Feeling guilty

[May30]

Hi,
I posted a while ago when my dad was in hospital. He was mobile and living at home with my mum as his main carer before hospital. He is 74. We were not really coping in the months leading up to his hospitalisation. He was refusing help with personal care and the carers were getting nowhere. His skin was breaking down as he was incontinent and he was in pain. He then got cellulitis in his leg and they felt he needed to be admitted as the care at home had broken down and my mum had carer burnout. He was in hospital for about a month where he fought the nurses every time they had to change him and he stopped getting out of bed. The physios tried to help but couldn't get him to do anything. He would grip onto the bed if they tried to help and he didn't understand their verbal instructions. He was constantly overstimulated and distracted on the ward. He was discharged to a nursing home and has been there two weeks. My mum is recuperating, she is finally able to sleep the night through which is so important as she has bipolar disorder. I have been able to focus on work and my relationship and have felt more myself. But when I visit dad I feel so sad and so guilty. I don't know what is the right thing for him. I know that in the home he is getting 24/7 care but he still hasn't got out of bed. The physios linked to the home are going to try and start helping him next week. I hate seeing how much distress he's in when they change him. He isn't able to do it for himself as he just doesn't seem to understand anything. He really needs to try and get his mobility back so he can do more for himself. I just want to steal him away and look after him but at the same time feel relieved that at the moment I can focus on myself and my mum. We're waiting for an NHS CHC assessment. I don't think the home hes in at the moment is right for him as they focus a lot on palliative care and not dementia but we'll have to wait for the outcome of the assessment and I guess see if a place comes up anywhere else. Feel helpless

 

[karaokePete]

This situation must be very tough for you and the family.

The only thing I can say is that you should try to ignore feelings of guilt as your dad is getting 24/7 care from professionals and I hope they find a way to help him to a more comfortable and peaceful place.

 

[canary]

I think we'd all like to scoop up our loved one and make it all better, but its just an emotional response. Our heads know that we cant fix it and if we take them home it wont be any better (in fact it would be a whole lot worse), but it takes a while for this to get from out heads to our hearts.

You have nothing to feel guilty about - you didnt cause his dementia and none of this is your or your mums fault.
Someone said to me when we talk about guilt in these circumstances then what we are actually feeling is grief that it has come to this.

 

[lemonbalm]

Hi,
I posted a while ago when my dad was in hospital. He was mobile and living at home with my mum as his main carer before hospital. He is 74. We were not really coping in the months leading up to his hospitalisation. He was refusing help with personal care and the carers were getting nowhere. His skin was breaking down as he was incontinent and he was in pain. He then got cellulitis in his leg and they felt he needed to be admitted as the care at home had broken down and my mum had carer burnout. He was in hospital for about a month where he fought the nurses every time they had to change him and he stopped getting out of bed. The physios tried to help but couldn't get him to do anything. He would grip onto the bed if they tried to help and he didn't understand their verbal instructions. He was constantly overstimulated and distracted on the ward. He was discharged to a nursing home and has been there two weeks. My mum is recuperating, she is finally able to sleep the night through which is so important as she has bipolar disorder. I have been able to focus on work and my relationship and have felt more myself. But when I visit dad I feel so sad and so guilty. I don't know what is the right thing for him. I know that in the home he is getting 24/7 care but he still hasn't got out of bed. The physios linked to the home are going to try and start helping him next week. I hate seeing how much distress he's in when they change him. He isn't able to do it for himself as he just doesn't seem to understand anything. He really needs to try and get his mobility back so he can do more for himself. I just want to steal him away and look after him but at the same time feel relieved that at the moment I can focus on myself and my mum. We're waiting for an NHS CHC assessment. I don't think the home hes in at the moment is right for him as they focus a lot on palliative care and not dementia but we'll have to wait for the outcome of the assessment and I guess see if a place comes up anywhere else. Feel helpless

Hi,
I posted a while ago when my dad was in hospital. He was mobile and living at home with my mum as his main carer before hospital. He is 74. We were not really coping in the months leading up to his hospitalisation. He was refusing help with personal care and the carers were getting nowhere. His skin was breaking down as he was incontinent and he was in pain. He then got cellulitis in his leg and they felt he needed to be admitted as the care at home had broken down and my mum had carer burnout. He was in hospital for about a month where he fought the nurses every time they had to change him and he stopped getting out of bed. The physios tried to help but couldn't get him to do anything. He would grip onto the bed if they tried to help and he didn't understand their verbal instructions. He was constantly overstimulated and distracted on the ward. He was discharged to a nursing home and has been there two weeks. My mum is recuperating, she is finally able to sleep the night through which is so important as she has bipolar disorder. I have been able to focus on work and my relationship and have felt more myself. But when I visit dad I feel so sad and so guilty. I don't know what is the right thing for him. I know that in the home he is getting 24/7 care but he still hasn't got out of bed. The physios linked to the home are going to try and start helping him next week. I hate seeing how much distress he's in when they change him. He isn't able to do it for himself as he just doesn't seem to understand anything. He really needs to try and get his mobility back so he can do more for himself. I just want to steal him away and look after him but at the same time feel relieved that at the moment I can focus on myself and my mum. We're waiting for an NHS CHC assessment. I don't think the home hes in at the moment is right for him as they focus a lot on palliative care and not dementia but we'll have to wait for the outcome of the assessment and I guess see if a place comes up anywhere else. Feel helpless

This is very hard. Hospital is a terrible environment for someone with dementia. My mum was like a wild animal when she was in hospital. I moved her into a care-home as soon as I could just to get her out of there, then into a better one, which couldn't cope with her behaviour, then into a third, where she is finally calm and cheerful much of the time (and has no recollection of hospital or the previous care homes). I still feel guilty. The problems we face are huge and complex. It may help to break the whole situation into smaller chunks and tick off some achievements. Your father is out of hospital (which is good), he is being looked after 24/7, (which is good), you and your mum have some breathing space (which is good). Your father is being assessed (which is good). You are making progress. We do our best but the trouble is, it never feels good enough to us and we feel terribly alone. Try taking a step back. Imagine that someone else has the problems that you are facing and what you would say to them. You will probably find that your advice would be kind and practical. It is hard to be kind to yourself but it is really what we need.

 

[myss]

Hi @May30

That last line in canary's post above took my breath away because it's probably something we all feel. I know I have felt that way and still do. I have to reliterate, you have done nothing to feel guilty over.

Your dad are with professionals who have the necessary support and ability to care for him and his behaviours and, even if it just for the time being, it does seem he is in the right place right now.
If it helps, I am doing the thing you wish you could do - scoop your dad and look after him - but it is far from easy to do - and I say that with my dad having one of my siblings living with him, and 3 other family members and an external carer also caring for him. It is still a struggle, physically and emotionally.

 

[May30]

Thank you so much for all of your wise words. They were just what I needed to hear. I'll try and think about the 'small wins' when it all feels overwhelming @lemonbalm.

Thanks again x