I feel like I need to qualify some things before I hit publish on this piece, but I'm trying to just let this one be. Once on an evaluation form for a graduate class I taught, a student wrote that I spend too much time introducing the subject instead of just getting to it. So, just one quick thing and then I'll get to it: I have my mom's blessing to write more openly about her condition and its effect on our family.
We were riding in the car together. I was taking her home after my daughter's birthday party. It had been a fun, if chaotic, evening. Lately, Mom has been getting worn out quickly during these family functions. Worn out leads to confused leads to agitated so I was eager to get her home and settled.
She said, I want to talk to you about Griffin. Her brain is so tricky, because it is still able to formulate such complex thoughts in one moment and has complete tunnel vision in the next. She's able to convince renowned experts in neurology into thinking she's much more capable and independent than is actually the case. I've found that conveying the nuance of my mom's condition, a rare form of dementia, is like trying to swim in mud. The little moments are revealing though.
Ok, I reply, let's talk about it now. I'm not sure what it is about my seven year old that's bothering her. He won't talk to me or play with me anymore, she says. Her tears come immediately. We used to play games together all the time and now he won't even sit near me. If I sit near him he gets up and moves.
I want to say oh, that's not the case at all. But she's right. I'm surprised that she's noticed because her condition makes it hard for her to judge social interactions. I take a breath and say, I've noticed too. It's confusing for them, Mom. It's confusing for me, so imagine how hard it must be for the kids. He doesn't know how to act.
But I'm still the same person, she says. I'm still me.
No, you're not. The thought is quickly formed in my head, but I catch it before it comes out of my mouth. This is the person that I considered my closest friend in life, the person who knew me best in the world. For a decade bits and pieces of her have been slowly falling away. I try to be present and be grateful that the decline has been so slow. When I do allow myself to reflect, it feels like I'm grieving. She seems unable to understand that I am deeply sad about her decline. Maybe she's incapable of this type of empathy now because of what's happened to her brain. Or it might simply be that it's hard to acknowledge that this disease is affecting her daughters and grandkids on a deep level. A particular cruelty of this form of dementia is that she herself is fully aware of the abilities she's lost.
I've noticed this happening more often. She says something with which I disagree, where the whole situation is not being represented, and I don't know how to respond. I feel so stuck. Every response is the wrong one. Reminding her that she can't play any games with the kids because she is essentially blind and can't see the faces of the Guess Who game much less have the coordination to tap the figure down is not constructive. Going along with her head in the sand view that, Everything is just fine, doesn't keep me in integrity with myself. I think I know what she means when she says this - that at her core, the truest essence of herself, she is still the same, even as all the former capabilities slowly get stripped away. I've started to stay silent in these moments, all these thoughts whirling in my head
Lots of us are dealing with dementia in a loved one. I became a member of the sandwich generation earlier than many. I was 30 and pregnant when my mom was diagnosed. I have a wonderful support system and a terrific therapist. Still, I feel an internal drive to write about it to bring it out into the light. If you are experiencing something similar know that I see you. I see your shoulders hunched forward and the rise of anxiety in your chest when your phone pings. I see your struggle.
Do you know someone who would benefit from reading this? Please share.