Not sure what to do anymore

karyn9916

My mother has dementia that has not officially been diagnosed because she refuses to cooperate with any doctors or complete any testing. I believe she has vascular dementia due to her consistently dangerously high blood pressures (that she refuses to take meds for, which are prescribed) and a CAT Scan showed damage, but no sign of stroke. She cannot track a conversation, cannot remember things from one moment to the next, reacts like a toddler when she is unhappy, throws tantrums, forgets to pay bills, has conversations with my deceased father and grandfather, can't remember her boyfriend's name, and has lost her ability to think about things rationally. She is extremely combative, has hit and scratched me when she is angry, blames me for everything that is wrong, believes I am sabotaging her and stealing from her. I am at the end of my rope. I am the only child, and she has become a person that I no longer know. I tried to just keep her pill containers filled so that her live-in boyfriend (who has his own memory issues) could help her take the pills, but she has made it clear I'm not allowed in her home any more, unless she is there, and I am not to meddle with her pills or her calendar. She also has said that she will not be going to any other doctor appointments, ever, for anything, and believes that I am in cahoots with the doctors. The doctor refuses to declare her incompetent, even though he acknowledges that she is, but he wants a neuropsych eval, which she refuses to attend. The doctor has advised us to contact an attorney and wait for something "catastrophic" to happen, but the attorney wants $4000 just to open the case and we can't afford that, and I don't want something "catastrophic" to happen. Not to mention that I am trying to preserve what little relationship I have with my mother. She has become a gambling addict and has cut off all friends and family since meeting her current boyfriend at the casino last summer, who now lives with her. I actually contacted Adult Protective Services, but they refuse to help because she isn't living alone. No one seems interested in helping. Everyone says they feel really bad for me but they do nothing. Her friends and our family have lists of things that I "need" to be doing or "should" do, but no one is interested in actually helping (and they are things that I have already tried to do or put into place). I have started going to therapy because of the massive guilt I constantly feel, and I have taken a step back and have not contacted her for a couple of weeks because the more I try to stay in her life, the more she seems to hate me. I have POA that took effect as soon as she signed it, but the DPOA won't take effect without 2 doctors declaring her incompetent, and no one will since she refuses to complete the testing.

I feel so lost. I am watching her slowly destroy herself, and no one will help me.

akc783

Hugs to you. I can relate to what you describe. Especially the part about everyone having an opinion and instructions but nobody wanting to actually help. This is a very lonely disease. I wish I could be more help. I will say a prayer for you.

JulietteBee

I am so sorry to hear of the awful position your mother has put you in.

I was heading in that direction as well, except for the fact that she had already made me her DPOA over a decade ago.

Family & friends gave themselves permission to opine on what was best for her. Some shared their views with me. Others did what most people do, talk about me behind my back.

In 2023 I had to basically take over managing my DM's life as she unraveled mentally and her doctor refused to do anything.

Being your mom's DPOA is not contingent on her being deemed incompetent. I would question whoever told you that. As soon as your mom signed the paperwork, it became valid. Is it that she never signed paperwork making you her DPOA?

If you do not mind, I have a word of advice for you. No matter what she has said, do not step back from her. It is the disease that is speaking, not your mom.

Additionally, if you think her bf has any ulterior motives or hidden agenda for moving in with her, by you stepping out of her life, he wins.

Elder abuse is most successful after the abuser succeeds at alienating their victim from their family & friends.

I know you do not want anything catastrophic to happen but sometimes that is the only thing that can move the dial.

For the past 4-5 years, we saw evidence that mom's living arrangement was unsustainable. However whenever we brought up the topic or went house hunting, she would adamantly state that she wanted to "die in my own house."

The occurence of a catastrophic event in mom's life, last year, was what gave me my last shot at being able to convince her to move.

She felt she would be losing her independence by moving in with me, so she opted to move into an IL facility and then consented to my renting out her house .

Of course, that gave the opinionated wagging tongues even more to talk about, yet none came to my aid in moving her.

As only children (daughters), we are tasked with doing what's best for our moms. Despite the times when they are being ornery or combative, they are still "Mom."

The journey is long and lonely. Our acts of self-sacrificing love often feels unappreciated. Remember, you are not alone. Hugs!🫂🙏🏼

H1235

https://alzconnected.org/discussion/comment/247336#Comment_247336

I believe there is something called a spring DPOA that requires two doctors signatures before it is activated.

harshedbuzz

@Karyn

I am sorry for what you're going through.

It sounds like the only route legally open to you is the courts. If the doctors haven't done their due diligence to their patient in terms of testing, they cannot ethically sign off to activate your springing DPOA. You're stuck with guardianship. A motion for emergency guardianship would trigger the neuro-psych evaluation you need to have it made permanent.

FWIW, in the 2 situations I know where this needed to be done, the courts approved the guardianship even in the case where the PWD fought it. In both cases, the legal fees were paid by the PWD.

If you know her SSN, I would lock down her credit with the 3 major credit bureaus to prevent anyone taking a loan. You're probably going to need to jettison the boyfriend, and you may need legal help to manage an eviction if he's been there a year. Medication might help mom avoid the catastrophic reactions and delusions and paranoia. Good luck.

HB

cdgbdr

I am so sorry for what you are going through. I think the guardianship is all that is left. It's a big deal, legally. But necessary.

Bless you for all you are doing for your mother.

karyn9916

https://alzconnected.org/discussion/comment/247336#Comment_247336

Thanks for your reply. When I say I have "stepped back" for the last couple of weeks, that doesn't mean that I haven't kept tabs on her. I have monitored her on Life360, I have been to her home to check on things there, and I am in touch with her neighbors who also keep an eye on her. I just have removed myself from the line of fire to give her a chance to forget that she is angry with me (yet again). Her DPOA is written that I am able to make her medical decisions if she is incapable or declared incompetent. The doctor said (in front of her) that no one can make her do anything that she doesn't want to do. I had a very frank discussion with him about that later and told him that he had undone months of work on my part and on his PA's part, and he gave a woman, who doesn't know what day it is, permission to decline evaluation, treatment or take any medications. I was very angry with him. We have found contact information for her boyfriend's son, and we will be contacting him to let him know that his family needs to start figuring out what they are going to do with him, because they live almost 2 hours away and I will not be taking care of him. His memory is also failing (he doesn't remember ever being to our house and he has been here 5 times, and 2 of those were major holidays, he doesn't remember attending appointments with my mom, etc). I don't think he is a great guy and I want him gone, but I don't think he is intentionally isolating her. He has encouraged her to attend family functions and she refuses.

karyn9916

https://alzconnected.org/discussion/comment/247347#Comment_247347

I did lock down her credit a few months ago to prevent her from getting a loan at the casino or any new credit cards. We are going to contact the boyfriend's family and let them know that they need to start figuring out what they are going to do with him because his memory is also failing. I wish I could get her to take her current medications, but she refuses and has thrown out the refills that came from the mail-order pharmacy, so even if I could get a prescription to help with her mental state, she wouldn't take it. It would need to be hidden in her food, and since she only wants to eat packaged sweets anymore, I don't think that would be possible. If she ever goes to a facility, I think they will need to give her the medications that way, but I can't be there every morning and night to do it.

JulietteBee

https://alzconnected.org/discussion/comment/247435#Comment_247435

Okay, I understand. You stepped back but have not gone absent.💖

I'd be angry at the doctor as well.

I guess it varies from state to state. My attorney AND my mom's attorney both explained that a DPOA can start functioning the moment it is signed and extends through periods of incapacitation/incompetency.

My Healthcare Surrogate role on the other hand, becomes active AFTER she is deemed physically incapable of telling her doctors her desire for life saving methods or 2 doctors declare her incompetent. At that time, they will be able to legally seek my say regarding their future healthcare plan of action for her.

H1235 just taught me about a "Spring POA." I just googled it and it seem that is what your mom signed, which is so sad, as it is now proving to be problematic by preventing you from doing what's best for her.💔

I agree that the boyfriend needs to be with his family before financing his healthcare needs become your mom's responsibility.

harshedbuzz

@JulietteBee

There are different types on POAs and they're more dependent on how they are written than the state in which you reside. I had the DPOAs written by a CELA in order to do what mom and I wanted going forward. I had POA on mom with a successor; I was a secondary agent after mom on dad's. The lawyer knew I was going to be dealing with money and real estate on their behalf, so she wrote it to include that. Their POAs were accepted by Realtors, title companies, banks, investment brokers, etc. whereas a boilerplate off the internet might not be.

@karyn

This could rapidly become a hair-on-fire situation. I would encourage you to see a good elder law attorney sooner rather than later. You are going to need teeth to put the fire out. If mom won't sign a DPOA or can't because the lawyer deems her incompetent to understand it, then guardianship/conservatorship is your only option. If you prevail, fees are charged to her, and you get paid back. You'll need the ability to do a deep dive into her finances to make sure her relationship with him (potential gifts and loans) hasn't impacted her Medicaid eligibility should she outlive her assets.

It's very likely your mom is further in the disease process than you might expect. She's probably showtiming to some extent as your ability to visit is limited by her moods. It's very likely the boyfriend, however impaired his cognition and memory, is providing a lot of support and scaffolding for your mom. Once he's removed, she may not function at the same level she is now.

Removing the boyfriend could be difficult. It seems adult children are more likely to rescue (aka move) their mom from such a situation than a dad. Often the sort of dad who is available to move in with a new girlfriend is the kind of a guy who wasn't there for his kids and they're happy to have him be someone else's problem. He may enjoy significant rights as a tenant and it could take time to evict him. In some communities evictions are paused during the colder months of the year and you could be stuck with him if his family isn't interested and he's standing his ground.

TBH, it sounds as if placement sooner, rather than later, is the answer to your mom's current and future needs unless you are moving her in with you and providing supervision. A facility would manage her meds and encourage a healthier diet and life style as well as offer dementia-informed activities and engagement. If she has a home, selling it could help pay her monthly fees. Selecting a facility the accepts Medicaid make the most sense if she doesn't have unlimited assets.

HB

JulietteBee

https://alzconnected.org/discussion/comment/247462#Comment_247462

Thank you! I've learned so much from this group in such a short time.

My mom thankfully completed all her paperwork right after my sibling died, giving me complete say from that point forward. I am very saddened at having to function in my designated role now (2023) due to her dementia diagnosis. I would have much preferred filling this role while still being able to discuss the various issues with her. As it stands, I can no longer get her view regarding anything.💔

H1235

It’s good you locked down her credit. If she has any larger investment accounts it might be good to get the information for that out of the house so she doesn’t decide to cash it in. It might even be a good idea to change her mailing address to your house for some things ( if she wouldn’t notice, or if it’s very important information). If there is any reason at all for her to go to the hospital I would use that opportunity to request a psych evaluation. The person that does all the work caring for the person with dementia is usually the one they focus their anger on. Many with dementia have anosognosia, this is the inability to recognize their own symptoms or limitations. It makes things so difficult. There is NO need for guilt. You are doing your best. Good luck.

karyn9916

https://alzconnected.org/discussion/comment/247462#Comment_247462

Thanks for the suggestions. Everything is in a trust (investments, property, accounts, etc). My dad had the trust created over 25 years ago. My mother is currently the trustee (my dad passed in 2011) and I am the successor trustee if she passes, voluntarily steps down (which will never happen) or if I get 2 doctors to declare her incompetent. I have spoken to the attorney who wrote the POA and holds the trust and they told me to find an Elder Law attorney (which I thought she was), which we did and had a consultation with one last fall. That's when he told us how expensive it would be. I have contacted the Credit Union where her accounts are, but because they are trust accounts, they refuse to acknowledge the POA and will not discuss anything with me. It's really convoluted and Adult Protective Services said that they hate dealing with that CU because they refuse to accept POAs unless a judge forces them to, even though the POA states that it has power over the trust and all accounts and property included in the trust. I have all of the paperwork for the trust and POA, but not for her investments. I truly don't think she knows that she has investments. She is so financially inept that she literally told the doctor that she has no clue where her money comes from every month, but next month more money will appear in her account so she isn't going to worry about it. I don't believe she will outlive her assets, since she seems bound and determined to die. My dad made sure that she would be set financially. Her retirement income (which actually is my dad's retirement income) may be all she has left if she has to go into a facility (which she said she would kill herself if anyone puts her in a home). I tried to tell her last year that she is creating a situation for herself where she is going to eventually have to live with the consequences of her choices. If her boyfriend moves out (by his choice or his family's) she will definitely be in a lot of trouble. She refuses to have any help come into the home, there's no way she would move in with us, and I will not be moving in with her. We live about 15 miles from her. She has signed the DPOA, but it won't be activated unless she is incapacitated or incompetent, but I am looking it over again to make sure that I am not misunderstanding it. My husband and I would like to get her on some waiting lists for facilities around here (we live in a small town) but I hate to waste their time since she won't go and we don't have the power to make her go.

H1235

I really don’t think it would be a waste of their time to put her on a waiting list. You might at least check a few out, see which one you like best and find out how long the waiting list is or if there even is a waiting list. Eventually something is going to happen and you’re going to want to be prepared. In my experience if there is an opening and you’re not ready, they will just go to the next person on the list. They will call you again when there is another opening. I think this is pretty common. The alternative is, there is an incident (hopefully not too bad) and she ends up in the hospital and you have no place for her to go when she is released.

harshedbuzz

@karyn9916

If the CU won't play ball with the DPOA because it doesn't meet their standards, then you really have no choice aside from guardianship/conservatorship. You'll need it for placement as well, unless she moves herself in and that just doesn't happen IRL.

If you were quoted something north of $10K for the emergency guardianship/conservatorship, I'd shop around.

Your logic on the wait lists makes no sense. It's a wait list, if you're not ready to move, then the next guy in line takes your spot and counts his lucky stars.

HB