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Mom has early-mid Dementia & lives in Independent Living facility. I have POA and live about 10 miles away. She is totally mobile (but doesn’t drive) & has no health problems other than Dementia symptoms that started about 4 yrs ago & have gradually gotten worse. She’s starting to draw the attention of staff with her forgetfulness & random comments/thoughts/statements. I’ve tried to talk her into letting me take her to a dr for a UTI test (just in case) but she absolutely refuses since she believes there is nothing wrong & doesn’t really acknowledge her memory & confusion issues.


She’s not a threat, takes care of her bathing & dressing, and knows to go to the facility dining room when it’s mealtime. She doesn’t take any Rx and has always been fiercely independent. However, her brain is fading. Some days it’s mildly noticeable & other days, it’s completely out there with the stories she tells and believes to be fact. It’s unpredictable.


The fears & stressors that keep me awake at night are ...


What will happen when the staff feels she needs more care? She has very limited income, no savings, and no life insurance, no VA benefits, and no other family except me. She has Medicare but I’m told that doesn’t pay for assisted living or memory care. I’m not financially able to help her. I feel like I’ve researched this to death but I’m not finding answers and I feel like I should be doing something now rather than wait weeks or months until she does something that will make it impossible for her to stay in independent living and it becomes a crisis.


The daily phone calls from her have been a struggle for my sanity since we typically only talked a couple times a month in the past & only visited a couple times a year since we lived in different states. I’m an introvert and I don’t enjoy interacting with her on a daily basis but I fake it because I know she must be scared or confused & she doesn’t have anyone else to call. And, if I ignore her calls, it gets worse. However, it’s so completely exhausting to always ‘be ready’ for her new perceived crisis! The energy it takes to listen to the delusions and “go along with her stories” and be ready to make up on-the-spot explanations to put her mind at ease or jump up and go to her facility to do something for her is mentally and physically draining. I do take care of myself and I realize dealing with her daily call or a weekly visit doesn’t compare to those who have to live with a declining parent in their home, but it’s still so difficult!


It’s difficult to deal with the guilt of not caring more than I do, the resentment for the time and energy she requires, the sadness of witnessing her fade away, the fear of losing a parent and what that is going to feel like, the depression of not being wealthy enough to help her, the anger towards her lifetime of bad mothering skills, and then the resulting anger at myself for being unable to hold a grudge or self-respecting enough to be okay with treating her like she treated me, and the anxiety of not knowing what to expect next with this disease and not knowing how long I have left to talk to her before she no longer even recognizes me!


The tornado of emotions just never stops. I think if I just KNEW that there was a safe, reputable, affordable place that would be available for her to move into when the day comes, that would take a huge load of worry off of my heart and I could handle the rest!! I just don’t know where to turn since her monthly pensions & SSI only total up to be about $2800 and memory care facilities are much more expensive than that in Tennessee. What should I do???

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Meadow, a qualified income trust also known as a Miller trust will put her in a position to be eligible for assistance.

You are basically keeping the excess funds in trust for the state that will be paid to them at her death.

I would find a certified elder law attorney by going to www.nelf.org and they can help you navigate the process, set up the trust, file the Medicaid application and everything else you will need. Your mom should pay for this, hopefully you will find an attorney that can work with you financially if she can't pay all at once. Estate lawyers are not the best avenue for this process, you will be paying for their education if they don't already know what to do.

She will be okay, things will get sorted out, keep the faith.
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Reply to Isthisrealyreal
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If the income is "too high" but not high enough to pay for the level of care the person actually needs, then look into what's called a "Miller Trust" and see if it works for your state. This is not a do-it-yourself project, you'll need an estate planning lawyer to make sure it's done correctly. Essentially it diverts the additional income so that the person qualifies for Medicaid, the excess can only be used for specific things, and if there is anything left at the end, it will be subject to recovery by the state, just like a house sale would be.

This article seems to match what I understand about them: https://www.hg.org/legal-articles/what-are-the-uses-for-a-miller-trust-45532

I don't know why it has to be this complicated. I wish we could do better as a nation at providing a safety net for our elders. Given that we will _all_ grow older and eventually die, if there is _anything_ that should be nationally administered, it is a program to make sure that no one is left hungry and homeless in old age. Yet all we have is a piecemeal system of state and local services that is nearly impossible to navigate on your own.
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Reply to JenniferLeigh
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Look in to Tenncare. She may be eligible for a Medicaid waiver to help pay for assisted living. If she needs long term care, again tenncare (medicaid) will help pay for that.
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Reply to worriedinCali
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Meadow Apr 15, 2019
Unfortunately, her monthly income is too high for her to qualify for Tenncare assistance.
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