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ASxOren Asked April 2017

Long term care insurance?

I'm 26, and take care of my mother who is 53 and she will be 54 in October. She has FTL dementia. Over the past six months, her mental capabilities have declined a lot. She almost set my apartment on fire. So now, I keep the detachable burners in my room and the bedroom door is locked when I leave the house without her. And the oven's mechanisms are locked. She's now only allowed to use the microwave when I'm not home to cook for her, or I supply her with pre-made food from the grocery store. She's forgetting common words now, is incontinent, and has visual and auditory hallucinations at night, up to three to four times a month, they worsen if I have to go away for a night. I will be blunt. I'm not the caregiver type, and my relationship with her has been strained since I was 17. I've discussed it with her, and we both feel assisted memory care living would be right for her. She wouldn't be stuck watching TV all day and she might get something out of day to day life again. Her older sister, who has lost her ability to use words and speech due to dementia, is in a facility already. They cost $5.3k a month. My mother really wants to be with her sister. I contacted to facility and they said they don't accept anything but long-term care insurance. But the long-term care.gov site says people with dementia don't qualify for it. I only have about 3 months of care saved up for a place like that. She receives SSDI, but it's no where near enough, and she has no assets or savings and her credit is crap. Three years ago, when I started to care for her, I called APS on her, because of her violent mood-swings. She has since calmed down due to an anti-depressant, and pseudobulbar affect has given her a happy-go-lucky personality (which we aren't treating, I wouldn't be able to deal with her violent behavior that used to be her original personality). Sorry, went of topic. APS gave us a case worker who couldn't help us much, she did give us an application for long-term Medicaid care (I honestly don't remember). We filled it out and sent it in. She was denied due to her not having SSDI yet, but they told us to reapply after she was approved and that she would get it. Her SSDI case had to go to trial and it took a year before we could get it. By then, APS had closed our case. I've looked and looked, but I can't find the application they gave us and Agency for Aging sends me on a carousel of phone numbers to call, that eventually lead me back to them. I have no f***king idea what to do now. Short of me becoming a best selling author within the next month and making $30k in one go, I don't know what to do.

notrydoyoda May 2017
Sometimes people wait too long to sign up for long term care insurance. Thus, the only option left is Medicaid if they don't have a lot of money.

Upstream May 2017
Medicaid is likely the only way to go, but you and your mother may not be able to choose the facility, as not all take Medicaid. My Aunt recently was placed in a small "group home" type of assisted living facility. It is not memory care. She is there on a full ride via Medicaid. The facility has one bed reserved for Medicaid. My Aunt was put on a waiting list, it took about 6 months. A friend's mother is also Medicaid, and has been placed in a mediocre skilled nursing center here in town - all she wants to do is lay in bed so for her it probably does not matter what facility she is in. My father recently entered an assisted living facility and my parents are paying through the nose for his care. Better to spend your money and end up on Medicaid than skrimp and save just to spend it on a nursing home. Being on Medicaid seems better than draining your lifetime assets for the same care. My 2 cents.

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MsMadge Apr 2017
I'm so sorry that you and your mom are going through this - you both are so young

Many memory care facilities are private pay so it might be that your mom won't be able to be with her sister but definitely call the county back and get their assistance to see if there's a suitable placement that accepts Medicaid - others will have better ideas on the topic

Another option which is more affordable is a residential board and care - a private home with 6 or so residents and a home like setting

BarbBrooklyn Apr 2017
Call APS again, either talk to the old worker or ask for a new one to be assigned to mom's case.

cdnreader Apr 2017
Sorry to hear about everything you are going through. I know its not easy navigating the system. I have included the Medicaid link in hopes it will help in some way.

https://www.medicaid.gov/medicaid/eligibility/

97yroldmom Apr 2017
I'm not sure what you should do. I'm answering so that your message will move back up and perhaps someone who knows will answer.
I wanted to tell you that I'm really proud of you.
What state do you live in? Perhaps go to that states Medicaid website and search for the application. Come back and let us know how it's going. A big hug to you and your mom.

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