Why do my mother's worst problems seem to only begin at night? 2-3 am is usually my final wake up call, but I am up all through the night.
I am 67 myself, disabled with degenerative disc disease as she is. at times she is dead weight to get her on her bedside toilet. I have started finding her only when she has stripped off her diaper and the bed is soaked and/or soiled. Other times she calls me, but sometimes she doesn't remember I am there to help, so she tries to get up despite being in a hospital bed with the rails up.
I can never leave her alone and hospice is limited in when they can be here for us. I/we have some money, but it would soon be gone paying the rates asked for caregivers to come enough to give me some relief. I WILL NOT send her to LTC.
Any advice? I'm at the end of my rope and she has very aggressive cancer, so it will only get worse.
You ask us why these problems are worse at night, but that's hardly the question here.
The question comes down to this:
"What can be done when very ill people are being cared for by someone who is herself ill and overwhelmed".
The answer comes down to money and the hiring of help.
And if there is no money, in all truth, when there is the pre-stipulation that LTC won't happen, there IS NO ANSWER AT ALL.
I am sorry to be so blunt, but this isn't sustainable. I think you understand that.
Your loved one is in need now of several shifts of several caregivers each shift.
I wish you the very best, and would love to have any answer that can help you. I hope others are more adequate to your question than I am.
I know you are adamant you won't send your mom somewhere, but the situation as you describe it is not sustainable. She will only get worse and need more care, and you are already at wit's end.
How long until someone can get into the house to find you there? I’m not creating a fantasy scenario here. My sister, at your age and with exactly those same kind of back problems, ended up on her bedroom floor in the middle of the night when trying to get to the bathroom. She had insisted she could do it all alone, by herself, and wouldn’t let anyone help.
She almost died on that floor, spending three days lying there in misery, unable to get to a phone. A neighbor finally saw newspapers piling up and looked through a window to see her. She never walked again, and recently died through doing the same sort of “I can do it all alone without long term care!” Adults have the right to make their own choices, no matter how bad those choices are.
Reread Alva’s comment again carefully. She is correct.
Good luck to you.
Hospice is covered by Medicare. In-home hospice will take 2 days to set up after she's been approved for it. In-home hospice doesn't relieve you of your caregiving duties and work. I just went through this with my Aunt this past January. I followed her wishes but for myself, I will not insist upon in-home hospice. Find a good, reputable hospice facility and tour it in advance. Go into this with your eyes wide open so that you can protect your own self for life after your Mom passes.
For the record, my MIL was in a fantastic, faith-based LTC facility for 7 years. She got excellent care there -- better than I could have ever given her at home, and it was not top dollar. It was 3 miles from our house. Are there bad awful facilities? Yes, but inbetween are many gems. Do research now so you don't have to do it in a crisis.
Sounds like the facility respite you recommended would be a good fit, since the poster said Hospice is limited in when they are available.
She might want to try a purewick system if the Mom is only fidgety when wet.
Because of that you are doomed to continue as you are until one or both of you dies.
I'm so sorry it's played out this way. Only you can change it.
Mom needs the help you simply cannot keep giving her. Do what is best for her!
I am very sorry about your mother's situation. Your situation is no longer sustainable. She will have to be placed in long-term care facility, whether you like it or not, or your stress may kill you. Then what happens to your mom? Your own health and safety come first.
That's what long-term care is for, and you yourself may face it someday.
Please be advised that your mother's funds pay for her own care, and do not expect to inherit any money from her. If you mother's funds will soon run out, it's time to contact her county's area of aging counsel with a Medicaid expert for her financial assistance.
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