Help with how to handle parent who lives with us

sj144

5 years ago we moved and Grandma insisted she didn’t want to live alone. We purchased a home together with her.
7 months ago she received an Alzheimer’s dementia diagnosis with anognosia and she has declined rapidly. She walks with a walker or holding onto walls, in incontinent, had her license taken away, can no longer cook, cannot make a cup of coffee, has hallucinations and paranoia. She is a retired doctor so going to appointments is a terrible struggle, if at all. She refuses to leave the house, but threatens to walk out daily.
She refused to get a POA and now cannot sign one. We spoke to an attorney who specializes in contested convervatorships and we’re told that due to her finances, a court would grant it to us but likely insist she stay at home as she can afford full time care and home modifications.

We’ve had some companion care for a few hours each weekend the past 3 months to go to our child’s events but that is now stopping as her verbal abuse has escalated and doesn’t stop even while they are here. She screams daily that we must leave our home and get out each evening. The neurologist has said he cannot force her into a home.

My husband cannot work now in order to stay home and make sure she doesn’t harm herself or start a fire and our home has become unstable to live in with her.
I did contact our local elder law hotline to see if a social worker can get involved to help.
Have any other adult children had a similar situation and handled it differently? It seems not right that we are being forced to caregiver while she is not receiving proper help with this terrible disease.

DTSbuddy

What a nightmare! Hard to believe that a lawyer could not make a credible case that she needs and would benefit from professional care in memory care facility. It's not like she's happy living in the house, in spite of your heroic efforts. Best of luck. My DH went through a period of anger and agitation, but I believe that pain from a disease was a large factor.

harshedbuzz

@sj144

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

This seems off to me. I know 2 family members who dealt with pieces of your dilemma but separately. Did you see a CELA?

https://nelf.org/search/custom.asp?id=5427

A second legal opinion might be helpful. You'll need guardianship or conservatorship anyway. Given that there is money in the mix, are their stakeholders (your parent or aunts/uncles) who might object to your DH being named you might have a problem. This is especially true if Grandma's assets made a nicer home possible; my cousin did this with my grandmother and her adult children considered it "a deal with the devil" and were quite angry when cousin placed my grandmother "in a home" because of advanced Parkinsons with Lewy-body Dementia although neither of them were of any real help.

In this situation, they did not have the foresight to put the house into a trust but owned it as joint tenants and grandmom would need Medicaid at some point. The first lawyer they saw gave advice that violated the 5-year-look-back for Medicaid. Another free consult second suggested buying her share out and the CELA recognized that this was a situation where my cousin could keep the house having provided care in the home that kept her out of a SNF for at least 2 years.

I realize that this will vary by community and judge to some degree, but my Aunt P was able to get guardianship of her sister Aunt C who had vascular dementia and considerable assets which would have allowed for live-in care. In this situation, family was notified and given a chance to share concerns they had or object and Aunt P's background and financial dealings were shifted through to make sure this wasn't about the money. C was given temporary guardianship to get some needed medical care and move her sister temporarily to a nice MCF in ME until the permanent guardianship was given. Then she obtained guardianship in MA where she lived/worked and found a nice place for her there.

A friend of mine did similar with their dad who did contest the guardianship. Dad was with-it enough to hire his own lawyer and fight it. Dad was a PhD scientist and came to dementia with a lot of cognitive reserve. Do you think your grandma has enough executive function to schedule and show up at an appointment? The friend and his brother prevailed.

How agitated and abusive does she get? Have you tried recording it to share with her doctor? There are medications that can dial the agitation down without sedation. This can be very helpful if she's one who showtimes in the office when you can get her there.

That said, the comment that you could hire 24/7 carers seems to have a bias that at-home care is best in all situations. It is not. It might be doable to make a case that the dementia informed programing and safety protocols of a quality facility would be a better option at this point. Aunt C blossomed with the social activities and attention she got in MC and was quite content. Dad didn't enjoy MC, per se, but he wouldn't easily submit to care at home, so he got better care from the staff who he considered professionals helping him rather than mom or the HHAs.

Another option would be to call the 800 number here and ask to speak to a care consultant to see if they have any ideas.

HB

sj144

Thank you so much for your response. My husband did meet with to a CELA (here in CA) and her position was that if my MIL was having a good day she might be able to convince an attorney to appoint a third party to be her conservator and thus block us out and make us start paying a large portion of house expenses. We purchased a large home to give her enough space and she now confines herself to the master as she has trouble making it out most days due to tiredness. She sleeps a good portion of the day and is awake all night and dealing with high blood pressure, high cholesterol and gout. She manages her own meds and we can’t confirm she takes them.
No, there is no other family (have all passed) and husband is an only adopted child. The home was purchased jointly and all assets are already jointly in her and my husbands names. We have a prenup, which she requested, so there is never an option for me to take her money, which I never wanted anyway, but it’s a non-issue.
It’s mostly just talk on her end. She regularly tries to use the tv remote as a phone and vice versa, or can’t identify it to use it. She cannot drive. Speaking to an attorney is unlikely for her and she can’t remember any of the neighbors or even the companions name.
She looks down on everyone and makes inappropriate comments when we do get her out ( say to a little league game). It’s very embarrassing for our son and he’s been a trooper but her meanness to me and my husband is causing him a lot of stress. I have to keep him out of the home most of the day and I just sit on my car in parking lots to avoid being targeted and try to work.
Food is a very big source of the fighting. She won’t eat what I cook, can’t make a decision on what she wants and if my husband picks up food for her, says she didn’t ask for it and throws it out. Then will binge and raid the fridge or throw out all the food in there, so we have a hiding spot for our sons school snacks now.
Yes money is a big concern since my husband doesn’t work to take care of her. I barely work due to is always having to be on guard and my business is suffering drastically to where we don’t make enough to pay for this home we never wanted.
No we don’t video. I have audio recorded some of our conversations. Her outbursts are mainly targeted at my husband and he has an hard time dealing with it, as anyone would. He is gaining weight and very depressed.
The Alzheimer’s hotline advised that if we do leave the home because of her next outburst we must call and advise authorities that she is alone and unable to care for herself, hence why I called the Elder Abuse hotline this weekend to see if I can get a social worker in.
We have found it very hard to get help from her doctor and the turnaround time is tremendous, but starting this process over with another doctor will not happen as she refuses to go. Only the doctor can speak to my husband as she refused to sign hippa forms. Her doctor finally made the call that he can speak to my husband since she kept cancelling appointments.

sj144

https://alzconnected.org/discussion/comment/208297#Comment_208297

Thank you for the link! It’s actually helped her that she added him to all of her accounts 30+ years ago with signature abilities. Because of this he has been able to pay her bills and work with her accountant to pay file her taxes and make sure her insurance coverage doesn’t lapse. It was something she did when he was a teenager and he only found out over the past month. But everything is documented at all levels luckily.
She is unable to write checks or read and understand mail most days. She has a will, but no directive or POA.

H1235

In my state if someone is a harm to themselves or other you can file a petition for evaluation form. You would explain everything and it would be presented to a judge. If approved police would pick her up and bring her to the hospital where she would be evaluated. If she is considered a harm to herself or others they would force treat or maybe care. The key is she must be a harm to herself or others. This is used in cases of mental health issues, but I would think it might work. It’s extreme, but it might be worth looking into.