Your Loved One Has WHAT?
When we FINALLY received the diagnosis of FTD for my dad, my first reaction was to google (because … Maria, hang on to your seatbelt), the doctors didn’t provide any information. I sat down, opened my computer and began the never-ending search.
What is FTD? Whats the prognosis? What are the symptoms? Is it genetic? What causes it?
Let me give away the ending, I still don’t fully understand FTD - neither do the experts (and they’ll admit it!) Now that I’ve walked the FTD journey, I feel like one of the hardest parts was explaining the complexity of this progressive illness to people like the person I was - people that had never heard of FTD.
A few things to be aware of when thinking of this task ….
the longer and more often you explain it, the more comfortable you’ll get it. You’’ create your own “elevator pitch,” if you will.
Practice! Explaining this disease to someone who has never heard of it or someone who you really want to understand, you gotta have the right words to make it digestible. Also, think short and sweet. Oh, and simple.
Leave room for follow up questions. Sometimes conversations roll much smoother if the person has space to ask questions or gain deeper clarification.
Don’t use terms that you’ve read about but don’t fully understand.
One of the most important things I tried to keep in mind when explaining FTD is this : the clearer and simpler (ha, I know it’s not simple but go with me here for a second), the better this person will understand and maybe tell another person and that person will tell another person and that pers…. I won’t keep going. But you get what I’m saying, hopefully? This is another way of spreading awareness.
Here a script that I bended and tweaked during each different “stage”
Beginning: “My dad was just diagnosed with a form of dementia called FTD that normally attacks much younger. This progressive illness affects his personality, decision making and overall social interactiveness. My family is at the beginning of this and trying our best to navigate it.
In the Thick of It: (Also, at this point of my dads illness, most people knew/understood my journey to some extent. but for the people that I
was meeting/getting to know I would use the following…) ** Usullay someone would ask something about my parents location (i.e. “Are your parents nearby?)
“yeah, my mom is up the block and my dad isn’t well. He has a progressive neurological disease called FTD (Frontotemporal Dementia) and it effects his behavior, his speech and his ability to care for himself.”
*At this point said person usually compares their experience … “Oh, my grandma had dementia”.
My response: “Oh, I’m so sorry to hear. My dads disease is a little different as he’s so young. This disease usually heavily effects behavior, judgement and their overall personality. It’s so hard to have him miss so much. He’s in a nursing facility and needs help achieving all his ADL’s and is on thickened food. He no longer talks and can’t easily express himself anymore.”
End Stages: (This was always the hardest) “My dad is dying. He’s had a unique form of dementia for the last —_____ years and his body has had enough. It’s been such a long, difficult, bittersweet battle and i’ve missed him for so long. There is nothing like grieving someone who is still alive.” (Again, this one was always hard to navigate, however typically your close family and friends will be aware of the situation).
So now that we got those little tips out of the way, I encourage you to practice this script, elevator pitch, etc. It’s complicated.
…. It still is.
Xx,
R
