I’ve been composing this post in my head since I read about the Utah State University study on the relationship between caretakers and Alzheimer’s patients.
I was one of the primary caretakers for my grandmother — who among other health issues has Alzheimer’s disease — for the better part of three years. It’s hard, frustrating, stressful, exhausting work, and eventually I had to stop. I packed up and moved across the country to have a fresh start in a new place, surrounded by friends.
And left my mother doing the majority of my grandmother’s care.
When I was still there, we split the care. She did doctor’s visits and cooked dinners; I did breakfasts and insulin injections twice daily for my grandmother’s diabetes. I was at home to field questions and ease confusion. When my grandmother went looking for her parents (who passed away decades ago), I was there to hold her hand. When she woke up disoriented or afraid in the middle of the night, the dogs and I were there for security.
Leaving was a huge relief for me, and a doubling of the burden on my mom. She’s been very supportive of my moving away, but I still feel guilty sometimes. My father was very angry at me for leaving because it threw all the responsibility in my mom’s lap. That doesn’t help the guilt any. Still, my mother insists that I need to live my own life, and not spend it taking care of my grandmother.
Relatively recently, the family decided that my grandmother needed live-in care. The young lady they hired is wonderful — upbeat, energetic, patient, and hardworking. It’s been a relief to know that there’s someone at the house overnight again. It’s been a relief to know that my mom gets a bit of a break from caretaker duty. She still has to do insulin and doctor’s visits, but hopefully it’s a comfort knowing there is someone with my grandmother at all times.
It is and it isn’t for me. I still sometimes feel like I abandoned my grandmother, and abandoned my mom. I feel like I made a selfish choice, and in doing so let everybody down.
Hopefully, I’m the only one who feels like that. We’re always hardest on ourselves, right? And while it was a difficult duty, those three years gave me a chance to spend time with what was left of the grandmother I knew growing up. She’s not really the same person anymore, and that’s the greatest loss of all.