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My mom has lived in a 1 bedroom apartment in assisted living for 3 years. She's paying out of pocket, but is going to run out of money in about 1 year. The community coordinator at the assisted living facility told me that Medicaid will pay for only a studio in assisted living, but my mom can stay in her 1 bedroom if we can pay the difference somehow. I don't know what the difference is, but I doubt my sister and I will be able to do that or want to do that.


We have maybe a year to plan. Has anyone been through this before? Should I tell the assisted living facility to get my mom on the waitlist for a studio now, and move mom in whenever one becomes available this year? What happens if one doesn't become available before we have to apply for Medicaid for her?


Also, for anyone who has done this, how did your parent react? I think my mom is going to take this badly. When I moved her in, she complained that she didn't have a 2 BR like some people. She got over that, but now says how glad she is she doesn't have a studio like some people there. She has a lot of stuff, she collects various things and like antiques and crafts. Her place is just stuffed, but she still talks about all the stuff she left behind when she moved in.


I worry she is going to complain bitterly and I'll never hear the end of it, but I also worry because she has mild-moderate dementia that is worsening. (She's not in memory care.) I know that moving people with dementia can be stressful and confusing to them, and I also wonder if she'll sometimes go to her old apartment after we move her, thinking she still lives there.



She keeps asking me when she "goes on the dole," but I haven't told her about Medicaid only paying for studios yet.

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It doesn't matter what Medicaid pays.

Your Moms SS and any pension will be turned over to the AL. If you pay them, you will be able to keep a small amount of her SS for personal care needs. In my State $50 but each State is different. Not sure if an AL will set up a Personal Needs account for Mom that is a question to ask the Administrator/director.

If the AL takes Medicaid, they except whatever Medicaid gives them. There will be no balance left over. It works this way with Long-term care too. No facility gets what they charge privately when Medicaid is paying. Mom will have no money and family is not held responsible for any difference.

And, Mom will be on Medicaid for her health insurance. Dental, prescriptions and vision maybe included. This I would check out. Some States require you continue with the suppliment you have, if so, the cost is deducted from Moms SS. Family pays nothing towards Moms care.
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Thank you to everyone who replied and for the support and reassurance. I posted this question about a week ago and then didn't want to look at the replies because I immediately felt some anxiety. Last year was a relatively calmer year after a few years of stress from supporting her living at home, then psychiatric hospitalizations, and then moving her to AL direct from a hospitalization, then her struggles to adapt in AL. This last year has been calmer, and so I'm dreading this next step.

It definitely sounds like we should get her on a waitlist now, so I'll start that conversation with my sister. One interesting reply below is that her AL facility might not even tell us how much Medicaid covers! For those who asked, she lives in Indiana. I sure hope the community coordinator told me the right thing a few years ago when we moved mom in, that she can stay if she runs out of money because Medicaid covers the cost of a studio ("and we just have to pay the difference" to keep her in her 1BR). It sounded so easy, but ha, I know now that nothing is easy in caregiving.

If it's true that Indiana does cover it, she is indeed very lucky, and I'll be telling her that. Thanks for that.

Her AL facility also has a memory care unit, so I'm hoping we can keep her in the same facility if she lives long enough to need memory care.

My mom has severe anxiety (and has been hospitalized for it), is very emotionally needy, demanding, and delicate. She is also tends to see herself as a victim of others. She's always kind of been this way, but it's gotten worse in the last few years. She shops as therapy and fills her apartment with things. My sister and I take a full garbage bag of stuff out periodically, and she replaces it within a few months (friends and family take her to thrift stores at her request and she also gets stuff from the free table in her AL facility). She's still able to post to Facebook on her iPad, and she recently complained about wanting to go shopping at thrift stores without "the watchful eyes of my family." Sigh. And like another commenter said about her mother, my mom is into status. So with all that combined, I think she's going to be extremely unhappy. But I'm finally getting to the point of backing off trying to please her and fix everything for her, and just letting her complain.

I haven't posted here much, but I'm really grateful for this community. Thanks to you all, and take care.
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Llamalover47 Mar 2023
tiredmouse: Thank you for your post.
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Well, tiredmouse, you haven't posted again, so what does that mean? What have you decided to do? Here's what I see happening if you don't act ASAP...you don't put Mom on a waitlist, she will run out of money without a studio being available. You and your sister will be paying the difference between a studio and a 1-bedroom.

If you can't do that, you might (very very unwisely!) decide that you or your sister will either move in with your mother or have her move in with you.

And then you (or your sister, although somehow I think it would be you) will be stuck until you can tell a hospital or rehab at some point that you can no longer take care of your mother.

There can be an awful lot of bad stuff before that happens.

So get on the ball immediately and put her on the waitlist for that studio.
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Studio, I moved both of my LO's who were in a 1 bed to a studio, to extend their money, they are both self-pay, saved them each $1,000 per month, they are doing just fine.

You need to make the best monetary decision for her, it is what it is. She did not plan properly for her old age, that is not your problem.

When the time comes she can move into MC.

Get her on a waiting list, start the process with Medicaid as soon as you can.

If she needs to downsize her collections so be it, that's life. If she complains that is ok too, she will get over it. It is about her needs not her wants.

Sending support your way.
.
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AmyLL0V3 Mar 2023
Thank you this is helpful
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In my opinion I say the studio, unless you and your sister can comfortably afford to pay for the 1 bedroom. You also may not want to be without the option when the year comes up in case you can't pay it. Where I live assisted living is between $4000-$6000 ( we looked for my uncle) it is ridiculously high. If her insurance covers it, it will be a change for her but you and your sister need to live comfortably financially as well I think.
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tiredmouse: Perhaps she should be in a memory care facility since she unfortunately suffers from dementia.
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then she would go to a studio room - they are very cute and can be fix in an adorable way esp for woman. she wouldn't have to worry about goin far to get something. it's nbd really!
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tiredmouse Mar 2023
Thanks--I wish she had your attitude! Her best friend in assisted living has a studio, and my mom talks about how small it is and how glad she's in a 1BR. Sigh.
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With a diagnosis of Dementia I would strongly suspect that she would be better in Memory Care rather than AL

There is no way that you or your sister should fund mom in her remaining in her 1 bedroom apartment.
You need your money for your retirement and possibly fund your stay in AL or MC. The same goes for your sister.

If mom is in Memory Care she will not be able to go to her old apartment as most MC are locked units so that residents can not wander off.
If there are no plans to move her to MC it might be wise to begin her move to a Studio apartment now while she still remembers where her new apartment is, This will save a bit of money now so that she will not have to relay on Medicaid as soon.
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tiredmouse Mar 2023
Yes, I had that thought too that it might be better to move her now so she gets used to where her new studio is. No plans to move her to MC yet, although I'm sure it's in her future if she lives long enough. The AL facility re-evaluates her every 6 months and she's ok for now.
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I would say that if her dementia is progressing she will probably require higher level of care than assisted living will provide by the time she runs out of money. AL is very limited hands on care. The next move will probably be memory care nursing home.

If you/sibling can't afford out of pocket rent or in home care with enough hours to care for a person who has dementia, your options will probably be limited to Medicaid nursing home bed.

Being on Medicaid indicates her income is very low. If she still has a home that could be sold at fair market value that could buy her more time where she is, but you would need to involve atty to ensure proceeds could be put in trust to pay rent (which may not be allowed) and not cut off her current Medicaid. An atty in her area could provide you with more info about Medicaid and programs where she is.
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tiredmouse Mar 2023
Thanks--we sold her home a few years ago, and that and her SS and pension are paying for AL right now. The AL facility recommended we use a lawyer to apply for Medicaid, so we'll be doing that.
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Get her on the wait list for a studio, pronto. She has dementia so she doesn't get to weigh in on any decision making anymore, and really there is nothing to weigh in about. If there is no money, there is no one bedroom.

Do not spend any of your own money. You need yours so you can have that one bedroom when it is your time. :-). Seriously, I hope you get that studio for your mom. Good luck.
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AngieGuido74 Mar 2023
what about medicare paying - the daughters wouldn't have to pay if their mother can't -
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Hi Tiredmouse - the reality is, your mother would be extremely fortunate to still be residing in her assisted living community. Maybe it's more important that you focus more on changing YOUR mindset in worrying how your mother may react to downsizing to a studio. If she complains, then continue telling her just how lucky she is - and how difficult it was for a new apartment to open up for her!
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tiredmouse Mar 2023
You're right on both accounts, thanks.
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I figure that when time comes to downsize, I must accept it whether I like it or not. Today, I am planning to downsize from my two-bedroom condo to a studio someday in independent living where I may age in place. That's a life event we all must accept unless family and yourself have dollars to pay for help to keep you safely in the home of a place in AL.
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tiredmouse Mar 2023
My mom does try to accept sometimes, but it's hard for her... I explained more above, but she also has some psychiatric issues. I wish she could see things this way and accept the changes and losses. Good luck to you.
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Get her on the waiting list for the studio right away. It may be a very long wait so do it now.
You and your sister do not "pay the difference". The "difference" will very likely be however much the facility can squeeze out of you in cash. Guaranteed they will never allow you to know what Medicaid pays them. So don't do it.
Your best bet would be to just tell your mother the truth. That she will have to go on Medicaid soon because her money is running out. Medicaid does not pay for the 1 bedroom apartments. They pay for a studio.
When the bitter complaining starts up, tell her that you do not make the rules for Medicaid and that her choices are take the studio and be grateful to get it or go into a state-sponsored memory care/nursing home because that it the other choice Medicaid will pay for.
So when the complaining starts up give her the contact number for Medicaid in her state. Tell her she can complain bitterly to their automated system all day long if she likes but there's nothing you can do about it.
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tiredmouse Mar 2023
I had no idea that the facility wouldn't actually tell us how much they get from Medicaid. That's eye opening.
Lol, she probably would try to call them to complain if I gave her the #. She made some noise a few months ago about "writing a letter" to someone to complain that her BFF in assisted living only has a studio.
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I’m so sorry you and your mother are facing this situation.

Yes, get her on the waiting list for a studio now, and go ahead and move her when one becomes available. The move is inevitable, so just go ahead and do it even before her money runs out, if you can.

Let me ask you this, Tiredmouse. What if YOU were living in a 1-bedroom apartment but could only afford a studio? What would YOU do?

You would, of course, move into the studio. Beats being out on the street, right?

Your mom can complain all she wants, but facts are facts. She cannot afford the 1-bedroom apartment when her funds run out. You and your sister should not foot the bill for the larger apartment. You need to prepare for your own future needs. As others have said, Mom is REALLY lucky that Medicaid will pay for the studio in her state.

As her dementia develops, the smaller space will be more appropriate to her needs, anyway.

My mom went through a similar forced downsizing a little over a year ago. I had to move her from her 1-bedroom Independent Living apartment into a studio in Assisted Living. Like your mom, mine was very status-oriented about her apartment, so she was beyond furious that she had to go into a studio. (In her case, the studio is necessary so that she can afford the higher (self-pay) cost of care in AL, including future increases in care as her dementia worsens.)

Your mom and my mom have lost their ability to use logic and reasoning. It just is what it is.

I, like you, was devastated by my mother’s anger toward me when I had to make the move for her safety and her financial well-being. It was a miserable time. But it had to be done.

None of us gets to have everything we want for free at any point in our lives. That’s not how it works. My mom would growl, “THIS IS NOT MAKING ME HAPPY!” After several months of feeling awful about that, I realized that “making Mom happy” is NOT the reason for my existence. My job is to keep her safe and see that her needs are met. I love her, but her choice to blame me for her age-related losses isn’t something I can control. She finally caught on to the fact that I was no longer cringing under her angry words, and she has mostly adjusted to her new living arrangements.

When our parents’ possessions and status are more important to them than their relationship with the family members who are doing their best to help, we just kind of have to step back and let them stew until they adjust.
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tiredmouse Mar 2023
--"What if YOU were living in a 1-bedroom apartment but could only afford a studio?"

Well...good point. :)

--"You and your sister should not foot the bill for the larger apartment. You need to prepare for your own future needs."

Yes. I have a lot of anxiety about my own future now, after all this. My husband and I already bought long-term care insurance in our mid-40s based on my mom's situation and the fact that dementia runs in my family. It seems like LTC insurance doesn't work exactly great, from what I've read, but hopefully it's better than nothing.

--"I, like you, was devastated by my mother’s anger toward me when I had to make the move for her safety and her financial well-being. It was a miserable time. But it had to be done."

I'm so sorry, and I completely understand. It is devastating, that's the right word. I'm glad she has mostly adjusted and that you were able to come to the realization that you aren't responsible for her happiness. I'm still on that journey, but I'm glad to be on the journey after not being on it at all. She is safe in AL, and I think you're right about just letting them stew.
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What state does mom live in? Most Medicaid programs won’t pay for AL so it’s quite fortunate that her state is even willing to pay for a studio.
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tiredmouse Mar 2023
Indiana
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Get your mom on a studio wait list and downsize her one bedroom now. Like some others have said, put excess items in storage. Once her dementia worsens, give away or toss unwanted items in storage and fit into the available space of the studio. She does have to accept change. Can a social worker talk with her now?
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My brother moved into ALF one bedroom, two total rooms because he could well afford it for his lifespan, but the truth is that one room is the norm in ALFs and that should be the choice for anyone in danger of losing their funds before their lifespan is over. I am surprised the ALF has medicaid at all. My brother's facility did not, and that is also the norm.

I would simply explain to Mom that she will be moving when her funds are over, so to begin to think of how she might downsize her treasures. Do tell her when she "goes on the dole". She wants to know, and it is fair that she should know. And do tell her how rare her facility is among ALF facilities, and how lucky she is in that.

I sure wish you the best. Aging is full of losses. It is ALL ABOUT LOSSES. That's hard when you are in a weakened condition, but it is a fact best acknowledged all the while knowing how lucky we are to have nice living facility and supportive family as your mom has.
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tiredmouse Mar 2023
If I could do it all over, I would have moved her into an AL studio to begin with, rather than her AL 1BR, to stretch her money like you said.

I wish my mom could understand the loss part of aging, but she doesn't really have the emotional intelligence to understand or accept that.
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I agree with others who advise getting her onto that waiting list right away. And the administrator may have an idea of when a studio is likely to come open.
Can the facility talk to her about her rooms becoming too crowded for safety reasons, and ask her to work with you and your sister to 'prune' some of her stuff? It's a way to start the process without connecting it to a studio apartment.
Perhaps you and your sister can each create some space to store Mom's belongings at your homes as she downsizes in advance of moving. Chances are good that what is 'out of sight' will be forgotten and then you can slowly discard items....but she has time to ask for something back.
Maybe you can work with her about giving away items to certain people, who would enjoy them...maybe ones that have a memory attached.
Maybe you and your sister could ask her to tell you stories about some of her pieces, as a way of finding out the memory that it triggers for her. Stuff that she can't remember why she has it may be easiest to remove.
The questions about losing possessions and money are common worries at this age. Nobody wants to run out of money and end up homeless. And keeping stuff is proxy for keeping evidence of her adult life, and of refusing to give up anything else....as she has lost so much of independent adulthood already. She is aware of losing her memory, at least some of the time.
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I would give anything to be able to keep my parents in a studio at their assisted living. When their money runs out, the state won't pay for any care whatsoever at AL and they will have to move to a nursing home. They are a nightmare in this area and the care is horrible. Your mom is very blessed; she just doesn't know it. However, my parents were adamant about having two separate bedrooms. But when the time came for them to move to AL, they forgot all about that, thanks to their dementia. You may find that true for her, as well.
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In my opinion you should get her on the wait list for a studio and ideally she would move into it as soon as one is available, but if she decides to "go for broke" and spend down all of her money, that is her choice, if she is still mentally competent to make this decision. While she is still able to reason and sign legal papers, make sure all of her paperwork is in order. She needs to set up powers of attorney for medical (healthcare proxy) and financial matters, have a will and a living will with her advance medical directives. Get a credit card with your name on it on her account, and also notify her bank, social security, medicare, her credit card company who her POA is (so that the POA can speak and act on her behalf). Have a discussion with your mother about her finances and what Medicaid will pay for, and how she will be better off if she can make her money last longer, rather than spending it on a large apartment. But also listen to her and her wishes. If at some point she has to move to assisted living/memory care/skilled nursing, it will be best to remove all valuables and breakable items from her apartment. Downsizing is always difficult, so be patient with her. Sometimes you can do it in stages. First put things into storage, then dispose/sell the items from storage. Anxieties about money are common in seniors, and you need to do what you can to show her that she is going to be OK and have a decent place to live. All the best to you both!
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You could try looking into the various programs her state may have (not all do) for helping to keep elders in place. Since this is basically an apartment that she has been paying rent on the state may have a program that assists with the rent. It will of course depend on her income and you will want to check on what aid is available for Medicaid recipients and non recipients as it may help you figure out which way to go and when but some systems really do try to keep elders in their current situation as long as it isn’t costing them more than full time facility care (LTC).
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Mom should be glad she is getting a studio. Some ALs when someone goes on Medicaid they have to share a room if they want to stay.

Ask the Administrator what xtra you would have to pay to keep Mom in her 1 bedroom. Not that you should or have to pay it, just out of curiousity. My Moms AL had 2 or 3 size rooms. I would say Medicaid will pay for the smallest. Your Mom is just going to have except that she will need to move. She has to realize she is one of the lucky ones. Her SS and pension will go toward her care and she will get a Personal Needs Allowance out of her SS. In my State its $50 a month. So she will have no xtra money unless u want to provide it.

I think the best way to do this is u, Mom and the Administrator sit down together. Let the Administrator tell her what is going to happen once her money runs out. No, she probably will not like it but she really has no choice. So let her rant and rave and cry. Let it all sink in. When she brings it up, then discuss it calmly. Do not tell her that someone else could pay the difference for her to stay in her 1 bedroom and ask the Admin. not to mention it because it won't happen. She has to except its what it is.
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You move her to the studio lol. If she "complains bitterly" you get up and leave.
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I agree that starting to prepare now is a good idea. Considering that she keeps asking I think it would be right to tell her. She may be upset but the change is coming regardless. Please don't take her complaining to heart and try not to worry. It doesn't help anything or anybody.
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Start downsizing her now. Talk up how wonderful it will be when others can enjoy her quilts, stuffed animals or whatever. Maybe she could help you choose the target charity, such as quilts for sick kids. Then lovingly take a picture of each item and put it in an album so she can look at it whenever she wants. She can even make the album if so inclined.

She needs to face the fact that she’s going to move to a studio. Don’t subsidize her in her one-bedroom. We all have to do things we don’t want to do! Grow up, mom.
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I’m sorry that your mom will be running out of money soon.

I wouldn’t ask your sister to help you pay the difference. Nor should you make up the difference.

You need to use your money for your own needs, instead of paying for your mom’s expenses.

Your mom will adjust and if she complains, oh well, it isn’t the end of the world.

You are fortunate that Medicaid will pay for an efficiency unit in your mom’s building. In my state, Medicaid doesn’t pay for any units in assisted living facilities. Medicaid here only pays for a room in a skilled nursing facility.

By all means, have them place your mom on the waiting lists for the efficiency unit.

I would try to start scaling down your mother’s inventory of collectibles now.

It sounds like she has too much for her one bedroom unit and you already realize that it will not fit in her efficiency.

Please be at peace with your decision to have your mother downsize.

Wishing you and your family all the best.
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Mom will just have to face reality that she will have to move to a studio once her money runs out. Dont fund her keeping the one bedroom. Financially it wouldn't make sense unless you are pretty well off.

Really a studio is not that bad. My grandma lived in a studio apartment and it was pretty cozy before she moved in with my parents.

Sure a separate bedroom is nice but it's not the end of the world.

No one wants to have to lose everything as you get old but what I have learned from this forum is that everything gets taken from us as we are piece by piece as we age.

I like your idea of getting her on the waiting list. Mom will have to start paring down her stuff now.
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NeedHelpWithMom Mar 2023
We were typing at the same time and typed similar posts!
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