Location of care home

[nestle]

Hi Folks,
I 've started trying to prepare for 'the future' .....an emotional mine field .
We live 2 hours away from my OH kids , when he was diagnosed 3 years ago his son asked if Dad needs a care home where will it be ? Close to kids kids in Hertfordshire or close to me in the south west .
I talked to my OH about it a few times since and he consistently replied 'near his kids'
He has previously said he accepts going into care and doesn't mind to go .
Unexpectedly my OH raised the topic of care homes ....... (With his Lewy body he goes from very muddled to calm and clear ) we had a great discussion but when it came to weighing up here or there we got stuck .

I told my GP about this he thought it would be big upheaval for OH to move far away . Daughter has asked if he was near them would I be able to visit every week and stay over so some one can visit him every day ?

I think it will be very difficult for me if he is 2 hours away and started to wonder what is in ' Our/my best interest , as his needs increase and I'm not able to safely meet them . We still have an affectionate relationship and whilst he is physically well he relies on me for everything else . I'm emotionally exhausted and my life has been completely taken over by his illness .
I've really struggled emotionally since diagnosis and worked hard to find support but it has often been lacking .
This question is a very very troublesome one . I thought I might 'practice' looking at care homes near me but then ........ His daughter 's have POA for finance . No POA for health in place .
Please help . Thank you Nestle X

 

[margherita]

Hi @nestle,
You sound quite lonely in the difficult task of caring for your OH and we all know the situation is not going to improve.
If your OH prefers to be in a care home near his kids and they are, as they seem ,willing to take care of him, I would take into consideration his staying near them.
His daughters already have POA for finance. Couldn't you ask him ( when he is calm and clear) to make a decision about POA for health? The person/ persons who will have it are likely to be those your husband wants to be near and you might visit him when you reasonably can.

 

[Beate]

Why should he suddenly move near his kids and make it more difficult for you to visit him? What are the kids doing at the moment - how often are they visiting? You're his primary carer and wife, you should decide this, health POA or not. Don't let others bully you into a decision. All my OH's family lived a few hours away, but they very rarely visited. There is no way on earth that I would have allowed anyone to put him into a care home closer to them while at the same time sidelining me!

 

[jenniferjean]

I talked to my OH about it a few times since and he consistently replied 'near his kids'
He has previously said he accepts going into care and doesn't mind to go .

I've not often heard of a PWD accepting going into care. Most of the time they are against it, not accepting how much better off they and their carers would be. So that is good at least. As to where, well if it was me I'd have to take his preference into consideration. Just my view.

 

[Shedrech]

hi @nestle
you haven't mentioned this, so it probably isn't what you want, but, might you and your OH move now nearer to his children ..... if you are on their doorstep maybe they would step up and spend time with their father while he is living at home to take some pressure off you now, which you would clearly appreciate
then, should your OH move into a care home, you will be free to visit him when you want and under your own steam - a once a week stay over sounds hard on you, to me

 

[nestle]

Hi @nestle,
You sound quite lonely in the difficult task of caring for your OH and we all know the situation is not going to improve.
If your OH prefers to be in a care home near his kids and they are, as they seem ,willing to take care of him, I would take into consideration his staying near them.
His daughters already have POA for finance. Couldn't you ask him ( when he is calm and clear) to make a decision about POA for health? The person/ persons who will have it are likely to be those your husband wants to be near and you might visit him when you reasonably can.

Thank you for your response

 

[nestle]

hi @nestle
you haven't mentioned this, so it probably isn't what you want, but, might you and your OH move now nearer to his children ..... if you are on their doorstep maybe they would step up and spend time with their father while he is living at home to take some pressure off you now, which you would clearly appreciate
then, should your OH move into a care home, you will be free to visit him when you want and under your own steam - a once a week stay over sounds hard on you, to me

Thank you for your response

 

[nestle]

I've not often heard of a PWD accepting going into care. Most of the time they are against it, not accepting how much better off they and their carers would be. So that is good at least. As to where, well if it was me I'd have to take his preference into consideration. Just my view.

Thank you for your response

 

[nestle]

hi @nestle
you haven't mentioned this, so it probably isn't what you want, but, might you and your OH move now nearer to his children ..... if you are on their doorstep maybe they would step up and spend time with their father while he is living at home to take some pressure off you now, which you would clearly appreciate
then, should your OH move into a care home, you will be free to visit him when you want and under your own steam - a once a week stay over sounds hard on you, to me

Thank you for your response

 

[Sirena]

If you did move your husband near his children, how realistic is it that they will visit him regularly? Do they see him regularly now, and understand and cope with the extent of his condition? Or would he be better off in a care home near you because you would visit more reliably? It doesn't sound reasonable for you to do the 2 hour trip once a week for what could be years on end.

What people say they will do, and what they actually do, are often two different things. When my mother was in the earlier stages and a care home was mooted, she had a big group of friends and several said they would visit her weekly or even daily, so I considered organising a care home in London where she lived. However by the time she actually needed a care home her dementia was much more advanced, and all her friends (except one) had stopped seeing her. So I moved her 2.5 hours away to a care home near me. My friend said the same thing happened with her mother - friends and relatives said they would visit, but never did.

However if his daughter has LPA finance she holds the purse strings and will be presumably be organising payment for the care - would she agree to pay for a care home near you? Will there be a cost differential? Care homes near me are considerably cheaper than in London, which is a consideration if you're potentially looking at years of care costs.

 

[nestle]

Everything built up , he's progressed ,my brother seriously ill couldn't get to see Brother ended up telling his family things had to change, exhausted , couldn't carry on ! They asked me to try live in care, knew he wouldn't take to it and he hasn't . Listening to him decided he was trying to tell me he missed his family and wanted to see a lot more of them. Makes sense . So, the decision is made, family is looking for a place close to them . Trouble is for me I'm so scared for him . I have been the one constant in his life from diagnosis to now He will be 2 hours away . Just scared about it all

 

[Shedrech]

@nestle I am so sorry that you are going through such a hard time
and 2 hours is quite a distance
I hope your husband's children live up to what they have said they will do, so he gets to see them often
is there any way you can move nearer, though I appreciate what an extra upheavalbthat would be
best wishes to you and to your husband

 

[nestle]

Thank you . For me there isn't anyway I can move where they are . My life is here in the southwest and when not here it's Yorkshire something I told my partner when we first got together 23 years ago . Going forward my Brother been offered to go on lung transplant list . Potentially his life is shorter than my partner who now does not reliably know who I am our recognise the place we live as home . Yes I too hope his children are able to live up to helping him be comfortable and happy in the next phase of his life

 

[Bikerbeth]

No help or advise to give but so sorry to hear of your situation and I hope it works out for you both

 

[canary]

I dont think your children realise how much work there still is when someone moves into a care home. You will not be able to respond quickly enough to problems, appointments and other emergencies, so the children will have to be the initial contacts and be prepared to drop everything to get him to appointments if he falls and breaks something, has a "funny turn" and ends up in A&E or gets an infection. If there are problems (and most people have a few problems) then family will be asked to come and speak to the manager, or attend meetings. They will need to keep an eye on what is going on, replace stuff that goes missing, or gets broken, buy clothing and toiletries, agree care plans, have conversations with doctors about treatment, sort out finances for hairdresser, chiropodist and optician, organise replacement hearing aids and dentures when they (inevitably) go missing
There is always something.
And this is as well as visiting

 

[Baker17]

Hi Folks,
I 've started trying to prepare for 'the future' .....an emotional mine field .
We live 2 hours away from my OH kids , when he was diagnosed 3 years ago his son asked if Dad needs a care home where will it be ? Close to kids kids in Hertfordshire or close to me in the south west .
I talked to my OH about it a few times since and he consistently replied 'near his kids'
He has previously said he accepts going into care and doesn't mind to go .
Unexpectedly my OH raised the topic of care homes ....... (With his Lewy body he goes from very muddled to calm and clear ) we had a great discussion but when it came to weighing up here or there we got stuck .

I told my GP about this he thought it would be big upheaval for OH to move far away . Daughter has asked if he was near them would I be able to visit every week and stay over so some one can visit him every day ?

I think it will be very difficult for me if he is 2 hours away and started to wonder what is in ' Our/my best interest , as his needs increase and I'm not able to safely meet them . We still have an affectionate relationship and whilst he is physically well he relies on me for everything else . I'm emotionally exhausted and my life has been completely taken over by his illness .
I've really struggled emotionally since diagnosis and worked hard to find support but it has often been lacking .
This question is a very very troublesome one . I thought I might 'practice' looking at care homes near me but then ........ His daughter 's have POA for finance . No POA for health in place .
Please help . Thank you Nestle X

My husband has a son and when it was time for a care home I chose a brilliant one that was a thirty minute drive from where the son and I live, to cut a long story short it ended up in court with the son saying it was too far away to visit regularly. The courts decision was that my husband should move back to our home town with the son saying under oath that he would visit everyday, so I had to chose somewhere and my husband moved. Eight months later and the manager wants my husband out as she says they can’t cope with him, the son only visits at the most once every three weeks for an hour, so off it goes again, the original home have assessed my husband and said they are happy to have him back, at the last meeting about this terrible situation the son said “ if he moves back it means I’ve wasted eighteen months of my life”. SS are sitting on the fence as usual, I’m so disgusted by the way I was sidelined as his wife of 43 years, btw no LPA for health and welfare in place much to my regret but sometimes people can be so unfeeling and nasty it’s unbelievable

 

[nestle]

Thank you all ())

 

[maryjoan]

Thank you . For me there isn't anyway I can move where they are . My life is here in the southwest and when not here it's Yorkshire something I told my partner when we first got together 23 years ago . Going forward my Brother been offered to go on lung transplant list . Potentially his life is shorter than my partner who now does not reliably know who I am our recognise the place we live as home . Yes I too hope his children are able to live up to helping him be comfortable and happy in the next phase of his life

I had not thought of this situation, so thank for raising it.
I, too, live in the South West - he is from the East Midlands, and I am from Lancashire and my brother and sister still live there.
So, this is something to be considered. thanks for again for raising it.

 

[nestle]

So, back in June my partner with LBD moved to a care home, its close to his family so his wishes were respected. His family see him every day. I am traumatised by the whole thing and on never ending emotional rollercoaster For me its a 3oo mile round trip , in 12 weeks I have visited 9 times, spending about £130 on petrol per month. I mentioned to his family who have POA for finance that I am struggling with the cost of these trips, first time by telephone.....no response..... second time by WhatsApp message.... no response, hoping they would provide me with assistance to maintain my visits … silly me . My support worker suggests writing, my family suggest reducing number of visits and telling them cant afford it.
My choices are stark......feeling very sad...
Not sure what to do

 

[Roseleigh]

So, back in June my partner with LBD moved to a care home, its close to his family so his wishes were respected. His family see him every day. I am traumatised by the whole thing and on never ending emotional rollercoaster For me its a 3oo mile round trip , in 12 weeks I have visited 9 times, spending about £130 on petrol per month. I mentioned to his family who have POA for finance that I am struggling with the cost of these trips, first time by telephone.....no response..... second time by WhatsApp message.... no response, hoping they would provide me with assistance to maintain my visits … silly me . My support worker suggests writing, my family suggest reducing number of visits and telling them cant afford it.
My choices are stark......feeling very sad...
Not sure what to do

Your love and loyalty is laudable, but your family is right, reduce your visits and if he still understands explain to your partner. Bear in mind he has put easy access for his children before easy access for you and move on with your life. This doesn't mean abandoning him but move your focus onto your own future.