My uncle is the caregiver for my aunt with very progressed dementia. I see them weekly to bring groceries and visit with them. Over the last 4-5 weeks, she’s had a few minor falls, refusing most of her meds, not bathing, not using the toilet, and now hardly walking. He says she’s afraid to fall again and that’s why she will only walk a step or two and then “try and collapse to the ground” but what I see is her decline and inability to walk.
I told him tonight this is urgent, critical and has taken a rapid turn. What he was planning as “down the road” for her to no longer live at home is here. If she’s not safe and he’s struggling she needs to get the care she deserves.
His response is that he’s still working on all the paperwork with the attorney re: Medicaid/ Medicare. Hes been at this for months and months and I’ve been helping him and reminding him to keep at it etc.
How can I as the “support” engage here to get my aunt the immediate care she needs and keep her safe? If she were a 12 year old I would call CPS.
thanks. I’m bawling my eyes out and no other family to help.
@@UPDATE@@
My uncle agreed and called her primary doc this morning, who advised to call 911 and get to her ER immediately. I think hearing that from a medical professional was enough, and he complied.
We talked this morning and he understands the concerns and his emotions and love are overshadowing the things he knows he “should” do compared to what he wants to do and continue to care for her.
She’s been admitted to the hospital, lots of testing underway, she’s getting the immediate care she needs - and subsequently tomorrow will be more discussion with physicians and social workers to continue the dialogue around next steps for her care.
Appreciate the responses that were thoughtful and compassionate.
All my best to you.
If you wind up taking her to the ER, make sure at discharge you tell them her husband also is debilitated and thus she's an "unsafe discharge". Do not go to get her and don't allow your uncle to go get her if at all possible. She can get transitioned into rehab and then hopefully AL from there.
After this, you will need to help your uncle. All this comotion and sudden change will surely throw him off badly, so give him much assurances that you will help them get through this set back. Ask him for the "paperwork", take him to an elder law attorney who will assess whether he's competent enough to assign you as PoA. If so, then you can legally manage his affairs when you meet the activation requirements. Your Auntie may be too far gone. The attorney will give you more guidance. Take things one day at a time, try to solve one piece of one challenge at a time. That's as much as you can do in such a suddenly messy situation. Bless you for helping them!
complicit if something were to happen.
I can highly recommend the following book:
'Being Mortal: Medicine and What Matters in the End'
by Atul Gawande
I was in a similar spot - I cared & I could see problems. Had that 'must fix & find solutions' feeling. To ensure safety above all. Felt a 'duty of care'.
Now I see it differently.
I see a continuum between duty of care & freedom of choice. Too much duty/safety can stifle & take away rights. Too much freedom gives room for neglect. This end is what you can see with your Aunt - her freedom to refuse care, her nutrition, mobility & hygiene are getting neglected. Yet her Husband may see it differently - may see her emotional & social needs ARE being met. May value them more.
If you had to choose: between 1 year of life, with your spouse, in your own home, with your own routine, many falls.
Or..
2 years of life, in a care facility, unfamiliar surrounds & people, new routines.. slightly less falls.
What would it be?
Just like old farmers or first nations people that stay on their land. Die by misadventure, fall or in their sleep one day/night. But would have withered away in a care facility without their land. They choose what mattered to them.
I have relatives in just this situation. They are trying to walk a middle ground of home but with extra home help services - OT for the right equipment (rails, frames w/chair), dietician advice & Aides to help bathe to improve hygiene.
Could finding out what services are available in their area (Area of Aging) then talking this through with your Uncle be that middle step for your family?
thanks again for the kind words.
If you know who he's using as his 'attorney', call him. See what's really happening on that front (or not happening, as it were). Once you know the truth, THEN you can make an informed decision moving forward.
Call 911 if/when you see an emergency situation unfolding, and get your aunt to the ER for an evaluation. Then use the 'unsafe discharge' words explained by others.
Being left alone to live or die at home with advanced dementia is one thing, but if your aunt is being neglected, not toileted, unable to walk and she's scared and upset, that's ANOTHER matter entirely. We all deserve to die with dignity; not by falling and being left there b/c the spouse is too addled himself to know WHAT to do, shuffling papers around on his desk. Big difference. We all want to die at home with soft music playing in the background, surrounded by loved ones sniffling and smiling, without pain and waiting for the angels to come call us home. What we DON'T want to do is die alone after taking a bad fall and being scared to death while not knowing WHAT TH is going on!
Best of luck trying to get help for your aunt who sounds like she really needs it!
So sorry about this, your uncle is not thinking clearly, this is a familiar problem, many worry so much about using their money that they neglect a LO.
They have the legal power to intervene, the police or sheriff come too.
Better to just get the care needed, have her seen by a doctor. Any way you can.
If you find her ill or distressed, you can call 911 for help.
Is your Uncle ill?
many thanks.
Others can help with that, as well as a social worker/discharge planner at the hospital.
The immediate medical needs come first, are a priority.
The real help often comes only after a trip to the ER or hospital. A crisis, then a crisis intervention.
thank you again.
I am there for when they will let me help more, while they’re in their own home, but a crisis is ahead, that will determine our future, and since I live Odaat, for my sanity, not worrying anymore. Just staying flexible.
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