The greatest blessing of this conference for me is that Teepa Snow uses real people living with dementia who share their stories. The level of authenticity that brings, as well as the hard-hitting reality of why this all matters so very much, is so impactful.
I was doing pretty well at the beginning…until the whole room sang the John Denver song about friends. Mitzi loved John Denver. And
these words were so perfect. As I listened to the guest speakers giving their dementia testimonies, I couldn’t help but think how much Mitzi would have loved this. How much she would have loved the opportunity to be able to share her story to help other people. How much she would have loved to be able to wear the little ribbon on the bottom of her name tag that indicates she has dementia and is willing to talk about it and answer questions. She would have been so thrilled to get to sit in on the sessions where everyone was talking about various aspects of the same topic. Where it was safe to talk about it. Where she would be embraced and accepted and celebrated for “being picked to have this disease,” as she always said. Oh how I wished she could have been up on that stage sharing her story, too.
But then I looked down at my purple shirt from the Walk with the logo on it that my sweet friend Nancy drew for us. “I’ll remember for you,” it says. “Moving Forward For Mitzi.” And I looked at the makeshift business cards I had on the table with my info on them. Ansley@iwillrememberforyou.com. All of the sudden, I had the most overwhelming sense of being reminded that she left me with her unconditional permission to be her voice, even though the doors of dementia were closing in front of her. Just as I had learned to speak for her while she was still here, she equipped me during those three years while I was her sidekick to be able to convey so many of her thoughts and feelings about this disease. It was such a tremendous moment of validation that I was right where I was supposed to be—in this time and in this space—doing right what I was supposed to do.
I have been just as excited about learning all of the copious amounts of information as I have been about making connections with the people in attendance. During one seminar, the gentleman I was sitting next to, who is living with a form of dementia called Lewy Body Dementia, got up and left because the room was too noisy. He had been fascinating to talk to and hear his story prior to the seminar starting, so I followed him out and spent the next hour asking him questions and listening to his candid answers. He is a huge advocate for raising awareness…not so much because he’s passionate about finding a cure, but more so because he wants to help the world find ways to care better so people living with dementia can live their best life.
He shared with me something he wrote that he wanted people to know and I just loved it. I could so hear Mitzi’s voice echoing in so many of Robert’s words: “My diagnosis is Lewy Body Dementia. But it doesn’t define who I am. I’m still Robert and I will always be Robert. There is life after the diagnosis of dementia.”
Mitzi proved that daily in the time I was so honored to get to spend with her. I am so grateful she never let Early-Onset Alzheimer’s define who she was…????
