Tag Archive | family

Signs of FTD

Here are some of the signs of FTD. These are from the behavioral variant of FTD. Although Lydia has the language variant, at times she did show some of these signs, but we didn’t know it as FTD yet, because she’d been misdiagnosed.

FTD Behavioral signsShe did have some spending issues–I’m not sure if she was buying multiples because she was going to give gifts, or if she was confused about where she’d put things and bought duplicates to replace them or what.

We saw signs of apathy, which we thought was depression due to the loss of her job at Wells Fargo in their Beverly Hills Wealth Management office in the banking fiasco of 2008, and then when she got another bank job working in a trust department of a bank, that bank was swallowed up by a bigger shark…I mean bank. I thought there was something wrong with Lydia when it took her FOREVER to finish the book, The Help, after the Trust Department job was eliminated.

FTD Behaviors

Lydia, a lifelong coffee drinker, could no longer do the steps she needed to make coffee. She knew what the parts were, but couldn’t pour the hot water into the filter holder to make a single cup because her executive function was being affected. In the time after she was finally diagnosed, Lydia would tie…and retie…and retie…and retie her walking shoes. She also would take a decorative potholder to her room and clean dishtowels…over and over and over again. We’d never seen anything like that, but these were compulsive behaviors and hoarding. After her longer stay at ULCA Medical Center, she would take place mats to her room…over and over and over again. We at least knew she had FTD at this point.

Lydia did have periods of agitation, which started after one of her medications was tapered off too quickly after her grand-mal type seizure.

FTD BVT Diagnosis

Lydia did a lot of pacing from her long stay at UCLA Medical Center in 2014 until around March of 2018 when she started showing signs of Parkinsonism which made her lean forward while walking like she was Usain Bolt taking off from the starting block at the Olympics. One of the medications she was on was eliminated, she is on a decreased dose of one anti-seizure med and is on a newer one to help manage the symptoms.

FTD Genetics Pathology

These screenshots are taken from https://www.theaftd.org/what-is-ftd/ftd-disorders/behavioral-variant-ftd-bvftd/

 

 

The Holidays with Lydia

319834176_72e539770a_mThe facility where she is in hospice had a holiday party for all the residents. Initially, we hadn’t planned to go, but one of her caregivers the Sunday before encouraged us to come, so we reversed our RSVP in time and went.

It was the best family gathering we had had since the hospital right after she got out of the ICU in March. She was a little agitated at first, but after one of the caregivers took her to the restroom past the waiting crowd, she settled down and was able to enjoy the dinner and dessert.

We were able to observe in the dining hall how good the caregivers were with everyone. Truly a difficult job, but they were caring, helpful and showed genuine, cheerful attitudes, even with difficult residents.

We were so glad that her caregiver encouraged us to come. She said the family dinner event was nice. The truth is, it was more than that. Way more.

We are so grateful that she’s with these caregivers.

Caregiving is a very difficult job, but these people are able to figure out how to handle so many unique situations, they are the unsung heroes in the medical field. In the past year, we’ve seen some apathetic caregivers, openly hostile caregivers who need to be doing something else for a living, and a few good ones.

This place she’s in now has many good caregivers, and we were able to see them in action with a huge room of tables filled with people and their families. Not all are sick like Lyda–most are in the assisted living section–but you could see their attitudes with everyone, and they weren’t faking it.

This past year has been a difficult one for our entire family, but especially for Lydia. It was good to see her get to enjoy herself a little like she used to, and to have a nice dinner with her family. I think that was a huge relief for our parents, too, to see her calm, and to be a little more like what she was before this illness started hurting her so much.

Thanks for everyone’s support this year.