Feeling Overwhelmed

LydiaP

Hello, I am here to learn about this diagnosis and to get support in making choices in the best interest of my aunt as well as those of us who are caring for her. My aunt has been diagnosed with dementia with psychosis in November. She is 83. She has no spouse or children and she has been living alone in her home since my grandmother died over 15 years ago.

I believe my aunt has been dealing with cognitive decline since her heart attack in 2016 but dementia has been apparent for a few years. Currently myself and my three sisters are trying to manage her care and have no other support from my aunt's dozens of extended family members who live locally. My sister's and I live 30 min away and cannot sustain the 24 hour care that we have been told she requires by local police because my aunt has called 911 numerous times due to hallucinations.

We are actively in the process of trying to move my aunt into a memory care group home but she is manifesting every obstacle possible due to her personality and the dementia.

I am currently her POA for financial matters but I am realizing she has no conception of what that means and her dementia is presenting in ways that really lead me to question her capacity. I am considering asking her to revoke the POA because I am not sure I will have any ability to assist in what she needs due to the authority she still has even with the POA. There is no medical POA or other directive besides her will.

I am afraid she will be asked to leave the care facility she moves into. No one can take her in at their home. Her current home is in disrepair and she has ignored years of maintenance so in-home care is not feasible. She does not believe or grasp the dementia diagnosis. She only gives some adherence to her cardiologist and says terrible things about her neurologist, PCP and her therapist. She refuses to begin taking her dementia and anti-psychotic medication because the neurologist prescribed them and she doesn't trust him. She says she refuses to be sedated and already takes too many pills.

My sister's and I already filed a case with adult protective services to see what care options there were and they closed the investigation stating she was competent and not eligible for services. I was flabbergasted by that finding...the same with Hospice care.

I would appreciate any insights. This is not even my parent...

M1

Welcome to the forum. Have you reviewed your POA with a certified elder law attorney? You may need to file for guardianship, in order to have the authority to hospitalize her and/or make a change in her living situation. so sorry you are facing this, this forum is a good place for support.

harshedbuzz

@LydiaP

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I agree with @M1 in terms of having the POA vetted by a CELA. It may be that your aunt's disease progression is such that she would no longer be deemed competent to revoke the POA or re-do it to give you broader powers. You may have to move onto guardianship. A CELA can advise. A friend and an aunt of mine were forced into doing this for their LOs. It was a bit more time consuming and expensive, but costs would be paid for by your aunt if necessary.

Your fear about acting out and being asked to leave are justified. If she is struggling with delusions and hallucinations, medication is generally the answer. We took dad as an outpatient for medication management to help dial back this sort of thing and the agitation it triggered.

In shopping for a MCF for her, be up front about how dementia impacts her. You don't want to select a place that cherry picks residents to include only the pleasantly befuddled. Ask, when touring, what would get her asked to leave. Often, a PWD will be sent for a short stay at a geriatric psych unit to get meds fine tuned. From there, they often go back to the previous MCF or the social worker at the hospital will help find a place to which she can be transferred directly on discharge. You can refuse to accept custody even as her POA.

Some resources-

Understanding the Dementia Experience (smashwords.com)

Tam-Cummings-LLC-Handouts.pdf (tala.org)

HB

Phoenix1966

Welcome and so sorry for your situation.

I have been where you are with my grandmother. While she had granted me medical and legal POA, she held onto the documents and the military base law office only issued one copy(that warning was printed right on the cover sheet). So I had even less recourse than you. And, like you, I decided to eventually reach out to APS when her well-being was in jeopardy. My grandmother was a level 5 hoarder(stacks of produce boxes with rotted food, dog feces throughout the house, barely any move to walk because of all the “stuff”), she was unkempt(had stopped any personal grooming and was becoming incontinent) and all this was clearly visible to the APS investigator. They left her in place as well.

From my experience, you only have a few choices. You can apply for legal guardianship(expensive and not a quick process) to be able to help place your relative. You can wait for the catastrophic event to happen and emergency services have to take her to the hospital when you will then be able to step in. Or you can walk away.

Please read the handouts @harshedbuzz linked to. If you decide you are in this for the long haul, these articles will help you navigate this terrible disease your LO is suffering through and see the world a little through her eyes. For example, many people with dementia also suffer from anosognosia, which is a neural condition that prevents them from recognizing their physical or neural deficits. It is not denial. The more familiar you become with some of the common symptoms your aunt has, the better you will be able to address them.

This is a miserable disease that casts a wide net in who it pulls under. Please keep coming back to vent, ask advice, etc.