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?
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.)
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?
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?
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.
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.
- 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.
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.
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.
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
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.
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.
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?
There is no abuse on my sisters part, she is the realtor though.
My mom can't take care of herself. She was right handed and that is the weak side. She can't write.
If she stayed home, their pensions would pay for a few different caregivers full-time. Someone to get her a diet coke with ice, change the channel for her, answer her phone when someone calls, do her exercises with her. One on one attention.
She can go to the living room, kitchen, dining room & family room. The house is 2 stories so I put her bed in the dining room and added a screen and a door. It would be cool to expand the downstairs bedroom as a suite for both my parents with a walk in tub.
They could have done it with the money they have spent already for the assisted living.
Yes, my mom was forced into going. My sister showed up with her friends and pushed my mom's wheelchair to the van, strapped her in while she was crying and took her.
Her doctor told me he would give me a piece of paper saying she was competent to make her own decisions, she just needs 24 hour care and she can stay at home. Only I'm not on her emergency contacts and he couldn't release it to me.
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.
https://www.aphasia.org/
My sister holds the purse strings and won't pay out of pocket with their own money to get one. They keep waiting for insurance approval and half hour sessions once a week over zoom.
Its beyond frustrating. I will check on the advocacy group now. Thank you
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.
OP, you can inform your mother she has that option.
Have any of those interventions been trialed?
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.
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.
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.