Dad being put on Risperidone

[Wildflowerlady]

I found out this evening my dad is being put on Risperidone starting tomorrow. I'm not sure of the exact dose other than its half a pill to start with so I will take a spare pill cutter up in the afternoon. Sister surprisingly informed me via a fairly long email to which I am grateful.
I am particularly concerned that dad is probably only being placed on this now so as the LA can avoid finding dad a CH placement. Three weeks ago it looked almost certain that he would be going into a CH as his care company had said they could no longer meet his needs. A time factor of around 3 weeks was apparently mentioned to my sister by ASC, when they spoke to her after getting hold of me first. If I'm honest it was quite a relief as I had only just emailed the care company that morning very concerned at how my dad was behaving after seeing the notes carers had been making in his care book at his home.. Things got worse with dads behaviour only days later.
Dad has been being monitored for several months due to his verbal aggression towards his carers and refusal of some of his personnel care. The care company went back to ASC and told them they were unable to provide dad with the care he needs and its not just his behaviour but the fact they are finding it difficult to provide his personnel care because of his refusals which they feel is putting his general health at risk, dad is also declining most of his hot lunchtime meals.
My sister and I were both asked separately by phone how we felt and we were it seems at last in some agreement for once. We have both said this is what our dad now needs, even the guy from ASC said having spoken with the care company that it was felt that everyone had come to the same conclusion this included his view too from what he had been told.
Dad is 86 years old this month, lives alone is doubly incontinent and his Mixed Dementia has declined a lot his verbal aggression which has been going on for a long time has now escalated with more physical threatening behaviour as mentioned on my recent posts. Dad is also having many delusions exhibiting paranoia and has been a bit destructive with his home and broken his TV by either throwing something at it or punching it.
I had spoken with dads GP back in February of this year following a review of his dementia with a Dementia Nurse which I took him to and she advised me dads medication be looked at as I discreetly said he was being quite verbal with his carers. The GP that I then spoke with at the time told me that as the other drugs that were available had a sedative effect and dad lived on his own it wasn't really advisable for him to be given anything else suggesting dad could fall etc, he was at that time and still is on Donepezil.
Memantine was added a couple of months ago and now the intention seems to add the Risperidone and use with the Memantine so I'm assuming the Donepezil is actually being withdrawn.

I can't say I'm happy about this decision especially as I really do feel dad is in need of 24/7 care in fact I think its long overdue he couldn't even put his TV on today and declined my offer to go back over and switch on for him, he had been asleep earlier in the day when I took him some bits in so I didn't wake him and the TV was on then.
Dad can be quite unresponsive on visits or sometimes fine its quite mixed and I have to admit I visit dads home feeling quite uneasy sometimes not knowing if he is going to suddenly get aggressive.
I get distressed when I get home especially if the visit has not been good.
I honestly feel this decision has just been made in order to keep dad in his own home rather than give him the care he needs and is based on the fact that dad will have to be part funded by the LA as he has no property only his two pensions which would pay towards a CH placement he also has some savings but these are just under the threshold so assume they can't use them.
I'm feeling quite angry although not altogether surprised perhaps the tone in the guys voice when he said does dad have property and I said no I should have been wary as the no problem he replied with didn't sound too convincing when I think back now.
Its not that I really want my dad to go into a CH because I know it means such a big change for him and us and I'm especially worried it means we won't be able to see him much or maybe not at all with current situation but I don't think its about what we want anymore its about what my dad needs.
Dad needs to feel safe, he needs more company and he needs much more than carer visits and we can provide and I need to know he can get these things.
Everything in my head has been trying to adjust to what I thought was coming dads admittance to a CH. I was beginning to see it was for the best but now everything is back to where we were my mind thinking nothing other than thoughts of dad I'm back to feeling very stressed again.
Everything that was said to us appears to have been backtracked on the care company had even said they didn't want to send carers in anymore unless a family member was in attendance too so this has been done it was assumed this was until dad was given a CH placement.
I don't know yet if with this new medication the GP has prescribed under advisement from the Crisis Team that it will still be the case that a member of family attends all the carer visits too but in reality its too much at least for me and I don't expect my sister is keen either as she already goes every morning to do his breakfast. Dad has 4 x daily care visits and I'm not within walking distance of his home so travel over by car.

 

[Grannie G]

Hello @Wildflowerlady

It really does seem your dad is in need of residential care. Double incontinence and his aggressive behaviour, especially towards his carers might seem the care he is receiving is not meeting his needs.

I would continue to ask for residential care in your dad`s best interests. Even with the care package he has, perhaps if you identify how many hours your dad is alone it might influence the decision.

 

[canary]

I think you might have to tell the care company and SS that you cannot continue to go several times every day to be there when the carers are. It OK for a short time, but not indefinitely.

It is possible that he is being given risperidone as many (most?) care homes wouldnt accept residents with that level of aggression

 

[Wildflowerlady]

I think you might have to tell the care company and SS that you cannot continue to go several times every day to be there when the carers are. It OK for a short time, but not indefinitely.

It is possible that he is being given risperidone as many (most?) care homes wouldnt accept residents with that level of aggression

I must admit @canary it hadn't occurred to me that a CH might not be be available to take dad because of his aggression. I am concerned as to what effect the drug will have as in is dad going to be ' drugged ' to the point he's totally unresponsive. My sister said the crisis team noticed dad had a shake in his hand and queried if he had Parkinson's with lewy bodies dementia she said she had wondered that too but we've never had it suggested to us before.
I have to admit I find it rather ironic that she thinks that given she has always been so very dismissive of my partner's Parkinson's which was formerly diagnosed 13 years ago. I did say in the email I returned to her that there was a lot more to Parkinson's than a shaky hand. If dad were to have Parkinson's then this drug needs extra care in prescribing and if he doesn't it can produce symptoms that mimic Parkinson's and dad is already a bit shaky and unsteady he has stairs to navigate to go up to bed at night albeit with assistance from carer. It's all very worrying. I did thank my sister for her email. Personally I don't think dad has Parkinson's and that his unsteadiness is more likely down to the fact of his age and not eating much if anything beyond his breakfast time.

 

[Wildflowerlady]

If its a possibility that dad is not going to be placed in a CH and the reason turns out its because of his aggression where does this leave us as a family and more importantly my dad who spends many hours alone in his home. Are they hoping the Risperidone will calm him down enough for a CH to be considered at a later date?
I obviously need to contact the crisis team on Monday to ask them as I didn't know until late last night that dad is being put on this medication and for now the idea of a CH seems to have been dismissed.

 

[Wildflowerlady]

Hello @Wildflowerlady

It really does seem your dad is in need of residential care. Double incontinence and his aggressive behaviour, especially towards his carers might seem the care he is receiving is not meeting his needs.

I would continue to ask for residential care in your dad`s best interests. Even with the care package he has, perhaps if you identify how many hours your dad is alone it might influence the decision.

Hi @Grannie G
Dad is alone a lot he has been doubly incontinent for a long time he has a catheter but can soil himself 2-4 a day he wears pads but he is refusing some of the carers checking him. It hadn't occurred to me that it might be a case of the LA being unable to find a CH to accept dad because of his aggression I thought it would actually be the opposite and it would relieve the risk to the carers going into his home and the care company had approached ASC saying they couldn't provide dad with at home care any longer it was not fair and risky for the girls going in. As it stands they will continue dads care as nothing else is in place other than family ( sister and I ) being asked to attend the carers visits but I don't think this is a reasonable request for much longer. My Partner has Parkinson's and to a great extent I have without realizing it very much become his sole carer now over the period of the 13 years since his diagnoses.

 

[Grannie G]

Goodness @Wildflowerlady You have enough on your plate caring for your partner without having so much responsibility for your dad.

Do Social Services and the LA know your partner has Parkinson's? I suggest you make them more and more aware of this. It`s as much as any one person can cope with.

 

[LadyA]

Can't comment about the care home situation, as I'm not in the UK. However, I will say that my husband was on Risperidone for over four years. It can have severe side effects, but that's not a given. My husband was on a dose that his doctor described as the maximum they could give him. He never showed any side effects at all. However, for his paranoia, delusions, hallucinations and agitation, it was like a miracle. It was like someone had flipped a switch, and turned it all off. It gave him an extra two good years at home.

However, my husband wasn't quite as advanced in his dementia as it sounds your dad is when he was given Risperidone. And he would have been younger, around 79 or so when he started on it.

I too think you have more than enough to deal with. Unfortunately, as my mum says "it's the squeaky hinge gets the oil". You'll have to be very firm with Social Services, because if there's any outside chance that you'll carry on as is, you will be left to it.

 

[jaymor]

My husband also took risperidone for quite a few years. He was taking it from the age of 65 and had no side effects at all. It helped him immensely, he was calmer and his anxiety levels were not so high.

 

[Sarasa]

Sorry things are so rubbish @Wildflowerlady . Doctors suggested risperidone for my mum but her GP and I decided against it as she lived alone, had no carers coming in and couldn't take the medicine she did have reliably. I read about the side effects too, and my mum is someone who had been known to have adverse reactions to drugs. i hope it's monitored closely.
I know you've taken a step back before, if your sister is so insistent she knows best can you just leave her to get on with it? For a start I think getting the name tags was sensible as I'm sure your dad will end up in care pretty soon and then you'll need them, even if she seems to think you won't.

 

[Wildflowerlady]

Goodness @Wildflowerlady You have enough on your plate caring for your partner without having so much responsibility for your dad.

Do Social Services and the LA know your partner has Parkinson's? I suggest you make them more and more aware of this. It`s as much as any one person can cope with.

Yes they are aware of my partner's condition, my partner is prone to falls which got more frequent last year he has been told he also suffers from postural hypotension ( a sudden drop in blood pressure ) not only that he was admitted to Papworth in May 2018 late at night with a heart attack and had 3 stents fitted so yes I do indeed have a lot to deal with. (Even our darling dog has epilepsy which requires dosing twice a day). Problem is my sister and I don't get along and she seems more willing than I to accept that there appears to be a retraction of finding a CH for dad and putting him on this medication instead. If I push for a CH placement assuming somewhere will take him I've no doubt I'll forever be blamed for dad going into a home even though 3 weeks ago it appeared everyone including her were in agreement it was the best thing for dad. Thank you for your reply.