I can't bear to put my husband in a home

hillym

Registered User
Jun 4, 2010
4
0
south east
Considering how to continue caring...

I don't use this site much but your post caught my eye as I'm in a similar situation. My husband has Lewy Body dementia and Parkinsons but I am not coping at the moment. He is not a difficult person so I feel very guilty for not coping. I have carers 5 mornings to get him up, he then sleeps a lots. It is like is neither alive or dead - what a terrible thing to say... But this is all so sad and depressing and frustrating, I want someone to take the whole situation away. Sorry this is not coming out like I wanted and could become a rant so I will stop now. I do understand Marylil52. You're not good to anyone if you crack...

I told him when we first knew that something was badly wrong that I would look after him for as long as I possibly could. We agreed that if things became too difficult for me, we would sort out professional care, most likely in a care home.
It has been coming for a long time, D's Lewy Body Dementia, and 20 months ago I left work to care for him full time. The last few months have been incredibly difficult (though I know others have things so much harder - at least we have a nice house, enough money and good friends, even if his children are a lot less engaged than I would like). D is very weak, though still mobile, but increasingly confused and deluded. Often he doesn't know where he is ("I want to go home" he says heartbreakingly) or who I am. His sisters and our friends say it's time he went into a home - I found a nice one not far away, which could take him; and I know that I'm getting close to cracking. I cry a lot and am horribly short tempered with D, especially when he refuses to let his carer wash and dress him (more and more often now) and insists that I do it. I'm pretty much under house arrest at home except for the few hours twice a week when I can get out to shop etc, with a sitter at home. I think I may be getting a bit bonkers. I'm certainly unreasonably angry a lot of the time.
BUT.....I simply cannot bear the idea of abandoning D in a care home, even one that I can visit every day. If I were advising anyone else, I would tell them all the things our friends tell me. But I can't do it. I said to D today, at the end of my tether after his obstructiveness made me miss a doctor's appointment, that we couldn't go on like this and we'd have to find new accommodation for him. He looked utterly stricken and said "but you promised to look after me". What am I to do???? He was and is my darling. I simply don't think I could live with myself if I left him.
I recently bought a flat very close by (a few doors up) as my pension income. Should I move D there and find a carer more or less full time for him, so that I can be near and help him (maybe do 9 days carer and 5 days me every fortnight?). Would that be less cruel than leaving him in a care home? It's a lovely sunny, warm flat, and near friends and family. I know that, with DLB, D will need nursing care in due course. But might this be a good interim measure?
please, what is others' experience? Does this idea make any sense?
 

Marylil52

Registered User
Mar 26, 2015
39
0
I don't use this site much but your post caught my eye as I'm in a similar situation. My husband has Lewy Body dementia and Parkinsons but I am not coping at the moment. He is not a difficult person so I feel very guilty for not coping. I have carers 5 mornings to get him up, he then sleeps a lots. It is like is neither alive or dead - what a terrible thing to say... But this is all so sad and depressing and frustrating, I want someone to take the whole situation away. Sorry this is not coming out like I wanted and could become a rant so I will stop now. I do understand Marylil52. You're not good to anyone if you crack...

Dear Hillym
Of course you are sad and tired and depressed. It's a horrible situation you're in. And even if he's easy (as my D mostly has been) it's hard hard work, mainly because it's unrelenting, day in, day out. You have nothing to feel guilty about.Can you get someone in even for a few hours once or twice a week? It's the combination of unresponsiveness from a beloved partner and being unable to get away that I think makes this so terribly hard. It's lonely!
I'm in day 5 of D's respite care. I miss him desperately but also know that though I'm determined to get him home again, probably into my flat nearby - if we can sort out care that won't bankrupt us - I simply cannot go back again to the position we were in before he went. We had carers in morning and night, and latterly the marvellous 'waking sitter' for two nights a week. But it was killing me. And it has taken these days without D to wake me up to how bad things were. Very gentle and quiet, mostly, but a sort of living death stuck in the house with a silent and deep!y unhappy man, where the only conversations were about going to the loo or about trying to persuade him that life still had things to offer.
I can't send help - wish I could - but do know that you are not alone. I wish you very well.
 

Marylil52

Registered User
Mar 26, 2015
39
0
I don't use this site much but your post caught my eye as I'm in a similar situation. My husband has Lewy Body dementia and Parkinsons but I am not coping at the moment. He is not a difficult person so I feel very guilty for not coping. I have carers 5 mornings to get him up, he then sleeps a lots. It is like is neither alive or dead - what a terrible thing to say... But this is all so sad and depressing and frustrating, I want someone to take the whole situation away. Sorry this is not coming out like I wanted and could become a rant so I will stop now. I do understand Marylil52. You're not good to anyone if you crack...

PS rant away!
 

Pippi64

Registered User
Sep 5, 2015
3
0
I have been reading posts on the forum for a while but not contributed any comments until now. This thread has been really useful, if heartbreaking, to read. My dad has Alzheimer's, Parkinson's and also has fractures in his lower spine which have rendered him immobile on a couple of occasions and are now impacting on his nerves and making walking difficult. He was at home until a month ago when he went in for respite - first in a care home and then into a nursing home. I know my mum desperately wants him home and I understand why - even more so having read some of these comments - but having him at home has completely exhausted my mum and I'm worried about her health. My sister and I do as much as we can and in the month before dad went into respite we were taking it in turns to go up every morning and/or evening to toilet him as he never needed the loo when the carers were there! We ended up exhausted too - both physically and emotionally. Dad is improving a bit in the nursing home - partly I suspect because he is eating well and being toileted etc by people who know how to do it rather than my sister and me. I know my mum is starting to think that he might be able to come home again but I'm dreading that prospect as I know she will end up exhausted again. She says she can put more care in place so my sister and I don't have to go up so often but I know we won't be able to leave her to it. I feel selfish for thinking dad should stay where he is and I know it's my mum's decision in the end. There doesn't seem to be a good answer in all of this and I seem to spend more and more time in tears these days. I really hope you find a situation that works for you Marylil52 and your comments have really helped me understand what my mum might be thinking although she doesn't let on.
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Pippi, my husband improved greatly when he went into full time care. He gained weight, his mobility was much steadier, his aggression disappeared. And I too started to think that maybe I could manage him at home again. Maybe things hadn't REALLY been that bad. Maybe now it would be different. What my friend calls magical thinking.
William was thriving BECAUSE he was in full time care, there was a fleet of uniformed, male staff around all the time to help him. He loved the "Restaurant " feel of the dining room, the wide, flat corridors for walking , the people to watch and/or talk to. I couldn't provide all that for him. And anyway, it was a temporary reprieve - dementia moves inexorably in one direction. After a few good months, William's condition deteriorated, and he became very frail. In all, he lived 11 months in the nursing home. I doubt he would have lived half that had I kept him at home.
 

Pippi64

Registered User
Sep 5, 2015
3
0
Pippi, my husband improved greatly when he went into full time care. He gained weight, his mobility was much steadier, his aggression disappeared. And I too started to think that maybe I could manage him at home again. Maybe things hadn't REALLY been that bad. Maybe now it would be different. What my friend calls magical thinking.
William was thriving BECAUSE he was in full time care, there was a fleet of uniformed, male staff around all the time to help him. He loved the "Restaurant " feel of the dining room, the wide, flat corridors for walking , the people to watch and/or talk to. I couldn't provide all that for him. And anyway, it was a temporary reprieve - dementia moves inexorably in one direction. After a few good months, William's condition deteriorated, and he became very frail. In all, he lived 11 months in the nursing home. I doubt he would have lived half that had I kept him at home.
Thanks for you helpful comments LadyA - that is what my sister and I feel is happening but I know my mum is seeing any sign of improvement as proof that he should be at home and it's too hard to argue against her for fear of feeling like we're bullying her into a decision. It doesn't help that my dad gets upset when my mum leaves him. Before the dementia he would never cry but he does now and it is so hard to see. We know it's the condition causing it but it must be heartbreaking for mum. I want to show mum this thread but again I don't want her to feel I'm pushing her into leaving dad in the nursing home. Nothing is straight-forward with dementia is it?!
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
No. But look at it this way - are you pushing her, or trying to give her perspective and objectivity in something that she is too close to to see clearly?
William, at first would want to come with me when I left. After a few weeks, that changed to wanting me to stay there with him. And then, he thought I actually was there all the time, busy somewhere about the building. He asked a couple of times "where are you when I can't see you? " and I just said that I'm usually somewhere around, but I have a lot of work to do. I used to leave my coat and bag in the car when I visited, so it looked like I was just coming from another room.
 

Pippi64

Registered User
Sep 5, 2015
3
0
That's really helpful advice LadyA - thank you. It's good to hear how other people have made the transition as easy as possible. I will have a chat with mum tomorrow when we go to visit dad.
 

Marylil52

Registered User
Mar 26, 2015
39
0
Thanks for you helpful comments LadyA - that is what my sister and I feel is happening but I know my mum is seeing any sign of improvement as proof that he should be at home and it's too hard to argue against her for fear of feeling like we're bullying her into a decision. It doesn't help that my dad gets upset when my mum leaves him. Before the dementia he would never cry but he does now and it is so hard to see. We know it's the condition causing it but it must be heartbreaking for mum. I want to show mum this thread but again I don't want her to feel I'm pushing her into leaving dad in the nursing home. Nothing is straight-forward with dementia is it?!


Dear Pippi
It may be something your mother would find helpful. The loneliness of making these decisions is part of what makes it so hard. Oddly enough, though I'd do anything to have D home again, it's because I want him close to me for the last few months before he will have to go into a CH for the rest of his life NOT because I feel guilty about leaving him there. I don't feel guilty, just dreadfully sad and longing for his company. He is still and always my beloved husband.
I do hope you find a solution - it does sound as if your instincts are right, but so very hard for your mother. With many good wishes.
 

Pingu

Registered User
Sep 6, 2013
13
0
...But I'm missing him desperately. He's supposed to be in for two or three weeks respite (and knows I need a rest), but the general view is that if this works and he settles, he should stay there. But I'm back to my original message. I can't bear it. I can't bear not to have him here, to care for him and love him. But I'm exhausted, and he has been aggressive. I know that TP friends will advise that I leave him there. But this is really agonizing. Am I living in cloud cuckoo land, wanting to bring my darling home? If only he could be quiet, we could manage. Might the progression of his DLB make him calmer? If so I could organise care at home.
I'm so sorry to go on and on.
Someone in another thread has written movingly about despair. He's right. This is utter loneliness, complete sorrow.

After a couple more weeks it should become clearer that you've done the right thing, both for you and your husband. From the sound of it, you were close to breaking point (that's common, that's usually when someone is moved into care), and you can't look after him if you have a breakdown.

But... the other way of looking at it... your husband needs a greater level of care than what you were able to provide. It would be cruel to keep him at home for any longer. A care home gives him 24/7 care, that's a lot more than what you could manage.

From the sound of it your marriage slowly stopped being a marriage some time ago and became a carer/patient relationship. Once the stress of looking after him has subsided, and the grief of losing him to a care home has abated, you'll be a happier person again and he'll benefit from your visits. You can talk about old times and chat over photos etc and not have to worry about unpleasant details like washing and toileting etc (that's the job of the care home staff now, that's what you're paying them for).

We moved my Dad into care a year ago, any guilt about moving him disappeared when it became clear that he was a happier person in care than he had become at home; it was only a few weeks before it became clear that he was never moving home again for his sake as well as my Mum's. The day we moved him was horrible though, it felt like he'd died. The week we moved him was the worst week of my life.

In a nutshell, I have no doubt that you moving him out was the right thing for him and you. You're feeling pretty low now, but trust me, it gets better.
 

annais

Registered User
Jan 27, 2013
10
0
Hello Marylil
Your title, 'I can't bear to put my husband in a home' jolted me into replying.
Your post, was a mirror image of myself 8 months ago. A terrible dilemma, a decision that I had to make, as like you I was at breaking point. Yes, I feel terribly guilty into making that decision, and even now cry at times, telling myself how could i be so cruel.
However my husband who has middle stage Alzheimer's is very happy in his care home. Bless him, he doesn't know where he is, and at times thinks he is on board his ship. He has a lovely room, the walls adorn with all the family photographs,and ships he has served on.
Generally i feel so much better, now that I'm not being disturbed at night!
I visit most days, and take him out often for a cream tea, his favourite. These times are quality times.
I do hope Marylil, you are okay. Nobody can make that important decision for you. You will make the right choice
Best Wishes
 

Marylil52

Registered User
Mar 26, 2015
39
0
Dear annais and other TP friends

Your posts are a source of comfort at this time. Very, very many thanks. I have gone away for the weekend and been advised to make no decisions at all about D's long term care until at least next week. Then I'll need to start thinking about money and doing battle with the CCG about funding.
D's children have unexpectedly begun to take his illness seriously and are being brave and very kind. It must be awful for them and I'm full of admiration for their fortitude (as well, if I'm honest, of residual anger at years of denial and indirect suggestions that I've been making an unnecessary fuss....).

Until I began on TP I had no idea of the anguish faced by so many people in our position. It's good to see in the press that more attention is being paid to dementia now. But apart from what feels like lip service (and in some cases of course real action and giving of proper support) to carers' needs - mainly because so much depends on them in these times of budget cuts - it seems to me that this TP is the only place where the day to day sorrow and love and pain of our lives can be addressed. And thank god it exists. This is where the huge private cost, emotional as well as practical, of what is a public scandal - modern society's lack of care for the old and the ill - can be spoken of. Sorry am not expressing myself very clearly.

With very warm wishes.
 

Lorna44

Registered User
Jul 16, 2016
229
0
Surrey
You've expressed yourself very clearly, & I totally agree.
Big hugs to you, have a peaceful week x
 

Kate01

Registered User
Jul 9, 2012
8
0
Part time in the care home?

Hi My husband 62 went into a specialist care home 16 months ago, such a hard time for me and our children. I think I was traumatised for quite a long time after but trying to look normal on the outside! Tears every morning and night thinking about leaving him there. ( We are the ones who need counseling at such a hard time, I thought I was going getting dementia too, forgetting everything and not being in the real world half the time. )
But the strange thing was with all activities going on in the home, I thought it was a shame I had left it so long as he could not join in with the lovely things they did.
I also realised one gentleman took his wife home every night and brought her back each morning, until she was used to the carer's and the routines going on at the home.
This was not something offered to me but some thing he thought would help the transition of his wife. He paid the full fees but felt it was money well spent to slowly adjust her to her new surroundings. She had a afternoon nap so when it came to time of her sleeping over night it was normal. I wish I had thought of this.
Of course everyone is different and it wont suit all.
My children and I bring my husband home on a Sunday every month and he doesnt know the difference from our home to the care home when we take him back and we all have a lovely day together chilling out.
Good luck to you. x
 

Kjn

Registered User
Jul 27, 2013
5,833
0
Marylil52 you've expressed yourself wonderfully.
We are currently approaching the decision stage , dad is in hospital after being cared for by mum at home. Now it's does he go home, have some respite giving mum more time or go for full time care.
It's so hard and I couldn't agree more regarding TP.

Xx K
 

JenTay

Registered User
Jan 23, 2016
9
0
On a practical level, if my hubby who has Lewy Body Dementia goes into a home, would they make me sell the house to pay for it? We have no savings and I'm his carer so only receive carer's allowance. Not sure what I would do myself when it eventually happens.
 

pamann

Registered User
Oct 28, 2013
2,635
0
Kent
Loved ones in a CH

Hello Jen tay,
Welcome to talking point, no you would not have to sell your house, if you have no savings then you would get funding from your local council. I do have to pay top up fees for my husband, it would depend on what your income is when they do the assessment.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi JenTay
don't worry about the house, as pamann writes, it's not taken into account in any financial assessment as long as it continues to be your home as your husband's wife
it may be worth having a chat with CAB as they will know the financial ins and outs and what benefits and support you are entitled to
if your husband has no savings, then the Local Authority (LA) pay a good proportion of care home fees; he will contribute his state pension, his Attendance Allowance and half of any private pension
this will all be worked out through financial assessment by the LA - so may be worth contacting them - the assessment will be only of your husband's finances, so if you have any savings of your own, maybe make sure they are kept separate from your husband's income
just be aware that LAs often won't even consider funding a care home placement until they've tried a home care package of 4 home visits a day, and maybe days at a day care centre, and some respite - so maybe contact your LA's Adult Services for a re-assessment of your husband's care needs, and be brutally honest with them about your situation; they will allow you to cope as long as they believe you can
added - just read on your own thread that you have contacted Social Services and the SW hasn't yet got back to you - I appreciate it's a pain, but keep nagging them, and by e-mail as well a phone if you can (so you have proof of your correspondence) - setting up a care plan can take some time; she who shouts loudest ....
best wishes
 
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JenTay

Registered User
Jan 23, 2016
9
0
Thanks for the information everyone, it's very useful. I will contact adult social services and see what they say.
 

FRED24

Registered User
Oct 30, 2018
10
0
Considering how to continue caring...

I don't use this site much but your post caught my eye as I'm in a similar situation. My husband has Lewy Body dementia and Parkinsons but I am not coping at the moment. He is not a difficult person so I feel very guilty for not coping. I have carers 5 mornings to get him up, he then sleeps a lots. It is like is neither alive or dead - what a terrible thing to say... But this is all so sad and depressing and frustrating, I want someone to take the whole situation away. Sorry this is not coming out like I wanted and could become a rant so I will stop now. I do understand Marylil52. You're not good to anyone if you crack...
I under stand just how you are hurting my husband has mixed dementia 2013 he had to go into hospital4weeks first with Gout in his Ankle every time I went he use to cry to take him home he lost 1stone 4lb as he went off his food he gave every one a hard time I use to get phone call from the hospital to talk to him to calm him down they thought he should go into respite for 4 weeks until he was well enough to come home 3weeks in home care he has got worse still not eating much still cries a lot I really want him home I cry all the time we have been married 57 yrs I feel I am letting him down my daughter says it will kill me I am 77 he is 81 what life have I got really if he's not with me I keep thinking he is pinning that is why he's not eating
 

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