my mum is end of life and i feel so sad guilty and frightened of being without her . i was told 3 weeks ago mum had days or weeks. i promised dad i would always look after mum at my home and when dad died in may mum came to live with us as we,d planned- 4 days later mum had pneumonia and was in hosp for quite a while. during the short time mum was with us it became very clear to me that i would not be able to look after mum or do what we and dad wanted. i had been my mum and dads carer in their own home for the last 8yrs, dad cancer, mum alzheimers - we are very close and i spent nearly everyday with them and did anything i could to help them we were still going on holiday together as we,d always done up just before covid but feel i have really let them down on the most important thing- mum is bedridden, incontinent, cannot feed herself, sit up says very little etc etc- she has been the most wonderful mum to me and i dont even know if she knows me. when i visited today in the nursing home she said 'help me' i am now questioning my actions - have i really tried as hard as i could- my daughter asked me had i considered bringing mum back home to us , all mums care for her final days any medication etc has been sorted at the care home but i just dont want my mum passing to be like this t- i want my mum as happy as is possible but i really dont know what to think anymore, please if anyone has been like this i would appreciate any comments.
mum end of life feel as if i haven,t done my best
- Thread starter karenbow
- Start date
Hello @karenbow. You did the most amazing thing for your parents, caring for them both for 8 years. When Dad asked you to care for Mum, he could not have understood the huge decline that Mum was about to undergo. No Dad would really want their beloved daughter to have to cope with such extreme difficulties. To transfer Mum back home at this stage could be immensely traumatic for her, and I know of more than one person who has died within hours of a transfer. That would be absolutely horrendous for you all. Please believe me when I say you have not let them down. Mum is in a place where all her care is planned. As she enters her final days, you can hopefully be with her, as her daughter, whilst allowing the professionals caring for her to do their job. I'll be thinking of you
Of course you haven't let anyone down. You have looked after your mum right up to the final stage and now she needs nursing care - I assume that you are not a nurse qualified in End of Life care. Please do not underestimate how hard it is to look after someone at EOL, even with carers and District Nurses constantly backwards and forwards. My mum passed away in her care home and I found the last couple of weeks harrowing, so I was glad I didnt have to make any of t the decisions.
When your mum said "help me" you seem to be assuming that she wanted to come home, but it may not. She may have been uncomfortable, or just wanted you to sit and hold her hand. Much better to let qualified staff do the nursing and just sit and be with her.
When your mum said "help me" you seem to be assuming that she wanted to come home, but it may not. She may have been uncomfortable, or just wanted you to sit and hold her hand. Much better to let qualified staff do the nursing and just sit and be with her.
Hi Karen
I'm in the same situation as you.
My mum's condition has declined rapidly in the last few weeks. She ended up in hospital after another fall. She wasn't injured but the paramedics weren't happy with her readings. After a week in hospital the doctor said he believed she is at end of life stage. He said she is not "actively dying" of anything but it's just natural progression. Each infection and fall has "chipped away at her reserve ".
She was discharged last Wednesday under fast track continuing healthcare to a care home because I felt I couldn't cope with her at home any more.
Now I feel I've let her down and just want her home again. Two and a half weeks ago I was looking after her all the time and relinquishing that care is so hard. I thought knowing she was safe with professionals would help but I just worry about her all the time.
Today's visit was awful. She was upset by another resident (not intentionally) and was fretting she would follow her to her room. Seeing her upset made me upset and next thing she was comforting me. I'm just not sure any more the care home is the right place. I'm so sad for her.
I hate this awful disease.
I'm in the same situation as you.
My mum's condition has declined rapidly in the last few weeks. She ended up in hospital after another fall. She wasn't injured but the paramedics weren't happy with her readings. After a week in hospital the doctor said he believed she is at end of life stage. He said she is not "actively dying" of anything but it's just natural progression. Each infection and fall has "chipped away at her reserve ".
She was discharged last Wednesday under fast track continuing healthcare to a care home because I felt I couldn't cope with her at home any more.
Now I feel I've let her down and just want her home again. Two and a half weeks ago I was looking after her all the time and relinquishing that care is so hard. I thought knowing she was safe with professionals would help but I just worry about her all the time.
Today's visit was awful. She was upset by another resident (not intentionally) and was fretting she would follow her to her room. Seeing her upset made me upset and next thing she was comforting me. I'm just not sure any more the care home is the right place. I'm so sad for her.
I hate this awful disease.
@karenbow Your mum really is in the best place, she has people to care for her, people who are trained to care for her. I don't think bringing her home now would do her or you any good. I cared for dad at home (alzhiemers and cancer) until he died and it is not an easy thing to do. If only I had been trained I would have done much better. I muddled through with my husband helping me and 2 half hour carer visits a day. It was not enough and I know that now. If only I had been able to just visit dad (I would have stayed all day and night if possible) while others looked after him, it would have been less fraught and worrying.
I worried about relinquishing the care but sometimes the care needed is more than the care that you can provide at home. Also the help that you are promised in your own home may turn out to be lacking or just not enough. You have done so much for your parents and have no reason to feel guilty although I suspect that guilt is just something that carers feel when they shouldn't.
It is a very difficult time for you and it's understandable that you want her home but would it really be the best thing for her.
I worried about relinquishing the care but sometimes the care needed is more than the care that you can provide at home. Also the help that you are promised in your own home may turn out to be lacking or just not enough. You have done so much for your parents and have no reason to feel guilty although I suspect that guilt is just something that carers feel when they shouldn't.
It is a very difficult time for you and it's understandable that you want her home but would it really be the best thing for her.
I agree with the other replies. I know you want your mum to be 'as happy as possible'... but it's really not possible for someone with end stage dementia to be happy. Sadly, she's probably no longer capable of understanding or even distinguishing her own emotions.
You've done so much for your parents - no one could do more. At the care home they have everything they need - staff, equipment, meds, to make her final days as calm and painfree as peaceful as is possible and they are looking after her 24/7. Let them do their job and be her daughter again for her last days.
You've done so much for your parents - no one could do more. At the care home they have everything they need - staff, equipment, meds, to make her final days as calm and painfree as peaceful as is possible and they are looking after her 24/7. Let them do their job and be her daughter again for her last days.
