Placing a partner in a care home

[sdmhred]

Everything you’re all feeling resonates so much with me. My husband has been in care nearly 3 months - the care is mostly good but all he still wants is me. I visit most days and have a chat with other residents, most of who still want their partners or daughters to come and take them home. My husband has largely retreated into his room and has his meals in there. No one has time to give him 1to1 time and he seems to be deteriorating rapidly. Against all advice from friends and most family I decided to bring him home with live in care. I’ve had to face up tho to the many potential problems with that arrangement - getting on with a carer living with you, he may be disoriented all over again etc etc. he had a needs assessment for live in care today - he was confused about ‘going home’ and she thought he seemed quite settled! Plan b is to keep him in the home and employ an additional carer to go in most days to give him more 1 to 1 and stimulate him a bit with conversation etc. I feel so guilty and unhappy thinking about him there in the evenings with no one to talk to or give him a cuddle. It’s an impossible situation and all I can do is try different ways of making life a bit more interesting for him. My rational self sees there are too many questions and risks to bringing him home, even with live in support, but my emotional self just wants to give him as much happiness as possible while he can appreciate it.

i like the idea of getting in some extra 121 care @Hippo 😀

You might be able to advertise quite cheaply for a companion to chat with him or do a simple activity with him.

I live next to a care home and there is a chap who I see every day go for a walk with a carer who clearly arrives, takes the chap out and then goes again ….so a family somewhere have organised that so their relative can go for a walk….

 

[GKB]

Well, my husband has been in the care home for 4 weeks and 2 days. I still cry constantly and wonder if I did the right thing. He keeps telling me he just wants to live with me and why can’t he live with me. It is heart breaking. And, I keep wondering why we can’t live together also. I think I gave up too quickly…..did not explore enough other options. The doctor says my husband is “very impaired” and that the home is a good place for him. But, I am not there yet. I really feel for the rest of you going through this. I now get to sleep which is terrific, but other than that, I just miss him. I am going to give it another month. It is truly heart breaking….exhausting in another way than when he was home.

 

[maisiecat]

Well, my husband has been in the care home for 4 weeks and 2 days. I still cry constantly and wonder if I did the right thing. He keeps telling me he just wants to live with me and why can’t he live with me. It is heart breaking. And, I keep wondering why we can’t live together also. I think I gave up too quickly…..did not explore enough other options. The doctor says my husband is “very impaired” and that the home is a good place for him. But, I am not there yet. I really feel for the rest of you going through this. I now get to sleep which is terrific, but other than that, I just miss him. I am going to give it another month. It is truly heart breaking….exhausting in another way than when he was home.

Hi @GKB,
I absolutely understand and feel for your experience. My husband is going into his 4 month in a Nursing Home. He is beginning to settle now and he mixes and participates well with the activities so you are very much in the early days still. He still asks to come home and I just deflect and say when the weather is better you can come for lunch and also offer to book us on a trip with the home.
There isn't an easy way to come to terms or know you are right but I think you have to try and switch off your emotions and look at what the Home offers. My husband fell frequently and they have almost solved that problem. He was aggressive that is also much improved. He remains delusional and that is contained because he is in a safe enviroment.
I think you have to take time to refresh and let him recover because when care needs increase its exhausting and frightening for them and then review. Do you have any family so you can get other viewpoints.
Best wishes

 

[canary]

Hello @GKB

It is very early days for your husband - it takes a good couple of months for people to settle. Unfotunately, he is unable to understand the reality of his situation. In his mind, nothing has changed, he is just the same as he always was and cannot understand the reason why he has had to move.

I keep wondering why we can’t live together also. I think I gave up too quickly…..did not explore enough other options.

This is the guilt monster whispering in your ear. It is lies, all lies. Dont listen to it. Knock it off your shoulder

Think about what it was like before he moved. You saying "I now get to sleep which is terrific" is a big giveaway about what life was like beforehand. Im betting you went over and above to keep him at home until you were on your knees and just couldnt cope anymore. Once someone needs round the clock care it is far, far too much for one person, however loving and willing. What they need is a whole team of people, working in shifts , around the clock.

If you bring him home, you will be back to square one.
Sometimes love on its own is not enough.

 

[sunshine chrissy]

Well, my husband has been in the care home for 4 weeks and 2 days. I still cry constantly and wonder if I did the right thing. He keeps telling me he just wants to live with me and why can’t he live with me. It is heart breaking. And, I keep wondering why we can’t live together also. I think I gave up too quickly…..did not explore enough other options. The doctor says my husband is “very impaired” and that the home is a good place for him. But, I am not there yet. I really feel for the rest of you going through this. I now get to sleep which is terrific, but other than that, I just miss him. I am going to give it another month. It is truly heart breaking….exhausting in another way than when he was home.

I'm in this exact position,he's been in respite for 6 weeks and now it's decided he needs permanent care,I know I couldn't cope anymore and all the family agree it's the right decision but I feel so sad for him,whenever I visit he just keeps saying when am I coming home.I had a cry today when I got home from shopping,all the christmas songs in the stores and seeing couples happy(though it's prob the only time of year you see couples shopping😂)It just got to me,thinking of all the happy family times we've had over the years.I still can't believe how our lives have ended up,he was diagnosed only 18 months ago,it's been so fast to have come to this.I'm fortunate though for him to be in a lovely care home,there's almost as many staff as residents,I didn't choose it,I just wanted somewhere close to home so I could visit regularly so I'm lucky.He's not really settling,his main problem is pacing all day and night but they post videos and photos each day on facebook,he's actually been sat making xmas decs this week so I feel a bit optimistic! And my full nights sleep is helping!

 

[maisiecat]

I'm in this exact position,he's been in respite for 6 weeks and now it's decided he needs permanent care,I know I couldn't cope anymore and all the family agree it's the right decision but I feel so sad for him,whenever I visit he just keeps saying when am I coming home.I had a cry today when I got home from shopping,all the christmas songs in the stores and seeing couples happy(though it's prob the only time of year you see couples shopping😂)It just got to me,thinking of all the happy family times we've had over the years.I still can't believe how our lives have ended up,he was diagnosed only 18 months ago,it's been so fast to have come to this.I'm fortunate though for him to be in a lovely care home,there's almost as many staff as residents,I didn't choose it,I just wanted somewhere close to home so I could visit regularly so I'm lucky.He's not really settling,his main problem is pacing all day and night but they post videos and photos each day on facebook,he's actually been sat making xmas decs this week so I feel a bit optimistic! And my full nights sleep is helping!

Same position for me but I am slightly further on so hope this may help. My husband paced constantly for the first couple of months but now he is much more settled. He joins in with the activities and we look at the programme to choose particular things he likes. I don't say he's never coming home I tell him we must work on getting him back to full health and suggest a lunch at home after Christmas.
I hope your husband settles soon as it is so distressing to watch it all. There was no choice for me as he was having multiple psychotic episodes so he wasn't deemed safe to be home.
I also absolutely understand that feeling of being alone.It hit me like a truck in the summer when I was coming back from the Nursing Home and all the couples were together.
I am afraid there are 2 victims with dementia.

 

[sunshine chrissy]

Same position for me but I am slightly further on so hope this may help. My husband paced constantly for the first couple of months but now he is much more settled. He joins in with the activities and we look at the programme to choose particular things he likes. I don't say he's never coming home I tell him we must work on getting him back to full health and suggest a lunch at home after Christmas.
I hope your husband settles soon as it is so distressing to watch it all. There was no choice for me as he was having multiple psychotic episodes so he wasn't deemed safe to be home.
I also absolutely understand that feeling of being alone.It hit me like a truck in the summer when I was coming back from the Nursing Home and all the couples were together.
I am afraid there are 2 victims with dementia.

❤️

 

[sunshine chrissy]

❤️

You are so right maisiecat,2 victims for sure.Whenever he asks to come home I say soon,they just need to make sure you're well enough first,I escape from a visit saying I'm just going the shop,see you in a bit.I've asked about his reaction when I don't come back,there is no reaction,he resumes his pacing again which in a way is a relief,I'm at home worrying about him feeling abandoned and he's got no idea I'm feeling like this or that he's been abandoned,oh what a paradox universe I now live in😩

 

[Kas 0103]

You’ve had some good advice. A friend whose husband has Parkinson’s said to me ‘whatever you do you’ll feel guilty.’
My wife has PCA and we’ve had 10 years together with increasing difficulty. I get respite breaks and I’m reasonably supported.
My plan now is to have a weeks respite with S in a care home in January, and I’ve been advised to let the professionals get on with it as I fear visits could be disruptive.
Best wishes, caring is demanding and ever changing. X

You’ve had some good advice. A friend whose husband has Parkinson’s said to me ‘whatever you do you’ll feel guilty.’
My wife has PCA and we’ve had 10 years together with increasing difficulty. I get respite breaks and I’m reasonably supported.
My plan now is to have a weeks respite with S in a care home in January, and I’ve been advised to let the professionals get on with it as I fear visits could be disruptive.
Best wishes, caring is demanding and ever changing. X

It’s hard to think about a couple of weeks of respite care, let alone permanent care, but like you I am going to try to get some respite in January if I can. Guilt seems to be part of the territory whatever you do or don’t do! You’re right about caring being challenging - and how…You love someone and can never imagine not looking after them, yet the relentless slog of physical care takes its toll, especially when, in the case of my husband, he has lost his ability to empathise. Our little cat died two weeks ago and I was beside myself as he had been knocked down by a car, dying outside our house. He didn’t ask why I was crying, didn’t react when I told him, hasn’t noticed our boy’s not there, yet he’s always been such a cat lover and in the past would have been the first to take charge of any situation. It’s not his fault at all, I know it’s due to his Lewy Body dementia, but it’s hard to feel you’re part of a couple yet are on your own. Sorry, that sounds really ‘poor little me’, put it down to having woken up at silly o’clock and being unable to go back to sleep because I started thinking…

 

[Kas 0103]

Thank you Mike, although I am only 3 weeks in to my husband being in the care home I can relate to what you are saying.
When I visit he asks where are we going? My last visit I took him out for a short walk. He’s so used to going for a walk. When he was at home he would say where are we going and a short walk calmed him.It could be a few times a day.
Visiting is hard. Before I go my stomach is in knots wondering how he will be. Then after awhile being there I can’t wait to leave. I find it so distressing. I get home and then I feel guilty for wanting to leave.
I’m trying to rebuild my life. I know he would want me too. There’s so much I want to do. Just spending quality time with friends and family mean so much.
Life is certainly for living. Dementia has certainly made me realise this. We have to make the most of the life we have. Dementia has stolen so much of both our lives.
I’m not quite ready yet but I’m determined to rebuild my life and laugh again. Hope you can do the same at some point,as long as our loved ones are happy and cared for that is the road we must take for them

Love your positive attitude! I’m sure you’re right. Good luck! x

 

[The Saint]

I've been reading through this post taking note of everyone's comments as I too am in this situation. My OH has been in a care home for nearly two months for me to organise a house move. Not the best time in our lives I know but it became essential. He settled in the home incredibly well and joins in the activities and responds to the carers when when they speak to him although he has little speech. The move was delayed for a month and I am now moving at the end of this week. I will have to extend his stay again to get some organisation in the new house but I am thinking of bringing him back to live at the new house.

I have an argument going on inside myself saying he deserves a nice life with home comforts and freedom to walk when he want to. The other side reminds me of how it was out looking for him when he got lost when he was out walking alone and the continual demand of looking after him. At the home the majority of residents are older than my OH, he is 77 and most of the other residents are in their 80s and 90s, and their dementia is further progressed and sleep a good part of the day.

If Christmas had not been around the corner I think I would have left him another month to see how things pan out but with the Christmas period it seems to put added pressure to make a decision. One I'm struggling with and it seems no one to discuss it with so I'm grateful for this forum to read how others are dealing with the same problem.

 

[maisiecat]

I've been reading through this post taking note of everyone's comments as I too am in this situation. My OH has been in a care home for nearly two months for me to organise a house move. Not the best time in our lives I know but it became essential. He settled in the home incredibly well and joins in the activities and responds to the carers when when they speak to him although he has little speech. The move was delayed for a month and I am now moving at the end of this week. I will have to extend his stay again to get some organisation in the new house but I am thinking of bringing him back to live at the new house.

I have an argument going on inside myself saying he deserves a nice life with home comforts and freedom to walk when he want to. The other side reminds me of how it was out looking for him when he got lost when he was out walking alone and the continual demand of looking after him. At the home the majority of residents are older than my OH, he is 77 and most of the other residents are in their 80s and 90s, and their dementia is further progressed and sleep a good part of the day.

If Christmas had not been around the corner I think I would have left him another month to see how things pan out but with the Christmas period it seems to put added pressure to make a decision. One I'm struggling with and it seems no one to discuss it with so I'm grateful for this forum to read how others are dealing with the same problem.

 

[maisiecat]

This is just my personal opinion but I wouldn't bring someone out of a care home at Christmas. Its always a busy time and I think they have problems with being over stimulated.
Good luck with your move

 

[maisiecat]

You are so right maisiecat,2 victims for sure.Whenever he asks to come home I say soon,they just need to make sure you're well enough first,I escape from a visit saying I'm just going the shop,see you in a bit.I've asked about his reaction when I don't come back,there is no reaction,he resumes his pacing again which in a way is a relief,I'm at home worrying about him feeling abandoned and he's got no idea I'm feeling like this or that he's been abandoned,oh what a paradox universe I now live in😩

Hi @sunshine chrissy, don't feel lonely in your weird universe cos I am there with you. I feel like I am leading 2 lives in tandem with each other. I also use the when you are well enough and because of his aggression he is under restrictions. I am not sure they think about us when we are not there. OH used to get the home to phone me a lot but that has stopped. The trouble is for us is there is never going to be a time when we are sure we are doing the right thing. My aim is purely focused around not doing the wrong thing and the last few months when my OH was at home before his hospital admission we were in absolute crisis. I don't want to be back there

 

[Sarasa]

Hi @The Saint I too would leave your husband in the care home over Christmas. Even if you were planning a quiet one in your new home the fact places like shops will be busy or on the day itself closed might confuse him. Also a new home will be confusing enough. Care homes usually have a lot on. My mums first Christmas in care I went to a party and a panto. I couldn’t be there on the day itself but I know I could have had Christmas dinner there if I wanted.
Would it be possible to keep your husband’s place in the home for a week it two if you do bring him home in case it doesn’t work out and it turns out being in care is the best for him?

 

[DollyM1]

I've been reading through this post taking note of everyone's comments as I too am in this situation. My OH has been in a care home for nearly two months for me to organise a house move. Not the best time in our lives I know but it became essential. He settled in the home incredibly well and joins in the activities and responds to the carers when when they speak to him although he has little speech. The move was delayed for a month and I am now moving at the end of this week. I will have to extend his stay again to get some organisation in the new house but I am thinking of bringing him back to live at the new house.

I have an argument going on inside myself saying he deserves a nice life with home comforts and freedom to walk when he want to. The other side reminds me of how it was out looking for him when he got lost when he was out walking alone and the continual demand of looking after him. At the home the majority of residents are older than my OH, he is 77 and most of the other residents are in their 80s and 90s, and their dementia is further progressed and sleep a good part of the day.

If Christmas had not been around the corner I think I would have left him another month to see how things pan out but with the Christmas period it seems to put added pressure to make a decision. One I'm struggling with and it seems no one to discuss it with so I'm grateful for this forum to read how others are dealing with the same problem.

Please remember the difficulties you had before OH went for respite before you bring him home to a new house. His brain no longer thinks the same way as yours, so when you want him to have a nice life you are imagining as if he has clarity of thought the same as you. His nice life now may be something different to you x

 

[liz4]

I’m finding this such a helpful thread - thank you for all the heartfelt posts. I’m in the same place of sadness and relief - husband 6weeks into care now, and it’s so very hard to process it all. I’m thankful that he’s settled well but I can see he doesn’t have the same 1:1 input that I had given my life over to provide.
I guess we have to give it time to come to terms with it all - the fact is that we’ve all had a tremendously tough and exhausting period leading up to the decision to go for residential care, and we can’t just shed the emotional load because in many ways it’s still ongoing.
By chance, I was told last week about a talk on grief and loss at a carers’event, and found it very helpful. The counsellor was from the local hospice, and I’ve arranged to get some counselling from them (which they can provide even if the person doesn’t have cancer and is still alive). I’m hoping this will help me untangle some of the emotional impact of the last 10 years, and come to a more accepting place, and function more fully again.

 

[sunshine chrissy]

Hi @sunshine chrissy, don't feel lonely in your weird universe cos I am there with you. I feel like I am leading 2 lives in tandem with each other. I also use the when you are well enough and because of his aggression he is under restrictions. I am not sure they think about us when we are not there. OH used to get the home to phone me a lot but that has stopped. The trouble is for us is there is never going to be a time when we are sure we are doing the right thing. My aim is purely focused around not doing the wrong thing and the last few months when my OH was at home before his hospital admission we were in absolute crisis. I don't want to be back there

👍

 

[sunshine chrissy]

👍

Oh me neither,I know there's no going back,I have to learn to accept it now.❤️

 

[sunshine chrissy]

I’m finding this such a helpful thread - thank you for all the heartfelt posts. I’m in the same place of sadness and relief - husband 6weeks into care now, and it’s so very hard to process it all. I’m thankful that he’s settled well but I can see he doesn’t have the same 1:1 input that I had given my life over to provide.
I guess we have to give it time to come to terms with it all - the fact is that we’ve all had a tremendously tough and exhausting period leading up to the decision to go for residential care, and we can’t just shed the emotional load because in many ways it’s still ongoing.
By chance, I was told last week about a talk on grief and loss at a carers’event, and found it very helpful. The counsellor was from the local hospice, and I’ve arranged to get some counselling from them (which they can provide even if the person doesn’t have cancer and is still alive). I’m hoping this will help me untangle some of the emotional impact of the last 10 years, and come to a more accepting place, and function more fully again.

❤️