Why compile this site with all the other resources that are out there? This lady, Maureen, is “the why”.
We had a beautiful romance and knew each other so very deeply. That intimacy was never so needed as when she contracted the semantic variant of Primary Progressive Aphasia – a form of FTD. It broke down her ability to independently do simple tasks and to clearly communicate. We had to stretch the limits of reading body language, inflections, sounds, and moods. I, who knew her so well, was deeply challenged, so imagine the dilemma of the professional caregivers trying to sort through her needs while trying to understand this, still widely misunderstood, form of dementia.
Maureen would repeatedly fold things when she was angry, pull me in when she felt sad, tap the table when she was hungry, wring her hands when she had to go to the bathroom, pace in short routes when she wanted to lay down and in longer routes when she wanted to go out, and peak her tongue out when she was thirsty. Of course, we had to be nimble because those cues would change as the disease progressed.
Once Maureen was diagnosed, I read. I read a lot. However, finding resources proved a difficult task. Slowly, I amassed internet shortcuts and some strategic books. Later in her disease, I would often go to the Association for FTD site (www.theaftd.org).
In the summer of 2019, I volunteered to facilitate an FTD caregiver support group (and still do). I found many were in a similar situation or had passed through to the other end with the death of their own loved ones. I would get questions about Powers of Attorney, care facilities, and what we referred to as “life hacks” for helping our loved ones through difficult moments.
That interaction was a positive, but as our membership grew, I found myself repeating those resources again and again. I still do.
I want this site to be a substitute for lonely, middle-of-the-night, searches for this or that. I want to bring resources from across the professional landscape. This site does not have all the answers and resource links, nor may it ever. But together, we can grow it.
Maureen has been gone, going on 2-1/2 years now, so as I look at ways to keep honoring her memory, this site is my way of giving back to those that helped me before and others I have yet to meet.
Why? Because Maureen, my wife and love of my life, loved helping others, and passed her legacy to me.