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My Mom was diagnosed with early onset dementia 4 years ago. We live together, and I’ve been her caregiver, along with working full time. My Sister lives out of state, and offers no emotional support. She refuses to call my Mom. Lately, my Mom has become doubly incontinent, and has begun waking up in the middle of the night, pulling clothes out of her closet and putting them on her bed.


She can’t even take her medicine anymore without me having to hand her a glass of water. I get so frustrated, I feel exhausted and anxious all the time, and this COVID-19 stuff doesn’t help, as I’m an essential worker who has to work face to face with customers.


I feel I’m going to have to put her in a facility at some point, but she doesn’t have much savings, yet gets too much from social security and her retirement to qualify for Medicaid. I feel trapped.

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I’m very sorry. When you can, call your local Medicaid office. Here in Ohio, it’s through our Department of Human Services. Speak with them about a Qualified Income Trust, aka a Miller Trust. If a person gets too much from Social Security, the overage is put into this trust for their usage and their’s only. The advantage is that then the person can apply for Medicaid. In your mom’s case, she will then be able to go to a facility. In Ohio, I was advised to set up the trust through Huntington Bank. It’s easy to do.
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Shell38314 Apr 2020
Ahmijoy,

Can someone set up a Miller's trust at any bank?
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And, one thing I did not mention is that Mom may spend down to a $2,000 allowance in her bank to be eligible for Medicaid. You are not trapped. Please find her help soon to save yourself so you are able to take care of yourself and work!
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INFJwoman Apr 2020
Thank you; I’m worried about my Mom, because I sometimes lose patience with her and raise my voice. I work in customer service, and I feel like someone always wants something from me.
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I’m so sorry that you are struggling with this. Just wanted to say that I care. I know that I can’t remove your frustration. A bazillion hugs for you 💗.

When things settle down, speak to a social worker or Council on Aging in your area to help plan for your mom’s future in a facility. They will walk you through the steps.

Be safe and stay well. Best wishes to you and your mom.
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INFJwoman Apr 2020
Thank you so much for the kind words, and the advice. Please stay safe.
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I know how you are feeling. I went through all of this five years ago with my mom. Anyway at that time I was not aware of anybody that could help. You are on the right path. There are lots of support groups and a lot of organizations that can give you a break so you can keep some sanity yourself. Hold it together and ask ask ask
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Hi... seems you have received great tips.. just wanted to say my parents made too much, so we opened a Special Needs Trust, .its actually called "dirtying up money"
Thenthey both qualified.
& it's legal. I pd $2500 ... then I filled Medicaid to save $1500..for dad, $1500 for mom.
It's alot of work, more so time consuming.
Goodluck. There's a light at the end
Cindy
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If you continue to work, you need to get her into a nursing home. You must see an eldercare attorney to "spend down" her assets correctly in accordance to your state laws...but she never "makes too much". If you hire sitters that is about $20 an hour--they only sit and watch..no hands on care. Have your mom pay for the elderly attorney as part of the "spend down".

A Certified Nursing Assistant who does hands-on care that about $30 an hour.

If you mom cannot manage her own bowels or bladder--she will no longer be eligible for assisted living and must go into a nursing home.
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INFJwoman Apr 2020
Thank you; I’m waiting to hear back from an elder care attorney my co worker recommended; she said it’s the best thing she ever did. I greatly appreciate the support, as I’ve received none from my family, and feel so alone. I realize I need help.
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We have managed to find outside care through an agency to come in and help with moms care. We budget the hours so that the cost is covered by her retirement/social security amount. I may have someone come in for several 2-3 hr shifts or several 4 hr shifts. Each home care agency has different minimum hr requirements and charge different amounts. Before covid I was using two different ones. Possibly look into having a living care provider. If you supply room and board the fees may be less.
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Thank you all so much; I’ve received more support here than I have from my family in five years.
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I'm so sorry you're going through this - caregiving can be lonely and exhausting.

Are there community day programs in U.S. available for persons with dementia? Here in Canada, the cost per day ranges from $20-30 which includes lunch and activities, kind of like senior daycare. It gives relief to caregivers for at least 6 hours a day. (Of course, these programs are halted during covid).

My father lives in Assisted Living, but many families combine day programs with hiring a private caregiver according to needs and budget. At the beginning of my caregiving journey, I read a book about the subject that said this is one of those problems to "throw money at" if at all possible. If hiring help can buy you some time for self-care, it is worth it.

Even finding 10-15 minutes a day to breathe deeply or journal or walk outside can do wonders for your well-being. Hang in there.
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I believe that you've spoken to an elder law attorney. Has your mother applied for Medicaid, if available?
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INFJwoman Apr 15, 2020
I spoke with the attorney’s office yesterday, and was told my Mom will qualify for Medicaid on May 1st. She referred me to a co worker who recommended a facility; I called the facility, and was told they need my Mom to get a physical. Her PC Dr is seeing us this morning to get her a physical. He’s not seeing patients, but is making an exception for her. Ty for asking, I’m hopeful this process goes smoothly, because I feel relieved knowing there’s an end date for my at home caregiving duties.
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