desperately seeking advice for unique situation

dgia

Hello everyone, I’m new to this board and am hoping some of you can offer me some advice because I have no idea where to turn. This is all really a lot so I appreciate all of you who take the time to read it.

My aunt and uncle both started showing signs of memory decline approximately 10 years ago. No matter how hard my mother and I tried, we could not get them to go see a neurologist. Finally, 3 years ago, my mom convinced them and took both of them to get checked out. My aunt was diagnosed with Alzheimer’s and immediately started on medication. My uncle did slightly better on the memory tests and was told he just had “slow brain function” and to take B12 and exercise and he could possibly improve. Since then, they have both declined significantly. My mom took them both back to the neuro and now my uncle is diagnosed as having Alz as well and was started on medication. My aunt has started to become very verbally abusive with my uncle which just stresses him out and makes his symptoms so much worse. She is also experiencing psychosis from time to time. After seeing them at my mom’s house recently, I am certain that neither of them are keeping up with their hygiene or doing any laundry or any type of cleaning. My mom makes their medicine for them weekly but it keeps coming back with only a few days here and there taken out. They have always been people who secluded themselves from others if possible and they have never been the type of people to have family or guests over to their home. They just didn’t allow it. I was last at their home approximately 15 years ago and things then were messy/cluttered so I can only imagine what it is like now. We have tried talking to both of them that it is time to move in some where that can help them but of course they are both adamantly against it. I think if my aunt got somewhere she would be fine and could be happier but my uncle is convinced there is nothing wrong with him except slight forgetfulness here and there. As soon as he found out it cost a lot of money to go to a facility he immediately shut down and refused to talk anymore and said he would take care of my aunt until she passed away. The trouble is, he doesn’t realize he’s not taking care of her now. He’s not even capable of caring for himself. The money thing is not a new symptom though. They have always refused to spend their money. For example, we live in Central Fl and they never would have an air conditioner put in because they didn’t want the power bill to go up. Now his obsession with not spending a dime has just gone up significantly. Also, it really bothers me because I know there are guns in the house. Many. That is the one thing they would spend money on consistently. My uncle is ex military/police and always thought he needed as many as possible in case the government tried to take them away. My mom took them to the bank the other day because they needed money for groceries (they also have never trusted debit or credit cards) and my mom was floored that they have 60k in their checking account. They have always lived as though they have nothing. So even if they finally agreed to get help they have way too much money to be on Medicaid but not a steady flow of income that would pay for them to be in somewhere very long. They do have one daughter that lives 4 hours away. She is quite successful and could pay to have them taken care of but she has already let it be known she doesn’t want to be involved right now so my mom and I are trying to help as much as we can. I’m scared though. This is stressing my mom out so much I’m afraid I’m going to lose her. She is trying to help any way she can like by making their meds, cooking them food, going to all their appointments with them, etc all while trying to keep her small business afloat. We are both willing to do whatever we can to ensure they are safe and taken care of but we are so limited when we can’t even go into their house. I don’t want anyone to be upset with me, but I can no longer not take more action. I just don’t know what that action needs to be. I know that they cannot take care of themselves and need help either in home or in a facility, but I just don’t know what to do or how to make sure they get the help. They are both suffering and don’t even know it, but I do and I have to help them in some way. All of their doctors, including the neuro, are shocked that they still live alone but never offer any advice about it and we just don’t know what to do. Any help with some or all of this sad, complicated, frustrating situation is greatly appreciated. Thank you all so much.

M1

welcome to the forum. It sounds like you need to call Adult Protective Services. Someone needs to be appointed emergency guardian for both of them. Sadly this is more common than you might think.

ronda b

M1 is so right. That is your best answer. Either the daughter will have to step up or the will be assigned someone.

cdgbdr

I totally agree with contacting Adult Protective Services. You can do this anonymously.

H1235

I agree. With dementia there is nothing you can say to convince them they need help. Can you get into the house while they are out with your mom? This would help you with how critical the situation is. Maybe even take some pictures. I know this sounds wrong, but the situation in their home may be very very bad. I picture adult protective services moving slow (I’m not speaking from experience , just guessing) and knowing how dire the situation is would be helpful. If there are any up and coming doctors appointments I would see if you could get something in writing saying they should not be living alone. You might even be able to get this without a visit. Work with your mom to document as much as you can. I would think you would want to present everything you can think of to adult protective services. Do not leave out the part about guns. Finances can be figured out after they are safe. I assume the conversation with the daughter was blunt and explained how bad the situation is. If not maybe it time to make the situation clearer. Then again she might be more problem than help. I assume they are not driving. They are lucky to have you and your mom looking out for them. Good luck.

Iris L.

I think you should push the daughter more. "She doesn't want to be involved right now." When? They need help, now. As long as your mom and you are taking on the load of caregiving, the daughter will not step up, because caregiving is hard work. Is she hoping for an inheritance? Whatever funds they have needs to be spent on their care. A public guardian will sell their assets and install them in the first available facility.

If you cannot go into the house because it is too cluttered, the fire marshall or the city may have something to say about whether they can continue to live there.

These problems are not unusual. You might also call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant for personalized advice. One is available 24 hours a day and there is no charge for this service.

Iris

Phoenix1966

Does any family member hold a durable POA(Power of Attorney) for them? Medical and Financial POAs will be extremely helpful in trying to get them out of their current living situation and into a facility of some sort. Also, meeting with a CELA (Certified Elder Law Attorney) will be helpful to find out how to qualify them for Medicaid and if any of their assets can be protected.

If you do decided to contact APS, lean heavily into your concerns about the guns. I say this because when I reached out to APS to try and get them to pursue guardianship of my grandmother, they left her in her house despite her disheveled appearance, the obvious hoarding/filth of her home and the overall smell. They told me they did not consider herself to be a danger to herself and others. I’ve included some pictures to show you what they saw(two member from the local Council on Aging went through parts of the house I’ve pictured and left her there.

The first picture is her at the front door(I did not include her face), the second is a closer view of the main room behind her(which was the cleanest) and the last is of her kitchen, which they walked by when they sat down to talk to her.

I took hundreds of photos, shared them with her doctor, APS, etc. and no one stepped up.

Have a Plan B, in case your APS is as useless as mine was. You may just have to go to court to apply for guardianship of them, which can be costly.

SDianeL

what others said except I would call the daughter and tell her that they need help now and list the reasons why. Tell her you will contact Adult Protective Services if she doesn’t get involved.

harshedbuzz

I am so sorry. This sounds heartbreaking.

A guardian needs to be appointed. You'll need to act quickly as Florida is quick to assign professional guardians. Their home and assets would be liquidated to provide care but family would have no input as to where or even if it is together and the chance of an opening for 2 could be low depending on where you are.

If your mom is in good health and wishes to become guardian, she could go to court for emergency guardianship. Courts would likely contact the daughter, who could raise an objection to be explored, but it sounds as if she doesn't care. Costs for guardianship would be paid by your aunt/uncle if your mom succeeds.

If your mom doesn't want to do this or isn't up to the task, I would send those pictures to your cousin with a note updating her on their diagnoses and progression and your intention to contact APS within 72 hours. Do warn APS of firearms.

HB

dgia

https://alzconnected.org/discussion/comment/224649#Comment_224649

https://alzconnected.org/discussion/70833/desperately-seeking-advice-for-unique-situation

https://alzconnected.org/discussion/comment/224649#Comment_224649

Thank you all for taking the time to leave thoughtful responses. I appreciate the help.

My aunt stopped driving years ago but my uncle was still driving just last month. He started getting lost around town so I reported him to the DMV and his license was revoked. As far as their daughter, I would love if we were all in this together, but I don't think it is going to happen. I took a road trip 2 weeks ago to where she lives and laid all of this out to her in person (after many attempts over the phone) but she does not care to help. Sadly, she is only interested in swooping in at the end and collecting any assets they may have left. My mom has offered to be their POA but without some sort of doctors note saying they can no longer make decisions on their own, she really can't do anything. I will definitely have her call the doctor's office and tell them the full scope of the situation because they don't go back to the neuro until November and I'd rather this not wait that long.

harshedbuzz

@dgia said:

As far as their daughter, I would love if we were all in this together, but I don't think it is going to happen. I took a road trip 2 weeks ago to where she lives and laid all of this out to her in person (after many attempts over the phone) but she does not care to help. Sadly, she is only interested in swooping in at the end and collecting any assets they may have left.

Given your description of your uncle and the hoarding tendencies, there is likely more to her side of the story than you know. A man who would deny his family A/C in central FL was probably a difficult parent in other ways. I suspect there won't be much left for her to swoop in for when this is over. Dementia is expensive.

My mom has offered to be their POA but without some sort of doctors note saying they can no longer make decisions on their own, she really can't do anything.

Where are you getting this information? If the couple both have a "springing" POA naming your mom as primary, then perhaps she'd need those letters. TBH, if they had this paperwork in place, they likely named each other reciprocally. If they agreed to see an attorney, it's possible your aunt would be deemed too impaired to name a POA and the uncle might refuse to. You can't sign a POA if the lawyer doesn't feel the individual understands what they're signing.

Guardianship is the route here. If your mom wants to have some say in what happens, she would see an attorney who would talk her through her options. I know 2 people who did this in 3 different states. Basically, the judge might order emergency guardianship based on the condition of the home and order cognitive testing be done before finalizing the guardianship. During that time, their daughter would be given a chance to make her opinion known. The estrangement and condition of the home don't bode well for her in terms of guardianship, so it would likely go to mom.

I will definitely have her call the doctor's office and tell them the full scope of the situation because they don't go back to the neuro until November and I'd rather this not wait that long.

You need to see a lawyer.
HB

NizhoniGrrl

Good advice here. It’s the legal route outlined above that you need, not medical. Good luck and let us know how things go.