS and charity speakers, I’ve never heard anyone talk about the fact that carers have so many behavioural changes to cope with daily. There are about 700,000 unpaid carers looking after people with dementia in their homes in this country. Is it unreasonable to expect that our proper needs should be recognised and basic training made available to us? I can’t adequately describe how desperate I’ve been for the past six years to receive the type of phone call I got just the other day from a charity worker who responded to an email I’d sent requesting information for carers. She is a rarity in that she had cared for a parent and understood the problems I face. Too many dementia workers are very inexperienced in their field. as one experienced carer said to me recently: I take advice only from other full-time carers.
GEOFFREY BOSTOCK, Harpenden, Herts.