My siblings forced my mom into assisted living. How do I find an advocate for her?

Most big family law firms have mediators on staff.

I live in NYC where there are a couple of firms that just do mediation, one is called Peace Institute. There is a national organization called JAMS.

Asphasia, would your family agree to meet with a professional mediator?

I am still not understanding why you can't be her advocate and find a better place that can actually meet her needs?

Everything you say you have to do to understand her and her wants, is not going to happen in any facility. They don't accommodate those needs and it's an unrealistic expectation to think they would.

Here's the thing, you say your sister cared for both parents for 2 years in her home and she is burnt out. She obviously has the POAs or she wouldn't be able to take a loan against your parents house, place your mom or get any information. Your mom chose her when she was completely healthy, honor that your mom trusted her enough to place her life and assets in her hands.

Stop showing mom things that upset her. There is nothing to be gained by this.

Did you know that the POA can say no more visits from sister because she only upsets mom? Yeah, she can and I would if I was in her shoes and my sister kept stirring our very ill mother up instead of helping her adjust to her new normal.

You are obviously really angry at your sister and everything you say sounds more about making her the bad Guy instead of doing what's right for mom.

Why don't you contact her PCP and request a script for PT and OT? Medicare will pay for it.

Stop looking at why you can't and start looking at how you can be a help in the current situation.

I guarantee that your sister didn't make this placement decision easily. She obviously loves her parents or she wouldn't have cared for them for 2 years.

Your mother “is in a wheelchair and has aphasia. She is all there mentally and competent. She has no way to communicate with anybody unless you really pay attention, have patience and know her”. “She was right handed and that is the weak side. She can't write”. That’s my own older sister, Mary, aged 78.

The only difference is Mary’s stroke happened when she was 26, and in the meantime she’s taught herself to write and type left handed. She has also worked on her aphasia, and now we can chat if we are both patient. Age 27, with 2 children under 8, the hospital social worker wanted to put her into a sheltered workshop, and she declined! She then completed her qualification as an accountant, and with her late husband (yet another engineer, who compensated for her aphasia by never letting anyone get a word in edgeways), made several million dollars. She now has a special wheelchair that fits through her doors, and she has a carer who comes for an hour to get her up in the morning and into bed at night, as well as a housekeeper/friend 3 mornings a week.

Mary sometimes repeats herself when she loses a word, but she never “says the same sentence over and over” – that sounds like dementia.

Her late husband’s SIL said to me just after he died “What are we going to do with Mary?”. My jaw just dropped. I wouldn’t even have the nerve to ask her what she wants to do! Of course all that money helps, but she makes her own decisions.

What does your mother want to do? Coming out of her room would be a good start.

Folks with aphasia can use communication boards, PECS systems and other tech-driven devices to communicate.

Have any of those interventions been trialed?

I get that you want your mom back, but your wishful thinking isn't helping anyone. I agree with Alva about there being little possibility for real progress with her physical disabilities, there most definitely is a point where insisting they "try harder" is both unrealistic and cruel. IMO your assertion that you would rather she learn to use a transfer board than a Hoyer lift is just plain wrong - lift transfers are not only easier on staff, they are easier on your mom and they eliminate the very real possibility of injurious falls from attempting transfers any other way. You'll get much farther with your sibs if you can focus your energy on the things that you can change rather than those you can't.

Is Mom in MC or AL? In either case, do they have PT or a way to bring PT in (some facilities do not). Is your Mom on Medicare or a Medicare Advantage? If both she and your Dad are living in a facility, is anyone living in their house? Does your sister agree that Mom would benefit from additional PT ?
I read in one of your earlier posts that your sister has PoA. If so, her decisions kind of trump anyone else's unless your Mother is still competent and wants to withdraw it and give it to you (but be prepared having PoA is not easy!) You can still be your Mom's advocate but PoA calls the shots.
I guess, I'm looking for more information to fill out the picture so I can give you my best opinion.

I don't have anyone in my life who has/had aphasia but I have done some research about it. I know that communication deficits affect different people in different ways depending on the type and degree of aphasia, and that unless there is also a secondary diagnosis of dementia or brain injury most people afflicted retain all their cognitive abilities. There may be ways to help your mother communicate, has she ever had any therapy or has anyone discussed assistive devises? Have you checked out advocacy groups such as the National Aphasia Association?

https://www.aphasia.org/

If care is 18,000 a month then I believe that Mom may be in the Memory Care portion of the facility, which is a good deal more care needed and given than in the regular area of the assisted living. Having verbal aphasia and being wheelchair bound, your Mom may still be "healthy" but, as you say, her care is too much for one person.
In an all out war, with someone unable to speak for herself (which your Mom cannot do) the person who is POA and making decisions for Mom will win, without a doubt.
Please support your Mom's POA in the decisions made for her care. If you make this a court cost for guardianship that person will win. Without a doubt. And if you do make this "a war" then be ready to pay the court costs, which may go to well over 10,000 because the "loser pays" in most cases.
You will have to make decisions for yourself, but you came for our opinions, and that is mine, given what little we here can know of the details.

If your mother is competent she can not be "forced" into any living situation she does not want.
If a sibling has POA and they are abusing the POA (if a person is competent the POA is not in effect) then contact the attorney that drew up the papers in the first place ask the lawyer to meet with your mom. Make sure you have documentation that states she is competent. As long as she can communicate her wishes to the attorney he/she has to pay attention. Communicate is not restricted to speaking her wishes, ideas she can write. And since lawyers charge by the hour it should not matter how long it takes her to say 1 word, he is getting paid for that time.
AND
If mom is competent then the siblings that are trying to sell moms house should not be doing so. If they have a realtor make sure the attorney notifies the realtor that the person trying to sell the house does not have the legal authority to do so.

NOW the big question(s).
If mom, being competent makes the decision to leave the Assisted Living facility and move back home CAN SHE TAKE CARE OF HERSELF???
Will she need a caregiver?
Can she afford one?
Is her house accessible for a person in a wheelchair?
If not can changes be made so that it is safe?

Present an alternative plan and the associated costs with the assumption your sibling won't contribute any actual time or hands-on caring. Can you get an overnight carer for your mom? Can she move into your house or you into hers? Also, if your sister is POA, you will have difficulty making any plans as she will need to approve.

Are you saying you want to bring mom home, you will take care of her during the day? And when you go home who helps your mom? Your sister?

I took great offense when my husband siblings were trying to assign my DH and I as caregivers. I refused to step into that mess. I fought hard to keep it from happening. I worked since I was 15 , for my retirement, not to go into caregiving. I’ve learned a lot from this forum prior. Perhaps your siblings feel the same. What happens when your mom’s care becomes even more time consuming, physically daunting? Please, try not to take offense of your sibling’s. It a huge commitment and will only get harder as time goes on.

I may be glib but, why can't you be your moms advocate if you are willing to care for her in her home? You would have to commit to 24/7/365, because your siblings have said no and nothing is going to change them.

You say she is perfectly healthy except she has aphasia, can't walk, has had a stroke and is incontinent. If this is perfectly healthy I would truly hate to see what you consider ill.

Your mom needs more help then you and your siblings can provide. As hard as it is to face that, that is her reality.

My grandmother had a series of catastrophic strokes, she was fine on Friday and Monday was in full blown dementia/Alzheimer's. It was very difficult because she could still walk and some what talk, she looked exactly the same as Friday's grandmother but, it wasn't her anymore. Her brain was broken and that is what has happened to your mom. The stroke broke her brain and her body. You need to find a way to come to terms with who she is now, because it is only going to get worse.

First off 18k a month for AL is ridiculous. Someone and I mean you, since you want something different for her, needs to find the appropriate type of care facility. This means setting up needs assessments and researching facilities that can give her a better quality of life then she has now.

You can be there as frequently as you were in her home to help her acclimate to her new home. You can create picture boards to help her communicate. You can bring joy and happiness to her where she is.

I wouldn't go to or continue a war with your siblings. It doesn't help your mom and it could be hurting her. Because moms know when something isn't right with their kids. You don't want to make this harder then it already is for everyone.

Please try to find someone that can explain what has happened and is happening to your mom and her ability to function and what that means for her level of care. Then be the advocate that finds the facility that best meets her needs and be there as her daughter and advocate, because those are more important then who changes her diaper.

I know how hard these new realities are, please try to find peace with it, for her and you.

I think some definitions as well as good eldercare lawyer are needed. It sounds like your mother requires more care than assisted living delivers. You are a loving person who knows her well, that covers a lot of bases, that aides who change every 8 hours cannot do easily, at first, if at all. You might keep her at home and use some of the money to get a person in the evening to help you.You might find a place that provides more attention. She really needs a fair amount of personal care, perhaps an OT program that can help her with communication. Do get the lawyer and see if someone can help you and your sister to determine what are practical expectations for your mother's care and reach a compromise or decision. In this area, there are adult care homes that can take good care of individuals like your mother. They have a few residents usually cared for by the the owner and aides. There is a lot of consistency and individual care. They aren't cheap, but even in pricey Seattle, not that high. I saw some excellent care in these places which might suit your mother very well.

Well, repeating the same things over & over is a red flag to me. Being in a wheelchair also makes navigation around her house difficult, if it is not ADA compliant.

Your family might consider finding her a smaller AL facility where she can get more personal care. 18K a month sounds over the top to me, might want to do a little research.

I have 2 people in two different AL's, found each one of theirs by visiting many facilities, matching the right one with each one. Both are satisified.

Please go into this with your eyes wide open. I totally get that your heart is breaking for your mom and you're extremely concerned for her wellbeing. If your mom, aside from her mobility and aphasia is "in her early seventies and healthy" and you brought her home to care for her by yourself:

- is her home ADA compliant? Can she be wheeled into the bathroom easily? Transfer herself to the toilet? Get into the shower on her own?

- does she have a modified van that accommodates a wheelchair? A ramp to get into the house? If not, are you going to be the one getting her in and out (and possibly risking a back injury, which is very common)?

- she could live another 10 or more years: does she have the funds to pay you a fair wage so that you can contribute to your own social security and prepare for your own future retirement, or contribute to a 401K? If not, then you are robbing yourself and your child.

- how will you manage your "time off" so that you get weekends and evenings free? Take vacations? Have sick days? Does she have the funds to pay both you and a back-up caregiver?

- are you prepared to be her only source of entertainment?

IMO the best compromise is to find her a less expensive but more engaging AL that also has a continuum of care and accepts Medicaid. My MIL is in such a place: it is one of several run by Presbyterian Homes and sees its care as a mission, not a business. Places like these cost less and have a more compassionate focus. You don't have to share the same religious beliefs. My MIL is wheelchair bound in LTC and on Medicaid yet she has a private room and gets taken to field trips, goes fishing on their pontoon boat and has many opportunities for in-facility distractions and entertainment.

In a good facility you can visit her all day, use their ADA compliant transportation (that many places offer) to run errands and go places, take her to their clubs, events and activities, eat meals with her and then go home to your own child and have a life. Doing this will get you very familiar with the staff, which helps teach them how to understand and engage your mom more when you're not there. You may find that both she and the staff will adjust to each other and you can reduce the time you spend there so she can feel independent again. I wish you much clarity, wisdom and peace in your heart, and harmony in your family.

It sounds like your mother needs a lot of care and based on our experience, it is hard to get this reliably at home. We did this for our mother until the pandemic, the condition of the house, and her behavior made it impossible and we had to move her to a care home. For the price you mention, she should get more care than being left in her room, perhaps the answer is a better care home or hiring a person to visit her daily to provide more stimulation or a lot of visits by you and your siblings? Don't get the government or lawyers involved, your mom's money will be used up paying them before you get any resolution.

So she sits alone in her room all day watching TV with no interaction - how would that be any different if she was living in her own home? At least at the AL she has the possibility of joining other people, she has staff to check up on her, she has meals and housekeeping, plus you can spend as much time with her as you want without the added burden of being her caregiver.
The cost of the facility does not always equate to better care and I do think that this AL sounds expensive. There is no point paying for high end amenities she doesn't notice, want or need... maybe looking for a different option is where you should focus your energy.

Advocate for what? Where do you want to have mom be? Home? If home. who is going to care for her? Nobody can be forced to provide care for her, your siblings are not going to do it. The cost of in home caregivers is likely more than the cost of assisted living.

Does anyone have any kind of power of attorney for your mother?
When did she have the stroke?
What preferences has your mother been able to express (to you or to anyone else) about her living arrangements?

I am very sorry for your Mom's situation. Asphasia is on my list of awful things.

Certainly having the patience & skills to communicate will be frustrating for both your Mom & caregivers. You have identified this as a possible barrier to meeting her care needs, or maintaining her quality of life. Leaving the funds issue out of this for now.. not all family members could cope with this situation, short or long term. Having high care needs can not always be met by family, or maintained. That is where you now are.

So if family can't - then they can't. What alternatives are possible?

I'd be shocked if you could find 24/7 care for $9,000/month. However, if you think you can find someone to be a caregiver for $12.50 an hour, OK.

However, I'd say your siblings did a good job of proactively getting your mom settled before you dad dies so she won't have the dual trauma of losing him as well as having to move. The fact is, she's not likely to improve, and caring for her is just going to become more difficult.

Your sister has a right to set her limits, and Mom doesn't have the right to demand she sacrifice her time and life caring for her. Not everyone is cut out to do that job. I guess you need to be your mom's voice if you know what she wants. (How DO you know that and no one else does?)

Is Mom just sitting in her room watching TV because she's self-conscious about her aphasia and/or her limitations? Why not enlist the activities director to try to coax her to participate in activities? How about if you go to the facility and join her in some of the activities and help bridge the gap between her and the other reside/ts to help her get to know them?

As for the money, she'll eventually go onto Medicaid when her money runs out, so educate yourselves on how all that works well in advance of her need so you don't make any missteps regarding getting her qualified for it. (Others here can help with that. I don't have any experience with it.)