An update
There have been one or two other theads started about stopping Aricept (Donezipil) recently, so I thought I had better update this one, for better or worse, as it may be partially helpful.
Nothing is ever straitforward and this saga is no exception. Despite my annoyance and disgust with the GP, he had, up until December, proven to be likeable and attentive to my mum. His intransigence over the Aricept was out of character and depressing. As a result of the impasse over prescribing Aricept he referred my mother to a psycho-geriatrician who turned up to assess her a few days before Christmas and about a fortnight after the drug had been stopped.
The psycho geriatrician was half an hour late and arrived at the time when my mother is usually put to bed for the afternoon. He asked me to withdraw from the room as 'too many people around might confuse her' but kept by him a nurse from the NH and a manager, whilst I stood outside the room on tenterhooks. After about 4 minutes he asked me to come in and immediately asked my mother if she knew who I was. She didn't, which was used as evidence to blow away my statement that my mother recognises me.
In his view, my mother might not have Alzheimers, and more probably has vascular dementia. There are no GP records in my mother's file predating her admission to the NH two years ago. Had she had a brain scan? In this district Alzheimers is only confirmed after a brain scan. My mother had her Alzheimers diagnosed by a psycho-geriatrician at a memory clinic in a neighbouring borough when she was cared for in a CH 'across the border' so this doctor proposed writing to the neighbouring psychogeriatrician to find out what diagnostic tests had been undertaken.
He based his diagnosis of vascular dementia on the fact that my mother's words are confused and because of a vascular incident in the past. When I asked what he was referring to, he reminded me that my mother had had a heart attack previously. I was amazed, because the heart attack was perhaps 25 years ago and hardly seemed relevant. He also said that in this distirict Aricept is not prescribed for late stage dementia. It was in vain to point out that the Aricept seemed to be keeping my mum stable, as he preferred to attribute any stability to the care from the nursing home, not the Aricept.
It was left that he would liaise with the other psycho-geriatrician and come back and review my mum after Christmas. In the meantime he asked the staff to monitor whether my mum was showing any deterioration or not.
When I re-visited my mum that same day, after work, the first thing two of the carers said to me was that my mother had been asking where I had got to earlier in the morning and calling for me by name. Sod's law that she didn't recognise me when the doctor was there later in the day!
Since then I have been watching my mum carefully, and to my surprise, she didn't seem to be any worse in the first few weeks. The only deterioration that I could honestly report was that she no longer seemed to recognise me as easily as before.
She doesn't call out in relief when I walk into the dining room, but still smiles and calls me darling after a little while as if she does know me. And once in a blue moon she calls me by my name. She has cataracts so it is hard to say whether this is making it more difficult for her to recognise me, let alone her poor hearing, which really is pretty bad now.
By the time the psych-geriatrician revisited a few weeks ago, there was little to report to him about deterioration from the staff point of view. All I could say was that I think she is deteriorating a little because she doesn't recognise me as readily, but he hadn't believed she recognised me from the outset, I suspect.. I also notice that she sleeps more now, I think, and in the last few weeks has been more difficult to feed. On the day of his re-visit, she was too sleepy to even respond to him.
His view was that my mother has mixed dementia, (vascular and Alzheimers), that it is not appropriate to prescribe Aricept for her because she is in late stages, and has gone downhill since the Aricept was prescribed. I thought this was a rather drastic statement. Of couse she has gone downhill, no-one expects Aricept to hold things back forever, what exactly did he mean? She has been stable for ages.
Well he showed us records of what she was able to do when she was first prescribed Aricept in 2005 such as cooking for herself (!!) and pointed out, rather unnecessarily, that she can't now.
(Actually when she was started on Aricept, she couldn't make herself a cup of tea, let alone cook for herself, but now she has proven not to be Delia Smith in her 94th year, she may not have Aricept.)When I repeat that my mother has been stable , prior to the withdrawal, for a long time, he simply says that is because of the good nursing care.
His final coup de grace was that my mother does not have capacity to agree to the re-introduction of Aricept. (I have EPoA but nothing more). How come it is OK to stop treatments when someone lacks capacity, but not to re-instate them?
I still feel sick about all this. I thought the Aricept was sustaining my mum and now she
is very gradually getting more confused, but the decline is hardly perceptible to the carers and could be attributable to a number of other factors.
And of course, I know she doesn't recognise me as easily as she did before. So the dilemma has been along the lines of, is it fair to go to war over the fact that my mum doesn't recognise me, or is that too selfish a reason? I think it is too selfish a reason. And if the whole issue can be batted out of court on the grounds that my mother doesn't have capacity to consent to take the treatment anyway, what is the point?
I'm sorry this is not a straitforward update. Longwinded and perhaps a bit depressing. I do feel depressed about being unable to improve my mum's care. She told me I was a blessing the other day, and she really loved me. " You must have had a wonderful mother" she added.
I assured her I still have a wonderful mother and gave her the biggest hug.
