My dad’s middle brother’s, my Uncle Jack, family has been the most reliable, I guess. Every Monday (my mom’s longest work day), they have my dad over for dinner and they hang out with him until my mom is done work. Then she picks my dad up and takes him home with her. When I wasn’t working and home with my dad all the time, Monday nights were a blessing! They were a night to watch what I wanted on the TV, play the music I wanted in the living room real loud … a chance to take a bath, nap, read, cook whatever I wanted - all without him standing over me or worried about what he was getting into when I was distracted.
This has definitely been challenging for my Uncle Jack’s family though. They live in the town where my dad grew up and where our family lived for a very long time too, so there’s always the concern that my dad will wander off to see someone. They also take him for dinner, so his compulsive eating is something they deal with on a weekly basis. Aside from trying to limit his portions, there are other things to deal with like my dad sneaking food. One time, my dad went out on their back porch and started walking off ... my uncle followed after him and found my dad was eating the spare ribs they have put in their back porch refrigerator to save for the next day.
My dad’s old friend, my Uncle John, and my mom’s long time friend, Aunt Mar, are both very kind and come down to hang out with my dad or take him out to lunch. Our family friends in Florida, which includes one of my dad’s best friend’s from high school, have been good about checking in on us and seeing us when they can. Our friends Jen and Joe are great about coming down, having dinner with us and being very understanding about my dad. Joe has been a real asset with helping around the farm too.
I cannot imagine losing my friends to something like this... I'm glad for the friends my dad has.
Outside of friends, it is very hard to find people who relate to what we are going to because this seems to be more recently known about disorder. Also, because it mainly has to do with the personality and emotions, it seems to come about and be very different in each individual patient.
For example, my mom and I attended a local support group for Alzheimer's/dementia which had two women there whose husband also have FTD – the one woman was several decades older than my mom and the other woman was definitely closer in age, but her husband’s symptoms sounded like the exact opposite: extreme emotions and no real short term memory. I know she was paired up with another wife in NJ who is caring for her husband who has FTD ... but the woman is, again, several decades older than my mom and her husband is still well functioning. The one time my mom had an in-depth conversation with the woman, she said she gets her breaks when her husband goes out driving. My dad hasn’t driven since several months after being diagnosed. Thankfully my dad voluntarily stopped driving and when he brings up driving or buying a car (this happens about once a month), we remind him of his choice.
I am thankful for the friends we have and hope that my mom will be able to find more support the more people find out about this condition. I wonderful how many people have merely been mis-diagnosed and are still feeling lost...
