Husband 64 not settling in care home

[Bushns01]

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.

 

[Louise7]

Hello @Bushns01 and welcome to Dementia Talking Point but sorry to read that your husband has dementia at a young age. It can take several months to settle after going into a care home and for the person to get used to the change in environment, new routines and also to start to rely more on the care staff, and it is still quite early days for your husband. I hope that the care home will be able to tailor the activities so that they are more 'person centred' and meet your husband's needs better, which will hopefully help him to settle in more. You are doing the right thing by raising this with the manager, and also by 'sneaking out' when leaving. It does feel terrible but it usually helps to reduce stress/anxiety and I tend to tell my mum that I'm just popping to the loo or over the road to the shops. Another good tip I got from members here is to try to visit with a 'happy face' and speak positively (be a bit of a Pollyanna!) as those with dementia can be quick to pick up on body language and notice if you appear unhappy or anxious.

This is a friendly and supportive place with people who understand so keep posting to let us know how you are getting on.

 

[Bushns01]

Thank you for replying, it’s so good to hear from people who know what you are going through. That’s a good reminder about putting on a happy face. I made sure to do that when he first went in but admit this last week I have been dreading visiting and he has probably picked up on that. I shall make sure to do that when I visit

 

[joybells60]

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.

 

[joybells60]

Hello

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.

I really understand what you are saying and find myself in the same position. My husband was initially going into a care home for a weeks respite, but it is looking like a longer stay now, as it is dangerous for him to manage the stairs at home.

I'm finding all this extremely difficult and upsetting, and today he was so down and upset all day. All of the dementia stages have been difficult but this feels almost unbearable. I miss him so much and find it hard to sleep. Hence writing on forums at 1am !

 

[Grannie G]

@joybells60 and @Bushns01

I can only imagine how hard it is for you both and can only hope your husbands will settle eventually and your visits will be a little easier.

 

[Bushns01]

Hello

I really understand what you are saying and find myself in the same position. My husband was initially going into a care home for a weeks respite, but it is looking like a longer stay now, as it is dangerous for him to manage the stairs at home.

I'm finding all this extremely difficult and upsetting, and today he was so down and upset all day. All of the dementia stages have been difficult but this feels almost unbearable. I miss him so much and find it hard to sleep. Hence writing on forums at 1am !

It’s so hard, I think I had been lulled into a false sense of security as the first couple of weeks in the care home seemed to go well. I think now my husband has probably realised he isn’t coming home. He doesn’t ask to come home or say how long am I here for but I can tell he doesn’t want to be there And would rather be at home with me. I’m just hoping time will make it better and easier.
Not sleeping is hard too, i get off to sleep ok but then wake up too early and can’t go back to sleep.

 

[maggieanne]

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.

I’m in the same situation as yourself. My husband went into a care home seven weeks ago. There’s only seven of them in the unit. The trouble is they are all a lot older than him.
The care staff have said his dementia has worsened since he went in. They said being around the others hasn’t helped him at all.
The home is only 4 miles from me and as I don’t drive just a short bus ride away for me to visit . The home has a good reputation and the staff are lovely.
I visit as often as I can but it’s so upsetting seeing him like this. I’ve cried so much since he’s been there. I felt quite positive at the start. He settled at the start. I thought he’s being looked after and I can finally go through the door without worrying about him.
I didn’t realise that things would still be as hard. It’s hard being on my own but even harder worrying about him seeing him so sad and not wanting to do anything. This journey never seems to end.
I honestly don’t know where we go from here. I even wish his journey would end so he would be at peace from this horrible disease. It’s true dementia takes two life’s. Wish I could be more positive about this for you.

 

[Mumlikesflowers]

Just seen your response @maggieanne. Some similarities in that I thought we were doing ok at the start. Where Mum is, I often feel for the men, being in a minority and they do tend to be younger. For me the challenges are feeling that Mum's needs are being met and going round and round in circles with this. My theory is that if they were living with a family carer before, invariably they will show signs of decline and if they were struggling living on their own, they are more likely to improve on some level. The grass is always greener, but I was coping a lot better caring for Mum than I am now. And yet I know it wasn't the wrong decision. You are not alone and in a way I gain solace when I see how perplexing other family members find it. We often say hello and share our experiences. Mind you, mostly it's the lack of visitors I observe, some of them never ever having visitors.

 

[Bod]

@maggieanne
It took closer to 7 months for my father to really settle in his Home.
Reduced visits from you and others, may help him to get used to the staff, and surrounding quicker.
As he is so different from the rest of the unit, could he go into the the more general residents unit.

Bod

 

[Cardinal]

My theory is that if they were living with a family carer before, invariably they will show signs of decline and if they were struggling living on their own, they are more likely to improve on some level

My mother lived on her own before being placed in a home. She tried as hard as she could to take care of herself at home but it was a major struggle for her. When placed in a home she could finally relax and let her mind go. Because she no longer had to try and hold things together and was safe she had a huge decline in her mental abilities. My mother took at least 7 months to settle in. It took a lot of trial and error from the home for her to finally settle.

 

[Violet Jane]

@Mumlikesflowers, It's interesting that you have observed that the men in dementia units seem to be younger. I wonder why that is if it's actually the case. Thinking back to my mother's home, there were far fewer men and they appeared to be quite fit physically and so were perhaps younger.

 

[Violet Jane]

I think that the change of environment is disorientating and can cause a decline but I also think that when you see a PWD away from his/her familiar surroundings and surrounded by other people with dementia s/he seems worse. Some people do improve in care homes. If they have been anxious and lonely at home being surrounded by people day and night and having activities and company on site can make them happier.

 

[sdmhred]

How bizarre - I have also been thinking about the men / women thing. When you look at who are at the end end stage in mum’s home - it’s all women. The men are all mobile …..except one poor chap who is end stage at 61 😭😭😭

I was wondering if other physical health issues strike before dementia gets to the bitter end - oh joyous reflections

 

[Looseleaf]

Just seen your response @maggieanne. Some similarities in that I thought we were doing ok at the start. Where Mum is, I often feel for the men, being in a minority and they do tend to be younger. For me the challenges are feeling that Mum's needs are being met and going round and round in circles with this. My theory is that if they were living with a family carer before, invariably they will show signs of decline and if they were struggling living on their own, they are more likely to improve on some level. The grass is always greener, but I was coping a lot better caring for Mum than I am now. And yet I know it wasn't the wrong decision. You are not alone and in a way I gain solace when I see how perplexing other family members find it. We often say hello and share our experiences. Mind you, mostly it's the lack of visitors I observe, some of them never ever having visitors.

The home where my husband has now been a resident for 18months has just asked me to take on a new role for both them and me as 'Relatives Ambassador '. I am holding monthly coffee/tea breaks for relatives and guardians. The 2 held so far were agreed, by those who attended, as a great opportunity to talk, exchange experiences and support each other. Hopefully we can now encourage more to attend. One comment was 'To hear the experiences of others so similar to my own has made me feel normal!'

I have also given two talks about my husband to staff for training. Firstly outlining his life and then about our journey with him living with dementia. These were so warmly received by staff from maintenance to management and recognised as such a good contribution to their training. Hopefully it will encourage them to find out about residents earlier life and talk to relatives.
I am happy to hear any further suggestions especially if this role has been implemented in other homes. Anything so that this very difficult transition can be made easier for all of us, resident and relatives.

 

[Violet Jane]

I've just been googling and it appears that women are twice as likely to develop Alzheimer's Disease (AD) than men and as AD is the most common form of dementia that probably explains why there are more women than men in dementia units.

 

[Melles Belles]

Dr Louise Newson has been involved in studies looking at why more women than men are diagnosed with Alzheimer’s. It may be due to declining oestrogen after menopause. Men, in general, don’t have rapid declines in testosterone and that maybe why they are less likely to get Alzheimer’s. Men with low testosterone are more likely to have cognative impairments than those with normal levels.
Also women live on average 3-4 years longer than men but that doesn’t account for the higher rates in women.

 

[Kevinl]

Might be women (usually) have a longer life expectancy than men and AZ is usually age associated.
K

 

[Cardinal]

Years ago I read a research article that the gene for immune response is attached to the X-chromosome and that because women have two X-chromosomes and men have one, women have more immunity than men. Because women have more immunity than men they generally live longer.

I just yesterday read about a new research study, from the University of Washington, that so far seems to be showing that for some people with Alzheimer’s their immune response becomes overactive and damages the cells, in the brain, that help prevent damage to the brain. Basically an overactive immune response causes a chain reaction that then eventually causes Alzheimer’s. It’s possible that because women have more immunity than men they have a greater risk of having an overactive immune response and as a result have a greater risk of developing Alzheimer’s.

I don’t have a medical background so hopefully I’ve interpreted what I read correctly.

 

[Bushns01]

I’m in the same situation as yourself. My husband went into a care home seven weeks ago. There’s only seven of them in the unit. The trouble is they are all a lot older than him.
The care staff have said his dementia has worsened since he went in. They said being around the others hasn’t helped him at all.
The home is only 4 miles from me and as I don’t drive just a short bus ride away for me to visit . The home has a good reputation and the staff are lovely.
I visit as often as I can but it’s so upsetting seeing him like this. I’ve cried so much since he’s been there. I felt quite positive at the start. He settled at the start. I thought he’s being looked after and I can finally go through the door without worrying about him.
I didn’t realise that things would still be as hard. It’s hard being on my own but even harder worrying about him seeing him so sad and not wanting to do anything. This journey never seems to end.
I honestly don’t know where we go from here. I even wish his journey would end so he would be at peace from this horrible disease. It’s true dementia takes two life’s. Wish I could be more positive about this for you.

Hopefully this update will give you some hope. My husband has now been in the home 5 months and is now well settled. He is generally happy when I visit and the home are making efforts to cater for his age and stage. It’s not the perfect place as I don’t believe this exists for young dementia but it’s the best place for him to be.
I am getting used to living alone and visiting him is now much easier and I am starting to carve out a new life for myself. It’s not the life I wanted but I do know I definitely made the right decision for both of us when I agreed to move him into the home.
Hang on in there, time does help and you will find ways of dealing with a desperately sad situation. I have a counsellor I regular talk to which helps, I am swimming more now that I have time and I have joined a meditation group which I really enjoy.
I really hope your situation will get better to deal with in time. Take care Samantha