Hi, I'm new to this board. I've looked on here several times though, and have looked up lots of info in the factsheets and in various books at the library. My Mum has vascular dementia, was moved into a care home straight from hospital in March this year(OT did cognitive function tests - Mum scored 4 out of 30). Recently Mum was put on anti-depressants and anti-psychotics, but I am not happy with the side-effects, which include increasing unsteadiness on her feet, shaking, shuffling where Mum used to walk quite well, needing assistance to keep on her feet etc. No talking therapies were ever used to help Mum deal with her agitation. when I go to visit - once/twice a week as Mum does not live nearby I spend lots of time in conversation and take her to a large country park with a café. Mum can still talk about lots of things and I can usually make sense of what she is saying, or keep the conversation going. Anyway, how do I get the care home and consultant to decrease/stop the anti-psychotics? I've read the factsheet about them, and it seems that Mum should not be on them for more than 3 months, so I'd like them stopped. They aren't stopping her from getting upset anyway! Mum always had a fiery temper, so really she hasn't changed in that respect - she would do better to have her hormone levels checked! Also she has lost lots of weight - am worried about that too. Dad lives near the home and visits 3 times a week. He doesn't know how to cope with Mum, especially if she can't hold her cup right or tips her plate and food falls off - he tells her off then. But they are so in love, and she misses him loads. Also, lots of things seem to have gone missing- and of course Mum can't remember that she had them, but I took stuff in which is no longer in her room. What do I do about that? I label most things for her, but when she went straight from hospital , there wasn't time to get it all done. I realise I'm going on, but I love my Mum dearly and want to be the best support I can - after all, she did so much for me when I was growing up. So I want to make Mum's time in the care home as good as it can be. Any advice welcome. Thankyou.
Anti-psychotic drugs
- Thread starter LoopyLoo
- Start date
Dear LoopyLoo,
I am so glad you posted this thread and I hope you get some good advice.
My situation is different but in many ways similar. My uncle's drugs (over medication) and therapy (lack of it) are big issues for us.
I will read the responses you will hopefully receive with great interest.
Best wishes
Jancis
I am so glad you posted this thread and I hope you get some good advice.
My situation is different but in many ways similar. My uncle's drugs (over medication) and therapy (lack of it) are big issues for us.
I will read the responses you will hopefully receive with great interest.
Best wishes
Jancis
Hello,
I'm new to the board as well and only at the very start of my journey into this unknown that is Dementia.
However, I do know a lot about medications having had years of experience in learning how they work and what they do.
If you'd like to talk about it with me then you would be most welcome to send me a private message or if you're more comfortable we can discuss it here.
Before you decide about talking it over with me I do just want to say that I will not give any advice about dosage or whether they ought to be discontinued and I can't comment on your Mum's personal circumstances.
I am very happy to answer questions you have or explain anything that you want to know.
Here anytime,
Unicorn
I'm new to the board as well and only at the very start of my journey into this unknown that is Dementia.
However, I do know a lot about medications having had years of experience in learning how they work and what they do.
If you'd like to talk about it with me then you would be most welcome to send me a private message or if you're more comfortable we can discuss it here.
Before you decide about talking it over with me I do just want to say that I will not give any advice about dosage or whether they ought to be discontinued and I can't comment on your Mum's personal circumstances.
I am very happy to answer questions you have or explain anything that you want to know.
Here anytime,
Unicorn
Hiya Loopy,
I can't really comment on your mum tipping her plate up and dad getting cross. He'll have to learn not to!
Just to comment on things going missing. Well, it happens. I don't know why or how, or whether an issue should be made of it. While in the hospital mum lost her false teeth (bridges or something). We never found them. I always intended getting them replaced, but they cost a fortune and she got used to being without them, so I never did it. She lost at least 3 pairs of specs, never showed up, and in the end I didn't bother about them either, cos she stopped reading or watching telly. There is a limit to how many times you can spend £100 or more, only for things to go missing after a few weeks.
Clothes were a more major issue to me though. Mum was very small, and preferred skirts of knee length, where most ladies preferred longer skirts. She had very short legs, so when I bought her trousers or slacks, I spent ages (no needle-woman) shortening them, only to find them - gone!
Same with the skirts. Size 10, length 30 inches, carefully chopped off and sewn by me to be 24 inches - gone!
We have no idea where they went to. No other resident had them. They just went. So back to the Edinburgh Woollen Mill, which did styles that she liked, and another hundred quid spent, and more sewing by me, and where did they go? I don't know, but they went.
Yeh, all labelled with her name. Mystery.
Gawd, what an effort for nothing. And I was so proud to deck my mum out in decent clothes when she went into the care home, to make her feel special.
Love
Margaret
I can't really comment on your mum tipping her plate up and dad getting cross. He'll have to learn not to!
Just to comment on things going missing. Well, it happens. I don't know why or how, or whether an issue should be made of it. While in the hospital mum lost her false teeth (bridges or something). We never found them. I always intended getting them replaced, but they cost a fortune and she got used to being without them, so I never did it. She lost at least 3 pairs of specs, never showed up, and in the end I didn't bother about them either, cos she stopped reading or watching telly. There is a limit to how many times you can spend £100 or more, only for things to go missing after a few weeks.
Clothes were a more major issue to me though. Mum was very small, and preferred skirts of knee length, where most ladies preferred longer skirts. She had very short legs, so when I bought her trousers or slacks, I spent ages (no needle-woman) shortening them, only to find them - gone!
Same with the skirts. Size 10, length 30 inches, carefully chopped off and sewn by me to be 24 inches - gone!
We have no idea where they went to. No other resident had them. They just went. So back to the Edinburgh Woollen Mill, which did styles that she liked, and another hundred quid spent, and more sewing by me, and where did they go? I don't know, but they went.
Yeh, all labelled with her name. Mystery.
Gawd, what an effort for nothing. And I was so proud to deck my mum out in decent clothes when she went into the care home, to make her feel special.
Love
Margaret
Hi Lou,
My Dad too had vascular dementia (score 7/30 his last assessment but there were many good bits of brain activity too). He had become increasingly agitated and aggressive with staff, the less able he became to look after himself. he hated the intrudsion into his personal care yet he wasn't able to look after himself, wouldn't wash, forgot how to use the toilet had difficulty dresssing himself, but he was good on his feet and walked a lot, and ate well. he was prescribed seroquel anti psychotic to deal with the aggression but he he was still aggressive!!!, more dopey but still had aggression towards staff trying to help him. He gradually got more unsteady on his feet. and had 3 falls. It is a dilemma. Something else is needed to sort the agitation and aggression but often there is nothing, no alternative - the safety of staff is also a main concern. Dad hurt a number of staff through hitting, head butting, pinching. It broke my heart. The head nurse would stop the anti psychotics if dads behaviour was good and it was amazing how my "real" dad would emerge for a while. The gentle smiling man who couldn't do enough for people. I did find it hard though to correlate his good behaviour with the drugs - it was mixed. Somedays he could be great on the drugs, sometmes not. sometimes he was great off the drugs, sometimes not. I CAN say his most lucid and real moments were mostly when he was off the antipsychotics. His most dopy moments were always when he was on them. I was always glad for those moments of reprieve.
I would say to talk to the head nurse to see if it is possible to omit the anti psychotics if your mums behaviour is good. Also if the side effects are not good, try to get a review to see if there are alternatives. Sometimes the side effects go after a while, sometimes they dont. Keep a record if you can of behaviour/drug taking/ side effects. It does need constant surveillence and I would certainly ask for them to be stopped totally for a while after a number of months to see how your mum is now. Dad's behaviour did get a bit more accepting as time went on, he became weaker and couldn't put up as much of a fight !!
. (One day he told one of the carers changing him " your sacked !) Some of the decline I think was the drugs, some probably his age and the dementia. it is hard to unravel the reasons behind the behaviour.
Things will go missing, and your mum will probably "acquire" things too! I used to do a quick reckky to look for his things and replace those that weren't his!
I have rambled on here now. My dear Dad passed away a month ago at 93. The past few years have been very hard but like you I had to do it as he was such a wonderful father and friend for so long. Be strong and keep getting information to discuss with the nurses and doctors. Cherish the good moments and write them down to remind you that there are still some good times in between the not so good.
Big hug,
Helen
My Dad too had vascular dementia (score 7/30 his last assessment but there were many good bits of brain activity too). He had become increasingly agitated and aggressive with staff, the less able he became to look after himself. he hated the intrudsion into his personal care yet he wasn't able to look after himself, wouldn't wash, forgot how to use the toilet had difficulty dresssing himself, but he was good on his feet and walked a lot, and ate well. he was prescribed seroquel anti psychotic to deal with the aggression but he he was still aggressive!!!, more dopey but still had aggression towards staff trying to help him. He gradually got more unsteady on his feet. and had 3 falls. It is a dilemma. Something else is needed to sort the agitation and aggression but often there is nothing, no alternative - the safety of staff is also a main concern. Dad hurt a number of staff through hitting, head butting, pinching. It broke my heart. The head nurse would stop the anti psychotics if dads behaviour was good and it was amazing how my "real" dad would emerge for a while. The gentle smiling man who couldn't do enough for people. I did find it hard though to correlate his good behaviour with the drugs - it was mixed. Somedays he could be great on the drugs, sometmes not. sometimes he was great off the drugs, sometimes not. I CAN say his most lucid and real moments were mostly when he was off the antipsychotics. His most dopy moments were always when he was on them. I was always glad for those moments of reprieve.
I would say to talk to the head nurse to see if it is possible to omit the anti psychotics if your mums behaviour is good. Also if the side effects are not good, try to get a review to see if there are alternatives. Sometimes the side effects go after a while, sometimes they dont. Keep a record if you can of behaviour/drug taking/ side effects. It does need constant surveillence and I would certainly ask for them to be stopped totally for a while after a number of months to see how your mum is now. Dad's behaviour did get a bit more accepting as time went on, he became weaker and couldn't put up as much of a fight !!
. (One day he told one of the carers changing him " your sacked !) Some of the decline I think was the drugs, some probably his age and the dementia. it is hard to unravel the reasons behind the behaviour. Things will go missing, and your mum will probably "acquire" things too! I used to do a quick reckky to look for his things and replace those that weren't his!
I have rambled on here now. My dear Dad passed away a month ago at 93. The past few years have been very hard but like you I had to do it as he was such a wonderful father and friend for so long. Be strong and keep getting information to discuss with the nurses and doctors. Cherish the good moments and write them down to remind you that there are still some good times in between the not so good.
Big hug,
Helen
Hi Loopyloo,
I think you should discuss the medications with the doctors. Your mother sounds like she could be overmedicated, as mine was at one point. If I were you, I would have a consultation with the doctors and request that the meds be reduced. It doesn't need to be a lot - say by 25%. Then wait for 6 - 8 weeks to see how your mother is reacting. If she is back to her old self, more or less, then she can stay at that level. If not, ask for another reduction.
This is what I did with my mother. I continue to monitor her drugs as she was on a great many at one point, because she was physically violent and attacked many people.
Medications do have a place but we need to keep a close eye on them.
I think you should discuss the medications with the doctors. Your mother sounds like she could be overmedicated, as mine was at one point. If I were you, I would have a consultation with the doctors and request that the meds be reduced. It doesn't need to be a lot - say by 25%. Then wait for 6 - 8 weeks to see how your mother is reacting. If she is back to her old self, more or less, then she can stay at that level. If not, ask for another reduction.
This is what I did with my mother. I continue to monitor her drugs as she was on a great many at one point, because she was physically violent and attacked many people.
Medications do have a place but we need to keep a close eye on them.
Hello Loopyloo
If you want to try to get them to stop the anti-psychotics drugs your mum is on your going to have to put a good case together as to why they should stop them.
Write down everything, what your mum was like before she was put on them and everything your mum could do before she was on them and i mean everything.
Then write down everything your mum now cannot do since she was put on them.
Don't let the consultant fob you off by saying your mums drop in cognitive skills and physical capabilities are down to her vascular dementia as too many doctors just put it down too because of their lack of knowledge as to how the person was before. Total lack of back ground information or information given by people who dont know your mum. To many doctors just hand out these drugs as a quick fix sadly.
Make it clear you will hold the consultant responsible for any adverse effects from prolonged use of these drugs as you know these drugs should not be used for long periods of time and if you can your family must stick together when confronting the consultant,strength in numbers.
I had to battle like mad to get my mums consultant to stop my mums antipsychotic drugs as i had no one else to back me up and when i did get them stopped my mum did improve as i knew she would.
If you want to try to get them to stop the anti-psychotics drugs your mum is on your going to have to put a good case together as to why they should stop them.
Write down everything, what your mum was like before she was put on them and everything your mum could do before she was on them and i mean everything.
Then write down everything your mum now cannot do since she was put on them.
Don't let the consultant fob you off by saying your mums drop in cognitive skills and physical capabilities are down to her vascular dementia as too many doctors just put it down too because of their lack of knowledge as to how the person was before. Total lack of back ground information or information given by people who dont know your mum. To many doctors just hand out these drugs as a quick fix sadly.
Make it clear you will hold the consultant responsible for any adverse effects from prolonged use of these drugs as you know these drugs should not be used for long periods of time and if you can your family must stick together when confronting the consultant,strength in numbers.
I had to battle like mad to get my mums consultant to stop my mums antipsychotic drugs as i had no one else to back me up and when i did get them stopped my mum did improve as i knew she would.
I can tell you my own experience with Mum and drugs - don't know if it will help at all - which is that her previous GP prescribed lorezepam for anxiety and agitation and it really knocked her for six - she fell when she took it, and felt 'drunk', and hated it.
The new GP has prescribed citalopram. We have had to wait a couple of weeks for it to kick in but it has had a really beneficial effect on her anxiety, and specially agitation. She has not head banged (touchwood) since she started on it.
Good luck x
The new GP has prescribed citalopram. We have had to wait a couple of weeks for it to kick in but it has had a really beneficial effect on her anxiety, and specially agitation. She has not head banged (touchwood) since she started on it.
Good luck x
Thanks for all the replies. Mum is also on Citalopram, which is a concern as I didn't think anyone should be on anti-depressants andanti-psychotics at the same time! Thanks also for the advice about keeping a note of how Mum behaves.
It's so encouraging to read others' stories. I was meant to be visiting Mum today, then Dad later, but couldn't cope today, am just so exhausted from trying to sort out all the little problems that arise. Also the M25 was really bad, and it was pouring with rain, and I suffer with CFS and a few autoimmune conditions, so energy is not great. Will try to get over to Essex on Thursday.
I will try to sort out these anti-psychotics. I've also downloaded Factsheet 408 and highlighted the bits that I want the doctor from the Dementia clinic to read. I've left 2 messages on the answerphone in the last five days but no response yet.
It's so encouraging to read others' stories. I was meant to be visiting Mum today, then Dad later, but couldn't cope today, am just so exhausted from trying to sort out all the little problems that arise. Also the M25 was really bad, and it was pouring with rain, and I suffer with CFS and a few autoimmune conditions, so energy is not great. Will try to get over to Essex on Thursday.
I will try to sort out these anti-psychotics. I've also downloaded Factsheet 408 and highlighted the bits that I want the doctor from the Dementia clinic to read. I've left 2 messages on the answerphone in the last five days but no response yet.
Hello, Loopyloo,
I've been reading this thread with interest, too. My sisters and I were not happy with our Dad's deterioration when he was on Haloperidol then Quetiapine. He is no longer on medication.
Glad to hear the dose will be reduced.
sleepless.
I've been reading this thread with interest, too. My sisters and I were not happy with our Dad's deterioration when he was on Haloperidol then Quetiapine. He is no longer on medication.
Glad to hear the dose will be reduced.
sleepless.
Hi there I share your concerns on the use of Anti psychotics particularly as they are not recommended if you have dementia, are over 65 and particularly vascular dementia.
My mother has been on them for 4 years and we tried to reduce the dose but she just started going bonkers so we had to increase the dose again.
But everyones dementia is different so speak to the Dr and see if you can have a trial stepped reduction to see how she gets on.
Good luck
My mother has been on them for 4 years and we tried to reduce the dose but she just started going bonkers so we had to increase the dose again.
But everyones dementia is different so speak to the Dr and see if you can have a trial stepped reduction to see how she gets on.
Good luck
Hi,
I've been ill and on holiday so haven't seen the site for a while. The topic of anti-psychotic drugs is of particular interest to me.
In my Dad's case, I can't help to continue to ask the question
"who are the drugs for?". This sounds a bit cynical but I can't help it. For the years my Dad has been in his care home I have watched the poorly trained, mostly unskilled staff trying to "manage" his behaviour.
My observations are that there is a direct correlation between the lack of "active listening skills" and Dad's overt aggression. Staff are simply failing to understand Dad needs, some are even complacent and don't even try. Staff failure to go slowly and explain when they wish to intervene in his personal care simply leads to Dad feeling violated which spills over into verbal and sometimes physical aggression. He is scape-goated.., labelled as aggressive instead of individuals thinking about their own actions and taking responsibility. It is heart-breaking.
Polly H
I've been ill and on holiday so haven't seen the site for a while. The topic of anti-psychotic drugs is of particular interest to me.
In my Dad's case, I can't help to continue to ask the question
"who are the drugs for?". This sounds a bit cynical but I can't help it. For the years my Dad has been in his care home I have watched the poorly trained, mostly unskilled staff trying to "manage" his behaviour.
My observations are that there is a direct correlation between the lack of "active listening skills" and Dad's overt aggression. Staff are simply failing to understand Dad needs, some are even complacent and don't even try. Staff failure to go slowly and explain when they wish to intervene in his personal care simply leads to Dad feeling violated which spills over into verbal and sometimes physical aggression. He is scape-goated.., labelled as aggressive instead of individuals thinking about their own actions and taking responsibility. It is heart-breaking.
Polly H
PollyH,
Your thread echoes my doubts about some (not all) use of drugs in care homes. I had hoped that things were getting better.
I'm so sorry that your dad isn't treated with more understanding.
Have you ever approached the manager about this? Has there been any improvement at all in staff training over the time he's been there?
The care workers with the skills (whether learned or intuitive) are angels, making a difference to sufferers and carers.
sleepless.
Your thread echoes my doubts about some (not all) use of drugs in care homes. I had hoped that things were getting better.
I'm so sorry that your dad isn't treated with more understanding.
Have you ever approached the manager about this? Has there been any improvement at all in staff training over the time he's been there?
The care workers with the skills (whether learned or intuitive) are angels, making a difference to sufferers and carers.
sleepless.
I have just finished a four year battle over my Mum's drugs. She has been on antidepressants, sleeping pills and valium for the last 40 years. During that time she has changed drugs on numerous occasions as they battled to give her something to make her better. A long time ago I accepted that was never going to happen. She has had quite a few sessions of ECT and there was a glimmer of hope when she had a period of Cognitive Behaviour Therapy but that was withdrawn due to lack of funding. The last lot of pills she was on before the Dementia started to become apparent gave her IBS (irritable bowel syndrome) - it was actually listed as a side affect but it took them 10 years to realise that the drugs had been causing it. Got her off those 3 years ago and the IBS went overnight. She is still on drugs but they are tailored to her anxiety and OCD so much better than previous. Recently went onto Aricept though - ok on 5mg but 10mg tipped her over the edge again so back to 5mg. Its a continual battle and worry you just have to accept it. I've dealt with it all my life now (since I was 10) so its kind of second nature. Never assume that they know best - looks as though you realise that already - read all you can about the drug and watch for any side effects - my Mum was given Methedrine - which is actually speed - to cure postnatal depression after I was born, took it for 10 years - if they can prescribe people that they can prescribe them anything! Not surprising she's got AZ now!
Hi again,
In answer to your question Sleepless ....."Has there been any improvement at all in staff training over the time he's been there?". The period is 4 years.... and yes, there has been and members of the family have learnt as we have gone along too. (If only I had known 4 yrs ago what I know now!)
It's just the inconsistency that you observe that is so disheartening. Some days things look brighter and our expressed concerns seem to be being addressed and then....bang, here we go again! Poor old Dad is in the middle of all this and deteriorating.
We have made progress.... he is now not often given Quetiapine but it was quite a battle involving direct contact with his GP and the pyschiatrist. I do appreciate the job of carers is a difficult one and I don't want to be too critical. It is the system that needs changing but that will take time and money.
I'm sorry I'm not very positive Loopyloo. Do keep going.... asking the questions and continue advocating for your loved one. It is vital.
Polly H
In answer to your question Sleepless ....."Has there been any improvement at all in staff training over the time he's been there?". The period is 4 years.... and yes, there has been and members of the family have learnt as we have gone along too. (If only I had known 4 yrs ago what I know now!)
It's just the inconsistency that you observe that is so disheartening. Some days things look brighter and our expressed concerns seem to be being addressed and then....bang, here we go again! Poor old Dad is in the middle of all this and deteriorating.
We have made progress.... he is now not often given Quetiapine but it was quite a battle involving direct contact with his GP and the pyschiatrist. I do appreciate the job of carers is a difficult one and I don't want to be too critical. It is the system that needs changing but that will take time and money.
I'm sorry I'm not very positive Loopyloo. Do keep going.... asking the questions and continue advocating for your loved one. It is vital.
Polly H
My husband was taking Amisulpride [anti psychotis] and Mirtazapine [anti depressant] for over 2 years but the doses were monitored very carefully and although he was at times sleepy he still had quite active periods of sundowning when he went walkabout.
What I`m trying to say is there was compromise , which enabled me to keep him at home just for 18 months more.
Now, his antidepressants have been withdrawn and his antipsychotics reduced to just 25 mg at night time.
This has worked for us , but the consultant has been scrupulous in his care, as has the CPN who visited regularly in order to report back.
What I`m trying to say is there was compromise , which enabled me to keep him at home just for 18 months more.
Now, his antidepressants have been withdrawn and his antipsychotics reduced to just 25 mg at night time.
This has worked for us , but the consultant has been scrupulous in his care, as has the CPN who visited regularly in order to report back.
