Placing a partner in a care home

Gayster

Registered User
Dec 10, 2023
10
0
Thank you for the suggestion. That works as I discovered last week. I will take my lunch with me as he wanted to know where mine was. I was just wondering if there is any research done on this matter altho everything I have read says each PWD is different. No easy solutions for anything to do with dementia I have discovered . Should have known as we cared for a severely disabled daughter for 41 years,,,,, you would think I would have learned eh??
 

sunshine chrissy

Registered User
Apr 1, 2022
476
0
Cheshire
Hi Slipstitch,yes we're at 10 weeks now and at last he's stopped asking to go home,he's much more relaxed,the constant pacing has stopped,it's taken a while but he's beginning to think this is his home now.It's still all so sad but I'm starting to accept it,there's no going back to our old life now and all I can hope for is for him to feel content there.He doesn't get involved or socialise with anyone which is surprising as before he went in he'd chat to random strangers in the street as if they were old friends! I hope you and everyone else going through this can make the best of having a good Christmas,we have to carry on anyway don't we?❤️
 

maisiecat

Registered User
Oct 12, 2023
327
0
Hold your nerve@sunshinechrissy as I am a few weeks on from you and my husband has suddenly started calling a couple of the residents his friends whereas he was saying they were barmy! He also joins in with lots of the activities now. He doesn't call home home ,he calls it my place but he asks much less often to go there.
I'm starting counselling inJanuary as the trauma and grief seem overwhelming. I think for so many of us this is the truth about care home placements and it is about meeting their best interests but it is so hard
 

GKB

Registered User
Jun 4, 2023
28
0
London
Has anyone in this forum ever brought their partner home from the care home? Has anyone just said how very much they miss their partner…..not feeling guilty, but just missing them….to figure out care at home so they can bring their partner home? I have been reading Loving Someone with Dementia by Pauline Boss, PhD. She is giving me a new perspective on all of this. My number one priority is to keep my husband safe and well cared for, but he is miserable in the care home and so I am I. And, the care home is terrific!! I could not say more about this care home.
 

Rishile

Registered User
Dec 28, 2022
360
0
I didn't exactly bring my husband home from the Care Home he was in but he was served notice (they said they couldn't handle him) and he was sectioned and went to a special Dementia Unit. Upon discharge, the decision was to either send him to another Care Home or send him home into my care. I fought like a good'un and got him home. I have never been so happy and neither has he.

I learnt a lot while he was a way - about dementia and about myself. I learnt a lot from the nursing staff and the carers. Social Services didn't want him to come home but the hospital backed me because they knew it was the right thing for him.

I missed him terribly and he was extremely distressed and getting worse every day. The Care Home was totally wrong for him and I provided all of his personal care because they didn't provide it to my standards.

We are both enjoying life again although there have been many challenges in the four months he has been home but I feel I have learnt to deal with them.

One thing I have learnt - today is NOT the best it will ever be. There is always room for improvement. My husband has improved bit by bit every day. He is stronger, his concentration has improved, his memory improves (slowly) and the agitation and aggression seen in the Care Home has now disappeared. I believe there is always hope. Things are getting better all the time.

I couldn't tolerate the attitude that once he was in there, they just left him to die. That was how it felt for both of us. There is no stimulation (apart from painting and colouring), the food was not healthy, the carers were always too busy filling in forms to provide even basic care.

Of course, this is just my opinion and experience but you have asked.
 

maggieanne

Registered User
Oct 14, 2023
33
0
69
My husband has been in a Dementia Specific Lodge for 7 months. I did not go and see him for the first 3 weeks to give him a chance to settle but since then go every second day. The staff told methis week he will not eat lunch if I go in the morning but wanders and keeps asking for me. If I go in the afternoon the dreaded sun-downing seems to ruin that visit for me. Is there a "right " frequency for visiting? I want, and need, to see him and as I am his only visitor would appreciate suggestions from others who walk this path
I usually go about an hour before lunchtime. Sometimes I stay and have lunch with him and stay for another hour, or go while he’s having his lunch.
Like your husband mine is the same. Sundowning late afternoon. It’s distressing being there then. I go about 4 times a week.
His dementia has advanced a huge amount in the 7 weeks he’s been there. He doesn’t ask where I am when I leave. I always make sure we have a big hug when I arrive but leave without saying goodbye.
I usually feel better after seeing him but then the days I don’t go i worry and miss him .
It’s still early days for so im still working things out.
Could you stay and have lunch with him and maybe leave before the sundowning starts, at least you will know he’s eating.
 

DawnR

Registered User
Sep 14, 2022
98
0
Northumberland
@GKB I brought my husband of 42 years home from a care home in September after 4 weeks.
I thought it was for the best as we had some night time aggression and he was starting to have incontinence issues.
I found a lovely care home, unfortunately I had to pay £75pw top up. I was going to have to increase my hours at work to cover the cost. I was prepared to do this but I just couldn’t give up on having him at home. We were both miserable and I was sleeping less than before he went into care.
The other residents were all older ( my OH is 65) and less mobile. I was visiting every day to take him out for a walk with the dogs as well as working full time.
I have some days where I think what the heck have I done but don’t regret my decision. I know he may have to go back into care at some point but I’m making the most of the time we have together. We enjoy going into town on the bus and having a coffee.
I’m getting more support, he goes to a day centre 3 days a week now when I can work without distraction. He also takes Mirtazipine and Melatonin which is helping a lot with the issues we had at night. It hasn’t solved the problem completely, 2 nights ago he had a bad night and he was screaming obscenities and spitting at me. This is the second time this has happened, the first time was a while ago though. I think he may have been over tired. As long as it’s not frequent I’m going to let it go.
I have got single beds to help make the washing easier, and we have got a good routine going.
It’s not an easy decision though, whatever you decide you will think have I made the right choice. It depends how much you’re prepared to put up with to have him home. I totally understand why you’re considering it though.
Wishing you well
Dawn x
 

sunshine chrissy

Registered User
Apr 1, 2022
476
0
Cheshire
Hold your nerve@sunshinechrissy as I am a few weeks on from you and my husband has suddenly started calling a couple of the residents his friends whereas he was saying they were barmy! He also joins in with lots of the activities now. He doesn't call home home ,he calls it my place but he asks much less often to go there.
I'm starting counselling inJanuary as the trauma and grief seem overwhelming. I think for so many of us this is the truth about care home placements and it is about meeting their best interests but it is so hard
Oh it's certainly hard!! I'm sat here now thinking this is the 1st Christmas Eve I've ever had on my own in my entire life,I'm 70 in March,it's so sad but thinking back to last year,it was awful,I can't believe how I got through it and worse was yet to come so I've come to terms now with everything even though I've been in tears most of the day and my Eddie is oblivious to it all! He seems content there now,it's taken 10 weeks and we're all hoping it lasts🤞
 

GKB

Registered User
Jun 4, 2023
28
0
London
I didn't exactly bring my husband home from the Care Home he was in but he was served notice (they said they couldn't handle him) and he was sectioned and went to a special Dementia Unit. Upon discharge, the decision was to either send him to another Care Home or send him home into my care. I fought like a good'un and got him home. I have never been so happy and neither has he.

I learnt a lot while he was a way - about dementia and about myself. I learnt a lot from the nursing staff and the carers. Social Services didn't want him to come home but the hospital backed me because they knew it was the right thing for him.

I missed him terribly and he was extremely distressed and getting worse every day. The Care Home was totally wrong for him and I provided all of his personal care because they didn't provide it to my standards.

We are both enjoying life again although there have been many challenges in the four months he has been home but I feel I have learnt to deal with them.

One thing I have learnt - today is NOT the best it will ever be. There is always room for improvement. My husband has improved bit by bit every day. He is stronger, his concentration has improved, his memory improves (slowly) and the agitation and aggression seen in the Care Home has now disappeared. I believe there is always hope. Things are getting better all the time.

I couldn't tolerate the attitude that once he was in there, they just left him to die. That was how it felt for both of us. There is no stimulation (apart from painting and colouring), the food was not healthy, the carers were always too busy filling in forms to provide even basic care.

Of course, this is just my opinion and experience but you have asked.
Thanks so very much for your words. I am going to bring him home. It just feels right….we are both miserable now. I’ll figure out something at home….will have to! But, at least we will be together. Thank you.
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
Thanks so very much for your words. I am going to bring him home. It just feels right….we are both miserable now. I’ll figure out something at home….will have to! But, at least we will be together. Thank you.
The care home has to make sure that he is discharged to a safe environment, so you will have to work with them and SS to make sure that his needs are being met at home. Think about the problems you had before he moved into the care home and work out how you will mitigate them. Also, find out what new symptoms/needs he has.

Please make sure it is doable and not just the guilt monster whispering lies in your ear - look, look, he is so miserable, how can you abandon him, you gave up too soon, you should have tried harder, it will be different this time round.

You do not want to get him home, only to discover that you are back to square one and cannot cope
 

Slipstitch

Registered User
Jun 17, 2022
43
0
.... I've come to terms now with everything even though I've been in tears most of the day and my Eddie is oblivious to it all! ....
Still on our parallel paths, Sunshine Chrissie - so sorry it's been a tearful time for you. I went for Christmas lunch with my husband in the home. What a dismal experience that was (for me that is - I think he was oblivious & thus ok). Having begun to feel much more reconciled to it all after 10 weeks, I was back to crying in the car on the way home. I have no family so just have to get on with it. I'm glad it's done and won't come round again for 12 months.
 

sunshine chrissy

Registered User
Apr 1, 2022
476
0
Cheshire
The care home has to make sure that he is discharged to a safe environment, so you will have to work with them and SS to make sure that his needs are being met at home. Think about the problems you had before he moved into the care home and work out how you will mitigate them. Also, find out what new symptoms/needs he has.

Please make sure it is doable and not just the guilt monster whispering lies in your ear - look, look, he is so miserable, how can you abandon him, you gave up too soon, you should have tried harder, it will be different this time round.

You do not want to get him home, only to discover that you are back to square one and cannot cope
Wise words canary! I miss him so much but it's the old version when I think of him,I don't want the person he's become to come back home,that would be a nightmare for him and me.I see the care he's getting 24/7 in there and know the right decision was made and let's not forget this is a progressive disease,there's no stopping it so what would be the point of bringing him home just to start the process all over again?
 

GKB

Registered User
Jun 4, 2023
28
0
London
The care home has to make sure that he is discharged to a safe environment, so you will have to work with them and SS to make sure that his needs are being met at home. Think about the problems you had before he moved into the care home and work out how you will mitigate them. Also, find out what new symptoms/needs he has.

Please make sure it is doable and not just the guilt monster whispering lies in your ear - look, look, he is so miserable, how can you abandon him, you gave up too soon, you should have tried harder, it will be different this time round.

You do not want to get him home, only to discover that you are back to square one and cannot cope
Thank you…I guarantee you it is not guilt. I don’t feel guilty. I just miss him and he misses me. I have learned a lot these past 9 weeks…..about him, his illness, and me. I am tired of listening to all of the “experts” and what they think I should and should not be doing. I am going to listen to my heart. I promised myself I will give it 12 weeks so will do that. Thank you
 

GKB

Registered User
Jun 4, 2023
28
0
London
@GKB I brought my husband of 42 years home from a care home in September after 4 weeks.
I thought it was for the best as we had some night time aggression and he was starting to have incontinence issues.
I found a lovely care home, unfortunately I had to pay £75pw top up. I was going to have to increase my hours at work to cover the cost. I was prepared to do this but I just couldn’t give up on having him at home. We were both miserable and I was sleeping less than before he went into care.
The other residents were all older ( my OH is 65) and less mobile. I was visiting every day to take him out for a walk with the dogs as well as working full time.
I have some days where I think what the heck have I done but don’t regret my decision. I know he may have to go back into care at some point but I’m making the most of the time we have together. We enjoy going into town on the bus and having a coffee.
I’m getting more support, he goes to a day centre 3 days a week now when I can work without distraction. He also takes Mirtazipine and Melatonin which is helping a lot with the issues we had at night. It hasn’t solved the problem completely, 2 nights ago he had a bad night and he was screaming obscenities and spitting at me. This is the second time this has happened, the first time was a while ago though. I think he may have been over tired. As long as it’s not frequent I’m going to let it go.
I have got single beds to help make the washing easier, and we have got a good routine going.
It’s not an easy decision though, whatever you decide you will think have I made the right choice. It depends how much you’re prepared to put up with to have him home. I totally understand why you’re considering it though.
Wishing you well
Dawn x
Thank you….I have learned so much. I think I can apply it and make it work out at home. Am sure going to try. Thanks again and good luck to you.
 

sunshine chrissy

Registered User
Apr 1, 2022
476
0
Cheshire
Still on our parallel paths, Sunshine Chrissie - so sorry it's been a tearful time for you. I went for Christmas lunch with my husband in the home. What a dismal experience that was (for me that is - I think he was oblivious & thus ok). Having begun to feel much more reconciled to it all after 10 weeks, I was back to crying in the car on the way home. I have no family so just have to get on with it. I'm glad it's done and won't come round again for 12 months.
❤️
 

maisiecat

Registered User
Oct 12, 2023
327
0
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.
 

ShivyDevon

Registered User
Oct 11, 2022
63
0
@maisiecat you do not need to put yourself in a position of fear and vulnerability to please a nurse. This is something they think may help him and, understandably, I assume they do not know your reasoning for resisting this so is pushing because they thinks it will help him not realising the impact on you.

You may have to take them aside and tell her quite assertively, or put it in writing if you would find it easier, that him visiting the family home would not be good for you for very personal reasons and to stop asking about it.

You have to advocate for yourself in this scenario which I understand must be quite difficult if not traumatic for you.

Take care
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,732
0
Kent
Hello @maisiecat

Just say no. You do not have to explain yourself to anyone You are at liberty to refuse.

Even if you did not have a traumatic relationship with your husband you would still be free to say no.
 

maisiecat

Registered User
Oct 12, 2023
327
0
@maisiecat you do not need to put yourself in a position of fear and vulnerability to please a nurse. This is something they think may help him and, understandably, I assume they do not know your reasoning for resisting this so is pushing because they thinks it will help him not realising the impact on you.

You may have to take them aside and tell her quite assertively, or put it in writing if you would find it easier, that him visiting the family home would not be good for you for very personal reasons and to stop asking about it.

You have to advocate for yourself in this scenario which I understand must be quite difficult if not traumatic for you.

Take care
Thank you@ShivyDevon I have spoken to my daughter about it and she says write the Nurse manager a letter. She also suggested that her brother is with me for the duration and its a one off. As she rightly says he won't enjoy it because it won't be as he remembers.
I believe the Nurse manger is his reperesentative on th DOL so I suspect she feels he must be heard.
He wasn't a bad man my husband just utterly destroyed by disease and drugs
 

maisiecat

Registered User
Oct 12, 2023
327
0
Hello @maisiecat

Just say no. You do not have to explain yourself to anyone You are at liberty to refuse.

Even if you did not have a traumatic relationship with your husband you would still be free to say no.
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