November is both National Caregivers Month and National Alzheimer’s Awareness Month and because I’ve been working hard to promote them, I’ll be very busy for most of this month!!
I was so looking forward to my annual Pre-Thanksgiving Rally with the RVing Women this weekend because it was going to be a great respite for me in the midst of a lot of work. I knew I needed to leave my favorite ladies for a few hours on Saturday to drive 90 minutes to Baltimore to accept the 2019 Trailblazer Award from Johns Hopkins Medicine. I was told I’d have 12-15 minutes for my “acceptance speech”, so I finished up my speech Friday night while hanging out in Joy and then practiced and timed it before going to bed! I was ready! I had reserved a rental car with Enterprise and they were to pick me up at the campground at 9am so I could head to Baltimore. That turned up to be much more stressful than I’d intended! Enterprise didn’t show up, but thankfully one of my RVing Women took me the 7 miles so I could get my car.
When I stepped into the auditorium at Johns Hopkins Bayview and got the first look at the award I was going to receive I realized how big a deal this award is! Kim came to support me and videotaped it too!
What follows is a transcript of the speech I gave as the recipient of the Trailblazer Award!
“I want to sincerely thank Johns Hopkins for this award, especially Andrea Nelson and her committee and to Jane Marks for being one of my greatest supporters over the last two years along this journey. I also thank my daughter Kimberly for being here and supporting me today. Family really is everything!
When I was told I’d been selected to receive the Trailblazer award I was really overwhelmed. I asked myself am I really a trailblazer? So I Googled trailblazers to get some perspective, and my favorite article I found on the subject was from NASA, which defined a trailblazer as a Leader who points the way, takes the risks, and changes the environment. The article added that Trailblazers have a vision for a different future, a faith that turns their dreams into reality, and a determination that cuts through barriers and obstacles.
After reading those words I’m thrilled to accept this award because it absolutely captures what I’ve strived to achieve from almost the day my Mom was diagnosed with dementia thirteen years ago. Back then I made many mistakes, though all with the mindset of getting any and everything that my Mom needed. While nothing bad happened to Mom as a result of some of my early mistakes, I knew I’d been lucky. I wanted to do everything I could to help other families avoid some of the mistakes I made and I wanted to change the environment by eliminating the stigma that typically accompanies the diagnosis of Alzheimer’s disease. Five years ago after learning everything I could about Dementia I began meeting with individuals and families in my home, work and church communities and then added giving presentations and keynote addresses at assisted living and memory care facilities, and at Caregiving, Aging and Alzheimer’s conferences all over the country. I’m stunned that I have earned more than 150, 000 miles on two different airlines and I’ve already forgotten some of the hotels I’ve stayed in. But I haven’t forgotten any of the people! I had no idea what I was doing at first, so much of it I just did on faith. But people responded to me in incredible ways – I received standing ovations at the end of many of my presentations, and emails or handwritten notes from people letting me know how much I had helped or inspired them or people who burst into tears when I spent a few minutes with them, so relieved that they’d found hope when they didn’t believe there was any or because they realized that they weren’t alone in their fear of this disease and what it can do both to those with the disease and to those who care for them. These interactions, typically with people I’d met for the first time made it clear to me that this work is my calling. It’s what I was born to do, and will continue to do until I die.
The first time my Mom didn’t know who I was on Jan 3, 2014, my 55th Birthday. It was one of the worst days of my life, but since that time I have learned to be whomever she believes I am on that day. Two years ago she simply began calling me “very nice person”. I wish you’d known my Mom pre-dementia! Unlike me, Mom was an introvert but was kind and caring and a true lover of books! I wrote my first book Being My Mom’s Mom not only to help pay for Mom’s care, but also to capture in writing who she used to be.
After Mom forgot who I am to her I had visions of a world without Alzheimers and though it hasn’t come true as of yet, I believe there will be a cure, especially with the dedication and hard work occurring right here at Johns Hopkins and many other hospitals, universities and research facilities. Just as the NASA article mentioned, I am determined to cut through barriers and obstacles until a cure is found! My Mom raised me that way, to always help others and to fight for what was right. Until 3 years ago I had the best partner ever in that fight, my husband Tim who was so much more than a son-in-law to Mom. One of the blessings of dementia was that it allowed me to avoid having to tell Mom that her beloved Tim had died so suddenly. I may no longer have my husband and partner in this fight but I can tell you that he’s cheering me on in spirit. Though my Mom is certainly not the Mom I used to have, I see her almost every day and I find joy in being with her every single time.
If you’d meet my mom today, she would crack you up! As horrific as this disease is, there’s a lot of humor too, because Mom’s wit is as quick as ever! Let me give you a few examples. This past Feb right after her 90th birthday she escaped from her group home and after a couple of blocks she fell into a ditch. Believe it or not she was fine but they took her to the hospital to get her checked out. I rushed to the hospital and when I saw her I asked “so you went for a walk by yourself huh?” She answered “no, I haven’t been for a walk in a long time.” So I asked “then how did you get here to the hospital?” Without a moment of hesitation she pointed to the two EMTs who brought her there and said “they asked me to go ride a ride with them and I said ok”. The EMTs burst into laughter, but how could you not!!
Two weeks ago I had Mom with me as I was signing the coloring books you’re receiving today.
Mom looked at her picture on the back of the book and also noticed my photo next to hers and asked in an exasperated tone, “what are you doing on the back of my book?” I burst out laughing and replied “your book? You wouldn’t even have a book if it wasn’t for me!!” I just shook my head! And then just the other day I arrived at the group home where Mom lives to sign some paperwork just as they were loading the residents into their bus to go get ice cream. Mom waved goodbye to me and the caregivers. I waved back and yelled into the bus “have fun Mom see you when you get back”. She replied “I may go somewhere else, I’ll let you know if I’m coming back”…she’s just a hoot and I’d do absolutely anything for her!
In closing, please know that I‘m going to use this Trailblazer award as extra motivation to keep moving forward in this fight, so be on the lookout for me! I’ll be using my faith and my determination as I continue to speak around the country, and as I continue to participate in fundraising walks and as I continue to go to Capital Hill to beg Congress for more research money! Though I’d never previously thought of myself as a Trailblazer I promise you that I will uphold this title proudly from this day forward! My Mom Doris and I Thank you for this recognition from the bottom of our hearts! Though Mom can no longer remember much of anything, this is a day I will not forget! Thank you all!”
After my award was presented I was congratulated by so many people during lunch and as I personalized the copies of my coloring books that I had signed in advance of the caregiver conference of hope. When I left the auditorium and got in my rental car to head back to Lancaster, PA I burst into tears! The tears were a mix of pride that my work in the fight Against Alzheimer’s is recognized and appreciated, and joy of receiving such a prestigious award, and of sadness that Tim wasn’t here to celebrate with me! During our Thanksgiving dinner last night where my beautiful award was on the display, even the RVing Women acknowledged my awards with loud cheers! I sold quite a few coloring books as well!! It was simply one of the most extraordinary days I’d had in years!
I have three big events this coming week! There’s a caregivers conference in Harrisonburg VA, a luncheon event for Johns Hopkins and a dinner event at a memory care facility. The following week I’ll be in Baltimore County for a caregiver event and in Dover, DE for the Alzheimer’s Association. It may seem like a lot, but when you’re blazing a trail it takes work!! I’m definitely up for the challenge and I’m so proud of this work and the opportunities I’ve been given!! I’m truly Blessed!