Frontotemporal Dementia – FTD “F*ck This Disease”
In honor of it being Dementia Awareness/Action Week, I have decided to publicly share how this condition has impacted my life. After a year and a half of seeing the intial symptoms, my father was diagnosed with Behavior Variant Frontotemporal Dementia (bvFTD) in March (2017). A lot has changed for my family since then. My parents moved from Denver to Milwaukee to be closer to family, good hospitals(i.e., Mayo, Froedert), and most importantly, to live in a lower elevation to get his severe sleep apnea under control (suffers from both cognitive and obstructive). Last year my family decided to take a trip to Europe for my dad’s birthday after receiving the diagnosis. We had no clue what life would be like in a year or even few months. Within the past year, his personality has changed, along with his cognitive/physical functions.
I decided to move to Milwaukee to be close by in order to help my parents adjust to this new reality. I’m not going to sugar coat it, it has been a difficult adjustment for us all.
Being a caregiver for my dad has given me the chance to spend more time with him, but it has also affected my personal relationships. This condition has the tendency to isolate caregivers and patients from society. My dad seems to feel less anxious when people know that he has dementia, and it relieves some of my anxiety too.
There are good days, and there are bad days. Right now we are just trying to take a day at a time, find ways to cope, find humor through the tough times, and the ability to accept our new reality. One new hobby he has is his new lego collection.
People ask what they can do; l we ask to be kind, considerate, don’t isolate him and people with this condition or directly affected with it. This condition too often creates what feels like an isolated dementia dungeon, for the patient and the caregivers. Hopefully one day, there will be more research, treatment, and a cure. Until then, spread awareness, take action and to keep hope in your lives; "For hope is being able to see there is light despite all of the darkness."
#dementiaawareness #FTD #dementia #iloveyoudad #mentalhealth #family