By Misa Acox
When Mary Salter became a mom, she probably never envisioned that the bulk of her motherhood would be caring for her children; however, Mary is a full-time caregiver for her son Bryan who is 42 and part of a family who have seen their fair share of Alzheimer’s in their family.
Mary shares her story:
“Pictured here is a brother (Bryan) and his sister (Carrie) ages 43 and 42. Both inherited a very rare form of Alzheimer’s from their dad who passed the day after his 43rd birthday. There were 4 brothers born in the family. In a matter of 9 years all brothers passed from the disease. The youngest so far was 37 years old. You see, Alzheimer’s is not just for the old.”
Mary only learned of the particular gene – Presenilin-1 –when she and her husband started a family. And as luck would have it, each child carries a 50-50 chance of inheriting this gene. Of their three children, two inherited the gene.
Since he was a child, Bryan has always been fascinated by the ocean and aquatic life. His life-long dream has been to swim with the sharks. Bryan’s illness is progressing quickly and Mary was motivated to fulfill his dream wish.
Last Christmas as a gift, Mary “adopted” a shark for Bryan –a hammerhead shark named “Eddie” – through a wildlife organization. Hammerheads are his favorite and he even has one tattooed on his arm. Bryan is able to “track” Eddie in her travels in the ocean through a website called “Fahlo” and she is now located in the Bahamas at this time. They are hoping they can find her.
Last year, Mary started a GoFundMe account in an effort to make Bryan’s wish come true. She adds, “As a full-time caregiver to Bryan, I am unable to work, so funds for a trip were not in my budget. I am reaching out to family, friends and strangers alike, hoping that we can raise the funds needed.
Time is of the essence. You see, each day brings further memory loss and confusion.”
Through the incredible generosity of people from all over the U.S., last year they raised the money for a trip to the Dominican Republic with hopes that Bryan could be in the same area as “Eddie.” Mary, Carrie, and Bryan made the trip along with three grandchildren. They saw the sights, went ziplining and explored the area. Unfortunately, Eddie was not in the area. As much as that may have been disappointing, it was a big deal to do this trip together. She says about Alzheimer’s, “I am not sure how much time we have left. Alzheimer’s does not ask permission. It just comes in and takes what it wants, when it wants.”
In addition to the “once-in-a-lifetime trip,” both Bryan and his sister Carrie have been participants in a clinical trial for a new drug. Carrie began the trial nine years ago, while Bryan was first denied because of some underlying liver enzyme issues. Once those were resolved, he entered into the trial.
Even though the clinical trial is a “blind” trial, the results witnessed by Mary for both of her children couldn’t be more different. Mary now believes that her daughter Carrie received the “live” drug, as she is still able to work and drive. Bryan, however, has slowly progressed in his diagnosis, not longer able to do daily tasks such as dressing and showering without some assistance. Of course, this breaks Mary’s heart. She has worked to educate herself about the disease and tried to prepare herself for the foreseeable future, but admittedly she says, “she feels like a failure.” She struggles with finding engaging activities for Bryan in hopes of making his life more enjoyable. She also knows she needs to reach out for support for herself, too. His sister, Carrie, also sees the difference in Bryan and is scared for her future once the clinical trial ends in August 2023.
Mary recently participated in Alabama’s Advocacy Day in an effort to raise awareness for Alzheimer’s and the importance of support for those living with the disease. It is a topic she now knows firsthand.
Motherhood has come full circle for Mary – caring for grown children as she cared for them when they were young. She does what every mother does: holds fast to their dreams and hopes for a cure.
About Alzheimer’s Association®
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.
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