Beating myself up, pros and cons
When memory clinics first came about, a few years back, I was aware, because of the job I used to do, that they were something new and, as I thought then, important. However it took me about two years to get my relative seen at one. I beat myself up that I hadn't sorted this out earlier. She was 'diagnosed' as having Alzheimer type dementia' after two visits and was prescribed Aricept, which she remains upon. I kept thinking, I should have pushed for her to be assessed earlier, especially as I knew the system existed and I should have been on top of things.
In recent months I have begun to beat myself up from a different angle
confused: ). At the point last year where she was deemed suitable for nursing care, the fact that she had the label of Alzheimers meant that she could only go into nursing homes registered for people with dementia ( EMI nursing home), but we had also been told by the PCT ( health authority) continuing care assessor that it would be
cruel to put her into an
EMI nursing home. This cut no ice with the general nursing homes we looked at because once they read that she had the 'Alzheimers-type dementia' they would not accept her despite the fact that she has absolutely no challenging behaviour of any kind.
So I began to beat myself up about having taken her to the memory clinic at all. It had resulted in a label that has been more troublesome than helpful. They diagnosed Alzheimer's on the basis of two pretty primitive memory tests and I couldn't believe how approximate the labelling process actually is. From it, however, a whole slew of issues have arisen, which could possibly have been avoided if I hadn't cleverly put her through the memory clinic routine in the first place.
Yes she got the Aricept, but I do wonder how much worse she would have been without it. I don't know.
There are people in ordinary residential homes who have worse memory loss and problems than my mum but ordinary care homes and nursing homes risk compromising ther registration status if they take people whose notes record that they have Alzheimers. And from what I saw of the EMI nursing and residential homes in our area, they were scary and unstimulating places for someone like my mum. It was my shock at seeing these homes which made me question whether I had been wrong to ever get my mum to go to the memory clinic and attract that damned Alzheimers label. It is not that I am trying to deny that she has memory problems: she certainly has, but she also has retained a whole lot of her personality and social skills, and I dreaded the thought of her going into the unpromising surroundings of specialist EMI care/nursing homes. I still do.
Having said all that, there are ways of getting admissions to ordinary nursing homes depending on the principal nursing need, and my mum is in an ordinary nursing home now. I don't think she has missed out on specialist care that might have been available in an EMI nursing home. I am a thorough-going sceptic now, you see.
Access to the Aricept was the main benefit of the visit to the memory clinic, but it ( the visit) was also the start of a long scary journey. Skye is right. It's the monitoring that matters. On the whole I would try not to beat yourself up. The system is bad enough without us all administering our own bruises! We do what we think is right at the time and it is not our fault if there is no perfect answer or things are worse than we anticipated. We are not the professionals, just loving relatives wrestling with a really tough set of problems in an imperfect care system. Look after yourself, and good luck.
Deborah