Care home guilt

[maggieanne]

My husband went into a care home October 2023.
He was diagnosed with early onset Alzheimer’s in 2018. He was showing symptoms years before that.
His dementia has progressed rapidly since he went it.
There’s been so many issues since entering the home. Refusing personal care, pulling residents shoes off them,in and out of residents rooms. So many other things as well.
They cannot manage him in the home anymore. He has to go into nursing care.
I felt guilty at the start of him going in,now the guilt is even worse. Could I have managed him at home for longer?
I’m constantly crying.
I’m still waiting for a financial assessment. Worrying myself silly about that.
I’m usually such an upbeat person. I keep thinking I can’t let it take me as well but it’s going that way.
Rushing from the home 10 weeks ago I fell and fractured my hip so I’m also recovering from a full hip replacement.
How do you all manage the overwhelming guilt?
I know he would want me to take care of myself but I’m still struggling to get through this awful time.

 

[Kevinl]

Well done you, all I have to say, stops crying and continues to say well done. K

 

[Collywobbles]

Honestly if a team of 24 hour carers in a care home can’t cope with his developing behaviours, there’s no reason to think that you could have done more. If anything, at home with you he might have been far more of a danger to both himself and you.

As out of character as it seems for your husband, what you describe is a perfectly normal progression of the disease for some folks. Once he’s in a more specialist home, you’ll hopefully find that he becomes more comfortable and manageable with a combination of better tailored medication and carers with the right experience.

Please don’t beat yourself up. Dementia makes us all second-guess ourselves when there’s absolutely no reason.

 

[Ellie2018]

I’m sure it feels worse when you visit and they tell you these things, I wonder if the nursing home will be a better environment for his needs and helps h8m to settle better. I’m sure that most people wouldn’t want their loved one to have to care for them when it’s just not doable. I’m not there yet but I’m sure when I reach it I’ll feel as guilty even though I’m saying you shouldn’t! Good luck.

 

[Dutchman]

My husband went into a care home October 2023.
He was diagnosed with early onset Alzheimer’s in 2018. He was showing symptoms years before that.
His dementia has progressed rapidly since he went it.
There’s been so many issues since entering the home. Refusing personal care, pulling residents shoes off them,in and out of residents rooms. So many other things as well.
They cannot manage him in the home anymore. He has to go into nursing care.
I felt guilty at the start of him going in,now the guilt is even worse. Could I have managed him at home for longer?
I’m constantly crying.
I’m still waiting for a financial assessment. Worrying myself silly about that.
I’m usually such an upbeat person. I keep thinking I can’t let it take me as well but it’s going that way.
Rushing from the home 10 weeks ago I fell and fractured my hip so I’m also recovering from a full hip replacement.
How do you all manage the overwhelming guilt?
I know he would want me to take care of myself but I’m still struggling to get through this awful time.

Hello @maggieanne.

I’ve just come across your post

My husband went into a care home October 2023.
He was diagnosed with early onset Alzheimer’s in 2018. He was showing symptoms years before that.
His dementia has progressed rapidly since he went it.
There’s been so many issues since entering the home. Refusing personal care, pulling residents shoes off them,in and out of residents rooms. So many other things as well.
They cannot manage him in the home anymore. He has to go into nursing care.
I felt guilty at the start of him going in,now the guilt is even worse. Could I have managed him at home for longer?
I’m constantly crying.
I’m still waiting for a financial assessment. Worrying myself silly about that.
I’m usually such an upbeat person. I keep thinking I can’t let it take me as well but it’s going that way.
Rushing from the home 10 weeks ago I fell and fractured my hip so I’m also recovering from a full hip replacement.
How do you all manage the overwhelming guilt?
I know he would want me to take care of myself but I’m still struggling to get through this awful time.

hello @maggieanne
I’ve just come across your post. Guilt is a terrible thing that eats away at us constantly ( well it does for me). Going into a care home is the ultimate in producing guilt. Your loved one is placed away from you and you believe it’s all your fault. It’s not because dementia take away the rational and replaces it with a situation that cannot be resolved.

I constantly believe that I behaved at times selfishly during our marriage and when she developed dementia and went into a home it was too late to remedy any of this. She didn’t know me. She died recently and it really is too late.

My suggestion is that as hard as it is you need to look after yourself because without you he has no one to represent his position.

Take care

 

[maggieanne]

Thanks for your reply.
You’re so right guilt eats away at you.
I thought things couldn’t get any worse. Well it has.
My husband has had to leave the care home he is in and is now in our local hospital.
Due to his behaviours this is where he is. He’s so drugged up with medication to keep him calm.
He’s refusing personal care. Moving tables and chairs as he thinks he’s tidying up.
He’s not aggressive as long as he’s able as he thinks to do his jobs .
Hopefully they can adjust his meds. At the moment the social worker has said no home will take him due to his behaviours.
It’s a never ending worry. As much as I’ve tried I’ve realised I cannot do any more to help him. As much as I’ve tried to do nothing makes it better.
After a visit today he was asleep when I arrived. He hadn’t ate his lunch. We tried to get him to eat but his lunch but it was cold. I asked if we could warm it it and they said they weren’t allowed to heat his food. So a sandwich brought for him. No hot food.
He’s lost loads of weight. I was told when he left the home he would get extra care. Although there is more staff around I’m doubtful about his care.
I don’t drive and he is now further away from me. I feel I should be there every day to myself sure he at least has one good meal.
So much for hospital care. I sometimes think I should bring him home. Then I realise I couldn’t cope anymore when he went into the care home so how will I manage now.
It’s a scary outcome.

 

[Dutchman]

Hi there @maggieanne. No matter how hard it gets do not consider bringing your husband home. It would be a disaster for you both.

I nearly did the same with my wife as I missed her so much and she begged me to drive her home but she’d forgotten so much about the idea of her home that there’s was no reality.

Hopefully, over time, things will settle but you’ll need to tough it out I’m afraid. You will be very very upset and heartbroken but at least with the professionals he’s getting the best care that situation allows.

 

[Violet Jane]

Please don't bring your husband home. If a team of people can't manage him then you won't be able to. Please don't take this the wrong way but I'm wondering whether your husband would benefit from being sectioned in a specialist MH ward where his medication could be reviewed and adjusted. Ordinary hospitals are not good places for people with dementia. They don't care for them properly and only treat the condition for which the person was admitted. It sounds as if your husband is only in this hospital because there is nowhere else for him to go. Please speak to the social worker and ask her what the plan is for your husband.

 

[Dutchman]

Please don't bring your husband home. If a team of people can't manage him then you won't be able to. Please don't take this the wrong way but I'm wondering whether your husband would benefit from being sectioned in a specialist MH ward where his medication could be reviewed and adjusted. Ordinary hospitals are not good places for people with dementia. They don't care for them properly and only treat the condition for which the person was admitted. It sounds as if your husband is only in this hospital because there is nowhere else for him to go. Please speak to the social worker and ask her what the plan is for your husband.

I totally agree with @Violet Jane. The right place for him now is in the care of the hospital but with the provision that more specialist is forthcoming and quickly. With the best will in the world the hospital can only do so much and they, like you, will want to see him in the correct environment.

 

[maggieanne]

I totally agree with @Violet Jane. The right place for him now is in the care of the hospital but with the provision that more specialist is forthcoming and quickly. With the best will in the world the hospital can only do so much and they, like you, will want to see him in the correct environment.

Thank you all for your reply’s.
What you have all said makes absolute sense. I just needed to hear it from others.
He has been sectioned a week ago.
We had a meeting with the consultant yesterday. Where as the care home he was in said he had been aggressive when approached for personal care, the doctors said as long as he was approached slowly and they explained what they were doing he’s been lovely.
They have said he needs a care home where he can walk about and do his jobs he thinks he has to do.
Just wondering about CHC funding? I asked the consultant if he would be able to have this. She said she didn’t think so,yet I’ve read so much about his ongoing needs and according to that it’s likely he is.
I know it’s really hard to get and they will do anything to get out of giving it. I’m wondering if we should try? The trouble is that’s another fight and I’m not sure if I have it in me to do it.