Mom is 92 and has been bedridden since breaking her hip last August. She tried rehab but did not like it. She has been home since September and has palliative care and is paying for a home health aid for 8 hours a day. I am the caregiver the rest of the time. I have a brother but he is not able to help due to drugs and now a restraining order.
This past week my Mom was in the Hospital after trying to get out of bed at 4 a.m. The Social worker suggested a Board and Care facility so checked out a facility and Mom was supposed to be released and sent there. When the Medical transport arrived she refused to go. She said things like how can you do this and I do not care about the money. Mom is now home and the palliative care will be ending. The social worker has suggested Hospice but Mom is still thinking about it.
Mom is also does not want to have her diaper changed regularly and one of the reasons we have the home health aid is to help me with this. My Mom did have a will as well as an advanced directive and power of attorney directive written up years ago. Does anyone have any advice?
Paying for in-home aids 24/7 will eventually be more expensive than a facility, and you'll be the one managing it. Your Mom getting out of bed at 4am is exactly how my Aunt with dementia fell and broke her hip. Has your Mom been checked for a UTI or any other type of infection? Often the only symptoms are change in behavior, confusion, etc. so she'd need testing and antibiotics.
A tactic to get her into a facility may be to assume she has an undiagnosed UTI and call an ambulance to take her to the ER for testing. From there you tell the staff she is an "unsafe discharge" and arrange to have her sent directly to a facility "for rehab". Then she stays there.
I don't see you mention if you are her PoA. Her having a Advance Healthcare Directive is not in play right now, and neither is her having a Will or Executor. She needs an active PoA to make decisions in her own best interests.
Is anyone her PoA?
You know your own mother better than a social worker does. Her regular primary care doctor does too and if your mother is still of sound mind, she can make her own decisions even if she is bedridden. The three of you, not a social worker or nurse should be deciding whether or not she gets placed or goes into hospice care.
Now you have to make her understand that if in-house rehab is still an option, she has to go and do it. I did homecare for a long time (25 years) and in that time I found that the most common reason a senior lands in a nursing home permanently is stubbornness. They won't cooperate with the smallest of preventative measures to keep themselves well and safe. Even the most basic things like allowing a home to be cleaned and de-cluttered. Or basic safety measures like walkers, and bath chairs. Or allowing assistance with hygiene care and medications. Or they refuse comply with rehab and PT because they believe that's the last stop before a "home".
Then there's the fighting against homecare because they convince themselves they're still independent. Or they demand only certain family members are allowed to help them. So they double-down on the stubbornness, demands, and often verbal abuse towards family because they think that will keep them in control.
Please see if rehab is still an option for her. Then check out caregiver websites like care.com and put up a profile of exactly what level of caregiving you're looking for that your mother needs. Then you make yourself understood to her that you WILL NOT be a caregiver to her. That your diaper-changing and days of miserable drudgery for her are done. If she's still mentally sound make her understand this.
Don't get talked into hospice just yet if it's not necessary. If the hospice will be done at home, all your mother is going to get is plenty of drugs that she likely does not need and a nurse who will check in and do little to nothing a few times a week. She'll get a bath aide who will be paid to clean her up and be there a couple hours a day (if you're lucky). She won't get any more physical therapy
You just tell her that if she chooses to remain at home that you will NOT be caring for her anymore, and that she'll have to hire 24/7 care which will end up costing her WAY more than a facility would. But it's her money and if she chooses to spend it on 24/7 care for herself that's fine.
And if you live with her, then it's time to find a place of your own, and let your mom live out her days as she thinks she wants with her 24/7 caregivers.
It will only be when your mom can no longer act on her own behalf that you will be able to get her placed in the appropriate facility.
No one should be forced to do this . Mom forced this on you when she refused to go to the care home . And now she is uncooperative with incontinence care . This is a “ No , I will not be the caregiver “ in my book . When they get uncooperative with incontinence care , it’s time to be taken care of by NON family . Your Mom wants to be in control, and be the boss of you , her child . Caregiving should be on the caregiver’s terms .
Hospice will not send a lot of help. Most of the hands on caregiving would still be on you .
You have taken care of all documentation.
You do not mention that your mother suffers at all from dementia.
You have chosen to do this caregiving in your home ongoing, and to allow your Mom to make decisions as to what she wants and what she does not want to do.
Can you tell me exactly what you are seeking our advice on?
You have asked us the question "What to do". What to do about what, exactly, I am wondering.
Thanking you in advance, and wishing you the best.