Successfully transfer dementia patient back home?

[Pusskins]

I have read other threads in this forum about this and some have successfully managed to do this. However, I'm starting another thread along the same lines. I so badly want MH back in my life. He has improved in care mainly because he is on risperidone and more responsive and obliging. My doctor told me yesterday that there's no reason he couldn't have risperidone at home. Why wasn't I told this before? MH misses me and I can't live without him. I'm in a completely different frame of mind than I was when he went into care 6 months ago. My health problems have been sorted. Now I have new ones, a constant state of anxiety because we have been split apart.

Has anybody successfully returned their LO back home? Perhaps moving to a new care home would be traumatising, but if he was here with me, it might not be so bad,

 

[Sarasa]

Hi @Pusskins , I have no direct experience of this, so I hope someone that has will be along in a minute with their input
However from reading of other people's experiences on here from people looking after loved ones with advanced dementia at home I would say think long and hard about it. It's great that your husband has improved since being in the care home, and the risperidone may have contributed to that. His dementia may have moved on a little too, meaning that he is less anxious, certainly this seems to have happened to my mum who has been in care for nearly two years now. However a lot of the improvement could well be to being in a place with routines and a whole team of people to care for him. If he came home it would just be you and maybe carers coming in at set times. You are also only seeing a snapshot of his behaviour. There could still be times when things are challenging.
If he moved back home and you found you made a mistake you may be worse off than before. I think it took a while for you to find the home he is in, and though being so far away isn't ideal, if he did have to move back into care the new home might be even more difficult to get to or not as good.
Finally there is your own health. I know you've had two broken wrists in the last year or so. What would happen if you had another accident or became unwell?
I'm sorry you miss your husband so much, but things could never be the way they were before dementia struck. He is still in your life just in a very different way.

 

[northumbrian_k]

Hi ,@Pusskins What follows is my experience and may not be directly relevant to your circumstances. I hope though that what I say may help you at this awful time.

My wife has been in her care home for nearly 2 years, during which time she has become calmer and more settled than I could have hoped for. She is not on any different medication than when she lived at home. I put her current contented state down to the routines, personal interactions and good care that she has become used to. I would not risk undoing all of that by bringing her back home. I could not manage before and would not now. The wife I miss so much was lost to Dementia a long time ago. Her needs for 24 hour care come first and trump my desire to have her back with me.

 

[canary]

I do agree with @Sarasa that the environment plays a huge part in the behaviour.
Before mum moved to her care home she had become totally paranoid. She thought the neighbours were doing all sorts of terrible things that they wernt and she wrote awful letters to them and posted them through their letterboxes and got into dreadful arguments with them. She thought that there was a school above her (she lived in a bungalow) and the children made a racket on the stairs and came in and moved all her furniture around. She thought that I was stealing from her and abusing her and half the time wouldnt even let me into her home.

Eventually, there was no option but a care home. Initially, she was abusive to the staff and hit one of them with her walking stick so I was convinced that she would be asked to move, but the carers took it all in their stride. It took her about 6 weeks to settle, but after that she thrived. Her old personality (though not her memory) returned and she became a whole lot of fun again. And all of this was achieved simply with the environment - she had never been prescribed risperidone, or lorazepam, or an antidepressant/antianxiety medication of any kind.

At this point it would have been very easy to think, "oh she is so much better, I could deal with this at home", but I knew that if I took her out of that environment everything would unravel and she would, within a very short time, be back to square one.

I dont remember ever having read on here about someone who has successfully taken someone out of a care home, although I dare say there has been the occasional one that Ive missed. People generally post on here that they are going to, or that they have, but do not follow up, so we do not see the outcome. I only remember two threads telling us what happened, one by Ann Mac and the other one by Hillybilly. In both these cases the person with dementia was returned to a care home.

 

[Moggymad]

....... I wish I could have kept MH here with me until the bitter end also, but he is doing so much better in the home. I could never have achieved what they have. His swollen legs and cellulitis are gone, they're managing to shower him daily and he is eating.......

Hi @Pusskins the paragraph above was one you posted on another thread. Please take account of the comments above when deciding. I have found in my mums case & others I've read that a lot of PWD benefit from having other people around like carers even if before they were against it. It is in no way a reflection of the care given by ourselves.
We all feel for you in your sadness. I hope you are able to move closer to where he is which was something you thought of doing X

 

[DennyD]

The thought of my husband coming home has also been playing on my mind. He's still in 'emergency respite' and the decision was made for him to move to permanent residential care. In the meantime, like others, I've been struggling enormously with the separation. I've not had a good experience with social services and seeing him changing to a sad and unhappy person, the thought of taking him home has crossed my mind several times over the last few weeks. However, I know I cannot provide the care he needs , our home also is not a good environment for him. Then yesterday I had a call from the ward with an update following the rounds by the medical team. They told me he's been displaying aggressive behaviour again and they've put him back on risperidone, which I hate! I do not think it is good for him, it didn't work while he was home. However, this change was a signal to me, after what appeared to be a fairly stable period made me realise that coming home is no longer an option. It's hard and I feel bad not being able to give him comfort and support, I struggle with having to accept it but know it is what I need to do. I hope you can make a decision.

 

[MartinWL]

Remember that dementia only gets worse over time even if short term improvement can be achieved. Could you talk it over with a friend or family member who knows you both and who would be willing to be candid about what was realistic?

 

[update2020]

My husband has been in care for nearly two years. Once he was put on risperidone his health deteriorated, sometimes sharply, sometimes less so. At times it seems to dim his agitation and at other times not. Mainly, over months, he has become increasingly unpredictable. I feel guilty, I would like to turn the clock back, I miss him. But the very sudden changes in his behaviour and above all the unpredictability of these changes (which just seems to increase from week to week) from extreme agitation to drowsiness and back again, makes me realise that I just couldn't cope. It takes an army of ever-changing shifts of trained people to cope. Everybody is different but I now know that I have passed the point where him living at home would be remotely possible, however bad I feel about that.

 

[Pusskins]

....... I wish I could have kept MH here with me until the bitter end also, but he is doing so much better in the home. I could never have achieved what they have. His swollen legs and cellulitis are gone, they're managing to shower him daily and he is eating.......

Hi @Pusskins the paragraph above was one you posted on another thread. Please take account of the comments above when deciding. I have found in my mums case & others I've read that a lot of PWD benefit from having other people around like carers even if before they were against it. It is in no way a reflection of the care given by ourselves.
We all feel for you in your sadness. I hope you are able to move closer to where he is which was something you thought of doing X

@Moggymad With hindsight, the improvement, I believe has come about due to him being prescribed risperidone. He has become more co-operative and compliant. He is a loner and doesn't mix with the others or join in activities. That was one of the main reasons I placed him into care, for the stimulation, but it appears to have been a waste of time in that respect. I am contemplating a few trial runs first, such as having him home for a weekend occasionally to see how it goes. I know that if he came home permanently, eventually he would have to go back and I am adult enough to realise that it may not work anyway, but I feel I must try. I was never told that he could have had risperidone at home before I made the decision to put him into care. The GP told me it was prescribed so dementia patients could stay at home for as long as possible. Had I known, I probably wouldn't be in this ghastly situation right now. At the moment, he is just far too far away; it's a strain to visit as much as I'd like. In fact I can't visit as much as I'd like. I'm up to my ears in stress; my heart is racing non-stop. GP says it's not bad enough to worry about. I will be ringing the manager of MH's rest home shortly to discuss it with her. My only other choice is to move to the town where he is, but I've taken our house off the market as that on top of all the other strain is going to do me in, so in the meantime, I'm postponing that option.

 

[Sarasa]

How did your conversation with the manager of the care home go @Pusskins?
I can understand how much you miss your husband specially as it isn't easy to visit him, but I don't think having him home would help. You would soon be exhausted and I don't think he would be any happier, and without a team caring for him his physical health might go backwards.
I think you need to 'look after you' as my dear mother-in-law always said. Maybe a visit to your GP to explain how you feel, or a chat to a good friend about it all will help.

 

[DennyD]

I'm up to my ears in stress; my heart is racing non-stop

This is a major issue. The stress (burnout) takes hold and continues. It is good that you are postponing a house move and removing (or at least putting on hold) one thing for the time being. In can't advise you but focussing on one plan of action at a time and explore options for that plan, if it does not look good then try to tackle another route. If anything your post has helped me to recognise that we need time, allow ourselves time and be given the time to be able to consider options.

 

[Pusskins]

How did your conversation with the manager of the care home go @Pusskins?
I can understand how much you miss your husband specially as it isn't easy to visit him, but I don't think having him home would help. You would soon be exhausted and I don't think he would be any happier, and without a team caring for him his physical health might go backwards.
I think you need to 'look after you' as my dear mother-in-law always said. Maybe a visit to your GP to explain how you feel, or a chat to a good friend about it all will help.

@Sarasa The conversation with the manager was helpful. She asked me if the plan was to bring MH home. I explained that it wasn't actually a plan, more like a hope. However, since I decided I wanted him home, I've realised it wouldn't work. For a start I have picked up a virus from somewhere and if MH was home with me, I'd not only be incapable of caring for him, but could pass it onto him which would be disastrous. In the meantime I'm taking my time to clean this place out, organise an auctioneer to sell off stuff, get the place tidied up, then put it back on the market. That way I can move to the town he is in, see him daily if I want, maybe volunteer in the home a little and take him home for the odd weekend. Driving to see him twice a week is doing me in as it's a 90 minute drive there and back.

 

[Banjomansmate]

I must admit, I think you have made the right decision. Hopefully a move somewhere closer will prove as successful as you hope.

 

[Sarasa]

I think you've made the right decision @Pusskins. Even if you don't eventually move doing things to sort out your house will give you a project I always feel better when I feel I am doing something rather than just worrying about things.

 

[Grannie G]

I`m so glad you realised it time @Pusskins

It`s so easy to see what we think is an improvement and once we are rested from the stress of 24/7 caring start to think it worth trying again.

People with dementia go into residential care usually because a sole 24/7 carer is unable to meet their needs. Once their needs are being met and their condition appears to improve, those of us who have difficulty accepting the separation are tempted to try again.

I have been a member of Talking Point since 2006 [ 15 years ] and have no recollection of a person with dementia successfully returning home from residential care in spite of many carers dearly wishing it could be.

 

[DennyD]

People with dementia go into residential care usually because a sole 24/7 carer is unable to meet their needs. Once their needs are being met and their condition appears to improve, those of us who have difficulty accepting the separation are tempted to try again.

I have been a member of Talking Point since 2006 [ 15 years ] and have no recollection of a person with dementia successfully returning home from residential care in spite of many carers dearly wishing it could be.

This wise reflection is certainly something I needed to hear. Thank you Grannie G

 

[Old Flopsy]

I too am tempted by the thought of bringing OH home. I think that it's my duty- this is the house he worked so hard to buy- yet he has been taken somewhere else to live, apart from me. But I know we would end up not coping. So every day I have this battle in my mind of wishing I could but knowing I can't.

OH in his better times would have recognised the issues and would have realised it's too hard to do.

His own father was in a care home with dementia and he knew then that it was the safest option for his mum and sister.

Now all he can say is 'when are you taking me home', which pulls at the heart strings. I just hope that he will come to appreciate his caring surroundings in time.

 

[Pusskins]

I too am tempted by the thought of bringing OH home. I think that it's my duty- this is the house he worked so hard to buy- yet he has been taken somewhere else to live, apart from me. But I know we would end up not coping. So every day I have this battle in my mind of wishing I could but knowing I can't.

OH in his better times would have recognised the issues and would have realised it's too hard to do.

His own father was in a care home with dementia and he knew then that it was the safest option for his mum and sister.

Now all he can say is 'when are you taking me home', which pulls at the heart strings. I just hope that he will come to appreciate his caring surroundings in time.

(((((Hugs))))) @Old Flopsy

 

[Old Flopsy]

@Pusskins Thanks it's ages since I had a hug- just what I needed!