What to do when my mom does not have the money for the care she needs at home?

Thanks for asking Barb. I really appreciate it. It feels good to know others care. And thanks for your reply and support too Kimber. There has really been no change other than Mom did sign up with a home health service, so she has a nurse, personal care aide and PT coming 2-4 times per week (combined visits). She really likes the PT (this time) and they are working with her to get up on her own (when she is alone). However twice in the past 2 weeks she slid into the floor while attempting to transfer back to the bed from the wheelchair, and she REFUSES to let anyone help her up because of her weight, (she's afraid they will hurt their backs even though they are trained), so she calls the fire department to help get her back to the hospital bed. She has successfully transferred on her own a handful of times lately, but she went about 6 weeks with only getting up out of bed twice, (because she was afraid of falling again). She is out of money, stays withdrawn at the bank, had TV & internet disconnected and most recently (yesterday) her water cut off. I have helped a little financially, (only a small amount and only when it was an emergency-type situation). She is so worried about how she can continue. I keep telling her that she must get up more, become more independent if she wants to try to stay at home. It's really hard for me NOT to help her financially (I mean it really kills me), but everyone tells me NOT to. She only has 'me' as far as family goes and she always reminds me of that. Her other daughter and niece live in the same town, yet do not call or help her in any way. They used to help some when there was an emergency, but now they don't respond AT ALL to any of her messages. She says things to me like "There is no telling where I'd be if it weren't for you and all the things you've done for me." Everyone tells me that is her way of manipulating me, and controlling the situation, and I understand that, but I still find it impossible not to help "a person" in need. (Anyone.) She does keep me 'informed' of her daily events through Facebook messenger. But then she will say "don't try to fix this, I'm just telling you how things are." Or she will say "I know you'd want to know." (And I do, but it drives me crazy not to step in and take over." (Although I have tried in the past, she didn't want any help i.e. POA when I tried.) I also told her 2 years ago we needed to get her house OUT of her name...That is still not done.
She had to stop the daytime private-pay caregiver because she couldn't afford it. The young lady across the street (18 y/o) has been staying overnight and on weekends, but not charging Mom for it. She only charges her about 2-3 hours per day, and Mom struggles to pay for that. And....she 'expects' WAY too much from this teenager. Now this girl is starting a weekend-day job so Mom will be alone during the weekend days now too. (I actually have been encouraging Alexandria to get out of Mom's house more, the poor thing was there all the time, she even spent her spring break taking care of my Mom. She did get to go out one day.) Her other caregiver/house cleaner, who's been with her 10+ years, comes after her day job and also helps out on weekends, but for example, she owes her for 14 hours and can't pay her until May 1. Mom isn't really doing anything to change the situation. I DO plan to tell her, "Mom, you have to get a plan." I helped her apply for a grant from the state for the aging & disabled, but if she were to get any money from that it wouldn't be until July 1. The representative from APS visited her again and she told him about "all" the caregiver hours and so he told her he wouldn't need to check on her again! (surprising). I just don't see an end to this. I think the only thing that will change is a serious fall where she breaks something and has to go back to the hospital.

Thank you again for all your support. I'd love to stay in touch.
Thanks, TBrown

i've read through your post a few times. As hard as it will be for you (guilt) you should not continue to pay for mom. Mom will need to make some decisions about changing how she is living - but it is not your problem mom made bad decisions along the way. It is only going to get worse and more expensive if you continue to support her. I'm sure your husband isn't happy with the funds being used for your mom also.

Your mom has shown no initiative in changing anything - nor will she - while you enable her. Don't give her the money and say "no more - you need a plan". She'll have the money. Say to her "you need to figure this out, i can't give you any more money" - she'll raise a huge fuss (so did my mom) but she is an adult and can figure it out. Route some social workers her way.

TB, how is it going with your mom?

Thanks again to everyone for answering....As of yesterday Mom is "in shock" about her money situation. She is at home since 12/27/17 (from rehab/NH) and is unable to pay for all the private care she needs. She keeps apologizing for her bad decisions, so by her telling me all this, it feels like she is expecting me to pay. For example, she has $800+ in NSH fees at the bank, and needs to borrow $2000. How can I not help her? My husband, other family members and all friends (including everyone on this site), tell me NOT to help her financially. (I live 900 miles away. My sister and niece live in same town as Mom, but they have offered ZERO support to her and do not even call her.) Mom is paying private pay for almost 24/7 care. As of yesterday she has had to stop all those caregivers' hours. WHAT DO I DO?? I'm thinking, tell her that I'll give her the money she needs now, but she (we) HAVE to have a plan. BTW, I told her in January when we laid out all her financials, that she would need an extra $2500 per month to cover everything and she just ignored this fact. Now she's $2000+ in the hole and can't pay her bills, not even for the hospital bed she has at home.

tbrown - Medicaid does offer home care under a nursing home waiver program in some states. There's something called the PACE program (Program of All-Inclusive Care for Elderly). I don't know if it's called that anymore. Google your state Medicaid and look for long term care services and supports. Hopefully there's something in your state your mother could use.

My mother is not disabled enough for a nursing home under Medicaid, which is why she can't use a program like this. But it sounds like your Mom has qualified for Medicaid and this program may be available to her. I believe they have limited budgets and perhaps waiting lists depending on where you are, but it's worth checking it out.

I have read that Medicaid/LTCS would pay for regular in-home visits of assisistance (housekeeping, meals, welfare check-one), but I'm not sure. That is what I am going to have to try as my mom is in a similar boat. She's got limited SS income, reverse mortgaged condo, clear signs of cognitive impairment, cannot keep the condo clean and has had two mouse infestations that she denied were happening and would not let me do anything about it until she was threatened by the HOA. She does not trust me (only child) to decide what needs to happen going forward and I am not honestly sure I am smart enough to navigate it anyway. And of course I truly am the LAST person she will listen to, so any of these "You have to tell your mother not to..." platitudes are just words that mean nothing. I'm going out to her condo today to do my best to clean mouse feces and try to throw out a lot of things even though she will protest.

Thank you all again for your answers and support. Mom says she writes checks when she knows she doesn't have money in her account, because her bank will pay them, and charge her $33 for each insufficient fund fee.
I have told her that she needs to apply for Medicaid, and I have even pre-applied for her. She says she's worked too long and too hard to give the government all her money, and she doesn't want to lose her house...Although she has a reverse mortgage on her house, she might get a 'little," but not enough to help her long term. It's REALLY hard to tell her that "You just need to..." she just keeps saying she doesn't need anyone telling her what to do. I guess she's in denial of what the next step is (nursing home). Even Assisted Living isn't an option, just too expensive. There really should be more options for seniors in this situation. Does anyone know of ANY other options other than nursing home that Medicare & supplemental (or Medicaid) will pay for?

If she is writing checks that obviously won't be covered.. In some states that can be considered a crime. Part of this may be because she is declining mentally, but it sounds like it's always been an issue. I wonder if these actions can help to get her declared incompetent to make decisions??

I would be sure to protect yourself so that you can remain emotionally and financially stable. Unfortunately her actions are digging her into a big hole and you shouldn't have to sink with the ship.

Tbrown62 and BarbBrooklyn your comments definitely mirror some aspects of what I think I am facing with my mom. SSI is only income, she spends it with poor judgement (makes car payments on a car that is impounded...for the third time in a year for driving with suspended/revoked license), runs out, does not (now I reckon, cannot) keep track of what is left, and I cannot help her out all the time. She also has a condo that's been reverse mortgaged...and won't get a dime for it. There is definitely now clear signs of dementia, and our only hope is now trying to get set up with some regular in-home care but I am INTIMIDATED by what I've seen about applying for Medicaid or LTC. I am new to this (more honestly, I am new to admitting it and processing it and becoming more active in managing it) and am realizing I need to just plow through it. I didn't want to face it but I just have to start attacking this knot of guilt, worry, anxiety, and confusion. I was kind of pleased to see that folks don't mind talking about it. Thank you and sorry for ranting.

Isthisreallyreal is right, you know.... I believe in the Bible absolutely, but it doesn't say people get to stay in their own home to the end no matter what. Someone on here said "It takes a village" to keep some elders going; that's how it is for my mom now, and I'm going to have to do the right thing and get her into a nursing home soon, same as you probably should; it will be the right and safest thing to do, which they can no longer see.... God bless; we can do this...

Sometimes the best help is to hold people accountable and stop enabling.

Enabling bad desicions is not helping her. Getting her into a facility that Medicaid is going to pay for where her needs will be met, meds managed, warm, safe and taken care of, that is helping her. Giving into people's harmful, self destructive wants and ignoring the facts of actual needs is an easy out. You don't sound like that kind of person, you sound very concerned and very desirous of doing the right thing, addressing her needs is the right thing IMHO

Thanks for all the great answers and support. There hasn't been any change and Mom is out of money. She cannot pay her bills and constantly is overdrawn at the bank. Last time I looked she had over $520 in NSF fees. I just feel like we are SUPPOSED to help family. The Bible tells us to take care of our parents and family. How can I ignore this? (1 Timothy 5:3-4, 8)

I cannot figure out how to reply, so I will just type here. Mom will be 76 this year. My sister and niece live in the same town as my mom, about 20 minutes away. We've tried to have her cut back on "bad" foods, but she seems to find someone to bring it to her.

Think about the future when sister and niece will be able to take mom some of her favorite food and visit while she enjoys it, knowing if she gets ugly they can get up and walk, now see yourself coming to visit and doing the same thing, with the same choice of being able to walk away. If she is safe and fed and cleaned, you can all know that you did the best you could for her. Don't listen to the guilt trips or the manipulating rants, she will not be happy, you said she is stubborn and that will never change.

Please do not try to guilt your sister and niece about helping her, you probably only know some of the story and frankly, walking away is the only way of dealing with some people, we can not let anyone suck our life source out of us, you are 900 miles away and feel the heavy burden of mom, how much harder for your sister and her daughter?

Let her live the consequences and follow all the good advise, don't cave in, you can do it!

Brown, Mom has good care available to her due to the forsight of family. She continues to see no reason to change mainly because she has not yet had to bear the consequences.
How long will it be before the bank closes her account?
What will happen to agency aides when they don't get paid?
Home equity loans have payments due.
Property taxes if not paid will have the house confiscated.
No one will buy supplies if she does not reimburse them.

Mom has no self discipline or is seriously demented.

Up till now mom has got away with going her own way partly because she has been enabled. Not a criticism of family who out of love or obligation have felt they can't let her suffer.
She is not going to change till she has to.

The help I would suggest is that you draw up a list of her obligations for each month and compare with her income and ask her how she plans to make up the shortfall which is probably $2-3 thousand a month.
There are no ifs buts or maybes to this conversation. It is up to her. No bailing her out this time so she can start with a clean slate. You have to stand firm how ever hard it may feel. You are not guilty of anything unless it is enabling her in the first place. She has had no reason to try.
Now she may be incapable because of mental incapacity in which case she needs memory care., or because she has been able to guilt family into picking up her slack, in which case she has to accept realities and find a way to live within her means.

All her worst fears WILL come to reality but the rest of the world has to deal with personal realities which we may not care for.
Mom has a big safety net, she is pre approved for Medicaid which is a big benefit. Yes she will have to do the PT but all her supplies and assistance will be provided. There will be a certain amount of discipline but she has experieced that before. Meals will be healthy and little junk food.
This is not meant to be harsh or critical of you all. Just the way i see the reality of your Mom's situation.

Brown, tough love. If I were the family members caring for mom, I too, would stop. Just as you do not want to continue to pay for mom's supplies because of enablng, other family members do not want to enable her either. Sometimes it takes an emergency to get an elder into permanent facility care, which obviously you mom needs. Stop the anger with other family members and instead become a team to stop enabling mom and instead get her into the care she needs.

If you pay one dime you are contributing to the problem. She is addicted to junk food. When she can’t pay the care givers you can bet she will have money held back for junk food. Your sister has probably found the only way to keep from being drug back into your mom’s addiction is to stay away. So good that you didn’t sign the contract.

tbrown62, thanks for the extra information.... it is great to read where a grown child has all the right information regarding their parent. You are definitely armed with knowledge that will come in handy, even though your Mom disagrees.

To many times grown children unintentionally enable their parent to continue to live at home when, in fact, that parent now needs a village to take care of her. But the parent is in total denial. My own Mom was like that. Thankfully my Dad knew he couldn't manage without outside help.

So for the stubborn parent, we just wait for the next medical emergency where 911 is needed, trip to the ER, and a stay in the hospital. Past history will show your Mom refuses Physical Therapy at home. Chances are she may need to go into Rehab whether she likes it or not, or Medicare/Sub Insurance may decide not to pay for her care regarding this issue.

Here's hoping your Mom eventually starts to see reality that she does need the extra care.

Umm, has your mom ever had a real workup for dementia? Not the "oriented to time, place and person" but an in depth examination of her cognitive and reasoning skills?

You would probably find that she no longer has any planning ability. She doesn't get how much money she needs and is no longer capable of making good choices.

I don't have any solutions, but if I were you, I'd get her on waiting lists for Nursing Homes you deem acceptable. The next time she's hospitalized, they may not let her sign herself out.

Thanks to everyone who answered, all such good advice. It is definitely reassuring to hear the supportive words that I do not, nor should not help her financially....because she is making poor (stubborn) decisions not to help herself.
Mom will be 76 this year. She is very cognizant, although very stubborn. Will not let anyone tell her what to do. She will "do as she please, WHEN it suits her." We've all heard this many times. She earns $1800/mo. and currently has Medicare with an Aetna supplemental. We had her prequalified for LTC Medicaid, but she refused to sign up fearing she would lose her house. She has been homebound for the past several years. (Could have left the house, but chose not to.)

She has tried to come home twice before from two different rehab/NHs and wound up at the hospital again. We helped her make arrangements to go back to the rehab/nursing home as Medicaid pending (which they were making an exception for her), and she decided last minute she wasn't going back, she just "couldn't face those PT people." I am familiar (now) with the ins and outs of what Medicare will pay for and how it works with LTC Medicaid.
Mom keeps saying she is afraid she will lose her house, and she will eventually if she were to go to NH and not return home within the first year. BUT....she has a reverse mortgage on her house and hardly any equity left, so she would not be losing much. I think she just doesn't want to give up her independence and what she calls freedom (even though she has been homebound for the past several years).

I live out of state (over 900 miles away). My mom has a daughter and granddaughter who live in the same town she does, but they have on again/off again relationships with her. They have "had it" with her many times and both are angry with her right now because she chose to go back home instead knowing she needed 24/7 care. Even her doctor told her she was not to be left alone for more than 1-2 hours at a time. So my sister and niece do not help her at all, they do not even call her, which is the norm for them even before these latest developments. I do understand they are angry with her because she has used them and has 'expected' so much from them over the years, but on the other hand I feel they should contribute some time helping her even if they can't help financially.

Mom does have people bring her the food she wants, fast food. And that is one reason (my sister) acknowledged why Mom wanted to go home, so she could do as she pleases and eat the food she wants. Mom does try to stay on Weight Watchers, but....

It is terribly hard to watch. Since she made this (bad) decision to go home, I made sure to be less involved with the caregivers, the contract, etc. She signed the paperwork this time instead of me.
She also stays overdrawn on her bank account constantly and does not manage her money well. I just looked at her bank account and see that she has over $500 in NSF fees. I suggested to her to change the dates of her auto-drafts to be deducted AFTER she gets her SS check. She draws $1800 per month, and the caregivers she has set up right now are costing $3400 per month. This is NOT counting any of her monthly expenses. In addition to the caregivers' costs, there are medical supplies, (bariatric briefs, bedpan liners, chucks, etc.) that her money is going to. I did help her with these supplies some in the past, but have backed off since she has been in the rehab/nursing home for the past 4 months and now has chosen to come home. Since she had over $4500 built up in her bank account, she wanted to pay. Of course that money went fast within the first two month when she came home and needed supplies and caregivers.
She obviously is not thinking clearly, or has just chosen to ignore the facts that are in front of her.
Thanks again to all for the support.

you do not have to help her financially - nor should you. you have children and your own retirement - if she runs out of money she can apply for Medicaid. As long as she can make bad decisions re PT they are hers to make. tough to watch I know.

Oh by the way, she refuses to go because they make her, so she stays at home, not a need a want, just so you know.

Yep, I agree FF. Mom is making choices that have consequences, they are all hers. Do not pay her consequences and if sibs enable her then inform them that they can step up and pay or be the caregiver. I have a selfish dad who by gum and golly is going to do it his way and then expects me to pay the consequences, if I'm to stupid to help make good choices then I am to stupid to pay the consequences. Sorry mom, you have to live within your means. No guilt, guilt implies that you did something wrong and as we all learned as little kids, if you make bad choices you pay the consequences, no one can pay for you. So please do not feel guilty about placing boundaries and holding them in place. I'm sorry for you that your spouse is not more supportive to you but maybe this is a long term pattern and she is actually giving you helpful, although hard to hear advise. You know the answer. Best of luck getting mom into a facility that can meet her needs.

tbrown, since your Mom is able to think for herself, she is doing this to herself by free choice. Sounds like Mom is no living in the nursing home, and I assume she is back home, either at her house or with you.

Please note that whenever someone hires caregivers who are not part of a caregiving agency, your Mom would need to obtain a "workman's comp" insurance just in case either of the caregiver should get hurt on the job.

Otherwise, Mom would need to sign up for Medicaid [which is different from Medicare]. Home care is limited with Medicaid as Medicaid has found it is not as expensive for them when they have a patient in a nursing home.

And no, no, no, it is not your responsibility to pay for your Mom's care. Any expense comes out of her social security if she receives that, and any other income she might receive. Stand firm on that, say "sorry, Mom, I just cannot possible pay for that". And try to ignore the guilt that comes along with saying "no".

I feel the same way and would be REALLY hesitant to contribute if she doesn't want to get better. Would other details give me a different picture? How old is she? Where does she live in relation to you and your sibs?
As an aside, is there a way to cut back on her obesity? Presumably others are providing her food since she isn't mobile. I'm not suggesting they stop bringing food but smaller quantities, healthier choices etc may bring the weight down.
When my MIL (at age 96) decided not to do PT she soon become SO-o totally dependent upon aides etc. What a decline! I was disappointed with her decision, but she had 5 children so I didn't say much. STILL when I visited, I had her do the movements I observed with her earlier PT sessions. After all, we have to keep moving!