Husband off medication. Great improvement

[Diannie]

my husband diagnosed 6 years ago with Alzheimer’s has been in a care home for a year. His mobility was very poor and suffered falls. He used to go into deep sleeps and become very unresponsive but also at times agitated. We were also told he had Expressive and Receptive Dysphasia which meant he couldn’t understand what was being said and couldn’t answer appropriately. During the recent hot weather he went into hospital for a fluid boost as he had become dehydrated. A couple of days after he was discharged he refused his medication 2 days running. I thought I saw some improvement as for those 2 days he seemed more alert and not so sleepy. I asked the GP if we could leave all medication off for a little longer to see whether there would be any further improvement. He cautiously agreed but monitored him every couple of days. He has now been medication free for 3 weeks now and I and the care home are amazed. He is now walking unaided and feeding himself. He is able to hold a cup to drink with instead of a beaker without shaking and spilling his drink. He is still very alert and for the first time in over a year is saying small sentences and an answer what is being asked of him as he now appears to understand what is being said. He has also said “Thank you” to the Carers giving his personal care. Has anyone else encountered anything similar? One of his main medication was Memantine

 

[pevensey]

my husband diagnosed 6 years ago with Alzheimer’s has been in a care home for a year. His mobility was very poor and suffered falls. He used to go into deep sleeps and become very unresponsive but also at times agitated. We were also told he had Expressive and Receptive Dysphasia which meant he couldn’t understand what was being said and couldn’t answer appropriately. During the recent hot weather he went into hospital for a fluid boost as he had become dehydrated. A couple of days after he was discharged he refused his medication 2 days running. I thought I saw some improvement as for those 2 days he seemed more alert and not so sleepy. I asked the GP if we could leave all medication off for a little longer to see whether there would be any further improvement. He cautiously agreed but monitored him every couple of days. He has now been medication free for 3 weeks now and I and the care home are amazed. He is now walking unaided and feeding himself. He is able to hold a cup to drink with instead of a beaker without shaking and spilling his drink. He is still very alert and for the first time in over a year is saying small sentences and an answer what is being asked of him as he now appears to understand what is being said. He has also said “Thank you” to the Carers giving his personal care. Has anyone else encountered anything similar? One of his main medication was Memantine

Wow, that's brilliant for you Diannie,it must be wonderful to see him able to do things again. Do you mind if I ask you what medication he was on, sorry to ask and don't worrynifnyou rather not say. It's just that all the symptoms he had are exactly what my hubby has VERY BAD mobility, can't carry cup with drinks in them too shaky, doesn't seem to follow what I'm saying to him, so can't follow tv. An his speech very bad. If I thought stopping g his medication would improve his health I would def ask GP.

 

[Roseleigh]

Wow, that's brilliant for you Diannie,it must be wonderful to see him able to do things again. Do you mind if I ask you what medication he was on, sorry to ask and don't worrynifnyou rather not say. It's just that all the symptoms he had are exactly what my hubby has VERY BAD mobility, can't carry cup with drinks in them too shaky, doesn't seem to follow what I'm saying to him, so can't follow tv. An his speech very bad. If I thought stopping g his medication would improve his health I would def ask GP.

My husband is similar though his mobility not bad. He is on Donepizil and Memantine. Would like to try without!

 

[Roseleigh]

Actually my OH talks a lot, but much of it is nonsense and he has trouble following simple instructions.

 

[silkiest]

Common side effects of memantine are sleepiness and dizziness. The PWD cannot remember what symptoms they have so its up to the professionals to listen to relatives re side effects- some do, some don't. Several years ago a woman I knew was ignored by the professionals when she reported side effects as hubby with dementia always said "I'm fine" . Eventually after being ignored by the professionals she took matters into her own hand and flushed all his medication down the toilet and he quickly improved. I wouldn't recommend this as it apparently took hours to flush all the medication away (as many floated) and also you don't know what harm sudden withdrawal of drugs can do. But I would always advise you to be persistent if you think medication side effects are a problem. Its recently taken me 3 visits to GP with my mum over a couple of months and me keeping a diary but finally I think we're getting some improvement.

 

[PalSal]

My husband was on Aricept for many of the early years. We found it helpful. But then at a certain point in time, it was no longer helpful. And about 5 years ago he quit taking it. He was on it for about 10 years.
Then we had a couple of years where he was anxious and at times a little aggressive if confronted or challenged in any way.
We were given Dipperon to use as needed up to four times a day. I used this as needed. But for the last six months it is a rare day which requires me to administrator it. He is at the moment med just about med free.

I have found over my many many years as a carer he changes, as he brain deteriorates or whatever is happening with the Alzheimer's , his behavior and physical abilities have changed. I am not surprised at all that his meds have changed accordingly.
Currentl,y I have probably given him 5 or 6 Dipperon in the last six months. But if he would get super anxious or aggressive (which I doubt) I would not hesitate.

I am glad you see a difference in him, and long may it last. But as we all know things change and we must remain open to the advice of our doctors, and if you have given the responsibility to professional carers of his daily care, you must sometimes take their advice. But it is good to give your opinion and your input....

 

[Bunpoots]

My dad reacted badly to an increase in his dose of Donepezil and became hyper and slightly aggressive. Reducing his dose back down to 5mg cured the behaviour so I'm now very aware that meds can cause.

I wish people were monitored better when they were given these brain-altering drugs. I had no idea that they could cause a deterioration in the condition they were supposed to improve. Luckily I only put up with 6 months of dad's behaviour before desperation led me to this site and someone suggested that it might be the medicine that was causing problems. Dad, I think, would've been in a secure MH facility without that lead. As it was he had 3 years at home before 24/7 care was needed.

 

[Fishgirl]

my husband diagnosed 6 years ago with Alzheimer’s has been in a care home for a year. His mobility was very poor and suffered falls. He used to go into deep sleeps and become very unresponsive but also at times agitated. We were also told he had Expressive and Receptive Dysphasia which meant he couldn’t understand what was being said and couldn’t answer appropriately. During the recent hot weather he went into hospital for a fluid boost as he had become dehydrated. A couple of days after he was discharged he refused his medication 2 days running. I thought I saw some improvement as for those 2 days he seemed more alert and not so sleepy. I asked the GP if we could leave all medication off for a little longer to see whether there would be any further improvement. He cautiously agreed but monitored him every couple of days. He has now been medication free for 3 weeks now and I and the care home are amazed. He is now walking unaided and feeding himself. He is able to hold a cup to drink with instead of a beaker without shaking and spilling his drink. He is still very alert and for the first time in over a year is saying small sentences and an answer what is being asked of him as he now appears to understand what is being said. He has also said “Thank you” to the Carers giving his personal care. Has anyone else encountered anything similar? One of his main medication was Memantine

That’s better than winning the lottery! Because as useful as money is, it can’t bring our loved ones back to normal, and that would be worth millions to us! x

 

[Diannie]

Wow, that's brilliant for you Diannie,it must be wonderful to see him able to do things again. Do you mind if I ask you what medication he was on, sorry to ask and don't worrynifnyou rather not say. It's just that all the symptoms he had are exactly what my hubby has VERY BAD mobility, can't carry cup with drinks in them too shaky, doesn't seem to follow what I'm saying to him, so can't follow tv. An his speech very bad. If I thought stopping g his medication would improve his health I would def ask GP.

Hi Pevensey. Yes. He was on Memantine, Citalopram and Circadin. Previously he started on Donepezil with and without Memantine. Then Rivastigmene. All with bad side effects eg vomiting and shakiness. Then the Consultant prescribed Memantine by itself. I found they try to scare you by warning symptoms will deteriorate rapidly without Memantine. I have since been told by the care home they feel a lot of their residents are kept on these drugs unnecessarily. My big dilemma now is that he is back at the point he was before he went into the care home and with things as they are I really want him back home. I am feeling really down because as he is I can cope with him as I still go to see him everyday

 

[pevensey]

Hi Pevensey. Yes. He was on Memantine, Citalopram and Circadin. Previously he started on Donepezil with and without Memantine. Then Rivastigmene. All with bad side effects eg vomiting and shakiness. Then the Consultant prescribed Memantine by itself. I found they try to scare you by warning symptoms will deteriorate rapidly without Memantine. I have since been told by the care home they feel a lot of their residents are kept on these drugs unnecessarily. My big dilemma now is that he is back at the point he was before he went into the care home and with things as they are I really want him back home. I am feeling really down because as he is I can cope with him as I still go to see him everyday

Thankyou Diannie, hubby isn't on any of those, he takes about 7 different tablet a day but not them, That's a VERY big dilemma you have, obviously you would want him home if there was a chance BUT you really have to think hard about it, there's a lot of
IFS and BUTS, you are seeing him now how he was when before he started some of this medication so your thinking of then and seeing then BUT you had to make the soul destroying decision to put him in care home when it was so so bad you couldn't cope anymore. This could be a brief good spell and could go back to the bad times, Please God he doesn't BUT .........
Just give it a lot of thought, if hes settled there and your visits are happy ones then you deserve this time of your life for YOU .Give it at least 6 months.
Take care and Look after YOURSELF

 

[Diannie]

Thankyou Diannie, hubby isn't on any of those, he takes about 7 different tablet a day but not them, That's a VERY big dilemma you have, obviously you would want him home if there was a chance BUT you really have to think hard about it, there's a lot of
IFS and BUTS, you are seeing him now how he was when before he started some of this medication so your thinking of then and seeing then BUT you had to make the soul destroying decision to put him in care home when it was so so bad you couldn't cope anymore. This could be a brief good spell and could go back to the bad times, Please God he doesn't BUT .........
Just give it a lot of thought, if hes settled there and your visits are happy ones then you deserve this time of your life for YOU .Give it at least 6 months.
Take care and Look after YOURSELF

Thank you, Pevensey. You are absolutely right. I want to believe it will be long term but logically I know it may only be a brief respite. I will cherish every moment he is like this. I wish you and your husband well, too