“There is no greater agony than bearing an untold story inside you.”
― Maya Angelou
A week ago, I “came out” on social media about my mother’s Alzheimer’s disease. I started a fundraiser for the Alzheimer’s Association. I’ve been overwhelmed by the response. With more than 40 donations, I have surpassed the goal of $1600 symbolizing the 16 hours of daylight on June 21st. Feeling helpless to do anything to stop the progression for my mother, the stories coming from others have touched me deeply and helped me to feel part of a loving community.
In Facebook messenger, when I finally figured out that J was a high school friend whom I haven’t seen in 44 years, I sent her a thank you message. She responded.
Hi Margaret, I was happy to make a contribution. Lewy Body Dementia stole my husband from me (18 months ago). Praying for a cure for any form of dementia. Blessings to you as you navigate this world with your mom.
J from Facebook Messenger
It took me a while to figure out the website, but donors are able to leave me a message. This one came from Linda Baie, a blogger whom I’ve never met face to face but have known online for years.
My husband died from Parkinson’s Disease but he, and I, also had the long journey of the secondary part, Parkinson’s with Lewy Body Dementia, so like Alzheimer’s. I’ve often thought of it as a long goodbye. Best wishes to you, Margaret, and to the family in your sad journey.
Linda Baie
The donations have come from far and wide, close family members to writing friends and even from a former student. When you reach out, come out with the truth, you never know that there are many people in the ocean with life vests to offer, stories of their own struggles connected to yours.
If you have an experience with Alzheimer’s or something similar, please leave a comment telling me your own story. You can also reach out by email or messenger. Our stories are important and connect us.
Reflections on the Teche 
Margaret, when my family said our final goodbye to my 94-year-old uncle, he no longer remembered me. Alzeihemer’s disease took the body of a strong WWII Marine and transformed it into the skeleton of a frail old man. Life is full of trials but the beauty of faith is in the hopes that research can find breakthroughs.
I’m so sorry about your uncle. 94 years is a long life. Thanks for sharing your story.
Margaret, Alzheimer’s is an arduous journey. Watching my mom’s mind deteriorate is heart breaking. Living in another state, the best I can do is call her 3-5 times a day and chat with her.
I’m glad you can still talk to her on the phone. My mother is not really able to do that anymore, so I have to count on my short visits. Thanks for sharing your story.
I’m glad you are close and can visit your mom. I truly am sad that the day will come when she won’t be able to talk on a phone.
Margaret, I just love the line you wrote: When you reach out, come out with the truth, you never know that there are many people in the ocean with life vests to offer, stories of their own struggles connected to yours.
You are so right, stories connect us and are that life vest.
A dear friend of mine had Alzheimer’s and it first took her voice. I still visited her often and filled the space with my voice and always could notice through her eyes her frustration. Her family’s care modeled for me how to honor a parent in a dignified way. I remember Evelyn as I donated to the organization in your mother’s name and I do feel hopeful that soon, we will understand the brain better to eradicate this disease. You are a strong model for how to do something when our reality appears hopeless. Thanks for sharing your story.
Thanks for letting me know about Evelyn. Eyes can communicate even after speech is gone. Thanks for your donation. Please email me your mailing address.
My address is:
5218 N 12th St
Arlington, VA 22205
We were in Israel for Isabelle’s Bat Mitzvah, and then we came home to the devastating passing of my mother-in-law whose illness I’ve alluded to in my blog posts for years. Therefore, I missed your post last week about your mom.
I haven’t had a family member lost to Alzheimer’s, but know plenty of people who have. It’s a painful road for the family to travel down. I am sending you enormous support as you navigate what’s next with your mom.
I’m so glad you got the trip of a lifetime before this deep sadness.
I am currently in the caretaker role. I fairly leap between despair and “I’m okay” living with my husband who no longer is my husband due to FTD (frontotemporal dementia) where reasoning and logic melt away and OCD behaviors and raging anger can erupt. Fortunately that stage of anger was short and seems to have passed.
It’s a terribly long good bye and began at a terrible time just as we retired and in the middle of house sales, moving, family member deaths, my fall, Covid and I don’t know what-all. I’ve had to “grow up” fast to take care of business. We are in mid to late stage from what I can discern. Still walking but no memory of the present and most of the past. Still some childhood memories remain and people he sees regularly he remembers. It is a lonely life. I’m glad for online connections!
Thanks for sharing your experience, in so many ways much harder than mine. God bless you, Donna in your journey. I hope you can find small joys in each day.