Whether to remove husband from nursing home.

Is there anything else behind this change? Apart from what your dh thinks he likes?

It is extremely unusual that almost all posters (all but one) agree it is a bad idea

This makes no sense at all unless we are missing info - plus OP is very much for this

what about night-time supervision, would there be a camera, would a person be able to check on him, come to him if necessary in middle of night.

Thank you for your update, Dilemma. I know it won't be easy making a decision because we all want the absolute best for our loved ones and there are just so many variables to take into account. Good luck.

Update & clarification:-
Family meeting arranged for next weekend, after which I may be able to sleep again...

My nephew did not know his cousins were away when he made his offer - I was visiting my extended family for a few days. He is not "trying it on" as some have suggested.

The proposed building has been built with 3 double skinned, insulated walls (above building regs standards), full width privacy glass bifold doors to 4th side and a pitched roof which will also be fully insulated, as is the floor. The internal dimensions are 5.5m x 5.5m = 30.25 sq.m. which is bigger than many studio apartments and some 1 bed flats. My husband would have more room than he has in the nursing home and country views through the bifolds, if he were to move.

Thank you all for your input - I will let you all know what we decide in due course.

This was a reply to Daddima… sorry it didn’t include the quote.

Sadly it is a form of dementia that involves hallucinations and awful aggression. My neighbour’s husband has been sectioned twice because of it.

I would also like to add to thr voices of 'Leave him where he is'
I speak with experience of having to deal with dementia in a close family membetr. What you have to realise is that a move could be highly traumatic for your husband, no matter how much he seems to be 'For' the idea. It would be very hard for him to be in unfamiliar surroundings.Things can advance very quickly and without sounding horrible, things could take a turn for the worse straight away.I just think you would be much better keeping him where he is as you seem happy with the care he is getting.
If someone became ill themselves in your nephew's family, they wouldn't have the emotional space to then care for your DH as well so he'd possibly have to be uprooted again.
Good luck with whatever you decide, it's never easy.

. ‘Your husbands Dementia is a viscious one that develops into severe hallucinations and nightmares 99% of the time’

I do know that the Lewy bodies present in this type of dementia can cause hallucination or sleep disturbance, but isn’t this rather an inaccurate description, which could be alarming for anyone affected?

I want to flag up again the idea of improving your husband's quality of life whilst staying put at the current home where he is otherwise settled.

Someone earlier suggested an adapted Kangaroo. I'd look to hiring an adapted vehicle first to see how excursions go - and then - fingers crossed, looking at purchase if they go well.

It may be that his own adult children would actually like to help with days (or half-days) out now and again if he was able to enjoy them and was local.

Someone also suggested hiring help on an outing-by-outing basis - which sounds like a good option.

There may also be a charity offering this.

I am of course prepared to acknowledge that your nephew does not have an ulterior motive. That said I fail to understand how you can contemplate this proposal!!!! He is in a nursing home that you are happy with , you don't have the 24 hour stress of giving him both physically and emotional support , what in earth are you thinking about!!!!!! Do you rest want him 200 miles away? Your nephews wife will have the bulk of his care on her shoulders - WHAT!? I am not convinced we have the full story - I get that , it's none of our business!! but on the face of things this is a barmy idea. It is so bizarre I can scarcely believe it !! ?? No No No No. Please don't do this .

And might that small space might have to include a loo and shower? If not now, at some point might your husband need the room to also accommodate a hoist, making it even more crowded. And there has to be room for carers to work.

I would expect the single skin walls to be insulated and lined, and heating and lighting added, thus making the space even smaller. Would he really be happy being confined to such a space?

I agree with cocopops.

You do not move an old tree

I agree with GSM, 5x5 is small

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.

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.

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

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.

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.

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)

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.

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

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 ♥️

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.

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

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?
💐