Every year since 2021, I've re-applied for her to obtain Medicaid. Every year we go through the same process of pages and pages of forms to complete, an in-person interview, and then she is summarily denied. She makes a total of around $1300 a month from SSA and the VA (they cancelled her SSI because she found a place that gave her a discount on rent and then said that because of that she no longer qualified for SSI. We appealed, they refused to reinstate her. I was able to find her some additional income from the VA because my father was a vet, so she qualified for a small amount as a veteran's widow. Without the VA income, she would only be getting around $800 a month from SSA, not enough to rent or pay for her utilities, groceries, or OTC medications. I guess they just expect her to die. I've had to go almost completely no-contact because she is a paranoid narcissist with dementia or possibly schizophrenia. (I can no longer take the abuse, which is both mental and verbal. She has tried to put herself between my husband and I for over 25 years--I"m lucky I'm still married. She also tried to convince my children that I was cheating on my husband and she accuses me of having an affairs and refuses to believe otherwise, even when my husband, siblings, and adult children tell her it's a lie.) Her primary physician even tried to help us with this situation, but Medicaid still denied her. She's living in a little house next door to ours and paying $600 for rent (includes utilities). That barely leaves her enough to get by on at around $700 a month. I'm so exhausted and stressed out. I have multiple disabilities myself, and I was recently diagnosed with Alpha-Gal syndrome, too. I have my own issues to deal with and I can't carry the mental load of caring for her. It's tearing me up, and therapy doesn't help at all. I've tried to find someplace that would take her in since she has mental issues and I know for a fact that she's self-medicating. Medicaid insists that as long as she is able to: bathe herself, dress herself, feed herself, toilet herself, and walk by herself, they do not need to either provide her with any financial or medical assistance. Without Medicaid, I can't afford to have her institutionalized. I looked into it, and it's over $4,000 a month. No way we can afford it, and even if I could, I wouldn't want to assume that expense because she has been making my life hell for the last 25-30 years (since my father died and left her penniless). I've already looked into EVERY available avenue to obtain assistance for her, including ALL of the available non-profit options that are not affiliated with Medicaid. NONE will help. What do I do at this point? She can't drive, so she saves up her errands and takes an Uber about 1-2 times a week at around $8 per trip. At least I no longer have to transport her, as that was a horror I would never want to inflict upon myself ever again.
That she is financially under the income and asset maximums for LTC Medicaid program is great. But she has to be “at need” BOTH financially AND medically. Which she is not.
If your State does AL waivers to the LTC Medicaid program, that is the program for her to file for as the medical “at need” for skilled is not required. She or you will have to research this out to see what the waiver situation is for y’all’s State and what facilities - if any nearby - participate. States can choose if they are going to do waiver programs and if so how it will be administered. If a State does them, the ALs that participate in the waiver tends to have a long waiting list. Like they are an AL that takes the waiver but residents end up with a 1-2 yr period of private pay first and move up on the list to get that waiver bed as other residents move to a NH, or to a family members home or pass away. She may have to llok for a place in an adjacent county.
This is going to sound harsh but that you’re enabling her and helping her live day to day in that lil house next door, is the problem. As long as this is happening she is going to be assessed as way waAAAAAY too independent and too capable to medically “at need” for a NH.
To me, you do have a choice in all this that you and all other family members completely and totally go No Contact; then she has the inevitable fall or accident; EMS is called; she goes to the ER and neither you or any of your family will go to the ER/hospital to bring her back to her home or go to visit her; the discharge planner will end up finding her a facility somewhere that will take her.
The medically “at need” with heavy documentation in her health chart very much matters nowadays for LTC Medicaid. The days of being in your 90’s, have some cognitive issues, not being able to do your daily medication management, needing some help getting dressed or fixing meals and being medically eligible for LTC Medicaid in a NH do not exist anymore. The vast majority of NH entry are those who go to rehab at the Nh after a post hospitalization stay and they remain there after rehab ends. They have that nice fat health chart what clearly shows “at need”.
Why are you so involved in her finances and Medicaid problems? Go completely non-contact, and call APS if you think she needs oversight.
You should check your states website to contact your local Area Agency on Aging (some states and counties may refer to it by other names). They will be able to help evaluate your mom and assist with getting her the government assistance programs she is eligible for. If you were in Pennsylvania it would be a bit easier as there is one website to determine eligibility for assistance programs such as others have mentioned (i.e. SNAP (food stamps), Section 8 (housing or waivers), prescription drug assistance).
I'm so sorry you are in this stressful position with your mother.
Bear with me, because I'm not a Medicaid expert, but from what I understand, Medicaid pays for certain cares, such as activities of daily living, which you have detailed, and/or long term care for chronic condition or disability, which Medicaid has determined she does not require. It seems to me a mental health issue qualifies as a disability. Does she have a doctor's diagnosis for a mental health condition which is disabling for her? Perhaps Medicaid would approve funding if she were in a suitable care facility. They haven't approved because she doesn't have any Medicaid eligible expenses currently for them to pay. They don't just give cash benefits. If she were in a care facility, that would be a Medicaid eligible expense.
I wish you would give yourself a break from worrying about her welfare. She is a grown woman who is able to walk, bathe, dress, feed and toilet herself. She takes an Uber and goes shopping once a week. She sounds perfectly able to manage her own life, even if it is a struggle for her financially. Her financial situation is a result of her own life decisions and life planning. If she had no plan for financial security in her 90's, then she is going to have to figure out how to get by on very little.
You still have a chance to take care of yourself and plan for your financial future.
Please, take care of yourself first. Any energy you have left over for others, you can give to her as you wish.
I suggest you also speak to a dept manager at Medicaid.
Or find an advocacy group to assist you through this process.
Never ever co-mingle your money with hers.
Gena / Touch Matters
Look to see if you have something like our Region 10, (Montrose/Delta County) senior resources ( you can google them), we managed to get my parents involved with the local Long term Medicaid/PACE program. My dad recently passed and now PACE is helping just Mom. Still issues with my mom, and paperwork, but it is better.
"Medicaid insists that as long as she is able to: bathe herself, dress herself, feed herself, toilet herself, and walk by herself, they do not need to either provide her with any financial or medical assistance."
So what do you do for Mom that she can't do for herself. Do you get an order from her doctor that she needs care and why?
You make mention of your own income. Please, NEVER use your own funds. If you do this it is a certainty that you will not have sufficient funds for your own old age, and this will play out again with you the leading star. It takes a life time of good luck, good jobs, good savings habits to come to the end with enough to be "self-insured".
Do get good advice here about option. That will tell you how to proceed. If Mom is mentally able to stay home then hired help is perhaps the way to go, keeping excellent records of expenditures is critical for any future applications to Medicaid. You have decisions to make as to how much care you yourself can/wish to provide.
I sure wish you the best of luck. This is such tough stuff to negotiate.
You may be able to get Meals on Wheels delivered to her, if you haven't checked there yet.
Have you looked at Section 8 or low-income senior housing, and SNAP?
I agree with you going no-contact as much as possible. Very difficult when she's next door, though, I know. I suggest that you call Adult Protective Services and tell them you cannot provide care anymore due to your own health issues and that she is a vulnerable 94-year-old living alone. Be prepared to call 911 if she's having serious trouble. That might get her an in-person medical evaluation that she isn't safe at home alone.
Good luck.