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Mum's in hospital for 2 more weeks - Q about medication?

Metalpetal

Registered User
May 10, 2020
113
Hi everyone, thanks to those who commented on my post about mum maybe getting home today. Unfortunately for her, that hasn't happened. In fact, we heard from the Consultant Psychiatrist who has decided he wants to keep her in for another couple of weeks at least.

The reason for this is because they've pretty much discounted Lewy body now that scan results are back, and now suspect Alzheimers. And, as I'm sure a lot of you here already know, there's some medication that can be given to a PWD who has Alzheimers, which can help to ease their symptoms a bit? So the Consultant wants to give that a go. However, one of the side effects of this drug is that it can sometimes cause heart issues, and as mum already has serious heart failure, they of course want to monitor her closely while she's on it. Hence keeping her in for 2 more weeks.

I'm not sure of the name of the drug, but I'm sure some of you will know what it is! What are your thoughts on it? Has it helped you/your PWD? It definitely sounds worth a try!

Mum was apparently very distressed at staying in hospital for another couple of weeks, so the Consultant had to make the decision to tell her that they suspect she has Alzheimers. We'd talked about keeping it from her, but he said she was so clearly upset and confused about why on earth they were keeping her there, that he had to explain the severity of her situation. He said she took it fairly well and did then reluctantly agree that she had to stay. I'm due to FaceTime with her soon (if they reply! the coordinator isn't always as helpful with these calls as we'd like). So I'll see how she is about it/if she remembers talking to him.

So it's disappointing for mum that she's not going home, but I'm pleased that we are now nearer a diagnosis and that they've got possible treatment that can help. I believe with LBD that's not an option.

I would assume - having just read up a bit on Alzheimers - that mum is nearing/at stage 2? Given the fact she's almost permanently in a state of delirium/confabulation and also hallucinating regularly?

Thanks again for your kind words earlier today...
 

Sarasa

Registered User
Apr 13, 2018
1,399
Hi @Metalpetal, that must have been a disappointment for your mum, but better to get things sorted with medication when she can be monitored in hospital than at home.
I don't know very much about drugs for ALzheimers, as my mum has vascular dementia. From my understanding some people do well on them, though they don't 'cure' dementia, rather alleviate and slow some of the symptoms. I'm sure others will be along with more useful advice shortly.
I wonder if there are several things going on and the dellusions and hallucinations are cause by delirum because of an infection. I guess being in hospital a bit longer they'll be able to get to the bottom of that.
Anyway I hope your mum suits the drug and it helps her.
 

Metalpetal

Registered User
May 10, 2020
113
Hi @Metalpetal, that must have been a disappointment for your mum, but better to get things sorted with medication when she can be monitored in hospital than at home.
I don't know very much about drugs for ALzheimers, as my mum has vascular dementia. From my understanding some people do well on them, though they don't 'cure' dementia, rather alleviate and slow some of the symptoms. I'm sure others will be along with more useful advice shortly.
I wonder if there are several things going on and the dellusions and hallucinations are cause by delirum because of an infection. I guess being in hospital a bit longer they'll be able to get to the bottom of that.
Anyway I hope your mum suits the drug and it helps her.
Thanks for your reply - yes they did a very thorough check for infections etc when she first arrived (she's been there almost 5 weeks now, poor thing!). Her brain scan shows 'significant' atrophy to her frontal lobe, so they're pretty sure it's some form of dementia. Not sure why they suspected LBD but now they've had time to monitor for a while and have seen that she hasn't settled down at all, that seems to be pointing them towards Alzheimers. I guess, in reality, the specific diagnosis doesn't really make much difference to her or us! But it feels good to be getting more clarity.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,010
England
My husband was given the drug Aricept when he was first diagnosed with Alzheimers. I believe it helped him a great deal. He started on 5mg and then went up to 10mg a day. He had no side effects at all. He continued to work for 4 years with help and understanding from his staff who knew about his diagnosis. So i do believe with the medication and people understanding it helped us both a great deal.
 

jugglingmum

Registered User
Jan 5, 2014
5,801
Chester
My mum is on Aricept/ donepezil and has been for 6 years.

She was in what is classified as very early stages of dementia when she started on it, although to me at the time she seemed a long way down the dementia path when our crisis happened. Early stages lasts many years in Alzheimers as it can be very slow progression from what I have read - vascular dementia which is the other fairly common one seems to have a much faster progression (colleagues and friends whose parents have had vascular dementia have started showing symptoms, gone into a home and subsequently died in the time my mum has been ill).

My mum had no heart issues when she was diagnosed and started on 5mg, and stayed at this level for some time (due to miscommunication between the medics my brother and myself) which was then increased to 10mg - I understand she should have moved to 10mg much quicker.

She has since been diagnosed with Atrial fibrillation, and is on some medicine for this, the GP said that he can hear it when he listens to her heart.

I have read on DTP that people with heart issues are often refused this medicine as the risks are considered too high.

I think my mum benefitted from Aricept, her anxiety levels fell considerably, although there were other factors in this. She didn't seem to deteriorate for a long time after starting on it, or if she did very very slowly - and I think sometimes only with hindsight do you look back and see changes.

If she is in hospital being monitored it seems worth giving it a try.

When mum was diagnosed I worried about the stages but I have learnt to treat each issue as it arises as many things overlap, and whilst my mum was in very early stages she definitely had significant impairment at the point of crisis. With hindsight when we saw her (she visited me regularly driving the 200 miles from hers to mine) she had been in hostess mode and there were odd things which pointed to issues but I hadn't realized the extent of her issues and how difficult she was finding navigating life.

I mentioned above her anxiety reducing with Aricept and another factor in this was being in a small flat in a sheltered extra care complex and not having the responsibility of life and managing a house and shopping and finances and the reassurance of twice daily carer visits (she only needed a medication prompt initially)

I know your mum is due to get 4 care visits, which I am guessing will be assessed by the council once she has settled back home, but whilst personal care is free in Scotland I think you will still need to arrange for 'domestic' calls yourself - eg cleaning, running the washing machine shopping house maintenance etc.

Whilst I and my mum are in England my MIL is in Scotland and I know that when she has needed personal care this has been arranged (post knee op) but she has a cleaner through social services which she pays for. Hopefully your brother will be able to deal with arranging this side of it if he is near.

Please don't feel you 'owe it to your mum' to try going back home if the next few weeks in hospital don't indicate this would work, many people on DTP have found their PWD are happier in a carehome than their own home once they are struggling with managing their home, my mum was exceedingly rarely lucid but did say she was much happier in her sheltered extra flat than her own house as she could manage there and I had done very well in finding it for her. ( in the area my MIL is in there would appear to be no provision for sheltered extra care style flats - so it depends on where your mum is).
 

canary

Registered User
Feb 25, 2014
12,621
South coast
I expect the drug the doctor is talking about is donepezil/aricept. One of the side effect is that it can slow the heart rate down, so that if someone already has heart problems there is the possibility that they can go into heart failure. My mum had heart problems when her Alzheimers diagnosed and to start with they didnt want to give her donepezil, but later on she got some different medication for her heart and she was able to take donepezil. She was then on it right up to the end without any problems and I do think that it helped.
 

Metalpetal

Registered User
May 10, 2020
113
Hi @jugglingmum thanks for taking the time to write such a lovely long reply to me. It was very interesting and helpful, thanks. It does sound as though they're doing the right thing closely monitoring mum while they're trying her on this medication. She's already on so many different pills that she used to joke she rattles! So I guess they need to be very careful about contraindications too. She's very very keen to go home - but I do wonder if it's 'home' exactly, or just 'not in hospital' that she wants to be?!! If they're at all uncertain then yes we might consider going straight to a care home or similar. There are some lovely ones almost walking distance from my brother, and I'm sure she'd love the idea of being so close to him. Although she has neighbours at home who she knows and is fairly friendly with, they're not 'friends' as such, and in any case if they wanted to keep in touch they could still go and see her. So we'll see what's best. She only has one really good friend still alive really, her best friend. Who is an absolute star and lives about 10 miles away anyway. So I'm sure she'd be happy to visit mum wherever she is and we could reassure mum about that.

I went to her bank today (well, my local branch of it here in Bristol) and kicked off the process to get access/control over her finances. It's been 5 weeks now since she went into hospital (it took about three weeks just to work through the necessary PoA processs to get to a stage where I could get to the Bank with all they needed!). So we're keen to have a look and check all's being paid as it should be etc. Also, her car lease is up next month so we want to make sure that gets sorted. I did talk to her about this in one of her fairly lucid moments and she seemed relieved that I was going to be taking over that side of her life -so perhaps you're right that she'd like more of an 'easy life' and could flourish like that a bit more. Her bloomin' cat is the main issue! I wonder if there are any care homes where you can bring your pet?!? (joke)

Thanks again, all very useful.

I hope your mum is doing okay? Heart issues are always a worry, let alone when it's on top of something else. Mum had a triple bypass and heart valve replacement around 9 years ago. And things have deteriorated again in the last year or so. But they've said she wouldn't survive another operation. She also has an aneurysm in her abdomen, that is inoperable, and is 2 years clear of breast cancer. She's a bit of a walking miracle to be honest! So with all this going on, I do want to do what's right by her - but also ensure she has a good quality of life for whatever time she has left.

Mp
 

Metalpetal

Registered User
May 10, 2020
113
I expect the drug the doctor is talking about is donepezil/aricept. One of the side effect is that it can slow the heart rate down, so that if someone already has heart problems there is the possibility that they can go into heart failure. My mum had heart problems when her Alzheimers diagnosed and to start with they didnt want to give her donepezil, but later on she got some different medication for her heart and she was able to take donepezil. She was then on it right up to the end without any problems and I do think that it helped.
Thanks - good to know... let's see how it goes!
 

Starting on a journey

Registered User
Jul 9, 2019
281
Don’t forget you have to let the DWP know that she has been in hospital for 4weeks as it affects attendance allowance As it is not payable after 28 days in hospital.
When I was made mums appointee for benefits they asked would mum know to report the change in her circumstances? At the time I thought , does mum even know what benefits are?
 

Metalpetal

Registered User
May 10, 2020
113
Don’t forget you have to let the DWP know that she has been in hospital for 4weeks as it affects attendance allowance As it is not payable after 28 days in hospital.
When I was made mums appointee for benefits they asked would mum know to report the change in her circumstances? At the time I thought , does mum even know what benefits are?
Ah we haven’t even gone down that route yet! She doesn’t currently get the AA - it’s on my list to sort, but good to know that I might as well wait until we know she’s home? (This is all very very sudden really so we only found out about AA last week I think!)
 

Amelie5a

Registered User
Nov 5, 2014
118
Scotland
HI Metalpetal - sounds like you're motoring through all the stuff that accompanies supporting someone with dementia. Well done!

My Dad has mixed dementia - Vascular and Alzheimers. He also has a slow heart rate, so from the outset,he wasn't offered Aricept for the reasons some have mentioned above. But he was prescribed Memantine, about a year in to diagnosis and I think that helped him for the time he took it. Unfortunately, he developed really swollen hands and it was attributed to the Memantine, so it was stopped.

You laughed about the cat.... but some homes will take pets. Ironically, I live next door to a care home (not the one Dad is in - he's 3 hours away as we took the decision to keep him in a familiar city where he has one very good friend). But... back to the cat. One of my 'highlights' of lockdown is watching the cats that prowl the garden - two of them live at the care home. One is the home cat, and the other belongs to a resident. So if the cat is really important to your Mum you might find that a home will take Mum+puss.