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Elder sibling recently Dx'd; I'm struggling with coordination of relevant professionals

Hi all, I'm new here. I have a much older sister in her mid-70s (one who I hardly knew growing up) who lives in another county, about an hour away—still in her own apartment. The only other family member is our brother, closer in age to her, who lives a bit closer to her, but is rarely involved. As I agreed years ago to be an emergency contact and health proxy, I became her distant caregiver-of-sorts by necessity when she started to suffer memory decline and, ultimately, lost her license/car. She assigned me as her DPOA and UHCP. She eventually got a Dx from a neuro at a memory clinic about a year ago—"suspected ALZ, early-to midstage"... nothing more specific than that in the follow-up summary. So I am basically all she has for support (she had many friends in her area, but boy, they disappeared fast). Her county does not provide transportation (at least, nothing someone with her memory issues can use), so I drive to her home and take her to her various medical/dental appointments in a tri-county area, as well as grocery shopping/errands weekly, and out to lunch and recreational outings on a regular basis. I'm also her go-to help whenever she has technical issues (frequent), and now even bring her laundry back to my house to wash/fold/return because even that has become too complicated for her.
If you read between the lines, I'm sure you can probably sense that I'm overwhelmed. I have a husband (has his own health issues) and we are empty-nesters. I am also still working. Thus, I'm finding it challenging and frustrating to find the answers and support I need, which lately has revolve around getting a handle on her financials, and understanding how to fund assisted living—and how long we can stretch her modest savings and meager pension.
I feel like she needs an elder lawyer, financial investment manager, and tax advisor rolled into one. This has been a roadblock for months now. Meanwhile, I'm concerned what will happen to her if she isn't placed in a proper assisted living community (with option for transition to MC) in the next 3 to 4 months. Living in my home is not an option, even if I could manage to care for two challenging adults at once.
Neither the memory clinic, social worker, nor the local support agencies have been able to provide the support or answers we need. Meanwhile, I cannot sleep through the night because I'm always stressing over the situation, and feel that my own health is deteriorating.
My apologies for rambling. Thanks for letting me get that off my chest!

Comments

  • H1235
    H1235 Member Posts: 2,362
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    Member

    Welcome. I would see an elder law attorney as soon as possible. They understand Medicaid, qualifications, what is covered and can give advice on the finances leading up to filing (if it becomes necessary). Many facilities have a waiting list to get in. I would start looking now and get her on a list. Look at places close to you. If your first choice doesn’t have an opening, maybe it would be worth going with something else with the plan to move her when possible. This is not ideal, but she is or not safe living on her own and it might be worth it. Don’t worry about keeping her in her hometown. She probably won’t be on board with this move, you might not even want to tell her til you arrive at the assigned living. Even then she might do better if you tell her it’s because she needs therapy (therapeutic fib). Trying to figure out how long the money will last, while somehow also guessing how long she has is an impossible task. Do the best you can and try not to beat yourself up is you things don’t go the way you had expected. If you are as stressed as I think (as stressed as I was during this time), see your own doctor about something mild to help you relax. I will attach a Medicaid link that may help some.

    https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

    https://iona.org/therapeutic-fibs-ok/

  • Robert1320
    Robert1320 Member Posts: 38
    10 Comments First Anniversary 5 Likes 5 Insightfuls Reactions
    Member

    Contact the local Council on Aging for the county she resides in.

    It's a free, non-profit service that can put you in touch with local services to help you and your sister.

    They can refer you to legal services specializing in elder law who know the state's specific laws and regulations.

    See ncoa.org for more information.

  • brikerb
    brikerb Member Posts: 3
    First Comment
    Member

    To cut through the financial and legal roadblock, what you specifically need right now is an Elder Law Attorney (look through NAELA, the National Academy of Elder Law Attorneys) and an Aging Life Care Manager (ALCA). An elder law attorney specializes specifically in calculating how long modest savings and pensions can fund Assisted Living before transitioning into Medicaid-funded Memory Care, without putting family members on the hook. Meanwhile, a care manager can take over the legwork of evaluating facilities and finding local resources in her specific county.

    For your own immediate survival, stop hauling her laundry across county lines. Use her funds to set up a local wash-and-fold laundry pickup service or hire an agency companion for two hours a week to handle her grocery runs. Freeing up your weekends from driving and chores will give you the breathing room you desperately need.


  • LilSis
    LilSis Member Posts: 2
    First Comment
    Member

    Thanks all for the advice and nudges in the right direction!

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more