Whether to remove husband from nursing home.

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 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

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 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.

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

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.

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......................

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 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

Apologies forgot to proofread before posting

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

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.

I am delighted to hear that you may consider buying a WAV to facilitate trips out if he stays close to you and his children (and families).
I think this would be the best way of improving his life.

Maybe you could hire one initially to see how different outings work for him?
💐

Agree with renting an accessibility van before buying - the cost of those vehicles is very high (insurance, maintenance, purchase, etc)

An adapted from the production line Kangoo is a perfect choice I took my late husband out every single day, no transfer required just the electric hoist and ramp which comes fitted in the car. You can easily get second hand ones too. Hope this becomes your chosen option. With shortages or domiciliary care your husband could end up with different carers every single day at hours that may not suit him nor the family. Even no shows are common, in home settings.

I think, that the advice given to you from all of these lovely people is sound. It must be so heart wrenching for you and I completely understand, from my experience of having cared for my own dear Mother over the years, that you want to do the right thing by your husband, to give him more quality of life. However, this may work in theory, but when put in to practice, so many unforeseen situations can arise. If he is looked after well in the Nursing Home, it would be better not to move him. I don't know much about your husbands type of dementia, or how it will progress. It is all very sad, and making the right decision for him is the hardest part. Your family are very sweet to suggest all these things, but there is one thing visiting someone in a controlled friendly and caring environment, and quite another having the sole responsibility for his welfare, however well intentioned all your family may be.
You know yourself, how hard and difficult it could be, and in many situations, the heart rules the head, especially where there is a deep bond and sincere love and affection. I sincerely hope that whatever you decide, it will be for the benefit of all. Special heartfelt Wishes ♥️

A private carer could be employed too, if your family wished to take your DH out on trips and needed extra help.

I also think that your nephew's offer was so kind and unexpected that you feel it must be discussed seriously but deep down know it would not work.

Dilemma

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.

There was one thing that I wanted to clarify. You say that you will employ the carers - would this be via an agency or is your nephew expecting that his wife would be one of the paid carers?

I don't see how it would work for her to combine a formal caring role for your DH with caring for a toddler. It sounds like a recipe for disaster as it sounds like he needs a lot more care than someone just popping in or out for 15 minutes here and there. Will your DH be OK on his own when she is out at toddler groups, playdates, the school run and supermarket?

I know it is very tempting for family members to try and step in and keep someone at home but sometimes both parties have rose-tinted glasses - even professionals can misjudge the sheer amount of care that a person with dementia needs. I know because my DB and SIL (a HCP and self-employed) tried to do this with my DM and the situation collapsed after a few months as she deteriorated. Although she wanted to "be near family" - it turned out that she couldn't cope with being alone at all for a few minutes. She would forget that carers and family were coming in 5 times a day. She would phone complaining that no one ever visited her even though DB/SIL had been with her 10 minutes earlier and would bombard them with calls at work. As her mobility declined she had a series of falls. Then when she was alone and couldn't remember having multiple visits she took to calling 999 and claiming to have been abandoned for a month.

So I would look at this really carefully - everybody says they want to help now, but will they really cope with the reality of personal care and lifting? (DM lost the ability to use the bathroom, shower and walk)

Your DH would be in a 5 by 5 metre space with carers coming in occasionally. I imagine that the care home where he is at present would have people moving around all the time. If he needed anything someone would be on hand.
You say that "sadly he is aware of the world going on around him.....". Why do you say sadly?

As you have found out it is very difficult to care for someone to whom you are very close. You cannot walk away if he annoys you whereas carers can go home and get some relief from the daily stress. You have found a home that you are happy with and, as most of the others have said, you should leave him there.

You talk about your GCs visiting him. I don't think that's necessarily a good idea. Their memories of him from the past will be coloured by their memories of him as he deteriorates. I lost both my parents in their fifties when I was in my thirties. My father from cancer whose body was skin and bones when he died and my mother from Alzheimers, although she did not die for some years. My abiding memories from that period for many years was of them in their last few months. I am now 76 and I have to work had to picture them as they once were, before these dreadful illnesses struck them.

Finally, I'm not sure why you think that your DH is so keen to move, given his mental state.

He may need 24 hour care and, although your nephew and wife might think they could cope with extra carers going in, doubt this could happen realistically.
What would happen if they fell ill or the baby needed more attention? It could become very stressful.
Would paying carers to come in for several hours a day be cheaper than the present nursing home? Possibly not.

Sadly, he is aware of life going on around him and in the wider world outside the nursing home
Living in a converted garage with one family rather than the nursing home may not mean he would see any more of life especially if you and your DC were so far away.

Sadly, I don't think it is feasible.

A 5mx5m converted garage does not sound very pleasant to me.

Germanshepherdsmum

A 5mx5m converted garage does not sound very pleasant to me.

Garages are usually single skin and the foundations not as deep as for a house.
It could be cold in winter without cavity walls.

Your husband has specialised 24 hour professional care with R.N.s, a visiting GP and familiar, regular staff. "Ecellent care" as you say in your post.
His close family live nearby.
Personally I think moving your husband is a recipe for disaster.

I agree with GSM, 5x5 is small