I was told by my mother's doctor to come to see her immediately. She hasn’t been officially diagnosed with end stage liver disease but everything points in that direction. They said she had days to weeks to live and needed to go on hospice. She was receiving hospice services at the hospital until I figured out what I should do. I finally brought her to my own home for hospice. It is a terrible nightmare. She has been an alcoholic my entire life. She has Ascites and swelling in her feet and her cognitive abilities are questionable. She is refusing all medications now that she isn’t in the hospital. She eats very little and is incredibly weak. I don’t mind caring for her but I am nervous about her refusing medications. The doctors said she should take them but there isn’t a clear answer as to whether or not she HAS to take them. I don’t mind taking care of her but she is also difficult and I have to help her do most things which I don’t mind except that she wants to smoke a lot and I have to constantly stop what I am doing to take her outside. She can barely get to the bathroom on her own but will wobble and crawl to get outside and smoke. I’m not sure if I should bring her back to the hospital or if this is the natural course and I should let her do what she wants because her condition is considered terminal anyway.
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Why? As in, what for? Did you actually get in touch with the doctor to ask?
https://www.medicare.gov/coverage/hospice-care
Your Mom can't be forced to do anything. If you take her back to the Hospital, she will be discharged from Hospice. Not sure if the Hospice facility room is paid by Medicare. Usually only the services are.
You need to call the Hospice Nurse with your concerns. She should be available to you 24/7. If not, find another Hospice.
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The nurses are incredible! The social worker was very helpful. If you are religious they provide clergy too.
He died peacefully. Best wishes to you. I’m so sorry that you are struggling with this. It’s hard.
Taking her out for so many smoke breaks seems so draining. I mean, I understand she is on hospice but smoking is so bad for you! Was she able to smoke while at the hospital? I doubt it. Can you put her on a "schedule" for smoke breaks so she is not constantly asking you for them?
How long has she been home with you?
Remember too that you can always have mom placed in the Hospice facility near you, if needed instead of the hospital. She will get much better care in a hospice facility than you she ever will under home hospice care. Trust me I know. My husband was under home hospice care for 22 months(his choice, which I honored), but as you already know, 99.9% of your moms care falls on you. The nurse will come once a week,(more if absolutely needed) and an aide to bathe her 2 times a week.
And remember that hospice is not God. Only He knows when it's your moms time to leave this earth. I was told 4 different times in the 22 months my husband was under their care that the end was near, and he lived until Sept. 14th of this year. So hang tight. You might be in for a longer ride than you were anticipating, but try to enjoy any and all time you have left with her. May God bless you and keep you.