Whether to remove husband from nursing home.

Thank you for coming back to us OP.

It is a shame that some have questioned your nephew's motives.

I think that most people are speaking from personal experience of LBD and how it affects people. Your OH sadly has a raft of physical deficits caused by this dreadful illness, and the next stage will be the mental effects, which do include hallucinations and delusions. These can be precipitated or worsened by changes in circumstances. I know my OH thought that people were trying to do him serious harm, torture him, kill him. My presence helped to calm this down, and it was good that I was nearby to reassure him. In fact I spent most of each day with him in the nursing home.

It is worth remembering that being "home" with family is not always the best option. My OH improved when he moved into a nursing home as we were not cobbling together care with lots of different carers and family members. He benefitted from the clear routines and professionalism of the carers in the home. There seems to be a general assumption in the public's mind that home is always better than a Home - it is often not the case and I have a lot of professional experience in this field, as well as family experience.

I hope that you are able to come to the right decision for you all.

BTW, it is not a matter of what is easier, it is a matter what is best for your dh

Apologies forgot to proofread before posting

This move would have such a huge impact so many people, including your husband - huge is a small word to assess it

Do not decide on mainly what your dh thinks he wants, or how much your nephew wants to help

Use your brain, not your heart

It is definitely a no from me too. Your husbands Dementia is a viscious one that develops into severe hallucinations and nightmares 99% of the time. I have a close friend who is in his 9th year of living with this nightmare situation, day in and day out. His wife is a nurse but is totally exhausted every minute of the day. Please think carefully about this move. Your husband is receiving good care, has people around him all the time and is near you to enable visits quickly in an emergency. Why would you even think of moving him 200 miles away from you and his own children. I appreciate the offer from your nephew is incredibly generous but cannot help thinking this has not been thought through thoroughly enough. Please think back to why your husband is in care in the first place. I hope your children put your mind at rest agreeing their dad is in the best and safest place where he is.

This is ringing alarm bells, and the sceptic in me would be questioning your nephews motives. If you have no problems with the current situation then what prompted the offer? He has chosen to extend this offer at a time when, presumably, he knows your children are away on holiday. To my mind he is exploiting an emotionally vulnerable person at an emotionally sensitive time.

In my opinion this is a bad move. Your husband would see less of his closest relatives (you, his grandchildren). You will be exhausted looking after grandchildren and then travelling such a long distance to see him.

Just because his partner is a carer does not mean that she is the one applying for all the costs associated with this. You are still his NOK and your signature will still be needed (from 200 miles away). You have LPA so decisions will still need to be made (from 200 miles away).

I feel for you, but am genuinely concerned that you are even considering it. All the other responders have raised very valid points that do not need to be repeated here.

I'm uncertain about your husbands level of cognition but with the way you have described him he may not currently be able to weigh up the consequences of his decision, even if as you say he has been asked and is in favour of it.

He has a rapidly deteriorating condition and the move will definitely make this worse. With my job I come into contact with so many people who make big, legal, life altering decisions at a time when they really do not need the added stress. And this move will not be stress free, ever.

He is settled, he is close by, he is well looked after, he has a routine, PLEASE DON'T DO THIS......................

Thank you to everyone who has taken the trouble to reply to my request for input. I think you have mainly said what I expected and have provided me with plenty of food for thought before I meet with my son & daughter later this week.

One thing has angered me - those correspondents who imply that my nephew made his offer with financial gain in mind - this is absolutely not true; the annexe would be fitted out at his expense in a 5.5m x 5.5m double garage, which already exists and has PP for change of use. My nephew would pay for the fitting out and I would deal with the financial side of employing carers via DSS as I do now. My only extra expenses would be food, toiletries and electricity. Disability equipment and incontinence pads would continue to be provided by DSS.

I need to decide, in consultation with our son & daughter, whether to do what my husband believes would be better for him (the move) or what is easier for everyone concerned and leave him where he is. I may consider buying a WAV to facilitate trips out if he stays here.

I will let you know what we decide in due course. Thank you again for your opinions - I knew I would receive honest advice from Gransnetters.

How loving and magnanimous an offer by the nephew. Was he always extremely close to your husband before he got ill?

By the time I got to the part where there are children at home, I had to put on the brakes! You just know that these 24/7 caregiving tasks will eventually fall to one person. I suspect in this case it may be the young mother, always the woman. (maybe I’m wrong)

If things are working now I’d leave everything as is. It’s much more important for him to be near you, his wife, than with a nephew 200 miles away from you.
Good luck and Godspeed.
USA Gundy

I really can't see how the 'pro's' of moving him can possibly outweigh the 'cons' OP. If I've understood correctly, you found it all too much looking after your DH with carers coming in, which is why he had to go to the Care Home in the first place. Admittedly you are presumably considerably older than your nephew's wife, but not old by any means, and you couldn't cope, even though your sole concern was your DH. Your nephew's wife, will not only be caring for your DH but also for her own DH, her 15 year old child and a baby. How can this possibly benefit anyone? Like everyone else, I'm sorry that this doesn't appear to be what you want to hear OP, but these are the opinions of people who are distanced from the situation, and can therefore see things more clearly. Please take the advice you've been given, and don't move your DH, otherwise I think you will all live to regret it.

Never disturb old people or old machines. If it ain't broke.....
You could keep the annexe option for if/when any circumstances change.

I think I agree with many others who say you would be better to keep him local to yourself. Then you can see him regularly and so can your immediate family. I think that you might regret moving him to somewhere so far away.
It sounds as though he is in a good care home now and, though there is no way of knowing when, he is likely to need to be in a care home again at some stage

I want to do what my husband wants, but I expect the nursing home to raise the same objections as you guys, and, of course, they are not impartial on either medical or financial grounds.

Not objections; advice you sought based on personal experience.
Are you sure your husband fully understands what you are planning?

I think you could focus on days out from his current home

Surely that will provide him with a more stimulating environment and sense of being involved without the disruption?

Dilemmaa, I am very sorry for the sad situation that you and your DH are in. I've had two (separate) close family members who had dementia and needed to go into care homes, when we lived far away, so I can appreciate something of your situation. As most GNs here advise, I would not move my DH elsewhere. IMO many good reasons for this have already been cited by GNs here, so I won't add anything, other than to recommend a book which we (our family) found to be helpful. This is "Contented Dementia" by Oliver James, who writes about his wife, her diagnosis, and caring for her. (Other, similar, publications are available.) Wishing you as positive resolution as is possible, in your situation.

Sorry, I misread your post and thought your nephew had two 15 year olds. With a baby of one in the household the matter is completely different and frankly unworkable I would think.

I would think very carefullly indeed in your position. An alarm bell rang in my head when I read that this is your nephew's suggestion rather than his wife's as she will be the one who will be providing the actual care.

Another one went off when I read that this couple have two fifteen year old children and a third at the distance between your home and theirs and that you, being involved in day-care of grandchildren, won't be moving with your husband.

Before you decide anything at all, do please decide what you will all do if this scheme is implemated and doesn't work out, or if your nephew gets a new job, which requires his family moving, or if he and his wife decide to have another baby "before closing time".

You apparently have a good care home involved right now, and it may not provide all the mental stimulation your husband would like, but can not you and your adult children provide that?

I frankly feel that an illness of this kind necessitates professional care from carers who are not emotionally involved with the client.

I am not doubting that your nephew's wife has all the necessary professional qualifications, but she is your and more importantly your husband's niece by marriage.

Does he really want to have his bottom wiped by a relative by marriage?

I may be prudish, but to me there is a great difference between an unrelated professional emptying bedpans or changing nappies should I come to need them, than a relative doing it.

No I wouldn’t do it, my father had Alzheimer’s / vascular dementia and I know it’s not Lewy bodies but I know how quick these things can progress , I looked after my father for years before he went into a home I wouldn’t have moved him back. As I would be looking a bit further ahead thinking what happens in an energy I think they need their routine and to take him out could confuse him

It’s a lot got one family to take on especially if there is a baby involved. 4 visits a day will take 2 hours out of his day with 22 left.
Really find this offer given the amount of work strange because it will be basically down to them.
My reservation would be they change their minds after a short period and you will then habe to find somewhere else.
The reason for care homes is because there are 3 shifts of staff to look after one patient not one or two people struggling on their own to cope with 24 hour care. You will be so far away so can’t pop in.
As a retired SW/care Manager I. Suggest you take time to think very carefully about this.
Sending best wishes to you both .

Stay put.

I am in the other camp. My mother has dementia, first stages. If your husband will have a better quality of life and be happier then go for it. It’s not about you, it’s about him. Although, do they know how much work it will take to get him ready to go out anywhere and that he may change his mind and want to go back. Are they happy to do personal care? How wonderful to have a family that cares so much. I would say yes if my husband would benefit from it.

It's very easy to be judgemental when you're on the outside looking in, but you have asked for Gransnets opinions and mine is that I think you should leave your husband where he is. I know Lewy Bodies dementia is a particularly horrid disease which can change very quickly.
My mother had Alzheimer's and was in a dementia home for the last 6 months of her life as the disease became unmanageable at home (by me who had given up work to care for her). Even though she lived close to me in the home things changed rapidly with her health and I would get calls to say the doctor had been called/ambulance etc.
I would have hated to have lived any further away from her than I did
Good Luck in whatever you decide.

What if nephew changes jobs or marriage goes pear shaped and he needs to move? My DM thought about moving 250miles to be closer to my sister who lived in a cheaper housing area. Luckily she didn't as less than a year later my sister's marriage collapsed. She moved to be near our DM so she could work and DM look after the children.

It is a lovely offer but is it practical for 52 weeks of the year? travelling in the winter may not be possible

are you content visiting once a week or less ?

Hi … what a generous thing to offer! Though I have to agree with the other Gransnetters, probably best to leave well enough alone. Your husband’s condition is bound to change as the disease progresses, and to need more care - night and day - and if your nephew’s wife, as the main carer, has a 1 year old to look after already, how could she give quality time to both? What if the baby gets ill? Even with outside carers coming in (and no guarantee it will be the same carers all the time) it will a nightmare to oversee. Don’t let your darling husband go 200 miles away!

Take note of the overwhelming advice to NOT do this. It would be different if his care where he is now was not good but you say yourself that it is excellent and you and the grandchildren are nearby. I too would question why your nephew wants to do this, it could indeed put an awful stress on their marriage when your husband eventually deteriorates, sad as this is to articulate. Moving to another health authority could be fraught with problems; many families with similar problems to yours would love to be in the position you are in with no money worries, excellent care home and family nearby. Please don't do this.