Whether to remove husband from nursing home.

I think 200 miles away is possibly too far . It may work now but looking ahead, could the journey get too much for you?
Also, is everyone involved aware of how this cruel disease will progress? The proposal may seem feasible now but down the line…..
Personally, I would consult your OH’s medical professional for advice.

What does your husband want to do?

I would say don't do it. Your husband is settled, you are settled, and it's too far away.

Let the nephew come and visit and do the travelling as he is obviously young and fit, plus any other family members who wish to visit.

You need to be aware of how this disease will progress because my experience was that full time professional care became essential. Your husband is content where he is and the nursing home knows him and understands him. I can’t see what advantage there could possibly be in moving him, especially as you can see him often and for short visits - much better for him and easier for you. The familiar is so important for your husband now.

I’m sorry you’re having to deal with this, your husband is no age at all.

I can see so many pitfalls in your proposition, though. Moving someone in poor health can lead to a deterioration in their condition, because it will be a challenge however keen he is to move.

Will you pay the partner for the care? What would happen in the unfortunate circumstance of the nephew and partner splitting up? The children need to come first, how will they deal with conflicting priorities? Can the family be on call 24/7 as a care home will be?

Do all these relatives want to work from home in the nephew’s house? If they’re working, they’re working and not available for care or company.

200 miles is quite a distance for a weekly trip. It’s okay in August, how will be be in January? I wouldn’t want to swap weekly short visits with grandchildren for one long visit, when they’re likely to get bored and fed up.

I hope you can make the decision that’s right for everyone. Good luck.

Would you even get carers going in to your nephew's annexe? What happens if there's an emergency? If your husband becomes suddenly very ill, how quickly could you get there? This is a particularly nasty form of dementia and your husband has company in his care home. Who would keep him company in the annexe? I really don't think that this move benefits anyone.

It is really onerous and exhausting doing a regular trip of 200 miles, as I used to do to see my mother in a home and that was 20 years ago.. You'll probably reach a point where it becomes too much for you.. at the moment you can easily visit and if he becomes much more unwell you can do more regular shorter visits with ease.. I would really let hime stay where he is known and understood..

Her husband is in favour BB

I’ve got to agree with Kate54 a lot can happen in quite a short time with some conditions and your DH could end up back in residential care - possibly 200 miles away. I’d definitely be seeking some consultations with his existing medical team. A friend and her sister were actually over ruled by the medical team over the care of their mother who had vascular dementia. Has your nephew visited his Uncle recently - does he appreciate the level of care necessary?
I can see quite a few issues cropping up down the line. It’s a very big responsibility for your nephew and his wife to take on (and perhaps unfair on their children) your DH, with the more immediate family so far away.
As an aside - altering homes to accommodate disabilities can be a considerable expense - is your nephew financing this, or are you? Is the plan just for your nephew’s wife to be employed as his full time carer - at the going rate?? What about their holidays or times when they are away from home - will professionals move in, or would you be expected to step in? I hate to add that should your DH die there, have they added to the value of their property at your expense?
You have a lot to consider.

*posted too soon

but I honestly think it sounds as if he is in the right place where he is.

Nope! This is grass is greener on the other side syndrome

My gut instict - leave things as they are...

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.

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 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.

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.

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.

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

I'm curious to why your nephew wants to do it

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 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.

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 agree. What a very hard situation. But any private solution is full of 'what ifs'.

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.

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.