November is National Caregivers Month, so we’re celebrating and honoring our Alzheimer’s caregivers by sharing stories written from the caregiver point of view. We’re starting today with Laurie, who is a long distance caregiver for her mother who was diagnosed with the disease three years ago. It was Laurie’s 25th birthday when she got the call about her mother’s diagnosis.
For about two years, my sister and I had really noticed our mom’s short-term memory was struggling. We used to joke about it and laugh and didn’t take it too seriously. Here and there we’d say, “Mom had an Alzheimer’s moment” and shrug it off.
But when she lost her job because of it, it wasn’t funny. Something was obviously wrong. She went to the doctor proactively and had tests done, and the diagnosis was dementia and early-onset Alzheimer’s. My mom called my older sister Sara to tell her, then I got the call from Sara. It was absolutely devastating and on my 25th birthday. I don’t remember too much about it except feeling frozen and like I had gotten a call that she passed away.
That was three years ago and the biggest change since the diagnosis, for me, is the role reversal. I’m still young and unprepared for this disease to take over my mom’s life. When that happens they need more help than you do and things shift around. I think about her every day, hoping she doesn’t leave the stove on; if she drives, hoping she can find her car after she parks it, and things like that. I also moved to San Francisco six months ago from Columbus, Ohio where my family is located. Being away from her is harder than I ever imagined. I try to go back every other month to visit her.
If someone asks me what it’s like to have a mother diagnosed with this disease, the best way I can describe it is missing someone so much for everything they’ve done for you; feeling like they don’t exist anymore and yet they’re sitting across from you. I miss her so much – the person she was, and still is in her heart. I don’t have my mom anymore and I just don’t think it’s fair. No amount of money or surgery or medication will ever bring her back, and now all I can do is think about the day when she won’t even know who I am anymore and try to come to terms with it.
I Walk to End Alzheimer’s to raise money for research and testing so hopefully someday a daughter’s world won’t stop when she hears this diagnosis for her mom. I want it to be treatable, reversible, avoidable so the relationships people form that are supposed to last a lifetime truly do.
- Laurie Sanford, daughter, caregiver