Advice for disagreement on care
Comments
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Hi Black5,
Increasing care can be a gradual thing. Without a crisis, people are usually edged into accepting more help and less control. Your sibling is POA. They get to make the decisions. You can increase the time you spend with her. You can also set up cameras in her home and monitor her for falls. Telling the person with the decision making, authority and responsibility what to do probably won’t go over well. Your mom will get the best care if you and your sibling work together and help each other. It’s only going to get harder. Little money means she will be living with one of you eventually and you will need a good relationship with your sibling to make that work. My husband has POA of his mother and his siblings don’t tell us what to do. They come and help out sometimes.
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Black-
Hello and welcome. I am sorry for your reason to be here, but glad you found the site.
Yours is a very difficult situation with few options available to you- and none of them are good or easy.
I agree with your assessment that a PWD who is 5/6 on the FAST scale likely needs 24/7 supervision. Much as I hate the concept of age equivalents (PWD are not children, after all), they are a useful shorthand for determining where to draw the line around safety. FAST compares a person with a "5" score to be rather like a 5–7-year-old and unlike a child, a PWD is regressing rather than gaining skills and maturity. Just as you wouldn't leave a 7-year-old alone overnight, your mom shouldn't be alone either. Even an hour or two could be "iffy".
My mom replaced the heating system in her house about 15 months before my dad died. At this point I would have said her was stage 5 headed towards 6 and my mom would often run errands during the day leaving dad for up to an hour. On the day the HVAC crew came, mom asked me to stay at the house as she didn't want dad interfering with the install. He was very verbal and in a stage where he was wanting to make all manner of structural changes to the house and she feared he might interfere with the install. Dad and I chatting when the smoke detector went off because they were soldering. The tech yelled down that everything was fine, but dad didn't hear or process that. After almost a minute he asked me what the terrible noise was. I explained what was going on. After another 30 seconds dad stood up and said (with no sense of urgency) "if there's a fire, I need to go get your mother". At no point did he call 911 or tell me to and he'd forgotten mom was not home. In a real emergency he'd have died. We never left him alone again.
That said, as POA your brother may be more aware of her finances and believe he is doing well by her. If she doesn't own a home, have a generous LTC policy or considerable investments/assets, he may be hoping to use what she has as a means to leverage her way into a nicer MCF that will accept Medicaid after she's paid out of pocket for 2-3 years. This is a very common business model in the long term care industry.
If she were to spend down what she has on in-home care, which costs about $30/hr from an agency and $20-$30 if you hire them privately, she may burn through her assets and have fewer options in terms of a bed when the time comes. Many nicer facilities have considerable waiting lists for Medicaid beds with preference going to residents who are already a part of the community after spending down their assets. In many states, Medicaid will not fund MC, so an individual would need to qualify for skilled nursing which your mom does not.
That said, if you truly believe your brother is not performing his duties as POA, you could see a certified elder law attorney and explore guardianship/conservatorship options. This, of course, is the nuclear option and could cost you access to mom if your brother isn't found negligent. Another similar option is to create a pocket-ready Plan B to execute as soon as there is a crisis. You could sit tight until something happens and engage APS to investigate.
It would also be a good idea to phone the 800 number associated with this site and ask to speak to a care consultant. They may be better able to help you.
HB
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Thank you, Rancherswife. I appreciate your thoughts and advice on this. The issue is that my mom has over $600k in available funds. I am advocating we hire limited care to start as a trial to supplement the need and that’s being declined. I am trying to spend as much time as I can but I live halfway across the country whereas my sibling lives 20 min away. If I lived closer, I would be doing more than what’s being done. My mom needs companionship and monitoring, not just a few visits a day to drop off food and check on her. I don’t know why even spending a little money to help my mom is faced with such resistance.0
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Some chapters of the Alzheimers Association have social workers on staff who can help families work through these dynamics. My local chapter does and I know of families who all sat down with her to work out a care plan and address disagreements. And hearing from an expert helped the penny pinching relatives understand the need for care. If your sibling is open to that, perhaps call it some professional guidance, then maybe you can work out your differences in opinions.
I agree, with her scores and what you describe she should not be alone. However, beware you are the out of town relative trying to call the shots. This happens routinely and rarely sits well. The local sibling on the ground doing all the work doesn't always appreciate being told what needs to be done by the sibling half way across the country who stops in every few months. Just keep this in mind as you proceed. You will probably do the best by being gentle, generous, and trying to work with your sibling instead of against. In the end it is their call not yours. Sometimes it takes a crisis to make changes to care. Unfortunately you may have to wait for that crisis. Offer help. Offer to do the legwork of finding and hiring a companion for mom, that could be a lot of work for your sibling. If she is truly in danger you might consult an elder law attorney in her state about legal options as well as calling Adult Protective Services. These would be scorched earth options that will likely leave you estranged from your sibling after mom passes. No fun options. I agree with HB, you could definitely have a plan B ready to go if a crisis happens. Quietly tour and select a couple memory care facilities and nursing homes, get on the wait list so it's ready to go in an emergency. I would try to make inroads by being supportive, asking how you can help, and gently trying to get your sibling to see the risk posed to mom and the direction her disease is headed.
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Black5, it sounds like your mom has plenty to at least get some part time care. What is the hesitation on their end? Do they really think she doesn’t have enough money or they don’t want to spend her money? I hate to say it but there are some who think of their parent’s money in terms of future inheritance. My husband is POA and had to have a long talk with a sibling that his dad’s money is his own, first and foremost to spend on the care he needs, no matter the cost. If it depletes any inheritance, then so be it. He scrimped and saved so he and his late wife would be well taken care of at the end of their life and that is exactly what we plan to do.
We itemize everything we spend, down to the smallest package of pull-ups and send a monthly report to all siblings. I never want there to be a question where the money is going.
I agree with the others that she needs the care. My FIL was around stage 5 when we moved him in with us full time - we were surprised at how much worse he was than we thought and how much at risk he was. Because he was physically in great shape and could handle all his ADLs we thought he was functioning better than he was. He could get up, get a shower, shave, toilet, brush his teeth, get dressed and come down for breakfast and get a cup a coffee - but he also wandered outside at 2 am, got lost, peed in closets and one time cleaned his counters with gasoline and flooded his house leaving his water on. Once he spilled his medicine and tried to put it back in pill boxes, but he had put 3-4 of the same medicine in one compartment. Fortunately we caught it before he overdosed. So much can go wrong!
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Thank you, MN Chickadee. Sadly, I believe money just doesn’t want to be spent so there is more benefit after my mom passes. I’d rather spend money on her care now. I’ve interviewed candidates and found good caregivers, only for my brother to say he doesn’t want strangers caring for my mom. I’ve asked to have cameras installed and he says agree, but then does not install them. I wrote a letter to the neurologist explaining my concerns because I was not added as a proxy and then my brother says I’m being a jerk for communicating a different narrative. I offered and purchased a life alert watch and ask him to help remind her to wear it; my brother just says he gave up doing that because she doesn’t wear it. Hello?!? You have to keep working with her to wear it, so she is safe. Not give up; especially when she is not monitored 24/7. If she can’t wear the watch, even more reason for care.
The only way he wants my help is if I take my mom for a week each month, which I offer to do. In instances when I need help getting her to me, he refuses to support logistics because he thinks I should do all logistics if I truly wanted to see my mom. It’s insulting, and the time I do spend with her is 24/7 when I do see her, whereas, he is stopping by at best 2 times a day for an hour or so. I certainly believe I’m getting a better picture of her mental state then he is. I’ve explored nuclear options but I need more proof of negligence. I’ll have to continue to document. I wish there was a definitive piece of documents that says you have fast score 5, you should have 24/7 care.
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Thank you, Mayflowers. I think $$ and greed is driving this. At 84 and with $600k to access, no excuse for not spending on supplemental care. I’m sorry to hear what happened to your FIL. We have purchased a hero machine which helps dispense meds. I’d rather no money be remaining for inheritance, but there is more to this story. My brother was given nothing by our father because they had a falling out and I think this is his way of evening the score of inheritance. It’s pathetic and my mom is the one who is suffering0
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Black5 wrote:
Thanks for the additional information. This does reek of asset preservation.The only way he wants my help is if I take my mom for a week each month, which I offer to do. In instances when I need help getting her to me, he refuses to support logistics because he thinks I should do all logistics if I truly wanted to see my mom.
At stage 5-6, travel across country is less than ideal even with an escort. It's best you travel to her.
It’s insulting, and the time I do spend with her is 24/7 when I do see her, whereas, he is stopping by at best 2 times a day for an hour or so. I certainly believe I’m getting a better picture of her mental state then he is.
I agree. It's really important to get a sense of how well the PWD is able to function through the day. Many PWD are able to showtime for short periods of time-especially earlier in the day. You at least know how she behaves overnight which is a critical piece.
I’ve explored nuclear options but I need more proof of negligence. I’ll have to continue to document. I wish there was a definitive piece of documents that says you have fast score 5, you should have 24/7 care.
That would be awesome in a lot of circumstances.
I would still tour places near you as part of your plan B.
Good luck in this difficult situation.
HB
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Black,
As far as cameras go, the inexpensive ones don’t really need installation. You could get a couple, bring them with you when you go and set them up. Wyze Pan Cam is what we’ve used for years and they still do a fabulous job. I set four of them up myself at my mother’s house, it wasn’t difficult. The other plus about you setting them up is you have the capability to control who you share the feed with, etc…
I’d be careful about the sibling rivalry (competition). I might go to my sibling and discuss a plan B if it arises, due to a crisis. Something you both can agree on. Work with each other as best you can. Try to forgive their stubbornness and even possible greed. All you can really do is suggest and express your feelings. Hopefully your sibling will be able to take your position into consideration.
This is just so hard. I’m sorry!
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Thank you, m&m. I wrote my brother and stressed the importance of coaching my mom to wear the watch and I also said I intend to install cameras in the apartment. No response yet, but I venture to say they reply saying they will install it so they can control access to the camera. They will also want to do this because otherwise I will see that they don’t stop by, and/or see that they only stay for a few minutes. Again, they don’t want a trail of negligence being shown. I’ve tried many angles to persuade them to consider in home care but based on their response to me, saying I only want a caregiver just because I want convenience instead of caring for my mom, this won’t change. Again, any caregiver staying or interacting with her will see her being alone so much is more evidence of negligence. I may have to call APS.0
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Thank you, harshedbuzz. I agree this is about preservation I do know half of the $600k went to a rental home down payment for “ income for my mom”. And supposedly half went to a trust, whereas my brother refused to show me the paperwork noting I am a beneficiary. At this point, all that money should be pulled to support her care.
I do fly personally with my mom and then rent a car and drive her to her apartment. I only asked my brother to just bring her to the airport so I could just take her from there, but he refuses.
I’ve also advocated that she carry ID with her and they refuse to get a non driver ID. My mom needs some form of identification at all times and I cannot figure out why they won’t let me do this. It’s for her safety
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Also, I have suggested we put down a mere $1200 for a deposit for a memory care home (of which $1000 is refundable) that is highly recommended because there is a waitlist. I get a response from my brother that we should research other places. When I find others and show them and I do the legwork, he jumps in and says he will check them out, but then no action. I mean, why would we not put a deposit down for a memory care home when we get just about all of it back??? Insane0
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Given the rest of what you have shared, I would definitely consult an elder law attorney licensed in the state mom lives in. They can help you understand the threshold for negligence and what documentation might be necessary and legal options. They might have some suggestions for how to communicate legal risks to your sibling that will get some traction. I'm sorry you are going through this.0
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Hello all,
I’d like to give an update and get some advice. My mom and I travelled together to see her siblings overseas. Based on what my siblings saw, and knowing how my brother has responded thus far to my concerns, they plan to contact APS to report neglect from a financial, emotional, self, and physical perspective. They firmly believe my mom should no longer be alone. I agree. My concerns:
1) If we see and think my mom needs care based on her behavior and should no longer live alone, if APS does a check, what is the likelihood it will be the same conclusion. I fear the remote possibility they find her on a good day and say she is fine?
2) if they do find evidence of abuse, would they remove her from the current situation or contact my brother who is POA?
3) would the state take over POA and then appoint a GAL or will they offer my brother to fix things and get her the care she needs?
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Hi Black5,
You might want to read through my recent post, where I'm dealing with exactly this situation except in reverse: I'm the local family member with the POA & health care proxy who gets to see my mom in all her agitated glory, and my siblings are all in distant locations who get to come visit and be welcomed like heroes, as my mom is excited and happy to see them. And yeah, we have a lot of these same types of disagreements. The criticisms don't sit well with me either.
Maybe starting with some constructive suggestions would help? Your mom sounds like a perfect candidate for Meals on Wheels. You could offer to set that up, and your mom will likely enjoy the visits and the prepared foods that she doesn't even have to heat up. Also when my mom was at this stage, I ordered her frozen meals from a high quality online vendor. She loved it. All this can be done from a distance.
Another suggestion: adult day care. These are starting to reopen now, and you can present it as a way to provide your mom with much needed socialization and entertainment. They also often provide services that are a pain in the neck to deal with otherwise, like beautician visits, and they'll often provide transportation to and from home. My mom absolutely refused this, but maybe your mom will like it. It's much cheaper than an aide, and you can limit hours & days especially at first.
Last comment: $600K is not as much money as you think it is. Even a part time aide will chew through $100K/year, or even more if you get one through an agency. This was a huge wakeup for me too, to realize that the total out of pocket cost of Alzheimer's care is in the $1-2 million range per person. Anyone with less savings than that (including home equity) is going to have to depend on family for either care or financial support, and will eventually end up on Medicaid. It's absolutely brutal.
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Hi B5 - So sorry this is not something anyone should go through. If I have any money saved by the time I reach her age, and it is not used for my welfare first -- well, let's hope I can come back and haunt the perpetrators.
As a 24/7 spouse caregiver who began watching my DH closely after diagnosis, I can tell you the things I have seen him do are terrifying and mystifying. Unpredictable and dangerous. To himself and others. Stages 4 and 5, were actually the worst because he looked and sounded so much more capable than he actually was:
- near fires with microwaving the wrong containers,
- pouring a huge mug of mouthwash to drink (not juice),
- cutting himself trying to use a steak knife to open a jar or bottle,
- not to mention bankrupting us. Totally misusing money and just being such a target to online sales folks
- overeating (and almost eating spoiled or raw stuff has happened more recently)
- skipping or losing meds, confusing his doses.
- clogging the plumbing and flooding the dishwasher and kitchen tiles/flooring/pipes replacement cost a couple thousand dollars
- the wandering episodes
- delusions (false beliefs) and hallucinations (seeing and hearing non-existent things) ...that's only half of what we have been through.
Your instincts are correct about the need for more care/supervision at your mom's stage, and it is a progressive disease so...will only get worse. What a terrible situation for her and for you.Others with more experience can answer your specific questions with APS. I just wonder if it is advisable for you to join her sibs (your aunts/uncles?) in petitioning for the investigation. That is, would it make it more likely for the authorities to include you in any future decisions about her caregiving, so they don't lump you in as just another one of the neglectful children of your LO.
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Hi Victoria2020; and thank you for sharing your perspective.Have YOU talked to an Elder Law litigator in your mother’s state to have your mother’s documents and your brother’s financial documentable actions reviewed ?
I have and her advice is to ask my brother for paperwork or for a GAL be appointed for my mom. He has refused to show me paperwork for what he did with over half of the $600k.
Where is the rental income?$1150Is that house even rented out?She lives in an apartmentHow is the title held? Do you have a copy of your late father and mother’s wills and trusts etc?Yes I have his will and an old version of my moms. When I’ve asked for the will of my mom and beneficiary documents for any trusts etc, my brother will not give them to me. He just says I’m being greedy. I just want the money my mom has to be spent on her care; not on asset preservation. I’ve offered options to hire part time care and be just says she doesn’t need. I’ve offered and installed security cameras to help us she what’s going on at her place, and he turns them around or unplugs them. And this happens after I offered for them to have access to the cameras too.
Since your brother is so “cheap”, to use a shorthand word, if he sees you’re willing to go ahead with having the court possibly review his actions he may decide to be more upfront. $600,000 with legal bills doesn’t last long . But left to his own devices he can probably squirrel it away — so neither your mother gets care or you an inheritance.He already has removed her $600k, all she uses for her income is her SS.
P.S. Purely curious —how did your mother leave and reenter the Country without current ID?The ID she has is the passport.
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Thank you, Butterflywings. The symptoms and actions you experience are similar to that of my mom. She overeats because she forgets when she ate; she is paranoid; she cannot remember conversations within 10-15 minutes or so; she repeats questions; she cannot put socks on; she doesn’t bathe enough; she cannot remember what she should do if she falls and cannot reach the phone.
My uncles know that I care for my mom greatly. They are my brother for who he is. I just hope APS asks to investigate the finances and also interviews others who interact with her.
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Hi, I did buy cameras and my brother turns them around or unplugs them when he visits.0
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Thank you, Victoria. I don’t have access to any documents and he refuses to turn them over to me. He moved the assets into the property and is stalling on things I believe, until the 5 year look back passes by. We are only in year 1. He set up a trust and claims it is for me, but refuses to give me documentation or if he moved it into his name. The $1150 is what her apartment costs per month. I have no idea who is paying for the taxes on the rental property he bought with her assets. I will contact an elder attorney. In the end, I just want my mom to get the care she needs. And this APS check, hopefully with a letter from my uncles making claims, can get things moving.0
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So it looks like you are down to some major legal situations which may not be worth delving into,
There is a difference between a POA and a DPOA. A POA is only in place while the signer is deemed competent. The agent named in either is financially accountable.
- The key differentiation between DPOA vs POA is simple: incapacitation. As a General POA, your agency ends the moment your parents become incapacitated. This means that if they suddenly become unable to make decisions for themselves, you will no longer be able to make important decisions for them.
Re the trust....a beneficiery has the right to see a trust.
- - The right to a copy of the trust document. - The right to be reasonably informed about the trust and administration. - The right to an account.
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Thank you for letting me know. I believe he has a durable POA, so it would be up to my mom to relinquish it. However, she doesn’t even comprehend what needs to happen to change it.0
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Then I doubt it can be changed. Still your brother has a legal feduciary (sp) responsibility.0
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Thank you, JFKOC. Will see how things shake out with APS. Also, do you have any recommendations on meals? My mom continues to forget what she eats and overeats. I think her weight gain is being caused by her dementia. Again, my brother disagrees and says she should eat what she would like.0
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Well, as an update; APS has been notified. Praying they find my mom unable to live on her own. Does anyone know if they interview those mentioned in the complaint?0
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{Well, as an update; APS has been notified. Praying they find my mom unable to live on her own. Does anyone know if they interview those mentioned in the complaint?}
APS does interview those mentioned in the complaint. However, if your mom takes up for anyone in which you complain of, APS may not work out like you desire. Eventually I went for guardianship and it was granted this year/emergency one was granted last year.
Hope to read your entire post soon.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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