Urgent Help Needed - Not Being Met. How can I help my aunt get the care she needs?

Hi all -

@@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.

I seriously seriously DOUBT your uncle is 'working on all the paperwork with the attorney'. Once the Medicaid paperwork is completed, it's SUBMITTED and that's the end of the road until a decision is made by the state. Your uncle is either stalling, lying, or hasn't even hired an attorney to 'help him' b/c he doesn't want to spend any money for his wife's care in a managed care environment, that is my opinion on the matter. OR, he himself has dementia also and hasn't a clue about WHAT is going on, and is incapable of 'filling out forms' to get anything accomplished. It does not take 'months and months' to fill out a couple of pages of forms.

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!

You're so close to the answer! - call APS. Just Google their helpline number and explain the situation.

R, from your post it sounds a though your aunt has serious dementia and your uncle may be going the same way. If your aunt is really like this, do you think that prolonging her life is such a good idea? Is she happy at home, or is she more or less unaware of things? Or is she in pain all the time? You are ‘bawling your eyes out’, but is she? Many people would think that a quick end to a life with serious dementia is a blessing.

If you manage to intervene, what will happen to your uncle? Can you organise for him to go to the same facility? Will he need care himself? Can he mange his own affairs? Or are you facing a repeat as soon as aunt either passes or moves to a facility?

Try to look past your own reactions, and your own grief that lives should end like this. Unfortunately, they often do!

APS is who you would call, its the same as CPS, but for vulnerable, neglected or abused adults. An option before you call them is to get Aunt in the hospital and then get her into a nursing home from the hospital.

Your Uncle need not fear as there are programs for a 'community spouse' to stay in the home and not be left destitute. However, I cannot speak to that, and there is not enough information to respond.

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.

APS = Adult Protective Services
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?

Thank you for those words. They ring true of my family, to a degree, not this severe by any means, but mom is incontinent and mostly immobile, and if not for dad and our youngest sister, who do everything for her, mom no would have been admitted long ago. Her three older daughters are not in a position to take in elders, me especially, as we are elders. It has nothing to do with love.

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.

From another angle.. what are their wishes?

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?

Where is your Aunt located, and is there an Urgent Care nearby?
Be sure to grab her insurance cards.

Just supporting that you should call 911 if you can't get her to an Urgent Care tonight, no matter what your uncle says or how he reacts. Your Auntie may have another medical issue going on, like a UTI (which can turn septic) or other illnesses.

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!

You can call APS to move things along. What about her doctor?

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.

Call your local Council on Aging and relate what you’ve told here. If they can’t offer pretty quick help consider calling Adult Protective Services, your uncle needs more help than he’s capable of providing, not his fault, but you’re correct in this being urgent. Will he consent to you calling 911 and having her taken to the hospital for a medical evaluation? That’s another possible avenue toward getting your aunt into a safe setting. A hospital social worker has many resources to explore for help. Sadly, “down the road” is now and they’re blessed to have you to care and help find a better solution