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My mom was forced into an assisted living by my siblings. She is in a wheelchair and has asphasia. She says the same sentence over and over, but 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.



In the assisted living she has a small bedroom and watches TV all day with no interaction. Nobody wants to talk to her because they can't understand her. My siblings want to sell her house to pay for care. It's $18,000 a month.



I split the responsibilities with my sister and she doesn't want to do it anymore. I've been taking care of my mom by myself at her house. I can't do it 24/7. I have a child who I need to be home for at night but I don't mind doing it during the day.



She is a really good mom, she's in her early seventies and healthy.



I need to find someone to advocate for her, this is turning into an all out war. My sister doesn't want to deal with it or my objections anymore. Who specifically can do anything before it's too late and her house is gone and she has no choice but to live the rest of her life with no one who will listen to what she is trying to say?

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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.
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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.
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babsjvd Apr 2022
Well said !

also , Asphasia99, there are placement companies that will work with you to find a appropriate AL for your mom. I used a company named, care patrol for my in laws and my mom. The placement specialist knows the cost, availability, needs, arrange tours and will meet you for them. They get paid by the AL.

I wish you peace with this
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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.
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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.
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Asphasia99 Apr 2022
I was caring for both my parents at their home by myself. It was frustrating because my mom would berate my dad for wasting money.

It was too much for me to be there from 7am -10pm. I only live a couple miles away so I was constantly bouncing back and forth picking up my child from one place to the next and making him hang out with me at their house after school when he wanted to go home. We'd get home after 10pm.

My house is small. Her wheelchair won't fit through the doorways.

Moving in with them fighting would be bad for my son. On the other hand, when my dad went into the hospital and it was just my mom...peas & carrots. It was easy and my son and I spent the nights there.

My sister wouldn't have to do anything but visit if she wanted to. She's burnt out on taking care of both my parents in her home half the time for 2 years.
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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.
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Geaton777 Apr 2022
I had that same thought...glad you put it out there as a possibility.
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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.)
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Countrymouse Apr 2022
Her Dad? Where's the information about her Dad, please? - I can't see any.
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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.
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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.
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Asphasia99 Apr 2022
When she's at home she sits on the front porch and the neighbors come by, talk to her and listen. They've known each other over 40 years and one lady pats her arm and says "I know what she's trying to say". They share memories and my mom laughs and nods her head remembering.

I am there, we watch TV shows together, I change the channel for her - she doesn't have to call a nurse to do it and have them figure out what she wants to watch. She's embarrassed or doesn't want to be a bother to call them back right away if she doesn't like what they put on. I do her exercises with her. She gets no physical therapy in there.

My son skateboards over, sometimes with friends. We have dinner together, she's in the kitchen watching us cook - chastising us when we put too much water in the rice cooker.

She likes being apart of life. She was into crafts and I help her complete the ones she was working on. I like taking care of my mom. She could have round the clock help and be happy with one on one attention for the same amount as being in assisted living, less even.

Friends of mine come over and wash her hair, do her nails, massage her legs and feet. When I wake her up in the morning and put her bed I spend 20 minutes just rubbing her legs with lotion and her arms. They don't "touch" her at that place. They may put an arm around her and do a side hug.
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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.
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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?
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