Love & Wisdom
Holding Onto The Moments: Leah White
The challenges and heartbreak about caring for someone with Alzheimer's
By Rob Smith October 28, 2024
This article originally appeared in the September/October 2024 issue of Seattle magazine.
This is one of a series of three stories profiling family caregivers.
My mom (Carol Dyer) was my best friend. It’s very hard to watch anyone go through that. Especially someone that’s your closest person. There was a sense of relief (when she died), and my relief wasn’t for me. It was for her. She had suffered for so long. I was with her when she passed. To see her at rest brought me peace for a while. No one should suffer in that way.
(My husband and I) decided to get married in between him finishing his undergrad and starting his master’s program. That’s when I started noticing gaps in my mom’s memory. She was 54. The day of the wedding, it became very clear that she was just really, really struggling. When I look back at the pictures, you can see that the light in her eyes is not there.
So, I left school. Her cognitive ability declined very quickly. We were looking for a diagnosis, and by the following summer they thought they had an idea about what it was. She had had a breast augmentation, and they thought it was silicone poisoning.
It took four years of very progressive decline before we just paid out of pocket to have a PET scan done, which is the only discernible way to diagnose while someone’s still alive. In that time, she had lost a lot of fine motor skills. My stepdad was a very diligent primary caregiver. That is a very lonely, hard job that puts (caregivers’) own health at risk. It’s very demanding. It’s 24/7, 365.
My stepfather was so focused on her care that he neglected his own. He actually passed away just shy of two years after her because of an undiagnosed brain tumor. That’s not a unique story. It’s a heartbreaking one, but it’s not at all unique. I think the big thing is understanding that so much diagnosis. I was always just scared. I was never resentful. I was always worried about her.
She was diagnosed at 58. That diagnosis took away all hope. She was never someone who was quick to anger, and she just spent the rest of her life being angry that this was happening to her.
I was still driving back and forth multiple times a month. Her decline was very steep. On my 28th birthday, she started to have many seizures and lost her ability to walk. We decided, along with her doctors, that it would be best for her to be in a full-time, full-care facility. That was the hardest decision we made. She was no longer able to communicate. She couldn’t walk. We had to carry her to the bathroom.
It does give me a little bit of peace to know that I don’t have a long family history of this. We’re all at risk for something, and I try not to let it consume me. One of my brothers has actually done genetic testing that shows he does not have the gene. I have not done that. I’ve just determined that it’s going to be one of life’s mysteries. I don’t want to see it coming. I am concerned that my kids will have to care for me in that way.
I count my blessings that she was there to help me pick up my wedding dress. That in whatever capacity she was there for my wedding. She was there when I told her I was pregnant with my first son. I did get to have some of these moments with her. I have this amazingly cherished family photo of me holding my youngest son when he’s about 6 months old, next to her, and the light coming on in her eyes.