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Mom got diagnosed with ALZ/vascular dementia in 2012. She is 85. Last August, she was at the nadir of her disease and got tested to quantify the dementia's progression. She was deemed incapacitated by two MD's based on this testing and 2 letters have been written. At the time, we placed her in a very expensive residential care home (ARCH) where she has absolutely thrived. All meds were withdrawn and she is now eating, sleeping, reading, winning at Cribbage, etc. Bottom line however: She HAS lost most executive functions and no longer manages her accounts/bills.
The question is: She is quickly running out of money and we need to sell her house in order to pay for this excellent care. She is refusing. Is it ethical to continue with declaring her incapacitated in view of these improvements? I've asked for her to be re-tested but the medical office is refusing due to insurance restraints. I've thought about retiring to move back to her home to care for her, but that would put me in financial jeopardy and would add to the burden of the emotionally difficult aspects/isolation of full-time care-taking.
I talked to her yesterday about selling, explaining her financial situation. She hung up on me! She lives 2,500 miles away, so these are huge obstacles to overcome. Add to that my own attachment to her house, fear of losing my identity as a working, productive member of society.. It's so complicated! Lawyers are advising me to have her declared to make paperwork easier if we chose to sell. I just cannot imagine having to tell her that her house is gone. Any advice would be most appreciated. By the way, I haven't described how angry and hostile she can be when she gets told something negative.

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First of all, sounds like you are coming to terms with the 'role change' we all have to go through with elderly parents who can no longer make sensible decisions. It took me over 2 years to get there with my Dad. I am also an RN (now retired at 71)...and our education prepares us for some, but far from all we need to walk this path! Secondly, I do NOT recommend stopping your career to become Mom's caretaker! It only gets worse....and she will get worse, and need more and more....and it will soon be far more than one person can handle. If you upset all your future financial planning, and your health....and then your Mom must use all her resources, your future will be destitution or you'll be ill or die before Mom does, and then what?? I am a coordinator of my Mom's care. My parents lived in another town...5 hrs away driving. After Dad died last Aug, there was no reason to leave Mom alone in their home so far away, so the lawyer told her that she was going to run out of money trying to stay home, and he gave her the available choices. I helped her find a nice assisted living here by me. It is full service, so it has Memory Care when she's needing that next due to her Alzheimer's. Thirdly...you said it yourself....and it took our lawyer and a funeral director to get it through my head, so you are ahead of me.....but when Mom doesn't have higher executive thinking abilities, then Mom IS incompetent to be responsible for herself. You need to move on that, so that you can make the financial decisions. With my Mom, we moved her into AL, and then emptied out her house. She got to where she understood we were going to sell the house, and she's adjusted to that, but all her 'stuff' is in storage, because she wasn't going to have anything given away. Well, when incompetent, the time comes for fibbing....and as someone else suggested, we were going to do if Mom did not come around.....you tell her that someone else is moving in to take care of it, and that will help you get enough money to take care of Mom where she is. And then you sell it. A fib....because, in reality, is Mom going to go back into that home, to find out that the nice people living there actually bought the house? NO. And did those nice people arrange for her to have enough money....YES. So that's what you say. As with my Mom's 'stuff'.....I just say....it's in storage. Never mind, that all the junk and old clothes and things she had hoarded for 60 years living in that house, have all been donated or tossed out..... the clothes she mostly wore, and family pictures, other momentos and certain furniture ARE still there, so a FIB....not a lie. Her car is with her granddaughter. She specified that her granddaughter would someday be given her car. We've transferred the car to our daughter that was promised it, but since Mom has not yet said 'give it to Michelle', we just say, that the car is being stored in Michelle's garage, to keep it out of the snow and ice up here, where there is no garage. She periodically asks, " Where is MY car?" and I give her the same answer and she says, "OK" and goes on to something else because she is getting worse. There was a time she would have fought and argued and asked 3 million questions or tried to make me 'prove that it was not being driven' or other assorted things. Not any more. This technique is taught....for Alzheimer's patients....and it does work. Don't tell them things they don't need to know or you know will upset them....and if they ask you....you fib in order not to upset them. But, bottom line, is you have to get things arranged such that you can do the financial things that must be done to care for Mom and to keep her as long as possible in the place she is now happy in. You have become the parent and she has become the child that needs the safety and care arranged by you.
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Kristen, my heart goes out to you, because selling my mom's - my childhood home was the hardest thing I ever did. I never actually told Mom we sold, just that we had another couple move in and they were taking care of everything and paying the bills so she would not worry; this was quite a bit after we actually sold and after my dad died and I finally moved her here to Arkansas closer to me. If your POA is like mine, those two letters are basically what you need to be able to sell without her participation. And then you put the proceeds in a special account and do nothing but pay her care bills with it, but you probably know that.

I have to admit that my first thought was that regaining the ability to play cribbage was impressive, but probably does not constitute her becoming un-incapacitated. She sounds like she has more of a vascular than Alzheimer's type dementia, with poor judgement a prominent feature more so than memory loss. And I was told that renting, besides saddling you with landlord duties, would result in any funds going to Medicaid in my mom's situation anyways. If she is very happy and well cared for where she is, and wants to stay there but just needs to hold on to the idea that when she is better she will return home, and of course her docs are clear that this is not going to happen, then you are doing the right thing as POA. I know I had a lot of doubt because Mom wanted to go home and I tried a couple or three times to find enough help to make that possible, but she threw them all out - her idea was she could go home when she could walk again, and be by herself...never mind that she did not work real hard in therapy and kept getting d/c'd for lack of progress...it took a couple episodes of delirium with minor infections plus ongoing delusions to make me realize that, despite a few people saying they thought she was "sharp as a tack" (i.e. she recognized them and carried on a conversation) it was a pipe dream. But she needed to dream it. Even here after I told her about the couple "taking care of" our house, she said she thought maybe it would be best to get an apartment nearby when she could..she did not want to feel like she was "pushing them out." This was just a couple weeks before she was on hospice, and maybe a month before she passed on.

I am not saying the way we did it would have been right for everyone, but I think back and despite all my second guessing, think it was probably right for us. Hugs.
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Also, I'm realizing that her complete denial/awareness of her incapacity is by definition, incapacity. I'm felling better about moving forward with everything. Thanks for your good advice and insights.
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Yes, Babalou, still with you all.
I had "The Talk" yesterday which didn't go well. She actually tried to strike me with her cane!
Renting is not an option, for we need ~ $8,000/month to pay for everything. I'm coming to terms with the process and gradually accepting that this is our fate. -Grateful that we even have an asset to rely on at this point.
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Kristen, are you still with us? Any updates?
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Angelsrespite, your Grandmother still has her assets, or do you? That is the question! You are taking Granny for a ride, packing her off to cheaper accommodations, so that her monies will be yours when she dies! Pull the other leg! FFS!
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In my state, the rent income has to meet a certain minimum to be allowed. This stops family from "renting" it to a friend for $1/month simply to avoid having to sell.

Medicaid and property rules vary by state, so it's really important to either know the rules & law yourself or have an attorney who does to advise you.
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As DPOA I opted to rent out my grandmothers house to pay for her care as opposed to selling. $1200 plus her SSI. It has been three years now; it seems like the right move. Angels Respite Program allowed us a financial and emotional break. Yes, I have to manage a property and tenants but she still has the income and asset.
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I also was wondering about renting out the house instead of selling it. We rented my inlaws' house and the tenant covers a good chunk of the cost of independent living. Is your mom's house in good condition? Is it in a great location? Does it have a million dollar view without the exorbitant property taxes? Would you rent it furnished or unfurnished? I'm not familiar with the Hawaiian real estate market but pretty much everywhere (except San Francisco) it's a buyer's market. And rents are always higher during a buyer's market.
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Should have said,

Don't guilt trip myself about it..........
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Kristen, could the house in Hawaii be rented for enough to cover moms care?

I also agree with Garden about taking a look at the POA. Maybe have a lawyer take a look.

There are many folks on this forum who are full time caregivers for elders. I have a great respect for what they are doing but I could never do it myself and I so T guilt trip myself about it.

You need to make a decision as to which way this is going. Are you ready to retire? Move to Hawaii? Take care of Mom for years to come?

I still advocate finding a way to finance her care with the value of the house whether you are in Hawaii or elsewhere.
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Kristen, a springing POA becomes effective on designation of incapacity. A DPOA is effective immediately on signing. My father's and mine are both DPOAs, and don't requite declaration of incapacity of examination by doctors affirming this diagnosis.

I didn't even realize the difference at the time, but am so glad our attorney provided for all situations as I had to use mine when my father had full mental capacity but was physically depleted and had to be intubated.

Assuming that your mother has a living trust and is trustee now, and you're successor trustee after her death, I can see that she would have to execute any deeds of sale for the house, unless what you really have is a DPOA and could execute deeds as well as any other transactions. You might want to doublecheck your POA.
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Some POAs only go into effect when certain criteria are met - when the spring has been sprung. You will also hear them called triggers.

KRISTEN3 - You need a social worker NOW. Find your area agency on aging, call them and request help ASAP. You can apply for Medicaid before selling the house/property. Depending on its value, you may not have to sell it. Especially if this is still her primary residence. FIND FACTS, DON'T ASSUME!

There are rules about selling property for a Medicaid qualification. You have to sell it for Fair Market Value, not the best offer. Sometimes the best offer is well below FMV or tax assessed value. Your state has its own rules you need to understand. It may be very wise at this point to retain an elder law attorney specifically.

This specialist attorney will know the ins & outs, timing, and rules for all of this. Money very well spent.
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GardenArtist: What is a springing POA? I have POA on everything but the home portion of the trust. As it stands now, she would have to sign off. I am her medical POA and have general POA to take loans, etc.
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Transylvania?! My mother is in Hawaii and would have to be hog-tied to get her off island. I told myself I wouldn't sell until she could no longer remember that she has a house. However, her income doesn't come anywhere NEAR the cost of her ARCH, and hiring in-home care is too expensive, also. So it's either me (an RN) or sell the house. The other thing that adds to my angst is that I'm not really thriving at my job or happy where I live on the mainland. I've got one foot out the door at all times to be able to answer the crisis calls from Hawaii that come at least once every year or so.
I appreciate everyone's articulate and thoughtful answers here.
It's amazing how the vestigial family dynamics are so hard to overcome. As I said, my ties to the house and the memories shared there are so hard to let go of, too. I recognize that I need to handle the change in roles here in order to put the necessary changes into place, but my mom's condition is far better than when she was actually living alone unsupervised.
I've thought about having her return home with paid part-time support but if she worsens, then we've lost our spot in the beautiful ARCH where she is. As you've noted, the Medicaid facilities are a far cry from where she is.
Thanks for allowing me to vent!
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This is what an overpriced care system has done to our loved ones and us. No disrespect to nurses and professionals intended, you earn every cent. But the system has forced us caretakers to pay with our lives and all financial resources, not to mention the opportunity cost to our families. Faced with many of the problems posted here; and after two years at home with my Grandmother who has Alzheimer’s, we tried something out of the ordinary. I took my Grandmother to Transylvania for an extended respite where she receives more personalized care at an affordable price. No, I can’t give her hugs whenever I want but we skype and she’s in a much better place. Check out our story at Angelsrespite.

What is best for the family and the patient are not necessarily mutually exclusive.

Love to all.
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Quitting your job to care for your mom would wreck your life. Don't even think about it. It she is to stay in this nice facility the house has to go, unless this place accepts Medicaid, which is unlikely.

As hard as it is you will have to go the legal route and overrule mom. It's the only way to provide her with this quality of care and for you to continue your life and career.

The alternative is application for Medicaid, elders go to Medicaid funded facility, then house is sold to repay Medicaid after death. But as you are probably aware, medicaid facilities are not going to be what she's in now.
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Kristen, I assume that your mother hasn't executed a DPOA or even a springing POA so that you could legally sell her house?

There have been so many posts here in which the adult daughter or son is trying to do the best to manage care for the elder, who is refusing to cooperate, and probably not really understanding the pros and cons or choices involved.

I think there comes a time when the caregiving adult has to step outside the role of daughter or son and try to view the situation more like one he or she would handle at work, i.e., a business decision, evaluating the pros, cons, risk factors, break-even points, etc.

What WOULD happen if she runs out of money and can't stay in the facility where she's at now?

First, could you find another place fairly quickly that isn't as expensive? That would at least slow the financial expenditures.

Second, would she insist on going back to her home to live, and if so, is there support, caregivers, family or others to assist her?

Since she won't be open or rational, I think you're going to have to make some decisions and move ahead on them on your own, unless you don't have legal authority under a DPOA or POA to go ahead and sell the house. She's already volatile; she'll get worse, but it seems unavoidable, and she's not thinking rationally about keeping the house.

If that's the situation, you might have to really be firm and provide her with alternates, including places she can live more cheaply. I wouldn't even raise the issue of returning home, even though she may still think it's reasonable.

I think you're in a difficult situation, but you're not alone. There are other posts similar in nature; other caregivers are finding this a challenge as well, if that's any consolation.

I hope others who read your message will offer better alternatives than I, as I can only think that it's time to be very, very assertive and start making the decisions, regardless of how angry she gets.

I would also suggest that you read AK Daughter's post on this thread:

Should I help my mom die sooner?
https://www.agingcare.com/questions/help-mother-die-sooner-195470.htm

I'm not in any way suggesting you consider letter her die as an option, but rather that AKDaughter expresses well the dilemma in which caregivers of older parents with dementia can eventually find themselves.

There are no easy answers to these dilemmas. Your mother is probably going to be angry with you whatever you do.
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