My husband has Dementia with Lewy Bodies. He is only just 66. He has deteriorated rapidly both cognitively and physically since February and I have just made the difficult decision to move him to a care home. Although I have gone over and over in my mind why this needs to happen now, and our kids and friends all agree, I am riddled with guilt. I question the decision every day (I start the day questioning it and end the day being certain again as everything goes downhill). I wake wondering how, when and what to tell him and go to sleep the same. I feel physically sick at the prospect. When he was first diagnosed he asked me what was going to happen to him. I said that I would look after him as long as I could but that eventually he would have to be looked after professionally but of course i would always be there. Do I start by reminding him of the conversation and go from there?
How do I tell my husband he is going into a nursing home?
- Thread starter KFIN
- Start date
You just tell him he is having a short holiday whilst you need to take a rest. He will have no idea about time or days. It will be very painful for you and I am sorry to say that you will probably always say "Maybe I could have carried on for longer." None of us are prepared for this.I have probably cried more in the last 2 years than in the rest of my life put together. But!! I could not of gone on the way things were. Once my husband had settled down and the seizures were under control he is actually happy most of the time. He seems to be content in a nice 'dementia place.' I visit 4 times a week and look forward to seeing friends who are the regular staff and am always made welcome. This is my life now. I miss the life we had but I love him and I hope somewhere in his head he is happy.xx
Hello @KFIN welcome to TP
I never told my husband the truth.
He went into respite as I was ill and never came home, he used to ask how long he had been there as a family we all told the same story, a week. After 7 or 8 months he stated that it seemed longer than a week so we told him oh yes it’s nearly two now.
All of this was just so he wasn’t distressed.
Now you have to find words that sit comfortable with you and your husband .
This only my view and you may decide that the truth is the way you would like it to be, there is no right or wrong ways to do this, it’s finding one which causes the least distress.
Please keep posting so we can support you.
I never told my husband the truth.
He went into respite as I was ill and never came home, he used to ask how long he had been there as a family we all told the same story, a week. After 7 or 8 months he stated that it seemed longer than a week so we told him oh yes it’s nearly two now.
All of this was just so he wasn’t distressed.
Now you have to find words that sit comfortable with you and your husband .
This only my view and you may decide that the truth is the way you would like it to be, there is no right or wrong ways to do this, it’s finding one which causes the least distress.
Please keep posting so we can support you.
Selfishly I cannot explain how much this all these posts help me too. I'm going through exactly the same thing. MOH is moving into what could be permanent care on Monday. I have done all I can do for him. It's just not safe for him to come home but it's just so hard to explain that to him. He's lacking insight so reasoning is impossible. I'm not sure if it's the right thing to do but I'm telling him that I need to sell our house and buy a bungalow. When I've done that I'm suggesting that he might be able to come back. So, KFIN, take comfort from all these wise people as I do. Everyone is telling us the same thing. It's so hard but we are all in this together. Perhaps it will get easier !!
So many times I have said to myself, I could have carried on longer. Once I felt rested and better, I questioned my decision for my husband to move. But then I stay over with him, or have him home, and 48 hours is about the most I can do alone, without being overtired and /or ratty from the constant questions. It is just this evening that I have noticed the patch of eczema on my leg is nearly better. My whole body started to give up when I was so tired and stressed...and he moved in February.
For us, the situation feels different to most people, as we had two homes and that was quite a factor in my tiredness, so for us, the truth was the best way forward. But by the time he moved, he had forgotten or was muddled about which home we were selling. Many days he thinks it is his childhood home, Not the one he lived in for over fifty years.
He is really happily settled now, and it has been the saving of our marriage.
For us, the situation feels different to most people, as we had two homes and that was quite a factor in my tiredness, so for us, the truth was the best way forward. But by the time he moved, he had forgotten or was muddled about which home we were selling. Many days he thinks it is his childhood home, Not the one he lived in for over fifty years.
He is really happily settled now, and it has been the saving of our marriage.
I wonder if you are relying on your OH's memory and reasoning faculties too much.
He might not remember that conversation and even if you succeeded in reminding him of it, he might forget about it again.
You are making the best decision, in complete awareness and honesty.
If lying can make things a bit, only a bit, easier, you should lie. It is necessary and compassionate.
There are suggestions that Lewy Bodies Dementia might retain short term memory moreso than say Alzheimer's and thus might affect a decision to 'remind' your husband of a past conversation. Generally, it seems wiser to refrain from retrospective debate, owing to the lack of reasoning which creates more problems and confusion. Where there is genuine capacity, then it is possible to discuss at least on a level which is understood, but beyond this and subject to a decision into Care having been made, then based upon everything in place regarding the Care Home, it should follow a day-to-day course of events. Perhaps Respite, then actual residential Care.
This is always such a huge decision, filled with doubts and apprehensions and an overall sense of utter frustration, because you long to continue caring and yet the blatant truth confronts you as the situation develops and the loved one presents in ways which become virtually unmanageable. Added to this , of course, is that deeply felt sense of betrayal or guilt, which has been cited so many, many times in such situations. This is not factual. It is an outcome brought about by a complex and extremely challenging disease, amidst which our sense of inadequacy translates into 'guilt', which is in itself a distortion. The overriding notion of the loved one actually no longer being at home, is in itself almost inconceivable. And so again we have to turn to 'best interests', which can manage this disease, ultimately, in a state of excellence. An environment which enables a 'quality of life' to take place, with proper ongoing care, instead of a potential deterioration of 'home care', owing to, in most cases, utter mental and physical exhaustion.
Once a mindset is in place, i.e. I accept the decision made is both proper and in the best interests of a loved one, then that should progress along those lines, leaving the immediate future open to events as they occur. We can never predict outcomes because every single case is different. But once that enormous burden of caring is placed in the hands of what should be a specialist team, acting accordingly 24 hours a day, then that leaves time to continue where one left off, as visiting carer and comforter - - whether as wife, or husband, a daughter or son or simply as a very close friend. And 'being there', even in such different circumstances, is wholly meaningful, for both parties.
I have heard "love lies" being described as "therapeutic untruths" - because the they are not able to understand the reasons for the truth and are unable engage with truthful replies, so they become sad, angry or both. If you try and explain what is happening he will be unable to understand anything, except that he is being "put in a home" (as he will hear it) and will actually be more likely to feel abandoned. Your role is to reduce distress, and if the truth will distress him, then dont do it. The problem is that we are raised to think that lying is always wrong and that we should be truthful at all times, but dementia is the exception. Thinking about the lies as being therapeutic may help you feel less guilt.
I sent my husband cards when I went away. I asked the carers to read them to him.
I didn`t send postcards, I sent blank greetings cards so they could be displayed.
When I returned they were all on the table by his chair.
Thank you for this comprehensive reply. Yes part of my dilemma comes from the fact that his memory is not as bad as if he had Alzheimers but his reasoning ability is very limited
Well it is 10 days in now. I haven't had a moment to draw breathe. The first two days at the home were horrendous, to just because I was doing t hardest thing I have ever done in my life but the home didn't perform well. We (son and I) felt abandoned after the first day. No-one came to explain how the home ran or ask about OH. Left in room until we ventured out to see when tea was etc. The next day it got worse. Found OH wandering around in yesterdays clothes. It took a while to realise he hadn't been put to bed. The carer assumed he had got himself up and dressed. Patently didn't know that was beyond his capability and also that he was incontinent. Need less to say, I was very upset. Floods of tears helped things to get better.
10 days in the care is better but only because they are all learning separately by trial and error. Process and consistency is sadly lacking. Quality of care depends on who is on shift.
Question: Is this normal? Are all care homes like this?
As for OH, he was very upset for about 3 days. Cried on seeing me and asking to be taken away. But he is settling. His room has become his haven. I have gone in every day so far, mostly to make sure the standard of care is adequate. It's a big place and we haven't explored all areas because he has got stressed when going too far. My next big decision is when/if to take him on an outing - for a coffee or something, Will he think he is going home? Should I bring him home for a visit? Experiences please!
10 days in the care is better but only because they are all learning separately by trial and error. Process and consistency is sadly lacking. Quality of care depends on who is on shift.
Question: Is this normal? Are all care homes like this?
As for OH, he was very upset for about 3 days. Cried on seeing me and asking to be taken away. But he is settling. His room has become his haven. I have gone in every day so far, mostly to make sure the standard of care is adequate. It's a big place and we haven't explored all areas because he has got stressed when going too far. My next big decision is when/if to take him on an outing - for a coffee or something, Will he think he is going home? Should I bring him home for a visit? Experiences please!
I personally never took OH out of the CH..
I lied when he asked how long he had been there, I always said a week, after 6 months he said it felt more than a week so I said oh yes it’s nearly two weeks, I may have been wrong but I think it kept him content.
Are all homes like that, NO.. I think a formal complaint would be the way to go, I never saw anything like that in the 9 months Tom was in the CH
I lied when he asked how long he had been there, I always said a week, after 6 months he said it felt more than a week so I said oh yes it’s nearly two weeks, I may have been wrong but I think it kept him content.
Are all homes like that, NO.. I think a formal complaint would be the way to go, I never saw anything like that in the 9 months Tom was in the CH
I was able to take mum out of her care home for trips to a garden centre, walk by the sea and for lunch/coffee and cake, but I didnt do this until a couple of months after she went in, so that she could settle. Yes, I think that if I had done this before she had settled I am sure she would have thought that she would be going home and would have kicked off when it was time to go back. I only once made the mistake of taking her back to her home - I thought she might like to choose some things for her room. Her agitation and distress was awful - please dont do it.
As @rose555 says - its isnt just the PWD who needs to adjust to being in a care home - the care home needs to adjust to the needs of the PWD and we the relatives have to adjust to them being there too.
As @rose555 says - its isnt just the PWD who needs to adjust to being in a care home - the care home needs to adjust to the needs of the PWD and we the relatives have to adjust to them being there too.
Suggestions depend on what you want to get done, although making friends there is always a good idea.
One of the most helpful things is telling people about what he is like and his likes/dislikes. Have you filled in a "this is me" booklet?
He has been in less than a fortnight and there is always a settling in period of at least 6 weeks (with mum it was a couple of months, with others it is a lot longer) and during the settling in period the PWD has to learn the layout of the place, new faces and routine and the staff have to learn the PWDs characteristics, difficulties and what works and what doesnt. Initially they often leave them to do their own thing to avoid distress and if they are up all night, they dont worry. My mum was a wanderer and she often had nights when she never went to bed, but the staff didnt force her. Equally there were days when they couldnt get her to wash or change her clothes, although they were usually pretty good at cajoling her and sometimes I dont know how they managed.
The care is never going to be the same as you would give and no care home is perfect, but so long as there are no safeguarding issues Id give it a bit longer to see how he settles.
No they are certainly not all like this. I write a post about life in a care home: see Please don't throw me away .... I visit every day and see a lot. This is not good quality care. Gxxxxaka kinred.
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