My Wife H is in the later stages of Alz’s. She has lost the ability to speak, recognises me or others around her. Spends most of her time sleeping and when awake is very vacant. Has no mobility. Has issues with food and drink. All very bleak for H. I have been reading on here about others who have noticed a difference with there loved ones, when the medication has been stopped. I have alway fought against this, just in case! Am I being selfish in the hope of stopping her med’s she will return in some form to me? As things stand at the moment, H is on the surface a shell of the person I once knew. I know she would have no wish to live what ever time she has remaining as she is at the moment. Any help or advice on this would be welcomed.
Hi,
this is a conversation to have with her CPN or consultant, and any other involved family members. The consultant will ask for clear reasons why stopping it may be in
her best interests. No one can predict the effect of stopping her medication.
For my Mum I was concerned that the medication (galantamine) was holding her in a stage of her disease that was highly distressing for her...she was 12 years into her alzheimer's, had no rational powers of reasoning but still distressed that she was not ok. I discussed it at length with her dementia team and I gradually reduced and stopped her alzheimer's medication.
However, it became immediately clear that the medication had been giving her a quality of life that was valuable. Without it, her cognitive functioning and her ability to communicate was even worse, which was even more frustrating for her. We restarted it within a fortnight and she returned to her previous level. I am glad that we tried her without it, as we could know for certain that it was still helping her and in what way.
An exact repeat of this occurred a year later with her anxiety medication (citalopram)...surprisingly, it also had a positive effect on her cognitive functioning and her communication. We also restarted it as it was clearly benefitting her.
In the light of this information, I am devastated that my dad's medication (galantamine) was stopped suddenly by a new consultant when he started to deteriorate, in favour of memantine. I think the sudden change almost certainly added to his deterioration and his distress. Wherever possible, medication changes need to be made one at a time with no other adjustments in circumstances in order to evaluate the effects of the change.
In conclusion, I would suggest speaking with your wife's consultant about a 10 day
trial of reducing/ stopping it and seeing if it brings about any changes in her. I really doubt that you would see any positive benefit of her being off it, but there is no point in persuading her to take it every day if it is not doing her any obvious good. As long as the consultant is clear that any action (or inaction) is in her best interests I think it is entirely reasonable to try and see.
I am so sorry you are in this situation.
With warmest wishes,
Daze