Mum's 88 years old and until about 2 years ago has been very independent and led her life the way she's wanted too. We live about 100 miles away from her which is about 2 hours 20 away and I visited her weekly until Covid when she moved in with me, she has dysphagia which means she can no longer eat or drink very well. About 5 weeks ago she wanted to move back to her own home against my wishes but within a fortnight she had a fall and was admitted to hospital. She was told she had MND and there was nothing they could do for her (she is only 70lbs) and l was told she'd deteriorate quickly, she asked me to take care of her until the end. So 3 weeks ago she came home and I and my husband moved to her home away from our children and grandchildren as she asked. However, she seems to be getting better although she is only having a pint of fluids a day which includes soup and custard she seems to have settled into a nice routine and only really wants me to feed her and tend to her personal needs although we do have carers which she hates. The trouble is I don't think I can continue to put my life on hold, she shopped for my grandfather for years before he died and always promised me she wouldn't put me in the same position but this is worse. I left her today, my brother who lives overseas has come over thinking she was going to die soon he's agreed to look after her for a week to give us a break but I feel incredibly guilty having left her but dont want to go back there, my brother can't stay here indefinitely and she wont entertain going in a home. I think my question is how long can she live on the fluids she's taking? I need to know roughly how long I will be in this position. I feel bad asking, I'm not a selfish person and have always been there for her even though she hasn't been there for me but I miss my children and grandchildren they are a big part of my life and I'm beginning to resent the time I'm missing.

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This break with brother is your opportunity to adjust the schedule. It’s doubtful he has done the hands on you have done. Hopefully the caregivers have had an opportunity to make friends with increased responsibilities.
I will make some more assumptions. Your mom has had time to adjust mentally and physically to her new normal of having this condition. Part of her ability to do that was thinking she had you and she has had.
You see now this could go on and on. You have to pace yourself.
If she is competent to make her own decisions tell her what you are willing to do.
Come once a week, pay the aides, check on things. If you choose.
Help her find a facility if that’s what she needs. You have your own life to live. You can’t live hers. Get her legal affairs in order. Things a POA might help with.
She has shown herself to be resilient in the past. She’s had a shock. So have you. But brothers visit gives you an opportunity to go to phase two. There will be several before she’s gone.
Read Atul Gawande’s book. “Being Mortal”. It might be helpful.
You are on the right track. We all have these stages to go through if we live a long life. This is hers. Not yours.
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Sadtimes Jul 2020
Thank you for your advice it is appreciated.
From what I read, this desease can last a long time. It is continued weakness meaning Mom will need more and more help. Glad brother is watching her, then he will understand what you are going thru. It may end up what Mom needs not what she wants. You may have to eventually place her.
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You may be in this position a long time. Joan Didion has been living at about 75 pounds for a decade. I am just saying, at a certain point people's bodies adjust. And then again, this may be close to the end. The point is that you cannot know. You should likely get hospice in at the very very least. Start there. And if, after you consult with hospice, it seems that Mom is actually improving, you may have to opt for placement. You may have to own that you cannot do this, that the burden on you is too much. As to whether she cannot "entertain" the idea of going into a "home", the fact is that aging as we are in America takes one thing at a time the choice from us. I am 78. I can't entertain losing my mobility. But it will happen. I cannot entertain losing my eyesight, but I feel it happening. I cannot entertain leaving my own home, my own ability to garden in my garden. But it will happen. Old age is, to put it bluntly, one loss at a time, culminating in the very loss of our lives. Is it sad? Yes. Is it worth fighting with all your might? Yes. Is it worth grieving and feeling awful about? Yes. But it will happen nevertheless. I am so sorry for the choice you are being forced to make. I would call in hospice now for their help and support, and to insure that only palliative care is rendered now; there is no upside to fighting this. And I would follow their guidance, knowing your own limitations. You aren't a Saint. You are a person with a life and with limitations. Recognize and honor them, as you honor that you are a caring woman attempting to do your very best.
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