Huge Guilt

[Dorothea]

Dear all, Im hoping to I suppose gain some support and advice here as Im sure you know its not everyone you can talk to about losing a loved one to Alzheimer.

My dad went into a nursing home 6 weeks ago. While he was probably at the later stages, he was mobile and would eat albeit it not a lot. He reacted very badly to the nursing home even though we visited every day and spent long periods of time with him but he wanted to go home to my mum who was unable to cope even with what support i could give. He is now not mobile and refusing food and drink to the point that they have told us he is at the end of life stage. My mum cries continuously because she feels she triggered this by putting him in a home as do I , I feel I should have done more despite having 4 of my children to care for and many times they were sidelined. We are with him practically all the time now at this point of his journey and the home are very caring but will this 'guilt' haunt us forever? Will I always feel guilty for not being there sometimes and that I could have done more? And if I had done more he might not have needed to go into care. I will admit sometimes it was so intense and stressful that at times I avoided going to my parents home but that wasnt frequent and mostly i tried to be there for both parents. My poor mum I feel will never get over it. She cared so well for him but ran out of steam and she feels that after all that care he had at home that in the end of his life he was distressed and unhappy. thanks for reading.

 

[60's child]

Hi Dorothea
I am so sorry to read your post and totally understand why you are feeling guilty however, Sometimes I think you are between " a rock and a hard place" when caring for someone with dementia. While your Dad would have deteriorated at some point anyway it sounds like your Mum would have been at risk of health problems herself if he had remained at home.Your 4 children also need to see their Mum so it does not sound like you had an option? Guilt is my constant companion since caring for my Mum. Whatever I do it is never enough because I am unable to stop the inevitable deterioration. So very hard
I am so sorry, I totally understand why you are feeling like this but it does sound like you were running out of options. Please be kind to yourself.
x

 

[stanleypj]

Hello Dorothea, and welcome to TP though I'm so sorry about the very sad circumstances that have brought you here.

I think you should try hard to put away your feelings of guilt. I think all carers have them at some point and it's not easy to deal with them.

But the fact is that when you decided on the nursing home placement I'm sure you had given it a lot of thought and decided that it was the best thing all round. No-one can ever be sure how the disease will progress and there's no way of knowing how your dad would now be if you had made a different decision.

Also bear in mind that when end of life stage is mentioned, that does not necessarily mean that the end is near. And sometimes people rally.

When someone is 'refusing food' it is worth asking if other possibilities have been considered, e.g. an infection, particularly in the mouth or throat.

Whatever happens now, you should be able to concentrate on doing what you can to make sure that he is being well looked after without spending time on the 'what ifs'. I'm sure that many who have been in this or similar situations would say the same.

Take care

 

[Wolfsgirl]

Really agree with this and would also suggest you reassure your Mum that she did her very best, as in my opinion did you, she did not choose or cause this illness.

End of life makes you think it is going to happen very soon, well it is what I thought and the gp thought Mum only had days to live - this was in the middle of May. Did you know the illness stops people from feeling hungry and thirsty? Mum is still hanging on, just going to see her in a few minutes actually.

Please appreciate whatever time you have left and make it quality for you and your Mum instead of anguish, if you possibly can x

Hello Dorothea, and welcome to TP though I'm so sorry about the very sad circumstances that have brought you here.

I think you should try hard to put away your feelings of guilt. I think all carers have them at some point and it's not easy to deal with them.

But the fact is that when you decided on the nursing home placement I'm sure you had given it a lot of thought and decided that it was the best thing all round. No-one can ever be sure how the disease will progress and there's no way of knowing how your dad would now be if you had made a different decision.

Also bear in mind that when end of life stage is mentioned, that does not necessarily mean that the end is near. And sometimes people rally.

When someone is 'refusing food' it is worth asking if other possibilities have been considered, e.g. an infection, particularly in the mouth or throat.

Whatever happens now, you should be able to concentrate on doing what you can to make sure that he is being well looked after without spending time on the 'what ifs'. I'm sure that many who have been in this or similar situations would say the same.

Take care

 

[handyjack]

Dorothea, how sad that your mum has this feeling of guilt, when she really shouldn't. In my work, I meet people with exactly the same feelings of guilt as your mum has. How long had your father been diagnosed? I've seen relatives who have tried (unsuccessfully ) to cope with a loved one suffering from dementia. They all feel they could have done more, when in reality, they've done all they possibly could have done (and more besides) It's a dreadful illness, taking a bit of a loved one away day by day.
Please try to re-assure your mum that she has nothing to feel guilty about. (hard to do I know, but do try).