My mother (89, newly diagnosed dementia) is secretly trying to make her own living arrangements. She has lived with us for 16 months. I have POA and need to stop her.

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My mother (89, newly diagnosed dementia) is secretly trying to make her own living arrangements. She has lived with us for 16 months. I have POA and need to stop her.

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Alzheimer's & Dementia Multi-generational Living Power of Attorney (POA) Refusing Care

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Being diagnosed with dementia doesn't mean you cannot make your own arrangements.
My brother did.
He was diagnosed with probable early Lewy's dementia by symptoms after a car accident. He had balance and swallow problems, memory loss, hallucinations.
When he was diagnosed we went immediately to his attorney where he did all papers to assign me his POA and Trustee.
Then we together set about deciding next steps.
Because I lived across the state he was essentially alone in his last little home in a tight knit community that promised him loving help and care. He was torn between staying there what time he could and going to ALF. He could no longer drive; not OK in Palm Springs and would have been too dependent on neighbors. He chose to move to the ALF and we explored many together. Some better food. Some better grounds and we interviewed thoroughly, did account together, made all decisions. He came close to deciding to try for another year or so at home. His balance worried him too much ultimately.

I cannot know where your mother's own abilities or lack of them stand, but you cannot make decisions for her until she is no longer competent to make hers.

So tell us this: how realistic or not are her current "plans" for herself? Because without two letters of incompetency and a court order you cannot act for her against her wishes. And how far advanced IS her dementia; that is to say, do you find her incompetent in her decisions now.

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Reply to AlvaDeer

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Quick back story. My daddy died 2 1/2 years ago. He covered for her unbeknownst to us. She lived in Atlanta close to my brother for a year after daddy died. He and my sister-in-law couldn’t handle her anger. So, we moved her up to Michigan to live with us. We’ve dealt with her anger ever since. Angry about crazy things🤦🏻‍♀️. At first it was like every 3 weeks, then 2 weeks, then every week. Now it’s every 2-3 days. Screaming mad one night and sunshine and roses in the morning. I accidentally found out about her “plans” because she was having one of her tantrums and said “I may not be here much longer because I’m making plans.” When I asked her about it she told me “I’m not telling you!” She doesn’t know what days it is, as in weekday. I make calendars for her so she will know what’s going on. We go over it several times each day. My husband has a whiteboard in the kitchen beside the coffee pot that every night after she goes to bed he writes the schedule for the next day. She reads it every morning but by noon has no idea. Three weeks ago she was calling our family members and her friends 10 and 11 times in a row and telling them they needed to help her. She was being held against her will. My cousin, who is a retired US Marshall called me in tears because she was breaking his heart. Then he had to block her after I tried to talk with her about calling so much. She said she wouldn’t call anymore. Next day- 8 times one after the other. That’s when he blocked her. She’s calling her friends from NC trying to get them to help her move back there. Luckily they’re telling me what she’s doing. Because of that I had to take her phone away. So she was so mad she ran away from home. Luckily we were home and Doug went after her down the sidewalk and she was yelling for the cars to stop and help her. I had to call 911 to take her to the hospital. We live in a tiny village and I do alterations for our police officers so when one of them came he knew about the situation with mother and talked her into going to the hospital with us. 8 1/2 hours later the ER doctor wanted to put her immediately into a memory care center. We weren’t ready to do that. We need to figure out how she could afford it. We brought her back home promising the doctor we felt safe. She talked with mother and us at the same time explaining everything. The dementia, the alternate reality, the paranoia, the anxiety….. she told us it wasn’t going to improve but would get worse. She also told us to keep the phone until she saw the social worker who works in our doctor’s office. She went. Same thing. Dementia, erratic behavior due to dementia and anxiety. So here we are now. We have alarms on the doors, cameras outside at each door so we will know if she takes off again because the doctor said that she probably would.

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Alva, not all POA's require 2 letters of incompetency, only the springing POA's do.
The other which is the DPOA is effective the day it is signed.

Sorry, I meant to put this under a reply to AlvaDeer. I guess I need to pay closer attention.

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Reply to funkygrandma59

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Yes, correct.
However, NO POA can act for a competent senior ever if that senior wants something done another way. And has not been declared incompetent. At least that is my understanding.
My brother made me POA and Trustee and I took over that day. However, he was still competent enough to make his own decisions, which he did until he could no longer.
So to say, I could make my daughter my POA and Trustee today; say "The accounts are all yours; pay the bills; don't bother me with any of this". However, she could NOT place me in care if I didn't wish to go there.
It's complicated, as they say. She couldn't put me in a locked facility while I could still manage my own care.
From the internet:
"Bottom line is that just because you have a POA doesn't mean you have jurisdiction or decision making over a parent's care. They must be determined by a doctor or other health authority that they can no longer manage their affairs or aren't capable of managing their health affairs."

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My LO has vascular dementia and although he can't remember thing's he is not viewed as incompetent and can have an intellectual conversation. The brain is so complex!!Good info on the POA, thank you.

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Reply to Maggiegail

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Tanya, your mother has advanced dementia and no real plans to make her own living arrangements. She needs Memory Care Assisted Living but you say you're "not ready to do that". She's incompetent meaning your POA is activated and you CAN move her to Memory Care or Skilled Nursing care with Medicaid if finances are an issue. This would "stop her" from all the chaos she's causing by looking for others to help her. You, as her POA, can help her by getting her placed and medicated for agitation in the meantime. Ativan worked very well for my mother.

Best of luck to you.

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Reply to lealonnie1

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Thanks for that information! Unfortunately she falls into a stupid hole. Makes too much with SS and daddy’s company pension to qualify for Medicaid and not enough for memory care. Daddy was a “spy” during the Cold War in the late 50’s on foreign soil, but the Cold War isn’t considered “wartime” for VA assistance for her. It’s a really crazy, sad, hard situation. I think people don’t know this kind of “hole” exists.

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Honey, your mother has advanced dementia. Stop making her calendars and whiteboards, as the part of her brain needed to make sense of those things has died.

Someone posted this the other day saying it was helpful and so I bookmarked it: https://www.smashwords.com/extreader/read/210580/5/understanding-the-dementia-experience

I’m sorry you are going through it.

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Reply to Southernwaver

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Thank you honey. I guess we didn’t realize how far it had gone. It seems to be moving rapidly. The weird thing is she will have days that she’s totally lucid. I guess that’s just part of it. Thank you so much for the link and the care. 💗

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tanyahdelong: Your family is not alone in the predicament of how to finance care. Although the preceding circumstances will be different, the "hole" is all too real! Many, many working- and middle-class retirees' Social Security, savings, long term care insurance (if any), pensions and possibly other financial resources will be insufficient to pay the HUMONGOUS costs of assisted living and memory care. Many, if not most, will be forced to spend down to poverty level and then apply for Medicaid.

This is especially true when elders live too long and exhaust their resources. I wish you well in resolving your mom's situation. Please do NOT use your own finances. You will need them for your own old age.

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Reply to ElizabethAR37

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Thank you honey. It’s a sad truth. We just retired ourselves so we can’t use our own finances. It’s just horrible that care is so expensive. I want to tell everyone I know about the “hole!” I really appreciate your support and advice. 💗

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So sorry you are dealing with this.

"The dementia, the alternate reality, the paranoia, the anxiety.."

While you can't fix the effects of dementia or any alternate reality your Mom experiences - there *may* be medications that can help reduce the paranoia & the anxiety she is feeling.

'Exit Seeking' is a term I have heard. Describing those who are trying to flee their environment, quite often the safety of their home (due to their altered reality/fears etc).

Adding safety where you can (as you have) is good: installing doors alarms, cameras, alerting neighbours & your local Police.

But this behaviour can be very dangerous to the person with dementia as they lack insight to their safety. Also exhusting for the caregivers to keep watch.

The risk of escape is high.
The risk of injury is also high.

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Reply to Beatty

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Thank you honey. I just have to have faith that everything will work out and we will make it through. 💗

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Mom is way beyond your expertise to care for her, and her Doctor wanted her placed in Memory Care. Get an Elder Lawyer experienced in Medi-Caid to help her with her financial situation, and get her placed! Don't expect the VA to help at all. Don't waste one day with the VA. I wasted 3 years with the VA, unable to get a Vietnam combat veteran any help at all!

Mom will not be cured, not get better, and now needs 24/7 supervision you cannot provide, other than turn your home into a prison. How many years of medical training do you have?

No calendars or white boards will do any good. Take away her phone so she won't pester people all the time. She needs a neuro/psych evaluation, calming meds and to be in Memory Care lockup, before she does something dangerous to her self or others.

Save your own money for your own old age. Your are NOT legally obligated to pay for Mom's care, period. Don't sacrifice your marriage and happiness with something you cannot control. Did Mom take care of her elderly parents in her middle age? I doubt it. You have no idea what your stress level will become!
Dad hid the reality from you, instead of making adequate plans for her end of life.
You had the perfect chance to get her placed, but "weren't ready?" Huge mistake!
It's not about what Mom wants (or even what you want), it is what she NEEDS.
What she needs is professional medical staff to supervise her, 3 shifts a day, 24/7.

I'm sorry, but you cannot fix this, nor is it your fault. Contact an Elder Lawyer with Medi-Caid experience and get a plan arranged. Don't sacrifice yourself. None of this is your fault, any terminal illness can happen in elders, dementia is very hard for a novice to handle. You can't stop it, nor caused Mom to get old. Find a good lawyer STAT and get Mom set up. Don't try to handle this yourself.

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Reply to Dawn88

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Tanya, I want to thank you for being so responsive to us. It helps us so much.
From all you have told us in your responses it is real clear that your mom is in no condition to act for herself. You are going to have to continue to try to make solid arrangements for her that she can no longer escape from. She's really not well enough now to make her own decisions.

My heart goes out to you. There's nothing so difficult as attempting to act for an uncooperative senior. I hope you'll continue to update us and surely do wish you the best.

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Reply to AlvaDeer

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Thank you so much. All of the responses and help I’ve gotten means so much to me. We were feeling so alone. It’s very hard. I hope at some point we can find somewhere for her to be. I will definitely keep y’all informed. 🥰

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In case it hasn't been mentioned: even though you are her PoA you need to read the document and do what it says to actually activate your authority. For my Mom, I had to have 1 medical diagnosis of cognitive impairment sufficient enough that that doctor recommended the PoA step in. It had to be on the clinic letterhead and signed by her doctor.

I just accompanied my Mom to FL (from where we live in MN) to stay with her sister and caregivers for a month. While I was checking out what she had packed I found she stashed away all her PoA and Will paperwork. When I asked her why she's taking it (because I'm worried she'll lose it) she said coyly, "I might want to make some adjustments." Uh oh. I took the paperwork out but she might have snuck it back in. I called my cousin, the caregiver in FL, to let her know that she might ask to be taken to an attorney and to not take her because I have the medical diagnosis in writing and now she cannot change anything. She is having bouts of paranoia and confusion.

Also, my Mom's investment places wanted this proof as well in order for me to start managing her assets. There was a lot of back-and-forth involved and I can't imagine trying to do it in a crisis.

All this to just put a fine point on making sure your PoA is actually active and you have that diagnosis letter in hand.

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Reply to Geaton777

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Thank you so much! It’s a durable PoA but I’ll take your advice and check on what I have to do. Getting a letter from her doctor will be no problem. She’s referred her for a psych evaluation also. I hope your mom didn’t take her paperwork anyway! It blows our minds how she can be lucid enough to do things like that! Mother is insisting my brother is her PoA because he was for years. Good luck with your mom and I’m glad you’re getting a break!

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There maybe a Qualifying Income Trust, or Miller trust, you can get to put Moms overage into. It reverts back to Medicaid on recipient passing. You will need an elder lawyer to write it up.

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Reply to JoAnn29

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I've read many responses here regarding POA/DPOA. I think you must read carefully how it is worded and its clauses, exceptions, and/or conditions. A durable POA (DPOA) typically is active immediately to handle all matters of finance and assets, unless other specifications are included. A POA (aka spring POA) has conditions upon which it can be activated. Here in California, a separate document is required to handle health matters called Advanced Healthcare Directive. I don't know about the laws in other states, but it's safest to read your POA/DPOA carefully. I had no problems handling all finance matters once financial institutions received a copy of the DPOA. (Some institutions wouldn't talk to me or let me close accounts without the DPOA although I'm joint owner ... go figure that one!) And during my husband's two-week hospital stay, I made all medical decisions for him with the Advanced Healthcare Directive. Prior to being accepted into MCF, a doctor's report was required to declare his incompetency and inability to perform ADLs. Again, this is in CA.

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Reply to SOS369

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It is amazing how they can be lucid one moment and completely crazy the next! I call it the roller coaster!

I agree that your mom's dementia is pretty far advanced. She could definitely benefit from some meds. You need to get her anger under control.

Since she has left the house and likely will again, memory care might be the best place for her. I know the money is an issue! My mom still has some money and is in LTC now. She's a rollercoaster, for sure! Her dementia is a level 5, probably getting close to 6. We had one amazingly lucid conversation lately. It gave me hope. But those hopes were quickly smashed with the next convo. Oh well, I'm being realistic and not expecting any more good conversations.

If your mom has any savings/assets, use it for memory care. If not, long term care might be her only option. They will probably need her anger to be under control as well.

You have done a lot by having her with you for 16 months. Now you can get her placed and get your life back in order, while you are still in charge of what's going on with her and helping her get taken care of as well as possible.

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Reply to againx100

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My mother (89, newly diagnosed dementia) is secretly trying to make her own living arrangements. She has lived with us for 16 months. I have POA and need to stop her.

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