Your husband is currently being looked after in a regulated and inspected care home for 24 hours a day. Safe, secure, well fed, needs met according to his care plan.
You can visit him easily, and regularly, and can monitor him yourself - as he is nearby.
Surely moving him 200miles away would probably be very stressful and upsetting for him and you?
There is no guarantee that a care - package there would be better- most likely not as good. You say it will be a succession of carers doing various visits per day as well as relative’s help.
Even if he does not interact with the other residents in the care home he is safe, can watch what is going on and will build relationships with his carers. He is not lonely.
Living in a small extension 200miles away does not seem to be advantageous in any way for him now, or in the future.
I can see an extension to your relatives house improves their home ( they have future plans already for it). His care also provides employment for a family member but does it really benefit your husband or yourself?
Members of family who are close to him/you should be the ones travelling to see him in my opinion.
Gransnet forums
Care & carers
Whether to remove husband from nursing home.
(138 Posts)My husband, aged 68, has Lewy Body Dementia and has been in a nursing home since January this year after 3 years of care at home by myself with carers coming in for the last 6 months. He is completely immobile, requiring everything to be done for him - feeding, dressing, washing, personal care, switching TV or radio or CD player on etc. Sadly, he is aware of life going on around him and in the wider world outside the nursing home, although he sleeps for large parts of each day. The care home is local to myself and our two adult children and the staff there like my husband and provide excellent care.
My nephew, who is very fond of his uncle and me, has offered to covert an annexe at his home into a purpose built "disability suite" for my husband to live in. My nephew's partner is an experienced carer and they have two children aged 15 and 1. I have discussed a possible move with my husband and he is in favour as he would see more extended family members. Both our children are away on holiday so I will call a family meeting when they are both back home.
There are pros and cons to a move:-
Pros:- More trips out to pubs, old haunts, possible football matches as more younger folk available to manhandle wheelchair into WAV. More company from various relatives, some of whom could work from home in the annexe on a rota basis.
Cons:- My nephew lives 200 miles away in my husband's (and my) hometown. I need to stay in my current home to help with school runs for our grandchildren 4 days a week. I could travel by car or train each week (or most weeks) and would see him as much as I do now (an hour or so every other day). He would, however, see little of our grandchildren as they and their parents have social activities or need to relax at weekends. I would think a visit every 4-6 weeks as they do with their other grandparents might be possible, + FaceTime calls.
Sorting out a new care package and paying for it would not be an issue with my nephew's partner being well versed in the system. Costs would be broadly similar either way and so are not a problem.
I am unsure whether to move my husband or not and thought the wise heads on Gransnet might "see" things that I haven't considered, or even have done something similar themselves.
Yoir dh should stay where he is, where they have trained medical personnel 24/7 to take care of him
I agree - one person could not possibly dedicate 24/7 hours to someone whose needs will probably increase, especially if the carer has a home and family, nor does living in an annexe sound suitable.
At least in the present nursing home his needs will be met by staff who are constantly on duty, night and day.
Hithere has put forward a very reasoned argument for him to stay. 20 miles is far enough, 200 miles is too much.
At today's prices, how often could you afford to visit, even visiting weekly would soon take its toll on you. As we are aware the trains do not always run.
I personally think he should stay.
You say that your DH is currently, partly LA funded. Would your current LA be willing to fund him even though he has moved out of county for his care. They could say that, as he is living with his family, he is now based in the new LA and must look to them for his fees. Would they grant what his current LA offers?
I canonly reiterate, what I have said before. If you do what is suggested, then you need to have legal advice.
Skye17
Just to say I agree with everyone else.
So do I. 200 miles is a long way especially in the winter months.
If it ain’t broke, don’t fix it!
Greener for your husband, I mean
Everything else is a wonderful castle in the sky
1. Your dh has a degenerative desease that may become unmanageable in a private residence
2. The distance is a deal breaker, honestly - too far
3. What is the timeline for building this annex? Financial arrangements?
4. Your nephew and his wife may have seen the level of care your dh needs now but they most probably have no idea how much, energy and impact in their lives to live like that 24/7
5. Their kids deserve the full attention of their parents
6. Everybody might be willing to help now but for how long
Yoir dh should stay where he is, where they have trained medical personnel 24/7 to take care of him
I am personally baffled moving him was even considered in the first place
Logically makes no sense
Emotionally it may but the impact is too high and too short term
I would say don’t move. He is well looked after and seems happy where he is. You cared for him at home for as long as you could but now he needs complete care which is being well provided where he is. Will he get such good care with the nephew? Plus you will find it difficult to visit. He doesn’t seem unhappy where he is and you have no worries that he is well looked after which is a very important factor.
and presumably the GC are junior age if they need taking to school, so how appropriate are visits to GF as dementia progresses.
young children may not understand the condition and be confused by seeing GF less able to communicate with them.
for whose benefits are such visits.
i think they could be tailed off.
if he wants to go, and he can be accommodated there, maybe he should have what he wants.
it is a difficult decision.
good luck.
I would say don’t move your DH.
200 miles is too far away in the long run. 20 miles, maybe a consideration.
Without wishing to be blunt, it could be that they only see him being his best self. You’re his wife, you know him so well…
you say DSS for for care, with client contributions.
is this local authority.
as there would need to be a new care needs assessment by the new local authority and they may decide on a different, higher client contribution.
also how realistic is the idea of outings to football matches etc.
but i also think you ought to put your husband first, before any child-minding of GC.
Just to say I agree with everyone else.
It is a lovely offer but in my opinion could open a minefield. I am with Callistemon every step of the way- I think he should stay where he is.
200 miles is too far away and if you were to become unwell and could not cover that distance? At least he is local and well cared for.
It is a lovely offer but there could be problems if they have a young family and circumstances could change.
200 miles is a long way for you and your children to travel regularly.
I would leave your DH where he is being well-cared for at the moment, near you and his children.
He is settled somewhere you say looks after him well, where you can see him frequently. Your nephew's wife may be well versed in the care system but you've still got to find a care team which may be difficult. You say she knows how to navigate the system where they are but the reality might be very different. I feel you could regret a move and then not be able to find a place in a care home that can support your husband. I think you would be better leaving him where he is.
I agree. What a very hard situation. But any private solution is full of 'what ifs'.
It is indeed a very kind offer from your nephew. However I can see future problems if you move your DH. 200 miles away - that is some distance! I think if I were in your situation I would leave my DH where he is . You know what you are capable of and also know your DH so well, so I feel sure you will make the correct decision. I would be very cautious indeed about your DH moving so far away!!
I can tell this is something you would like to do Dilemma but I agree with everything SueDonim said. You need to consider very carefully before moving your husband. Lewy Body dementia can progress very quickly as you have found and patients often need more specialised care. It is kind of your family to offer help in this way but I would think long and hard before accepting their offer. I feel for you and your husband dealing with this terrible illness.
Thank you for your rapid replies and decisive opinions. To address some of the issues raised:-
As well as my nephew & his family, who live onsite on a smallholding, there would be my two sisters and my brother and sister in law to help. All have visited my husband in his care home over the summer and understand his condition and needs.
The annexe would be fitted out at my nephew's expense and would be used as a teenage bedsit down the line for my 15 year old great nephew, who is a nice lad and keen to help his great uncle.
The 200 mile trip could be done by train - no accommodation costs as I could stay with my nephew or sister.
Carers would come in 4 times a day to do meals & personal care with my nephew's partner, who works part-time from home (a non-caring job) being on hand much of the time. DSS pay for care at present with my husband making an assessed contribution from his pensions; this would continue to be so.
My husband is not (and never has been) a social person but likes seeing people he knows. He does not engage with other residents in the nursing home when he is in the communal lounge.
I can see my husband's quality of life improving if he moved, at the expense of seeing less of our grandchildren. I would still see the children but have the travelling to do, by train or car.
The great unasked & unanswerable question is how long would it be for?
I will meet both our children when they are back from their holidays and ask for their views - I have LPAs but we agreed that all major decisions would involve all 3 of us.
The nursing home has medical staff (SRNs) who oversee health needs with weekly GP visits to the home to see any residents with health issues. I can see that losing this care would be a negative and might lead to stays in hospital as his health inevitably deteriorates. There is already a DNR order in place.
I was shocked when my nephew suggested this plan - it reduced me to tears that my extended family care so much. My husband is an only child and has no relatives other than long lost cousins, so regards my extended family as his own.
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.
I'm curious to why your nephew wants to do it
What a super nephew and niece-in-law you have. Personally, I wouldn’t put that on anyone. You say, finances are not a problem. You and your husband will obviously be paying for the building of the annexe. Ask your husband what he would like to do and go from there . Good luck 
My gut instinct is also if it’s not broken don’t fix it!!!
What a very kind nephew, what a very loving caring family.
Lewy Body dementia is pretty awful and I feel for you. It seems you are lucky to have a caring family. I would say your responsibility to your husband probably still will come above that of your grandchildren as they are their parents first unless you are a primary carer for them. Albeit on call for him. Time will now be limited don’t make the distance cause a potential problem for you.
Personally i wouldnt. I can see all sorts of issues. Distance being near the top. We had similar with mil and thank goodness she stayed where she was. It is a lot to consider - it is a very cruel disease.
What a difficult situation for you all, you have my sympathy. I really think it’s too much for your nephew’s wife to care alone for your husband if he needs full care. You say she also has a one year old, it would surely be impossible to cope with his night time needs as well as those of the baby? Your great nephew will also be doing his GCSEs next year. I’m sure they have offered with the very best of intentions, but it would be too much for any young family. I agree with other posters who say it’s much better all round for him to remain where he is - it would be worth looking into whether you have local organisations who would help you to take him out of his care home for trips to the pub, walks etc. if you haven’t already done so.
If you decide to go ahead with this move, and I am among those who think you are better off NOT moving, do make absolutely sure you have a legal written agreement with your nephew over what is bein done, who is paying for it, what is goingto pay for his care. if the family are providing care for payment how pay will be negotiated, including pay rises.
So many arrangements of this nature in families go so very very badly wrong (we get the threads on GN) that if the move is considered make sure that everything is writing and legal. Use a solicitor, they know what should be in and out of such agreements.
What a lovely family you have to make this offer. Whatever you decide, I'm sure all your family will understand as you're putting your husbands interests first.
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