Placing a partner in a care home

[Violet Jane]

Yes, you need to say, preferably in writing, that you have very good reasons for not wanting your husband to come home, either for visits or permanently. I'm not sure what you mean by 'I am also going to say I am only doing it with someone else'. If that means that you will have him home if someone else is with you that will encourage her to keep pushing it. Perhaps you should tell her that you're going to stop visiting for a while or as much as this seems to trigger your husband's demands to come home and encourage her to keep pushing home visits. If you waver she will take advantage. I think that she sees devoted wife = the husband can have whatever he wants regardless of the detriment to you. You might need to stop taking her calls or ending them as soon as she starts talking about visits.

If she keeps on pushing then file a complaint with the home, SS and the nursing regulatory body. Once you have been told to stop pushing something persisting with it is oppressive.

Your life is just as important as your husband's. You need to be able to recover from the trauma you have been through. Your husband is safe and is being cared for. Please don't agree to him coming home.

 

[maisiecat]

Yes, you need to say, preferably in writing, that you have very good reasons for not wanting your husband to come home, either for visits or permanently. I'm not sure what you mean by 'I am also going to say I am only doing it with someone else'. If that means that you will have him home if someone else is with you that will encourage her to keep pushing it. Perhaps you should tell her that you're going to stop visiting for a while or as much as this seems to trigger your husband's demands to come home and encourage her to keep pushing home visits. If you waver she will take advantage. I think that she sees devoted wife = the husband can have whatever he wants regardless of the detriment to you. You might need to stop taking her calls or ending them as soon as she starts talking about visits.

If she keeps on pushing then file a complaint with the home, SS and the nursing regulatory body. Once you have been told to stop pushing something persisting with it is oppressive.

Your life is just as important as your husband's. You need to be able to recover from the trauma you have been through. Your husband is safe and is being cared for. Please don't agree to him coming home.

Hi @Violet Jane , my daughter has spoken to her brother and he's going to fill in the reasoning as to why he can't come home. Its so sad because my husband and I were very happy. The parkinson's medication caused the hypersexuality and it was managed but my husband piggybacked a very rapid vascular dementia on top of his Parkinson's dementia so his cognition was just blown.
I have been to see my husband today and he has a cold so his mobility has shut off all together so the issue will be shelved anyway.
I start counselling next week and my daughter says the first thing I must work on is saying no.
Pete will never becoming home as a Psychiatric team said I mustn't be on my own with him as he has episodes when he doesn't know me and attacks. SS wouldn't think of wearing the cost of a live in carer,night carer and care teams so there is no danger of that.
I will certainly follow your advice if she doesn't take my son's back off warning. The sad thing is Pete knows really, he said to me today you wouldn't be able to manage me now just from his almost total lack of mobility. I wish she would help him accept his reality

 

[Violet Jane]

This nurse needs to be put firmly in her place. The experts (the psychiatric team) know your husband's history and say that you're not safe with him on your own. That concludes the matter.

For what it's worth, I don't think that you will find a live-in or overnight carer when there is a risk of violence (which would have to be disclosed).

 

[GKB]

Many of you are talking about bringing your person home and how to achieve that. I have the opposite problem,my husband is pressing to come home and is very much being supported by the Nurse manager. She is thinking of small visits. I don't know what to do about it. My husband sexually assaulted me for years,he used coercive control and gaslighting techniques to make all the bad things my fault. I know he couldn't help it his Parkinsons and their drugs completely change personality and on top of this he has many types of dementia.
I can't really cope with the thought of this and I think he will be impossible to get to go back. As so many times in our life it feels like my life is once again to be sacrificed to his.

I would never consider bringing my husband home if he did as yours did. My husband remains kind and loving….makes me feel very loved. It is VERY different situation. Please don’t hurt yourself. Please explain everything to the Nurse manager….can’t imagine she won’t support your desire to not have him home. Good luck to you.

 

[sunshine chrissy]

Many of you are talking about bringing your person home and how to achieve that. I have the opposite problem,my husband is pressing to come home and is very much being supported by the Nurse manager. She is thinking of small visits. I don't know what to do about it. My husband sexually assaulted me for years,he used coercive control and gaslighting techniques to make all the bad things my fault. I know he couldn't help it his Parkinsons and their drugs completely change personality and on top of this he has many types of dementia.
I can't really cope with the thought of this and I think he will be impossible to get to go back. As so many times in our life it feels like my life is once again to be sacrificed to his.

Oh maisiecat please don't bring him back,you've been going through far more than I was,he's been in care now for almost 11 weeks and at last I'm feeling as if I can be myself again after 3 years of hell because of this evil disease,FTD,he was a gentle kind person but even so I was near to a breakdown with his behaviour,I did all I could to care for him and keep him at home but it was taken out of my hands when social services did a care assessment,it's the best thing that could have happened though I was heartbroken at the time(16th October).Wishing you well with whatever you decide but please think of yourself,the advice I ignored for a long time❤️

 

[maisiecat]

Hi @ShivyDevon ,@Grannie G ,@Violet Jane ,@GKB, @sunshine chrissy ,
Thank you all for your kind replies and for making me brave. I didn't write or ask my children to deal with it I went to see the Nurse Manager myself and explained our situation. I explained how her telling Pete he could come home if I agreed and then I told her of his behaviours. I explained our tragedy was that we still loved each other so much but drugs and disease meant we couldn't be together. I explained he could have a lunch at home with our son present but I didn't want it suggested again.
She was very accepting of my decision and agreed that there is no prospect of him ever coming home so perhaps it was giving false hope.
Unexpectedly my son came to see his Dad and bought me home. I told him what I had said and laughed I had had to be brave and he said very seriously " you have been brave for years, Mum" which was nice.
Thank you for supporting me x

 

[Grannie G]

Well done @maisiecat I bet you felt 10 feet tall managing to deal with it without help.

Such a lovely comment from your son. He`s obviously very sensitive to your struggles

 

[ShivyDevon]

Hi @ShivyDevon ,@Grannie G ,@Violet Jane ,@GKB, @sunshine chrissy ,
Thank you all for your kind replies and for making me brave. I didn't write or ask my children to deal with it I went to see the Nurse Manager myself and explained our situation. I explained how her telling Pete he could come home if I agreed and then I told her of his behaviours. I explained our tragedy was that we still loved each other so much but drugs and disease meant we couldn't be together. I explained he could have a lunch at home with our son present but I didn't want it suggested again.
She was very accepting of my decision and agreed that there is no prospect of him ever coming home so perhaps it was giving false hope.
Unexpectedly my son came to see his Dad and bought me home. I told him what I had said and laughed I had had to be brave and he said very seriously " you have been brave for years, Mum" which was nice.
Thank you for supporting me x

Well done you @maisiecat very proud of you as that did take courage. I am glad she was receptive and so you can now feel less on edge when you visit and she's there.

Your son sounds like a sweetheart 💕

Hope you see the new year in happily xx

 

[Ellie2018]

Thank you @Grannie G , I am starting counselling in January to help me navigate all the bad stuff. My daughter is going to contact her brother and arrange for him to speak to the Nurse manager to ask she stops encouraging this. I am also going to say I am only doing it with someone with me. The Psychiatric team said I wasn't safe with him.
I don't know I would have survived this without all of you on here

Please don’t let anyone else make you feel you have to do something. It’s great where people want to but we can’t all do it. With this disease it is only going to get worse so it may be that you give in and very soon have to go through it all again, and that isn’t good for anyone. Sending you lots of good thoughts.

 

[GillP]

Please don’t let anyone else make you feel you have to do something. It’s great where people want to but we can’t all do it. With this disease it is only going to get worse so it may be that you give in and very soon have to go through it all again, and that isn’t good for anyone. Sending you lots of good thoughts.

@Ellie2018 , Reading this thread I was beginning to feel guilty and inadequate for placing my late husband James into a care home. So I thank you from deep in my heart for your post.

Deep down, on better days, I know it was the right time and my step daughter and brother in law amongst others had been suggesting it for over a year. I admit that I had not realised how far he was down the dementia path. Initially I wondered if it was being in the home that caused his decline but I know that after a few awful settling in weeks he was ok at first till his health declined quite swiftly.

I did think of bringing him home but it would have been unfair to both of us..

To this day I question myself and I’m sure I’m not alone in that. The trouble is we’re not professionals and really there is no manual for Carers, we have to make difficult decisions, often alone and without counselling and professional support.

Without doubt the hardest decision to make.

 

[sunshine chrissy]

Hi @ShivyDevon ,@Grannie G ,@Violet Jane ,@GKB, @sunshine chrissy ,
Thank you all for your kind replies and for making me brave. I didn't write or ask my children to deal with it I went to see the Nurse Manager myself and explained our situation. I explained how her telling Pete he could come home if I agreed and then I told her of his behaviours. I explained our tragedy was that we still loved each other so much but drugs and disease meant we couldn't be together. I explained he could have a lunch at home with our son present but I didn't want it suggested again.
She was very accepting of my decision and agreed that there is no prospect of him ever coming home so perhaps it was giving false hope.
Unexpectedly my son came to see his Dad and bought me home. I told him what I had said and laughed I had had to be brave and he said very seriously " you have been brave for years, Mum" which was nice.
Thank you for supporting me x

❤️

Well done @maisiecat I bet you felt 10 feet tall managing to deal with it without help.

Such a lovely comment from your son. He`s obviously very sensitive to your struggles

❤️

Hi @ShivyDevon ,@Grannie G ,@Violet Jane ,@GKB, @sunshine chrissy ,
Thank you all for your kind replies and for making me brave. I didn't write or ask my children to deal with it I went to see the Nurse Manager myself and explained our situation. I explained how her telling Pete he could come home if I agreed and then I told her of his behaviours. I explained our tragedy was that we still loved each other so much but drugs and disease meant we couldn't be together. I explained he could have a lunch at home with our son present but I didn't want it suggested again.
She was very accepting of my decision and agreed that there is no prospect of him ever coming home so perhaps it was giving false hope.
Unexpectedly my son came to see his Dad and bought me home. I told him what I had said and laughed I had had to be brave and he said very seriously " you have been brave for years, Mum" which was nice.
Thank you for supporting me x

I was also touched by my son and daughters,I felt so guilty and deflated when my husband went into care 10 weeks ago until they told me I'm the strongest person they know and they were proud of me for coping so long,it meant the world to me,the sadness is still there but I feel it's the right thing for him and me.❤️

 

[Brickie]

My husband went into a nursing home 16 months ago after 8 weeks in hospital. It tore me apart and it was only family who stopped me from bringing him home.

I'm afraid ‘the guilt monster’ is still in residence on my shoulder, but I have made a lot of effort to expand my own life - partly to get out of the house. I visit him several days a week for 2 or 3 hours, leaving at a mealtime. I still feel wrong to go home without him and like many who have posted here still have a good sob whenever I start thinking of the past. It did become easier around six months in when I realised he was happy with his fellow residents and the staff who have been fantastic. So, in my heart, I know he’s happier there, it’s me who has the problem of coming to terms with it. I must say I’ve found all your contributions to this thread to be wonderfully helpful. It’s such a different situation to the home carers who are basically physically and emotionally exhausted. Thank you.

 

[Brickie]

Hello @GKB

I think that everyone who moves their loved one to a care home/memory care home feels guilty. We have been caring for them for so long that we become engulfed in caring and then when they dont understand and just want to come home it makes us feel we have left them down.

The guilt monster whispers in our ear - "look, look, he is so upset, how can you bear it. You gave up too soon, you should have tried harder. If you bring him back now it will be different now". Lies all lies. Dont listen to it. Knock it off your shoulder.

Think about what it was like before he moved there. I'll bet you tried everything and went above and beyond to make it work before you realised that it just couldnt. The simple truth is that dementia progresses to the stage where it takes a whole team of people to look after them, not just one frazzled and sleep deprived person, no matter how loving and willing.

Im sure you know this really. Its just that the knowledge hasnt travelled from your head to your heart. It takes time for the carer to adjust too

Thank you Canary

 

[sunshine chrissy]

My husband went into a nursing home 16 months ago after 8 weeks in hospital. It tore me apart and it was only family who stopped me from bringing him home.

I'm afraid ‘the guilt monster’ is still in residence on my shoulder, but I have made a lot of effort to expand my own life - partly to get out of the house. I visit him several days a week for 2 or 3 hours, leaving at a mealtime. I still feel wrong to go home without him and like many who have posted here still have a good sob whenever I start thinking of the past. It did become easier around six months in when I realised he was happy with his fellow residents and the staff who have been fantastic. So, in my heart, I know he’s happier there, it’s me who has the problem of coming to terms with it. I must say I’ve found all your contributions to this thread to be wonderfully helpful. It’s such a different situation to the home carers who are basically physically and emotionally exhausted. Thank you.

Oh I'm with you there,it's the coming to terms with it! I feel guilty still if I dare to feel happy after a trip to town with my friend.I'm up and down with my moods but I know he's getting far better care than I could give him,warm 24/7,
carers looking after him everyday,he's been in there for 11 weeks now and finally seems content❤️

 

[maggieanne]

What an up and down the last eight weeks have been. After the first couple of weeks hubby seemed to be settling in the care home.I had my positive head on then. Missed him dreadfully. Couldn’t stop crying.
Well I thought this dementia is not going to take me as well. How wrong was I . It’s getting worse.
I had a phone call today saying hubby is constantly pacing. Really distressed. Going in an out of other patients rooms. Gripped a carers hand rather tightly when she helped him to the toilet.
They are looking at his medication and hopefully tweaking it to help.
I’m feeling so low, so worried about him. Although I haven’t got this at home to cope with its distressing in other ways. Does it ever stop?
I thought hopefully if he settles I might get some sort of life back. How wrong was I. I’ve been visiting four times a week to hopefully settle him. Other members of family on other days. Is this helping or making things worse? Wish I knew the answer to this?
The home he’s in is only a few miles away from me. I don’t drive so I’m so worried they will ask him to leave. There are no homes close to me that I would like to see him in.
The staff where he is are lovely. How would he cope with being moved?
Although they haven’t mentioned moving him I feel it’s coming.
This journey is never ending. Do any of you ever get any life back or peace?
Right now I feel like walking away.

 

[canary]

Hello @maggieanne
Im sorry to hear that your husband is less settled now.
I think tweaking his medication is the first thing to look at.
With regard to visiting, unfortunately, if you visit too often the person with dementia continues to rely on family to meet their needs and it becomes much harder for them to transfer this reliance to the carers and can actually prevent them settling.

However, I am concerned that the care home is finding it a problem that he is up pacing at night, going into other peoples rooms and holding a carers hand too tightly. These are normal behaviours for people with dementia and I do wonder whether this home is the right one for him. The home mum was in looked quite shabby and old fashioned, but the care was wonderful. They were not concerned about this sort of behaviour and knew how to manage it.

 

[maisiecat]

What an up and down the last eight weeks have been. After the first couple of weeks hubby seemed to be settling in the care home.I had my positive head on then. Missed him dreadfully. Couldn’t stop crying.
Well I thought this dementia is not going to take me as well. How wrong was I . It’s getting worse.
I had a phone call today saying hubby is constantly pacing. Really distressed. Going in an out of other patients rooms. Gripped a carers hand rather tightly when she helped him to the toilet.
They are looking at his medication and hopefully tweaking it to help.
I’m feeling so low, so worried about him. Although I haven’t got this at home to cope with its distressing in other ways. Does it ever stop?
I thought hopefully if he settles I might get some sort of life back. How wrong was I. I’ve been visiting four times a week to hopefully settle him. Other members of family on other days. Is this helping or making things worse? Wish I knew the answer to this?
The home he’s in is only a few miles away from me. I don’t drive so I’m so worried they will ask him to leave. There are no homes close to me that I would like to see him in.
The staff where he is are lovely. How would he cope with being moved?
Although they haven’t mentioned moving him I feel it’s coming.
This journey is never ending. Do any of you ever get any life back or peace?
Right now I feel like walking away.

Hi@maggieanne: I'm sorry you are still having a difficult time but I agree 100% with @canary that the home should be able to manage these behaviours. My husband is in a Dementia home and he often exhibits far worse behaviour which the carers just glide through. The home has many pacers ,they have small gates to stop wanderers entering other people's rooms and my husband has certainly hit some of the staff. They absolutely love all of their disturbed residents and show such kindness and my husband despite remaining delusional is marvellous to his condition when he was admitted. I still think its early days for you and for us it wasn't something that got a little bit better it just suddenly massively improved.
I'm assuming at 8 weeks the home has already agreed to him as a permanent resident. The one thing I do think is despite their dementia they read their loved ones emotions with absolutely uncanny accuracy so I think if you feel very tearful it may be better not to visit.
I am about to start some counselling so that I can continue to begin to recover. Be kind to yourself, for all of us our journey is a dreadful one.

 

[SharoH]

I am so sorry for your pain. I truly understand. I just put my husband into memory care home and I am gutted…simply gutted. I cry all of the time. I have been visiting every day for the first week, and now the home wants me to start visiting every other day, and then spend a week away week after next so he can get truly settled. He does not understand why he is there or why he can not come with me. He keeps saying, “all I want is to be with you….why can’t I be with you?”. I tell him I have to work and travel so I need to make sure he is very safe and well taken care of. Work was so much a part of our lives he seems to understand that. But, he is so sad…that just kills me. I keep thinking I could do more, but I can’t figure out how. At the moment I just feel as though I don’t want to live without him. I know it takes time…that is what everyone says, but I can’t imagine ever feeling ok about all of this…..maybe just coming to some level of acceptance at some point. Does the pain ever go away? This is truly heart breaking…truly.

I don’t have any answers but just wanted to send you love and hugs. 👩‍❤️‍💋‍👩

 

[northumbrian_k]

Hi @maggieanne

I am sorry to hear about your situation but it is still early days. My wife went into a care home in May 2019. At first, she seemed to settle in very quickly. I didn't visit for the first few days then got into a routine of visiting for about an hour 3-4 times a week. I knew that it was important to break her dependency on me and transfer it to the care home staff. For a long time she continued to ask where K was, but she had asked me (K) that when she was at home. Eventually she stopped asking for me, talked less about going 'home' and seemed to accept that the care home was where she lived.

It wasn't all plain sailing. She was mobile and active, roaming around the small home rattling door handles, going in and out of other residents' rooms, transferring clothes and belongings from one place to the next. For a while she became quite aggressive, to the extent that she was referred to the challenging behaviour team.

I could see how much better she was being cared for than I had been managing at home. I missed her but knew that the hardest decision I had ever made - to admit her to a care home - was also the best for her and for me too. But I was worried that her challenging behaviour would lead to the home giving her notice to quit. By that time I was making friends with the staff. I voiced my fears to a senior member of the team who said that they'd dealt with this sort of thing many times. She reassured me that my wife would not be asked to leave.

Within a few months, as she became used to her new environment and routine, the extra support of the challenging behaviour team was withdrawn. Now, she is settled and content and is very clearly loved by the staff. Her dementia has progressed and - coming up for 83 - she is no longer independently mobile and says very little. I visit twice weekly or sometimes more if there is an event of some kind. She is sometimes sleepy or asleep, sometimes ignores me, and sometimes bright and lively. She seems comfortable in my presence and I still get glimpses of the person she was before dementia.

Looking after her at home I had become reduced to the role of constant and inadequate carer. Now, with the caring done by others, we have time to sit and enjoy each others company.

Writing this tale of my experience has been more emotionally draining than I thought. One can only do what is best to cope with a bad situation. What has worked for us may not be what works for everyone but I hope that my perspective is helpful to anyone who faces similar challenges.

 

[Neveradullday!]

Hi @maggieanne

I am sorry to hear about your situation but it is still early days. My wife went into a care home in May 2019. At first, she seemed to settle in very quickly. I didn't visit for the first few days then got into a routine of visiting for about an hour 3-4 times a week. I knew that it was important to break her dependency on me and transfer it to the care home staff. For a long time she continued to ask where K was, but she had asked me (K) that when she was at home. Eventually she stopped asking for me, talked less about going 'home' and seemed to accept that the care home was where she lived.

It wasn't all plain sailing. She was mobile and active, roaming around the small home rattling door handles, going in and out of other residents' rooms, transferring clothes and belongings from one place to the next. For a while she became quite aggressive, to the extent that she was referred to the challenging behaviour team.

I could see how much better she was being cared for than I had been managing at home. I missed her but knew that the hardest decision I had ever made - to admit her to a care home - was also the best for her and for me too. But I was worried that her challenging behaviour would lead to the home giving her notice to quit. By that time I was making friends with the staff. I voiced my fears to a senior member of the team who said that they'd dealt with this sort of thing many times. She reassured me that my wife would not be asked to leave.

Within a few months, as she became used to her new environment and routine, the extra support of the challenging behaviour team was withdrawn. Now, she is settled and content and is very clearly loved by the staff. Her dementia has progressed and - coming up for 83 - she is no longer independently mobile and says very little. I visit twice weekly or sometimes more if there is an event of some kind. She is sometimes sleepy or asleep, sometimes ignores me, and sometimes bright and lively. She seems comfortable in my presence and I still get glimpses of the person she was before dementia.

Looking after her at home I had become reduced to the role of constant and inadequate carer. Now, with the caring done by others, we have time to sit and enjoy each others company.

Writing this tale of my experience has been more emotionally draining than I thought. One can only do what is best to cope with a bad situation. What has worked for us may not be what works for everyone but I hope that my perspective is helpful to anyone who faces similar challenges.

Thanks for sharing this, @northumbrian_k - very helpful and heartwarming too.