Introduction

Lgb35

Hi everyone! Thank you for joining! I wanted to connect with others in the group who were on this journey while still trying to work. I am 53 and work full time at home. My DH is 59 and still working. At this point his diagnosis is MCI. We have been working to find a diagnosis for a little over 2 years now. I am trying to connect with an attorney to get all of the legal stuff in order.

BMT2023

Hello, sorry to hear about your spouse. My spouse is 64 and just been diagnosed. You indicated it took 2 years. I would love to know more about the process you went through. This is all new to me. My spouse does not want to let anyone know. What testing did you have done.

Lgb35

He first started telling our primary doctor about his memory issues 5 years ago but they blew it off as normal aging. We started with our local university and got an MRI which showed atrophy in his brain. We switched to the Cleveland Clinic and had a spinal tap which was borderline for Alzheimer’s. He has had 2 neuropsychological exams a year apart which showed the areas he is having the most trouble with and which areas of the brain are still functioning ok. The repeat of the test showed he has declined during the year but progression was slow. He has had a lot of bloodwork to rule out treatable things like autoimmune diseases, vitamin deficiency, thyroid issues etc. we have been told even though the decline was slower in the past year does not mean it will stay that way and to get things in order. We are trying to set up appointments with an attorney now. I am 53 so I want to protect our assets in case I need Medicaid coverage down the road for home care.

Lgb35

https://alzconnected.org/discussion/comment/176305#Comment_176305

I am just checking in on you to see how things have been going for you

FTDCaregiver1

Hello Bmg/Lgb - My DW was eventually diagnosed in 2019 with EO FTD, took roughly 2 years after MRI/CAT showed only Atrophy and she wasn't able to sit through the 3 hour psych exam due to extreme anxiety. Then a PET scan which confirmed frontotemporal degeneration. DW went downhill fast mentally and I could barely get her to sign a DPOA later in 2019, had to retire early in 2020 to care for her as it was too dangerous to leave her home alone (we had no kids). Hired a legal firm for estate planning to protect assets and I filed for SSDI designation, I went through all of the appeals myself, eventually won, got the disability designation and enrolled in Medicaid and then into our local PACE program. Four years later, several MH stays, stays in MC, I now care for her at home with in-home day care, supplements, medications and tele visits covered with a Geripsych. Had problems to overcome with just about everything, really was a long process/journey but today we are doing much better with stable care and a consistent support team to help me care for her. She's in stage 6 now but I think I'm about as prepared as I can be when stage 7 eventually appears.

FTDCaregiver1

Early Onset during working age presets challenges if/when applying for SSDI or SSI. Choosing an onset date is very important when applying and connecting it with a diagnosis, while your LO still falls within the 1 year disability insured window required by SSA regulations. Diagnosing early onset forms of dementia (inclusive of FTD like my DW) takes on average over 2 years. Unfortunately for my DW I applied for SSDI in 2019, after the diagnosis yet she left work in 2017 so it was a battle for me. Like I said, eventually won it on the last appeal 16 months after I first applied, and fortunately got a large check as they backdated her approval to when I first applied...but pray you don't have to go through what I went through. Here's a link on how to disability onset dates and best be prepared before applying. How Do I Choose My Disability Onset Date? | DisabilitySecrets

Lgb35

Thank you for the heads up on disability. DH is currently still working but we are expecting that to end fairly soon. Things have really gone fast for you. Dealing with EO has so many additional challenges. I am praying for you🙏🏼. Glad you are getting help. Take care of yourself