Hi everyone, I dont know where to start, but my mum has End stage COPD and 6 weeks ago was given days/weeks at most and we had to call family to come to see her, myself and siblings dropped everything to care for her at home 24/7, weve had fantastic support from St Peters Hospice and the District Nurses, she now has a syringe driver and catheter as she is too breathless and agitated to get out of bed, today she was reviewed by St Peters and we were told that as she hadn’t deteriorated as fast as they thought they may withdraw hospice at home but still be involved, So as a family we knew we would care for mum until the end as we were initially told days/weeks, but now weve been told this could go on for months we wont be able to sustain 24 hour care as a family, Im heartbroken as mum has no quality of life and feel that if we cant look after her we will have failed her, her medical needs are overwhelming and we have no idea what to do next, Im sorry for a long post and sorry for everyones losses, I can empathise as we lost our dear Dad suddenly 7 years ago, thanks for letting me get this off my chest x
I’m so sorry you are going thru this , like you I’m looking after my 92 year old mum in her home , she was fast tracked and I was told suddenly things were very near the end . That was 2.5 months ago , she is now eating again and although bed bound seems to have improved , good news but sadly she has got used to me being here and I have a husband at home still in recovery from life changing cancer surgery … and now feel I am neglecting him …life is suddenly very very hard and we have no carers as mum only wants me but also seems not to accept that my husband in a way now needs more care … I have no idea how long all this will go on but it’s an emotional rollercoaster and physically I’m on my knees xx
Hi,
I’m sorry to hear you are both going through all of this right now. My mom passed 4 years this April, brain tumours, but because it was during COVID we had to care for her at home, so I can say from experience that caring for a loved one in end of life care is both exhausting & traumatic 
, my heart goes out to you both.
@pipdi777 , you haven’t failed your mum, people are not machines, it’s ok to say, “I/we need help with this,” it’s understandable you want the best care for her. & You don’t need to say sorry for writing a long message, we’ve all needed to unload at some point, feel free to talk on this forum as much or as little as is comfortable.
To @Glastogirl1970,
It sounds very hectic having to juggle your mum & husband, it’s understandable you can’t be in 2 places at once, but it feels so unfair to have to choose between to people you care about , is there anyone you can ask for extra support? Can the doctor not help sort some help with your mum’s care? Look after yourself.
Sending hugs of support to you both 
Thankyou for your support , I did dads end of life alive during Covid at home , hard times and Marie curie just came the night before he died they were like angels . Mum has had the option of carers but has declined even though all free as fast tracked and bus I find myself upset ( internally)that because of that decision and that she only wants me and expects me that my husband is doing without my care ( he has stoma bags etc) my mum has said tonight ( it made me cry) that o may as well go as she’s on her own so much when I go home to see my husband ( I’m with my mum over 20 hours in a day) I’m finding it all just too much her lack of appreciation of how much I’m giving … and obviously have given up work six years ago to care for dad and mum , sorry shouldn’t burden everyone with this x
@Glastogirl1970 On this forum, you’re not burdening us, You’re unburdening yourself.
End if life care is exhausting and traumatic but we do it because we love our family dearly.
What we forget is that we can’t look after others if we dont look after ourselves first.
I’m sure your mum is really scared but I do hope you can find some way to explain to your mum that you need some help too…maybe a night sitter or just someone a few hours during the day.
Hugs