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I am the primary caregiver for my mother in law who has been disabled since birth. She’s lived with us since October 2016 & has progressively gotten worse. My father in law was able to help with her, but he passed away in November 2019. My husband & I both work 40+ hours a week + commute time & have 4 kids of our own. She is unable to cook for herself consistently, do laundry, clean up after herself, safely bathe herself, & has been falling more & more. She has been on disability & social security most of her life as she’s been disabled since birth (Spina Bifida - among a ton of other issues) & my father in law was in a work related accident in 2012 which made it so he couldn’t work anymore. He was also on disability & social security since 2015. Neither have savings, but she “makes too much” for Medicaid. My husband & I can’t afford to pay for her to go to a home or have someone come & care for her in our home. There’s literally nobody else that can help. We don’t know what to do or where to turn. Every time we’ve tried to get help with DFCS we’re told we make too much for any help.

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While many of the income level and program details vary state to state the fact that your MIL has been on disability (I’m assuming state/government given it’s been most of her life) should provide an easier avenue for getting her financially assisted help as she ages not more difficult. I image the problem you are having with DCFS shutting you down has more to do with the person on the other end of the phone being unfamiliar with her circumstance and used to retirees with outside rather than government income although i may be all wrong. I’m not experienced with this circumstance myself and its been a while since I had any contact with people who are so things may have changed but it doesn’t seem likely. You MIL falls into a special category as she has been disabled all of her cult life and there is a path for people like her, everyone knows that adults living full lives while disabled will age also and need more specific care. I might try contacting a social worker connected to the disability she receives as well as Spina Bifida Society others suggested and perhaps a specialist or PC involved with her care specific to those things that have qualified her for disability all this time. Seems like she should qualify more easily than most for assistance both paid physical and financial and it may just be a matter of asking the right professionals rather than taking the “normal” route because of her special circumstance.

You and your husband are doing a wonderful thing and obviously care about her a great deal not just because you have taken her in but because you are working so hard to provide the things she needs, don’t feel you need or should reach into your families pockets as well the time and love you are putting in is far more valuable. Don’t rob your families Peter to pay Moms Paul even though it seems like your helping yourselves just as much.
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My problem here is, your income should have nothing to do with what services Mom can receive. You said MIL gets disability and SS. Does she get money other than SS? Is it SSI a Supplimental income thru the State? I ask because I don't think, once your on Medicaid for Long Term Care, u receive SSI too. If I am right, u can't count SSI as part of her qualifying income. Both SSI and Medicaid are State funded.

In the meantime, this woman should not be left alone. You should make an appointment with a Medicaid caseworker. Asking what you need to bring with you. I would think it would be Moms bank statement, any ID, and proof of income, ect. She may qualify for in home care.
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Have you done a Google search “Adults With Spina Bifida”? There are MANY websites, and you may find some avenues to help for adults with this SPECIFIC diagnosis there.

If she truly NEEDS residential care you may find information specific to caring for adults with Spina Bifida There too.

There has been something of an explosion of research about this condition within the past several years.

For yourselves, your schedule is unquestionably totally overwhelming. Perhaps you will find someone through one of theSpina Bifida agencies who can find some kind of temporary respite so that you can have a glass of wine together and think through the best solution(s) for your MIL. I KNOW from personal experience that you DON’T have the time to BREATHE, much less think and discuss, at this point.

Please let me know what you find. I’m on the way to a root canal right this minute, but I’ll be back this afternoon.

I dearly and with hope, LOVE someone with Spina Bifida, by the way.
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AnnReid Feb 2020
SPINA BIFIDA RESOURCE NETWORK may be a good quick read for you, but there are MANY others.
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It is your MIL's responsibility to pay for her care, not you and your husband. If she does not have adequate funds to do so, apply for Medicaid and place her in LTC.

This is your husbands responsibility, not yours. Good Luck!
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In the short term, contact your local Area Agency on Aging (AAA) for a needs assessment to see if MIL can qualify for Community Medicaid or other Senior Services like an Adult Day Care, bathing assistance and maybe a few hours of in home care. ADC could provide some supervised care during most to all of the working day. My mother's ADC here in TN serves 2 meals and 2 snacks and includes an exercise/stretching program, craft and social activities.

AAA should be able to help you find LTC for your MIL too.
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"She is unable to cook for herself consistently, do laundry, clean up after herself, safely bathe herself, & has been falling more & more. She has been on disability & social security most of her life as she’s been disabled since birth (Spina Bifida - among a ton of other issues)"

Then shouldn't she qualify for Medicaid for LTC?

"My husband & I both work 40+ hours a week + commute time & have 4 kids of our own." and "I am the primary caregiver for my mother in law "

Why are YOU the primary caregiver? Why isn't your husband, as she is HIS mother?

Regardless, this is just too much. She needs to be in a facility.

Are there other siblings of your husband? If so, then how did she come to live with your family?
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She needs to be in a SNF. She will qualify for LTC Medicaid. I had a similar situation, I could no longer care for my father as I had to be away to earn money and could not afford in home caregivers. You need to place her in a SNF being paid for by LTC Medicaid. So the first step is to get her approved for that. You need to fill out the application with the state and provide MIL's income and bank statements. Then you need to visit NH's and apply. If you can't get placement quickly enough, and you very well may not, the other routes to take are either calling APS or the hospital. The hospital somehow is able to get quick placement when you cannot. Calling APS and maybe have the state take guardianship is another option. I know that doesn't sound too good, but you have nothing to feel guilty about, you didn't do anything wrong, you are just unable to provide safe care anymore. Sadly, the situation you are in is all too common and there are no clear answers. You're right, there is no help, and the hospital becomes the go to place because there are no other options. So it comes down to either having APS get involved or calling 911 next time MIL has an incident and then getting the hospital to find placement other than back with you.
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I don't know the answers to your dilemma but others on this forum have been in similar situations and will be able to help.

I certainly feel for you. This is an enormously stressful and challenging situation for your family. You have your hands full with your work and family. Hang tight, others who are knowledgeable on this topic will help you.

Wishing you all the best.
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Are you in Georgia?

Georgia is one of several states that allows for a resident who has income too high for Medicaid qualification to open a pooled income trust (sometimes called a Miller Trust).

If you google "Miller Trust Georgia" you can read all about how to set one up.

Help for MIL should be based on HER income, not yours.
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