Medication in Nursing Home - any advice please!!

Rosie Webros

Registered User
May 8, 2013
181
Hello everyone. I don't know if anyone remembers but I recently posted with a problem with my dad's medication. He has had Alzheimer's for six years and been on Aricept from the start and last year he was put on Memantine alongside his Aricept.

However, he has been in a lovely nursing home for about four months now, after my sister and myself took the agonising decision that we just couldn't manage any more. The home have had difficulty giving dad his pills for the last 5 or 6 weeks (dad kept spitting them out) and last week his new doctor took him off the tablets altogether! I was really annoyed, frustrated and scared at the time. I immediately got in touch with his consultant who had not seen dad for 8 months who agreed with the doctor and said that he did the right thing, and that the drugs probably would not be helping very much now anyway. Nobody has mentioned any alternatives e.g. the oral drops for Memantine, or the tablet for Aricept that melts on the tongue. When I mentioned these to the consultant, he just said that he thinks dad has done well to react so well to the drugs for the last six years and now is the time to take him off them.

I am so scared for my poor dad, I can see a difference already. He struggles now to pick up his finger food and put it up to his mouth. He still drinks a cup of tea but misses his mouth sometimes. Is this the start of the decline in dad? He talks gibberish and it was only a couple of months ago that he could still remember his army number from when he did his national service! He can't even understand us now.

Do I carry on fighting for dad's medication, or do I just accept that he is on his own now? The nursing home, although they are very good, they are on the side of the doctors and it would be very difficult (maybe impossible) to give dad any medication now. I am so worried, that I am not doing enough for dad by not fighting his corner anymore. Have I given up too quickly and easily? The nursing home say that perhaps I have not accepted dad's Alzheimer's yet, have any of us truly accepted this horrible disease?

So sorry to have rattled on but I am so worried, and I know all of you out there have your own problems and I am sorry to burden you with mine. But you are all so knowledgeable and I thought someone could offer an insight into whether I am doing the right thing or not.

Thank you, take care Rosie xx
 

Aquamanda

Registered User
Jan 8, 2012
225
Hello Rosie,
I can understand how worried you are. I don't know anything about the medical effects of withdrawing the tablets but I was wondering if things have changed in any case for you father very recently, even before the meds were stopped. It was just that you said that four months ago, you could not cope any more - so had things already started to deteriorate health wise for your Dad at that point? It sounds like the CH think it's as well to stop the meds as they just can't get them down him but if, as you say, there are alternative ways of giving the meds, maybe if you really feel this change is due to stopping the medication, you could write to the Cons and the Doc and copy the CH Manager and say exactly how and when your father has declined. If you really feel that is due to not having the meds then its definitely worth doing, if you can find an alternative type of tablet or drops etc, then that might work. I think it's worth a go, as you don't want to feel he has missed out on some quality of life that he could have had with medication. Best of luck; am sure if you clearly showed them the changes in your Dad - but only since he has stopped his medication, they would listen.
But if you think that perhaps those changes were already setting in over the last few months, then maybe the CH are right, that the disease is just progressing?
Do hope you get some resolution to this.
 

rajahh

Registered User
Aug 29, 2008
2,794
Hertfordshire
On balance I am on the side of the CH and the medical profession.

As the previous poster said your father had already reached a point where you were unable to care for him at home, then yes perhaps it is the time to " allow" your father to just let go.

It is not easy watching someone disintegrate in front of you, I do understand that. I still have my husband at home and see it every day. He has never been on Aricept as I felt it was not offered until it was too late.

It is hard for us to judge whether the " quality" of their lives is good or not, we only have our own quality of life to measure it by.

I do not have a lot of " fight" left in me but if you truly want this to be persued, then perhaps you should make a stand.

Jeannette
 

Rosie Webros

Registered User
May 8, 2013
181
Thank you so much for offering your advice. It is difficult to know exactly when the decline started to happen. When you see someone every day it is so gradual that you cannot actually place it. I think part of me wants to fight, but if I get the tablets back which may take weeks it may be too late then anyway, we may have lost too much of dad. The other part of me is so tired of fighting and wondering what the right thing is to do.

Perhaps I should just let the disease take it's course and be glad that dad has had the chance to be on the tablets for so long. Like you say, some people have not had the chance to be given medication.

Thank you very much for replying.. Take care Rosie xx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Rosie, this is the real dilemma of dementia, isn't it? I am asking the exact same questions about my dad, I keep questioning, is it delirium or decline?

Firstly, my understanding of these particular drugs is that they really have a limited efficacy in the latter stages of dementia. How can we ever know if stopping them is the cause of his decline? Perhaps if you can advocate for them to be resumed in a more acceptable form and watch for any changes. See if they will agree to a temporary resumption, and you can say you are happy for them to stop again if there is no improvement. I can see the case for stopping them, I am often greeted at the hospital with the news that Dad refused to open his mouth for his tablets. Sometimes I can use my little tricks to get him to take them, eventually, but it has been one reason why I'm there so long, a plea to stay until his evening meds so he will take them. We can't be there 24/7 to administer them, and one would hope the CH staff are quite familiar with this situation and adept at coping.

Dad has also begun talking on all day in half sentences that sound like business talk, and looking blankly when I hand him his teacup, confused as to what he should do with it. This has been just on an odd day, and in between he is as usual. This is what the dr calls Delirium and believes is the result of infection and constipation. I really question it given he has been treated for 10 days and was doing it again today. I wonder whether he is really unwell or it's a decline that will gradually increase. It's not knowing for sure and feeling we should intervene that makes our role so terribly hard at times.

Finally, I really don't want you to apologise for coming on here and sharing your situation. What makes us always think our problems are a bother to others and yet we happily read and reply to others? I am so glad we are all here as equals, equally frustrated and frantic, and equally loving and compassionate. It's just your turn to receive and I'm sure everyone here is happy to give to someone who has been a help in their time of need.

Stephanie, xxx
 

DAISY32

Registered User
Mar 1, 2011
10
Lancashire
Medication

Hello, Rosie, My dear husband was on both those meds. for the first 6 years, (but the manamine for 1year) but as his memory got worse and movements and mobility slowed down, he was taken off the drugs because the Doc. told me the drugs would not help him anymore.
I nursed my hubby at home until he died, 2years later, he still knew me in spite of not being able to speak. I could tell by his eyes. As long as your dad is comfortable and kept warm, clean and given drinks (round the clock, which I was able to do) He will be at peace. I have no regrets for keeping him at home for 8years in total.:)
 

Rosie Webros

Registered User
May 8, 2013
181
Thank you Stephanie and Daisy for your caring replies. It's strange you should say that about your dad Stephanie because that is what we noticed about dad when he has had a chest infection, that he struggles to drink, and talks strangely, and talks to people who aren't there. But once the infection had gone he went back to normal again. That is how dad is now, without having an infection. I do hope it is just the infection with your dad and he will return back to 'normal'.

That is how I am thinking now Daisy, that dad is being looked after in a caring environment, nice and warm, plenty to eat. But the guilt monster keeps on rearing it's ugly head and then I think I am not doing enough for dad. I am arguing constantly with myself (I am sure that's a form of madness, I wouldn't be surprised!)

Thank you so much again for your replies, they really do help me to come to terms with what's happening, and thanks for replying when you have so many problems of your own. Take care Rosie xx
 

Lowlander

Registered User
Jun 3, 2013
113
Scotland
I am astonished at the CH telling you that you have not accepted the diagnosis. Are they also mind readers? What do they mean by acceptance? that you should stop trying to do your best for your father?
When you see a deterioration as drastic as you outlined, after the tablets were removed, and when they could have been given in alternative form, I believe you must follow your instincts and say, Hang on a minute. You seem to have made things worse here. This is not acceptable and I want you to think again.
This to the consultant, of course, and in writing followed by a phone call if possible, to check he got the letter.
My husband has been off Aricept for a while now. He is now re- starting memantine to see if it will help with his aggression. He is also in a CH.
He refuses to be showered/ washed etc. as well. He has to use a large bathroom with no privacy for undressing and showering. Not even a curtain.
Tomorrow I intend to ask the manager if she would like to get undressed and shower, perhaps in front of the chef and the handyman or a couple of strangers, with not a shred of privacy.
It goes round and round in my head too. My husband is in some sort of torment and if I can make the even smallest change to help him I will.
Kick up a fuss. Do what you think is right. You'll know you've done your best.
 

Linda Mc

Registered User
Jul 3, 2005
1,881
Nr Mold
I feel the home should have told you before taking him off the medication.

My husband was on memantine right until the end and he too used to spit it out sometimes but we arranged to crush it and it was given with a yogurt. I did agree to it being given covertly and our consultant said it may or may not be doing any good but if he was taken off it there could be a sudden drop in his functioning, so I insisted he was kept on it.
 

Carabosse

Registered User
Jan 10, 2013
1,695
I would insist that they keep going with the medication, the fact your dad is in a completely new environment could be why he is spitting out his tablets and nothing to do with the Alzheimer's. I would agree with Linda Mc in the fact that you should have been consulted before your dad was taken off any medication, also the consultant wouldn't know if it was doing your dad any good or not as Alzheimer's is not fully understood yet so there is no way of knowing if the drugs (which themselves are in their infancy still) are doing any good or not, if it were me I would continue as you never know.
 

Rosie Webros

Registered User
May 8, 2013
181
Thank you so much for all your advice, I am so grateful.

I think that what I am most annoyed with is that the nursing home did not tell us until after the event. They say he has been refusing to take it for a few weeks now anyway and that if it was going to have any drastic effects then they would be obvious by now.

What a difficult situation. At the moment dad doesn't seem any different without the drugs and I know it is going to be another fight on my hands with the consultant to get the drugs reinstated. I know it sounds cowardly, but I really don't know if I am up to it now.

I am so sorry for what you all going through as well. I think the refusing to shower has a lot to do with dignity. My dad striuggles with this, he is of the 'old school' and finds it difficult to let strangers shower him (and young girls at that).

Thank you again for your replies, it is such a comfort to know people are supporting you and that we are all in this together.

Take care, Rosie xx
 

Carabosse

Registered User
Jan 10, 2013
1,695
I can understand your dad not wanting to be showered by female staff, I would be the same with male staff, does the CH not have any male carers that can come and shower or bathe your dad, if the CH is part of a large group they should have some, that may be something you could ask the manager.
I would also mention to the manager how disappointed you are with them that they never told you that your dad was having problems taking his tablets as there could have been something you could have done to help, as for getting the medication reinstated, just take a deep breath and talk to the consultant and tell him exactly what you would want to happen, he should listen to your wishes and give good reasons as to why he thinks the medication should be stopped and I don't mean 'I don't think they will do him any good', he would not be able to know that for certain.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I really think that the withdrawing of the medication was not just because your father refused to take it - though nobody could force him - but more because of it having no prospect of helping much, if at all, in the future. These drugs are expensive and if they are serving no purpose they will logically be stopped. It is accepted that once a stage in dementia is reached, they will not help. My husband was taken off Aricept a long time ago and was never even given Mementine. It is hard to accept that nothing can be done to help but sadly, that is often the case.

Lowlander, regarding the issue of privacy with bathing. In my husband's nursing home, most people require 2 carers - of either sex - for dressing, bathing or showering and washing. Also for hoisting and having their incontinent pads changed, private areas creamed and being fed. Where is the dignity in any of that?

However, people, especially men, who have been in hospital are familiar with members of the opposite sex treating them and here it is not so very different.
Also, we sometimes put our interpretations of how others must feel on to our relatatives but we are not them. Yes, I shudder at the thought of the above ever happening to me, just as would my husband have years ago. However, he is not as he was then and I am not him now.
I really think he just accepts things and doesn't question the indignity of his situation.

I realise that I am talking about a nursing home rather than a residential one but, even there, if an accident occurred when someone is in or out of the bath, there would be repercussions so I daresay that is one reason for the lack of privacy. Health and safety rears it's head everywhere!
 
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Lowlander

Registered User
Jun 3, 2013
113
Scotland
Lowlander, regarding the issue of privacy with bathing. In my husband's nursing home, most people require 2 carers - of either sex - for dressing, bathing or showering and washing. Also for hoisting and having their incontinent pads changed, private areas creamed and being fed. Where is the dignity in any of that?

However, people, especially men, who have been in hospital are familiar to members of the opposite sex treating them and here it is not so very different.
Also, we sometimes put our interpretations of how others must feel on to our relatatives but we are not them. Yes, I shudder at the thought of the above ever happening to me, just as would my husband have years ago. However, he is not as he was then and I am not him now.
I really think he just accepts things and doesn't question the indignity of his situation.

I realise that I am talking about a nursing home rather than a residential one but, even there, if an accident occurred when someone is in or out of the bath, there would be repercussions so I daresay that is one reason for the lack of privacy. Health and safety rears it's head everywhere!
Saffie, I quite see your point. Thanks for your clarity.
I think I was having a bit of a rant....
L
 

Rosie Webros

Registered User
May 8, 2013
181
Thank you all so much for your advice. Once more it is very much appreciated.

Dad has not been on any medication now for a few weeks, but I must say he seems ok. He is really pleased to see us. I don't know if he knows who my sister and myself are but he knows us as safe and friendly faces and that is enough for us. He tries to have a conversation with us although we cannot understand him. But I think he knows what he is trying to say, he seems happy as long as we agree and laugh along with him!

He is eating well, and we enjoy a cup of tea and a cake with him. He was singing when I saw him a couple of days ago. I had never heard the song before, but I think it showed that he was happy and content. Isn't that all we can hope for?

Anyway thank you again for all your replies. Nice to know once again that we are all in this together!

Take care, Rosie xx
 

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