The Payoff


The Payoff

I have been what some people would call an extreme advocate. You want to talk about dementia, especially FTD, I am there. I will tackle any opportunity to talk about FTD and dementia. I even have purple in my hair to start conversations in public about dementia. I have traveled from California to Washington, DC to talk about needs of dementia caregivers and speak on their behalf for services they need and the frightening statistics of early death among these stressed caregivers.

I have done podcasts, chats, webinars, speaking engagements, conference sessions, co-chaired dementia events, put up tables at fairs and exhibitions, became part of the Georgia Alzheimer's and Related Dementia work group committees, wrote articles, been interviewed, and who knows what else. This is not to brag, this is to point out that I put my money where my mouth is, as my Mom used to say. I show up. I persist. I challenge. I share. I support. I get supported. I educate myself. I take any opportunity offered to me. I care.

Yes, I have spent countless hours advocating while full time caring for my Mom (who passed away in March) and my husband with frontotemporal dementia (yes, the 60 Minute report kind). I have been tired, I have been broken (I broke my femur 2 years ago and did a conference call from the hospital on a very important call I felt I could not miss), I have been brushed off, I have been yelled at, I have been laughed at, yet I can't quit. I am addicted.

I tell you all this because I am you. I am not special. I am someone who worked her entire life, raised a son, lived a middle class life, had good times and bad, just like you. I do not have 15 letters behind my name to impress you, I do not represent any organization that pays me a salary for my advocacy. I am me. I am passionate about changing the conversation on dementia, especially FTD.

Yes, I could rely on others and organizations to tell my message, but they are not living it daily. Only those of us doing full time care for someone with a "related dementia" (how trivialized does that make you feel, that they can't even say the word) can tell you what matters to us, what we need and what we want people to know.

I have been a part of GARD (Georgia Alz and Related Dementia) committees since late 2017. I was often the only non professional in the room discussing what people with dementia and their families need. I was a lone voice of lived experience. I had no idea what anyone was saying in acronymics (they love using initials for things), but I stayed, I learned, I saw who was with me and who was not with me in my efforts for recognition of young onset dementia. As I settled in and got comfortable raising my hand everytime they said Alzheimer's and asked, are you including the related dementias, after all we are GARD not GA. I then felt we needed a bigger presence. I went out an recruited some FTD family care partners to join me in my goal of making everyone say dementia, not the A word. Believe me, I know Alzheimer care partners have the same road as I do, but to be diminished by being a "related dementia"  was not setting well with me. Having to read an entire bill to make SURE it said "and related dementias" was tedious. I now have partners in GARD who work on saying dementia, as it should be.

Yesterday I got the payoff. At the quarterly meeting of GARD, every speaker used the word dementia. My banging the table, raising my hand, being there at every meeting, showing up, speaking out, recruiting others, paid off. We have ripped a hole in the narrative. We have been heard. They will never say anything but dementia again because I will be there, raising my hand and they know it. Some speakers even looked right at me when including young onset in their discussions.

My heart is filled. I know I have made a difference. If I can, you can, too. Stuck on where to start? Just contact me and I will tell you what you can do that fits your personality.

My work is not over. There is much yet to be done, but I know GARD will never go back, I know we have been heard and respected because we are there, we care, we show up. I urge you to make a difference. Make a phone call, tell the person in front of you at the grocery store about dementia, explain that there are over 100 causes and the neurodegenerative diseases are fatal, always. Say the words FTD, Lewy Body, Parkinson's, vascular. When people say "Oh, Alzheimer's", say no, there are many fatal dementias and people as young as their 20's die from these diseases that are nothing like Alzheimer's. Make us count.

Please find a cause that makes you passionate for change and go for it, it is well worth the sweat. Making the difference makes it all worth it.

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Great, thoughtful post, Sharon. So glad for your victory, for the victory for all of us. Thanks for keeping us updated on all your efforts.