Being an Alzheimer’s caregiver is hard. I raised three kids and went through a divorce and I’ve faced down everything life has thrown my way so far, but this caregiver curveball is taking everything I have to give.
First, there is the sad, twisted knowledge that my mom’s Alzheimer’s comes from a Traumatic Brain Injury. If she hadn’t have had that damn subdural hematoma she’d probably be on a singles cruise right now, wearing her red hat and line dancing in the ballroom at night. Fate is a fickle bitch, my friends.
Second, add to that the fact that I always thought I was my mother’s least favorite child. She had two kids. So there’s that. Recently though, my sister said out loud that I was my mom’s favorite child. My sister always heard that she was supposed to be a boy, so she just figured my mom didn’t like her much as she liked me. It’s crazy what we grow up with and carry with us into adulthood and how all that baggage stays with us. My mom loves both her children, she loves us each just as much, yet different. It doesn’t matter anymore who we think she might have loved more, it just matters that we love her and she loves us.
Third, pile on that I really have no idea what the hell I’m doing as an Alzheimer’s caregiver. With my kids I could use my MOM voice, you know the one. I would break out that MOM voice and they would look at me and know that they had better shape up or else. Every mom has a MOM voice and it’s epic. It gets the job done. I used to say “hey, hey, HEY” and by that last HEY my kids froze in place and knew I meant business. I can’t use my MOM voice on my mom without belittling her and causing her sadness. Oh, but somedays I wish I could.
Finally, there is the absolute knowledge that my mom is going to die from this horrible disease. As I talk to her, laugh with her, comfort her while she cries, I know that each second is one less second I have with her and one second closer to when she isn’t going to be able to speak, or sit up or hold her head up or swallow. I am walking with her in this long, drawn out, inevitable journey to her end and then I get to keep going. How am I supposed to do that? I know that I’m doing the best thing for her, just by being there, even if she doesn’t know I’m there, but she’ll be gone someday and I just don’t want her end to be all I remember of her, because right now her disease can overwhelm my life. How am I supposed to just let go?
We are all dying from the second we were born, right? But there is something to be said for the mystery of it all. We live and live and live and hopefully make the most of the time we have in this existence and our death is the happy end of a long life we can look back on. Some don’t get that, I know, but with my mom, she can’t even look back. She has no idea what day it is, she can’t remember a conversation from an hour ago and she gets no reflective look over her shoulder as she leaves this world.
She is confused and terrified and she cries so much. Her experience is one of loneliness, of endless days and long, dark nights. She doesn’t know I’m her daughter most of the time. She wants to know where her family is, why no one comes to see her and yet, she can’t remember their names, just that she’s supposed to have a family.
One piece and one memory at a time, she is leaving me and it’s just not fair. It’s not fair to her, it’s not fair to her grandchildren, her great-grandchildren and her children, and it’s not fair to anyone else who has to go through this experience.
I’m facing this down and walking this path and doing my level best to be there for my mom right to her very end, but this is the most difficult thing I’ve ever done in my life and I really REALLY have no idea what I’m doing.