No group for FTD in Ventura County

I learned from someone today who contacted me through this site that there used to be an FTD group in Camarillo until the local Alzheimer’s group stopped it–I’m not sure why. That’s unfortunate for people who have the disease and their families. When I asked my sister’s hospice company for a list of support groups, the only one for FTD was in Riverside County, which is on the other side of the state from here–and California is a big state.

This spring when we were looking for places where Lydia could live and get the appropriate care, we learned from the social workers in the hospitals that if she were a drug addict or an alcoholic, there were many options available. But because she’s neither and younger than 60, she falls through the cracks of our medical and care system.

She lost her job at Wells Fargo in the 2008 financial disaster, then the next trust company she went to work for got merged into a bigger bank, eliminating her position. Thus, like many others at the time, she moved in with our parents to save money. The ACA was not yet in effect, so her medical care was the bare minimum she could afford to pay, essentially out of pocket.

In the meantime, after a long evaluation, the state-appointed doctor recommended her for complete disability. The final decision is by the state, and he could not tell us the diagnosis.

After she had her first seizure–just 2 days before she got onto Medicare because now she was considered completely disabled–the neurologists said for her to stop taking a certain medication. However, the diagnosis wasn’t revealed to us by whoever evaluated her to get her onto Medicare and Social Security Disability, so we didn’t even know what we were dealing with until she finally got an appointment to be seen by a team of doctors at UCLA.

But these weren’t her treating doctors, and the local doctors she was seeing were overwhelmed with others in the Ventura County medical system. And one of her specialist doctors told her to get off the drug by tapering off in only 2 weeks. That caused also huge problems for her and my aging parents, which was awful.

This is part of the reason why I have started this blog and am hosting this FTD awareness event on September 20,2015, because people who are going through this are basically thrown to the wolves. They don’t deserve that. They have been valuable, educated, contributing members of society, have families, and deserve to be treated better than “go flounder on your own.”