Whether to remove husband from nursing home.

Its obviously entirely up to you and your husband, but I strongly think that your husband is better where he is. Apart from anything else, a move 200 miles from you isn’t practical. It could be hugely disorienting and could lead to irreversible deterioration.

I also wonder if your nephew understands the loneliness, problems and real cost of looking after one patient at home? Friends and relatives may promise help, but realistically would they help when help was needed?

I wonder if they are looking at the DSS payments without thinking through all the practicalities? The DSS seems to pay a lot, but it really isn’t a huge amount and could be swallowed up by expenses which might lead to resentment.

My father recently moved into a care home because his condition has severely deteriorated. It’s better for him in most ways and also for us in almost every way. There are residents and others around to talk to, plus some activities, and wonderful staff who do their work, and who can then go home to relax and de-stress. Something that family members often find more difficult to do at home.

I had cared for dad, half time with my brother, for several years previous to this. It was very hard and I wouldn’t advise it for anyone.

Hope that whatever you and your husband decide works well 🌷

It is a lovely offer and will have been done with the very best of intentions.
However, I know from caring for my own beloved parents, how easily the caring can become a burden and unexpected resentment can set in.
Your poor husband will deteriorate and this can happen quickly. Even the process of moving him could exacerbate his declared.
I would say ,please, leave him where he is...for all your sakes.

There are so many what ifs here. My daughter got pregnant and spent 8 months in hospital, unable to look after her children or even the baby who remarkably survived the most dangerous pregnancy, for another two years. Totally out of the blue and leaving her permanently disabled. I spent weeks in hospital with two of my children at different times. Illness strikes, accidents happen; we none of us know what’s around the corner and what would either of us have done if we had responsibility for a loved family member requiring 24 hour care.
This suggestion by your nephew Dilemma, however well intentioned, is fraught with danger. My uncle made the decision to bring my disabled widowed grandmother to stay with his family. A lovely extension was duly built with the money acquired by selling her small home. My aunt had little choice in the matter and became full time carer of a cantankerous, demanding, unhappy old lady. At my aunt’s funeral my cousins expressed their anger at how the decision of their father wrecked their mother’s life and led to her early death. A lifelong rift grew between my uncle and his siblings who saw their inheritance disappear into the extension and uncle’s house greatly increase in value. His intentions had been good but led to great unhappiness.

Absolutely NOT. Even if nephew means well. A proper care home is best with his care

What about you? Wouldnt you like to return also to your hometown and be near your husband in what may be his last years? You cant be your grandchildrens 'nanny' and carer forever and in this situation its a bit selfish of your AC that they cant just pay a real childminder/nanny to see to their own kids a few days a week now- and let you follow your beloved husband.Yes you would see THEM less instead but surely better that than missing out on your husbands last years?🤔

OP I don’t think your nephew knows what he is taking on. I had my dad live with me for three years before he died and he didn’t even have dementia but I regretted the decision very quickly. It really had a negative impact on my day to day life and I ended up resenting him. What seems like a good idea at the time looks very different once it becomes reality. In your shoes I really wouldn’t recommend you do this. People with dementia need a lot of care and what if he ends up in hospital where he is no better off and you won’t be able to visit often?

I’m with others here in that it’s a very generous offer but I think he’s better off where he is. I’ve had experience of a relative with this condition and it can deteriorate very quickly, so you may be left in a position where that arrangement would no longer be suitable and you would need to find a good care home - which it sounds as though you already have. I’d leave well alone.

Even if your nephew lived a mile away from you, this is a bad idea

I would find it difficult to travel 200 miles regularly and, as you get older, so might you. My immediate thought is that knowing the care somebody needs and being tied to that care are two completely different things, despite experience as a carer. Managing the staffing for this would be difficult and if your husband gets social care, the SW's would limit the care to the bare minimum and I would be amazed if it would extend to full time care.
The one thing that you might consider, is fighting for Continuing Health Care funding as your husband has a medical condition which requires your husband to need such extensive care. This is not means tested nor would your husband need to make a contribution. Look at the Care to Be Different website if you haven't already done so.

I must agree with all the others. There are so many things which could happen, and your husband would be the one most affected.
I see he’s only been in the nursing home since January, and you cared for him at home, so I can see why the idea of him being in a family member’s home rather than ‘ in care’ would seem attractive to you, but would it really benefit him if any of the ‘what ifs’ happened, bearing in mind that ‘down the line’ could be a long way away?

I agree Katie !

Honestly if you can’t move with him forget it, 200 miles is too far, if costs are the same why do it in any case. Your nephew either hasn’t thought it through or there is some ulterior motive.

I’m with the majority in thinking this wouldn’t be a good move. Particularly as you say your husband is currently receiving excellent care and with the added advantage of being local to you and your children.

If your husband is now completely immobile he requires 24hr care by experienced nurses and carers who work as a team. With the best will in the world he won’t receive that level of care by well meaning relatives supplemented by local authority carers popping in and out at sporadic times. I’m so sorry you are facing this situation but I think the proposed plan would quickly unravel.

No disrespect to your nephew but I doubt if he fully understands the intensity of the care your husband requires to keep him comfortable,safe and well. Would it be possible for him to use some of the money he is offering to spend on the building work to fund a part time personal assistant who could take your husband out a couple of times a week to pub, football etc. You would be able to accompany them if you wished and have precious time with your husband while someone fit and able is manoeuvring the wheelchair . He could be taken out in a taxi equipped with a wheelchair ramp.

Dilemma, I think you have your answer! Has your nephew any idea of the reality of what he is proposing,!?
In my view it is a disaster waiting to happen! You may well be able to visit but 200 miles! You will have no real idea if how things are ,- a preposterous idea. ,- sorry to be so blunt but this plan is wrong on so many fronts .

I agree with the majority of views here. The 200 mile distance, which could be very disruptive for your husband and the frequent journey to visit him, whether by road or rail, difficult, due to traffic problems, rail strikes; the loss of permanent nursing care and regular visits by the GP; the LA funding (this would need to be transferred to the new LA, I would imagine),; your nephew’s young children, whose needs change continuously; the legal aspects regarding the home extension. So many reasons why he should stay nearby in a place where he feels safe and well cared for, with frequent visits from you. It is heart warming that you have such a close and caring family, and I am sure you will make the right decision. 💐

I can only agree with all those saying don't do this. Your nephew's wife may be a carer but she has a teenager and a one year old who would be badly affected by all the care of a very ill person going on around them. I know from much younger people that having to travel to visit parents once a month is exhausting and disruptive, at present you can pop in for a short while, your husband is well cared for and presumably your children content with the arrangements. He is your husband let sleeping dogs lie.

My dear Aunt had this form of Dementia with Parkinsons.
The family tried hard to keep her at home.
However in time as they do, she got worse and was moved into a Nursing home.
My cousins regretted not doing it sooner.
If your DH is cared for, this relieves any stress for you.
Keep the balance for him and you, then the rest of your days together with be happier.

I see alarm bells on this idea!

why would a nephew (however much he thinks of his uncle) want to do this with his partner! money can be the only reason.. Do Not Do It. is my feeling.

I am sorry , but I feel it is unrealistic to move your dear very I’ll husband 200 miles by train
Is he very unhappy where he is ?
I’m not sure he would be any happier after being moved , and you will find the travelling to see him very tiring ,
My husband had Parkinson’s and was completely immobile , we managed at home with a carers package , I had my Daughter next door , we built a granny flat and moved , it was only round the corner but the move greatly disturbed him and he died seven months later
The move did make things so much better for myself and the carers but it was an upheaval for him

I have to agree with the majority on here. 200 miles is too far. He seems to be happy and content where he is so why move him?

If this was my father I certainly wouldn't want him moved away. 200 miles is a huge distance to negotiate under normal circumstances but if your DH were to be suddenly taken seriously ill and admitted to hospital it would be some considerable time before you could be at his bedside.

None of us are getting any younger and all these relatives (sister, brother and others) that you say are willing to help by WFH etc would be taking on a huge commitment and I would have concerns as to how long they would be prepared to continue as your DH health deteriorates.

The time frame is also a major consideration; has planning permission already been granted? How long will the building extension take? Who will pay for all the specialist equipment, hoists wheelchairs etc?

It is lovely that the nephew would want to do this for your DH but I truly do not believe he has thought this through.

I think you also need to arrange an appointment with your DH doctor to explain the proposal and for his to give his professional opinion.

Sensible summing up I feel from Hithere

If your husband was to move as suggested, what is the timeframe for the adaptations?
Will he able to make such a huge move with all the changes involved in (say) six months time? What do the medical team say/think?

You say that the bedsit will "down the line" be a "teenage" bedsit for your (already) 15 year old great nephew - given that he may well be at university (or other training) in three years, are we thinking of this as a very short-term solution? Is your husband thought to be close to end-of-life? LBD (as you will know) is very different person-to-person. I understand 2-20 years life expectancy from diagnosis so only you and your medicalteam can have any real idea regardinghow much longer your dear husbandwill be with you... The nephew and family are obviously looking beyond the time your husband will be there but is it fair to have the extended family in this awkward situation?

You obviously will travel to see him and say you will see him as often as you do now but his children will not be local and will probably visit less. Will you want to be there more (or less) as this condition progresses?

Will other relatives really want to work, in rotation, from the bedsit to keep him company? Will he know them in six months or will they be a "strange person" and thus scary for him by then. I think this is not at all feasible if you think about it. More is required to work from "home" than just a laptop. You can't be engaged with a relative and focused on work at the same time - especially if they need everything doing for them and want the TV on or radio etc. Working in headphones is possible but not really very nice - and also isolates you from your environment.

I would not want to do this if I was his daughter - and would be unhappy that it had already been discussed with him.
I would definitely talk with your adult children about this suggestion at some length and in detail. I would try really hard to listen even if your heart says to go ahead with the move.

My mother had unrealistic expectations of my father when he was actually very ill. You love him differently to your children and they may be more objective.

I hope that whatever decision you make you are all in agreement and it works out for the best.

This is so sad and I really feel for you. My late OH had Parkinsons, latterly with dementia .... very similar to Lewy Body. I also worked for part of my career with people suffering from dementia. And my mother had LBD too.
My experience is that moving people with dementia causes deterioration. With his illness your OH is not capable of making such a major decision and being aware of all the ramifications of this. I am sorry to say that by the time the annexe has been converted, a care package sorted and funding renegotiated he is likely to have had some deterioration.
He has qualified nurses on tap and is in a routine that is working well. I feel sure you should not rock the boat.
The hope that he will be able to go on outings to pub etc is unlikely to come to fruition .... he is already sleeping most of the day and these sort of activities which superficially have appeal will be very stressful for him. I know I tried to organise outings and my poor OH was just wrecked by it all.
Maybe leave him be ... you are nearby and able to visit; he is settled; and his future is so uncertain in terms of deterioration. My mother had LBD and went downhill much more quickly than we had expected.
My heart is with you and I can hear that you feel torn by this offer. But he needs continuity and peace, not a major disruption and the general melee of wider family life which he will find very hard. My OH could barely cope with the GC visiting... it was all too much for him.
Leave him in his peace where you can be with him easily when needed and he has a routine and constant professional input.

My nephew's partner is an experienced carer

There should always be a qualified nurse on duty at the nursing home too.