Husband 64 not settling in care home

[Flynnie]

7 weeks ago I made the hardest decision to move my husband into a care home. He is 64 and has PCA dementia and I’m 48 and still working. The last year has seen a real progression, he’s now registered severely sighted, has incontinence issues and at nighttime it got to the point where he was getting up most nights between 10-25 times. I had to be signed off sick from work with stress and lack of sleep and I just can’t carry on caring for him at home.

He initially seemed to settle well into the home, not asking if he was coming home or saying he didn’t like it. But the past 2 weeks he has been displaying anger and frustration towards some of the care home staff and my visits have been hard. He doesn’t want to be there and today cried and said he didn’t want to go back to the home (even though we were already in his room at the time). When I leave I feel terrible and have to sneak out so it doesn’t upset him.

I know I can’t have hI’m home, I’ve just gone back to work and his care assessment and all health care professionals say he needs 24 hour care which I can’t provide and he didn’t have capacity to make his own descision when they did the mental capacity assessment. When he was diagnosed we did discuss this stage and he never wanted me to do caring when it got to this stage and he definitely didn’t want me making myself ill trying to carry on.

I think the main issue is boredom as he is the youngest resident and the activiites they do aren’t age appropriate. It’s very hard to find things for him to do due to his vision problems. I’ve contacted the home to discuss this as he needs activities for his age and he needs to get out more, walking etc

I dread visiting and I’m finding it all overwhelming. Would be good to hear from others in similar situations, I’m hoping things may settle again as I just hate thinking about him being unhappy.

 

[Flynnie]

hHi just wondered how old was your husband when he was diagnosed ,my wife was daignosed 18 months ago with PCA although we had been attending Kings college London for nearly 5years before that and couldn't diagnose it

 

[Bushns01]

hHi just wondered how old was your husband when he was diagnosed ,my wife was daignosed 18 months ago with PCA although we had been attending Kings college London for nearly 5years before that and couldn't diagnose it

He was 60 when officially diagnosed and is now 65. Knowing what i do about PCA now I think he had it several years before he got the diagnosis as so many things make sense. I think he’s had it closer to 7 or 8 years. The decline at first was slow, he continued commuting and working in London for 18 months but then covid happened and things went downhill. He had to stop work and driving and it’s been hard ever since. I’m still only 49 and working so it became impossible to keep him at home unfortunately 😞

 

[Flynnie]

He was 60 when officially diagnosed and is now 65. Knowing what i do about PCA now I think he had it several years before he got the diagnosis as so many things make sense. I think he’s had it closer to 7 or 8 years. The decline at first was slow, he continued commuting and working in London for 18 months but then covid happened and things went downhill. He had to stop work and driving and it’s been hard ever since. I’m still only 49 and working so it became impossible to keep him at home unfortunately 😞

Hi bushns01, you have my sympathy , I know I have all this to come , my wife's eyes went early, she couldn't read or write, the problems with eating have happened in the last 6months and very recently I have to help her with the toilet , my main problem is she can still talk although sometimes that gets mixed up but that results in arguments every day because she is still in denial telling me she is going to get better

 

[Flynnie]

He was 60 when officially diagnosed and is now 65. Knowing what i do about PCA now I think he had it several years before he got the diagnosis as so many things make sense. I think he’s had it closer to 7 or 8 years. The decline at first was slow, he continued commuting and working in London for 18 months but then covid happened and things went downhill. He had to stop work and driving and it’s been hard ever since. I’m still only 49 and working so it became impossible to keep him at home unfortunately 😞

Hi bushns01, you have my sympathy , I know I have all this to come , my wife's eyes went early, she couldn't read or write, the problems with eating have happened in the last 6months and very recently I have to help her with the toilet , my main problem is she can still talk although sometimes that gets mixed up but that results in arguments every day because she is still in denial telling me she is going to get better

 

[John8697]

7 weeks ago I made the hardest decision to move my husband into a care home. He is 64 and has PCA dementia and I’m 48 and still working. The last year has seen a real progression, he’s now registered severely sighted, has incontinence issues and at nighttime it got to the point where he was getting up most nights between 10-25 times. I had to be signed off sick from work with stress and lack of sleep and I just can’t carry on caring for him at home.

He initially seemed to settle well into the home, not asking if he was coming home or saying he didn’t like it. But the past 2 weeks he has been displaying anger and frustration towards some of the care home staff and my visits have been hard. He doesn’t want to be there and today cried and said he didn’t want to go back to the home (even though we were already in his room at the time). When I leave I feel terrible and have to sneak out so it doesn’t upset him.

I know I can’t have hI’m home, I’ve just gone back to work and his care assessment and all health care professionals say he needs 24 hour care which I can’t provide and he didn’t have capacity to make his own descision when they did the mental capacity assessment. When he was diagnosed we did discuss this stage and he never wanted me to do caring when it got to this stage and he definitely didn’t want me making myself ill trying to carry on.

I think the main issue is boredom as he is the youngest resident and the activiites they do aren’t age appropriate. It’s very hard to find things for him to do due to his vision problems. I’ve contacted the home to discuss this as he needs activities for his age and he needs to get out more, walking etc

I dread visiting and I’m finding it all overwhelming. Would be good to hear from others in similar situations, I’m hoping things may settle again as I just hate thinking about him being unhappy.

Hi, me and my wife have just put my mum in a care home after 9 years of caring for her. It’s respite care at the moment but the council have just assessed her saying she needs 24hr care. She’s in a nursing home but they say she may need to be moved to a residential home. It’s only been two weeks but when I visited her yesterday all she wants to do is come home. It’s really affected me especially as she may need to be moved again. She’s also very deaf so we mainly communicate by a writing pad. I told her a lie saying she would come home soon. She has no real short term memory so I just have to hope this helps her. I also tried to be positive but it really hurts. I hated leaving her thinking she’s distressed. I want to visit again today but I’m dreading it. I’m looking for suggestions myself on how best to cope but I really feel your distress and hope that your husband eventually settles.

 

[Rich22]

It is horrible putting a loved one into a home. My wife went into residential care full time last May when she was 67. She drove all the staff round the bend continually demanding to go home and asking to phone me to collect her, She also went into other residents rooms and other unacceptable behaviour. After me initially refusing they put her on an 'anti-psychotic' drug (Risperidone) for a couple of months. It is really a sedative and worked. When she came off it the urge to come home was less.

 

[Bushns01]

Hi, me and my wife have just put my mum in a care home after 9 years of caring for her. It’s respite care at the moment but the council have just assessed her saying she needs 24hr care. She’s in a nursing home but they say she may need to be moved to a residential home. It’s only been two weeks but when I visited her yesterday all she wants to do is come home. It’s really affected me especially as she may need to be moved again. She’s also very deaf so we mainly communicate by a writing pad. I told her a lie saying she would come home soon. She has no real short term memory so I just have to hope this helps her. I also tried to be positive but it really hurts. I hated leaving her thinking she’s distressed. I want to visit again today but I’m dreading it. I’m looking for suggestions myself on how best to cope but I really feel your distress and hope that your husband eventually settles.

Hi John
Thanks for taking the time to comment and I'm sorry to hear you are going through this difficult stage. It's amazing how time does make things more bearable. My husband has now been in the care home for 8 months and is very well settled, I no longer feel the way I did when he first went in. It probably took about 3 months but he is in the right place, he is safe and looked after 24 hours a day and its impossible to do that home without making yourself very ill (that's my opinion anyway).
I also found the telling lies hard but I've come to realise now that they are kind lies that are protecting the person you love and actually whilst it makes us feel bad it doesn't make them feel bad.
My husband has progressed quite a lot in the 8 months, its becoming more difficult to go out of the home due to incontinence but I try as much as I can to make my visits nice for him. And I don't get that awful feeling of dread every time I visit anymore.
I think all I can say is hang in there, you will have made the right decision and things will start to become easier to manage and handle over time.
Best wishes
Samantha

 

[Melles Belles]

@Bushns01
It Is good to hear that you husband has now settled in the home after a few months, and that your feelings of dread have gone. I know that feeling and it’s tough.

 

[Knitandpurl]

Hi Bushns01. My husband also has PCA , he is not so far along as your husband yet but I also find finding Activities for him difficult due to the sight issue. We have local Blind Society and he has a Talking Newspaper from them every week which he enjoys. This Society also does a befriending service where they will pair someone with a ‘friend’. At the moment my husband has refused this but maybe an idea for you. Someone else to visit, maybe take him for a walk, coffee, have a ‘men’ chat?

 

[sdmhred]

I hadn’t heard of PCA - just done a google - something new for me to have learnt today!

 

[Izzy]

There’s a link to a PCA support group within this factsheet in case it’s of interest to anyone -

Posterior cortical atrophy

Posterior cortical atrophy (PCA), also known as Benson's syndrome, is a rare degenerative condition in which damage occurs at the back (posterior region) of the brain. In the vast majority of people, the cause of PCA is Alzheimer's disease.

www.alzheimers.org.uk

 

[maggieanne]

My husband is the same.
Five months in and his dementia has worsened. His behaviour is off the scale. He’s the youngest there. Everyone else there are so much older,sleeping most of the time..
The home has said they cannot cope with his behaviour as it’s upsetting the other residents.
I go to see him most days to help him shower as he won’t let the carers help him. He doesn’t always let me but I have to try.
They have tried different medications and so far nothing has helped. They are trying him on larzansopan next week.
They have said he needs nursing care which means moving him. I’ve asked can they at least wait and see if this drug helps as I feel moving him when he’s finally recognising the care staff . Moving him is just not going to help his agitation.
I feel they just want patients who are calm .
What I don’t understand is it’s a dementia unit so surely they should be able to manage dementia behaviour.
I’m out of my mind with worry for him. I feel I’m never going to have a bit of life for myself. I just so want him to settle. He’s going to end up miles away. I don’t drive and I’m just recovering from a full hip replacement.
Still waiting for a financial assessment. Does the worry ever end😢

 

[Nannypoo]

I feel your pain. My Bill is also in a Memory Care facility. The one thing I found that really helps is that I bought a Roku tv and he can watch the price is right all day. Just have the care staff put it on every morning. Most times when i visit he is either in bed or in the lazy boy watching it.