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 All meds were withdrawn and she is now eating, sleeping, reading, winning at Cribbage, etc.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.
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.
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.
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.
Don't guilt trip myself about it..........
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.
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.
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.
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!
What is best for the family and the patient are not necessarily mutually exclusive.
Love to all.
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.
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.