How do I receive more help?

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Hi there. My brother and I are the sole care givers for my 55 year old mother who recently transitioned to hospice at home.


My brother has mild autism and mild cerebral palsy. He is lucid and able to carry out Day to day activities. I work full time and the 3 days I have free, as well as, evenings after work...I am at home with her. I don’t sleep. Maybe 15-25 hours per week I get.


Her main is of hospice is copd and emphezema.


She also has bipolar, dissassociative personality disorder, high blood pressure and shows signs of severe narcissism. She refuses to take medication for her mental health and refuses to see psych. My brother dropped out of college and is stuck paying back $3000. However is unable to work because he needs to stay there 24/7. I stay there as much as possible to give my brother time to himself. I do get stressed out easily lately. My mother and I do not get along much because she continues to consume vast amounts of booze and smokes 2 packs a day on oxygen that her boyfriend provides her. So it’s a safety issue that hospice knows about. I need help. I do not want to continue this anymore. I know this is selfish and I know what you’ll think of me. But I need help with her

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I heartily agree with all the suggestions and sentiments above, and also want to urge you to do what you need to do for your own health. So, an average of 3.5 hours of sleep a night?!! That is extremely dangerous for both your mental and physical health. You deserve much better. Thinking of you and your brother.
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Reply to SnoopyLove
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Do you have a prognosis for your mother? I know they cannot give exact predictions, but does hospice think Mom is actively dying at this time? Do they have any sense of how close she might be to the end?

I'm thinking that if she is likely to die in a few weeks, maybe gritting your teeth and bearing this is the most expedient thing. But if this may go on for many months, then it will be worth trying to change.

Can her boyfriend stay with her for specific shifts? He ought to be good for something besides providing cigarettes, right? Does Mother have additional income or assets to pay for additional in-home care?

Would moving her to a hospice facility be feasible? That would give you and your brother much greater flexibility. There would be a "rent" charge not covered by Medicare. Sometimes there are "scholarships" available for those who cannot afford that. Discuss this with the hospice nurse.

You and your brother both need some respite from this situation. I think what you are trying to do is noble, but you are certainly entitled to provide less hands-on care.
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Reply to jeannegibbs
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Ashstraz, we don’t judge. We don’t “mollycoddle” posters either. We call a spade a spade, and if posters deserve to be told the obvious, count on us, albeit in a nice way.

This is a toxic situation of your mother’s making. She has treated her children no better than cockroaches in her house. She is mean, nasty and uncooperative, right? She’s pretty much ruined your brother's life even when he was trying to make something out of himself. Now, she’s working on yours.

Consult with her physician, especially the Hospice Team. They know her and will be able to direct you to more help. Not for private information they won’t be able to reveal to you, but to ask for help in finding help. Call your local Jobs and family services, Agency on Aging and even Adult Protective Services. Speak with your religious leader. Any family around? Vent to them. Good luck!
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Reply to Ahmijoy
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