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.

 

[evenchris]

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.

Hi.
I was my wife’s only carer. She was diagnosed 5 years ago with Alzhiemers. Having cared for her 24hrs a day. I got to the stage where I was worried about loosing my temper and my wife getting angry with me.
For relief , I took her to day centres but the evenings, nights and weekends were full on. Continence. Insomnia, walking about kept me up, I was constantly shattered.
Following discussions with the doctors , the Alzhiemers advisor and my family, my wife is now in a Dementia Care Home.
She has settled quite well but myself , I miss her so much. It’s like bereavement. I cannot get over the guilt of putting her into a home.
I am told “get out there” “ join clubs” “ make friends” “volunteer “ easier said than done. I don’t want to even though I am lonely.
Just remember, you’re not on your own.
Good luck.

 

[Dutchman]

I too

Hi.
I was my wife’s only carer. She was diagnosed 5 years ago with Alzhiemers. Having cared for her 24hrs a day. I got to the stage where I was worried about loosing my temper and my wife getting angry with me.
For relief , I took her to day centres but the evenings, nights and weekends were full on. Continence. Insomnia, walking about kept me up, I was constantly shattered.
Following discussions with the doctors , the Alzhiemers advisor and my family, my wife is now in a Dementia Care Home.
She has settled quite well but myself , I miss her so much. It’s like bereavement. I cannot get over the guilt of putting her into a home.
I am told “get out there” “ join clubs” “ make friends” “volunteer “ easier said than done. I don’t want to even though I am lonely.
Just remember, you’re not on your own.
Good luck.

I too had to place my wife in a care home as I couldn’t care for her on my own any more. She needed a team a carers to look after her every need. And, believe me, the moment she left our house never to return my world just imploded and I nearly had a nervous breakdown with the grief and heartbreak that came with losing her.

Guilt for placing your love one into a home is normal and very common. Why wouldn’t you feel guilt? It’s natural. It’s been 5 years for me now and I lost her to a stroke last September. All I can say is the hurt does get less and I’ve realised that in the end the care home was the kindest thing I could do for her. On your own you cannot cope with dementia and all it’s bizarre behaviour. I wanted to but in the end I was wrung out like a old flannel.

I was told to join things but it’s guilt again, doing on your own so I haven’t bothered.

Try to understand that you will get through this. Visit your wife and enjoy her company and get to know the carers there as they will become friends over time.

Peter

 

[Dutchman]

Hello @evenchris

As an extra. No matter how you feel please do keep in touch on this Forum. We are here for you every day. Stretch out to the dementia Uk nurses, the Samaritans, Alzheimer Uk help line, in fact anything that gets you through the day and night.

I have a counsellor - think about it. They could be invaluable

Peterx

 

[evenchris]

Hello @evenchris

As an extra. No matter how you feel please do keep in touch on this Forum. We are here for you every day. Stretch out to the dementia Uk nurses, the Samaritans, Alzheimer Uk help line, in fact anything that gets you through the day and night.

I have a counsellor - think about it. They could be invaluable

Peterx

Thank you Peter.
I thought I was doing alright but reading your reply and others it has brought me to tears. No matter how busy I keep myself, the house is empty and so am I.
My confort is that my wife has settled in care home life. She is happy, she talks to the carers and other residents even though I don’t have a clue what she is saying and the most important thing is, she smiles and laughs something she had not done for many months whilst at home.
Thank you.
Chris,

 

[Dutchman]

Thank you Peter.
I thought I was doing alright but reading your reply and others it has brought me to tears. No matter how busy I keep myself, the house is empty and so am I.
My confort is that my wife has settled in care home life. She is happy, she talks to the carers and other residents even though I don’t have a clue what she is saying and the most important thing is, she smiles and laughs something she had not done for many months whilst at home.
Thank you.
Chris,

You will get through this. I thought I wouldn’t but it takes time and it’s getting through each day that’s the challenge. You don’t need to go every day. She won’t remember. Have a routine. I went every other day unless I felt I needed to go especially.

Speak again later. Peter

 

[Dutchman]

You will get through this. I thought I wouldn’t but it takes time and it’s getting through each day that’s the challenge. You don’t need to go every day. She won’t remember. Have a routine. I went every other day unless I felt I needed to go especially.

Speak again later. Peter

Hello @evenchris

How has today been.? You’ll find each visit a little different.

Here’s what I did at the beginning. I spent way too long in the home because I felt Bridget needed me to be there. But the staff will look after your wife okay and if it’s a good home they’ll get to know her and you more with each visit you do. It’s important that you get to know the staff, after all they are your wife’s new closest people who will do all the personal care.

When you get home try to remember that you never could do it all own your own and your wife deserves a team of people now to care for her. I know it’s terribly hard and there’s no way round the hurt you feel at this moment. She’s smiling so convince yourself that she is becoming content.

I know the house is empty and like you I found this one of the hardest things to come to term with having been married for over 30 years. There’s no easy answer to this. I haven’t join things, found a new hobby- all the things they tell you to do. I go to the cinema often and don’t mind eating out alone. If you’re active walking is a distraction but I’ve been ill and can’t walk a long way yet - I go swimming regularly.

Being a bloke I believe it’s easier to do stuff alone. But men don’t open up to others for support usually so well done.

I’m here always. Just message in and I’ll give support if I can

Peterx

 

[Dutchman]

Hi.
I was my wife’s only carer. She was diagnosed 5 years ago with Alzhiemers. Having cared for her 24hrs a day. I got to the stage where I was worried about loosing my temper and my wife getting angry with me.
For relief , I took her to day centres but the evenings, nights and weekends were full on. Continence. Insomnia, walking about kept me up, I was constantly shattered.
Following discussions with the doctors , the Alzhiemers advisor and my family, my wife is now in a Dementia Care Home.
She has settled quite well but myself , I miss her so much. It’s like bereavement. I cannot get over the guilt of putting her into a home.
I am told “get out there” “ join clubs” “ make friends” “volunteer “ easier said than done. I don’t want to even though I am lonely.
Just remember, you’re not on your own.
Good luck.

 

[Dutchman]

Hello @evenchris

All this advice about joining stuff is well meant but also ill timed. At the moment you have enough to deal with. The feelings of guilt are so very common. I still have them and it’s been 5 years since she went into a care home. Yes, it’s like a death because the person you’ve loved ( and still love) has been torn away from you through no fault of your own.

I’m sure you did everything you could to cope with an uncontrollable situation. I often wonder could I have done more but we are just regular blokes trying to care for our love ones on our own and, in the end, it’s impossible ( and dangerous) so the professionals need to take over.

I must emphasise that a good organisation to reach out to is Dementia UK who have Admiral Nurses who will understand your situation and can give good advice. Also try the Alzheimer Society helpline. Speak to the Samaritans ( for general chat at 4 in the morning).

I know it’s early days and it’s all very raw but remember that your wife is now safe and looked after. Being lonely is horrible. No matter how many people are around you really want the one person you can’t have. And you find sleeping difficult, you cry constantly, you imagine her in the little room, and all you want is to have her back. These were my feelings and experiences.

You will get through this, it does get easier but it takes time.,

Peter