Snapshots of Dementia: Not-So-Easy Money

Snapshots of Dementia: Not-So-Easy Money
Monday, February 21, 2022 by Marti

Regular (minus a lapse of nearly a year) readers of this blog may remember that Tom received a diagnosis of young-onset Alzheimer’s disease in October of 2019 from the fourth neurologist we’d seen in three years (the final three all in 2019 since, before that, I’d believed the neurologist and neuropsychologist who told me nothing was wrong with him).

And so I went with that diagnosis—but although the primary reason I needed a diagnosis was for his application for disability coverage, I still wondered if he had frontotemporal degeneration, behavioral variant. And when we finally got to South Carolina (late November 2020) and had an appointment with a wonderful primary care physician (January 2021), she wondered the same thing.

But in reality, she did more than wonder. In what I could only see as God directing us to the right physicians, she knew more than some neurologists we’d seen about FTD. And after a review of our story/Tom’s symptoms and records, she said: “I don’t believe for a moment that he has early-onset Alzheimer’s. This is classic FTD.”

I couldn’t help but agree. Looks like a duck, walks like a duck—you know the drill.

I won’t bore you with the details of our subsequent visit to a South Carolina neurologist who didn’t seem to know a thing about FTD and questioned whether Tom even had dementia. (Seriously? This again?)

However, once I sent him the paperwork from the South Florida neurologist (mentioned here), he did sign off on the papers I needed for Tom’s disability application to move ahead. I submitted our part in April of 2020—and, two long sets of paperwork and three phone calls later (they called me to ask more questions)—he finally received the approval letter in February of 2021, two weeks before his March 23 birthday made him eligible for Social Security anyway at age 65.

And yet—of course I'm grateful. The letter acknowledged him as “fully disabled” since Nov. 30, 2018—the final date of his employment at the final church where he served. Somehow, that felt satisfying, since that position ended in a horrible way because of his poor judgment and lack of impulse control. The government letter also promised that we would receive back disability payments effective to that date.

And, because it’s the government and those wheels grind ever slowly, it took several months for that check to arrive. Yes, it’s good to have, but no, we aren’t suddenly wealthy. For one thing, he has a fairly small Social Security income. For another, I can only use it for needs directly related to his care and support.

So that’s what I do. It’s in a special account, and since he can’t manage his finances, the government (after another application and brief wait) named me his representative payee, which means I receive the money and manage it for him. I use it only for expenses directly related to his care, primarily medical and dental needs so far. For example, he had let his teeth go terribly in the years prior to diagnosis, and once the government check came, we could now afford the work he needed to get his mouth back into shape.

How all this impacts diagnosis is yet another story. But since (again, if you’re a regular reader of this blog, you know this) I no longer accept a doctor brushing me off or ignoring Tom’s needs, you won’t be surprised to learn that I moved him on from the South Carolina neurologist. It took me several months, and the pandemic delayed me somewhat, but I finally found a place that would accept Tom as a patient.

A place that would prove providential in multiple ways.

I’ll share more about that in a future post. But I also want to tell you about a gift or two that God brought us along the way.

Do you have a story to share about your loved one and your journey to diagnosis and/or SSI disability approval? Your story matters, and so do you and your loved one. Feel free to share in the comment section here or on social media.

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