Mum - Post Galantamine

[Kathleen]

Hello

My mum was taken off galantamie a few weeks ago it has been reduced gradually and now she has a few days to go before it is finished. Why it was stopped I can not say, the reason being she was on the same medication for three years and it was time for a change. I suspect it is because the 36 months recommended bt NICE was up.

The deterioration has already begun. From an active chatty if confused person she is now slurring her speech at times and when she does speak it is in short 5 or 6 word bursts at the most. The hallucinations are back, although so far very nice ones eg toffee apples, pancakes she has made or butterflies.

The carers at the home have now noticed she is unable to sit down or stand up without help as she seems to have forgotten how to do either, there are other subtle changes too.

Mum is mostly unresponsive to visitors and seems to be withdrawing into herself. She is still eating and drinking well, but the staff are obviously not happy with the way she is going downhill suddenly.

I know the final stage is upon us, so any advice on what is to come and how to deal with it would be very welcome. Is she likely to lose her mobility and speech completely for example?

Kathleen
xx

 

[jc141265]

Kathleen,

Often there is a period of adjustment after medication has been stopped. I would think that if there is such a huge change in your mother's behaviour you might need to pursue this with your doctor and find out if there are alternatives or whether the original medication can be resumed at some point.

It is also quite possible that it is not the reduction in medication that is causing this sudden decline, in my experience with Dad his decline was one big thump after another. It would be all smooth sailing for about 6 months and then whammo, he'd lose a whole heap of stuff....smooth sailing for another couple of months and then whammo again, things would be lost. He went from talking and being able to feed himself and sit down by himself to not being able to do any of these things very quickly over the period of about 14 months. At the moment I am nervous because its been 6 months without any dramatic changes!

The ability to talk I am led to believe depends on the parts of the brain affected. As Dad had more severe fronto-temporal damage than anywhere else he lost his ability to talk much quicker than others. I see lots of people in his home that seem far worse off physically than him and yet they are still able to talk. I don't know whether your Mum has early onset dementia or not, but I have noticed that a lot of the older people with dementia in Dad's section do still have the ability to talk. I've paid attention because I've often thought how wonderful it would be if Dad could talk even if he just spoke nonsense to me!

Even though Dad has lost the ability to feed himself and to sit down without guidance, he is still very capable of walking and eating what is fed to him so it is quite possible that your Mum won't go completely downhill all the way to the bottom! Dad still understands and has done for about 8 months now when I want him to sit down and I can manouevre him to a chair and we do it together. I found when he first appeared to forget it was the second half of the motion he had difficulty with, he could remember to go to a chair, start to bend his knees but then he appeared to go blank as to what to do next. He holds onto me now for that last part!

One thing that can come as a mixed relief is that from reading on here, even though Dad is displaying last stage dementia symptoms, no one knows how long this stage can go on. "Last stage" tends to make you hit the panic button and think that this is it, here we go here comes the not being able to swallow, being bedridden all the other horrible prospects, but so far, so good for us and the panic is starting to subside.

As for you Mum withdrawing, Dad does go into his own little world but if I spend an hour with him he comes in and out throughout it. My mother often complains that he is gone but she spends a lot of her time when visiting talking to others, to bring Dad out you really need to focus on him the whole time and it probably helps that he sees me every day and is used to the routine of me chatting to him. I know myself if I have been absorbed in my own world for a couple of days (i.e. with studying) it takes a bit of effort for me to start interacting with people again.

Hope this helps, best of luck,

 

[Kathleen]

Thanks for your reply.

Mum is now 74 and has been in a home for a year now.

The psychiatrist is adamant that Mum will not be put back onto any form of alzheimers drug again, but he will adjust her medication to treat any symptoms.

She is on a tablet for high blood pressure and a small dose of stelazine that seems to keep her in a calm state and reduce her anxiety.

Yesterday she was dancing to country and western music with first a care assistant, then my eldest daughter, a memory she will treasure for ever.
Mum loves her music and dancing still.

She knew my sister was her daughter, but no name though, still it was celebrations all round. She was so tired after her dancing that she sort of fell into the chair when coffee arrived so the excercise was good for her.

Her speech is quite slurred and she goes off on a tangent constantly, but compared to some others at the home she is in a very happy world of her own.

Kathleen
xx