When I picked my daughter up from school today, she had two drawings on colored construction paper. As soon as she got in the car, she leaned over my mom’s seat and presented one of the pictures to her.
My mom “oohed” and “ahhhed” appropriately over the drawings of girls with long hair and long dresses. My daughter sat back, pleased with herself, and I just smiled at the beautiful moment I was blessed to witness.
Later on, that night all three of us were in the kitchen making dinner together. In truth, my mom and I were cooking, and my daughter was attempting to be helpful to the person who seemed to have the most fun task at the time. My daughter said something funny, my mom giggled, and I realized how much I love her giggle. After dinner my mom cleaned the kitchen, and I put my four-year-old to bed.
I’m working really hard to savor these sweet moments. I understand they are a gift as many times this journey in the sandwich generation is not an easy one. My daughter is four and my mom is seventy-four. Sometimes they are more similar than they are different.
My daughter is four and my mom is seventy-four. Sometimes they are more similar than they are different.
My mom has dementia. We aren’t sure what type – she has been diagnosed with three different types in the last few years, which is remarkable since there are generally four common types of dementia.
I first noticed something was wrong more than ten years ago, on a sunny afternoon in my living room. I cannot remember what we were talking about. All I remember is being confused. My mom was trying to argue a point that I knew she knew was wrong. It was one of those moments where I repeated myself several times, thinking she will hear herself and laugh at how wrong and dangerous this statement was. She didn’t.
When I brought it up to her doctor at the time he had her name ten animals. She didn’t repeat herself (though I didn’t think saying “Chihuahua” and “shih Tzu” should have counted) and her doctor told me she was getting old and I was concerned about nothing. Almost two years later I brought it up to him again – she repeated two animals twice before she got to the seventh animal. I cried. I’m still upset with myself that I didn’t pursue it more initially; he prescribed her a common Alzheimer’s’ medication; told me it wouldn’t cure her, and we never discussed it again.
It wasn’t until a few years ago, when I wrote a Facebook post looking for a recommendation for a geriatrician that a physician friend of mine in Louisiana private messaged me about the same time as a nurse friend of mine here locally asking me who her neurologist was. A neurologist? So, at the same time I was looking at nursery decorations and talking out names for our first baby I was advocating for a neurologist.
Her disease has not progressed the way any article or book says it should. Her symptoms do not perfectly line up with what any common dementia type says. She has good days and bad days. I’ve had days of more than 15 missed calls from her during my work-day and days when she can completely recall a memory from my childhood. There was a day, a few months ago, when she went into my kitchen to cut up some watermelon for my daughter, forgot how, and sat down at my kitchen table confused. There have been times in the Wendy’s drive thru when she’s told me she has “never been here before.”
Dementia is stealing what it can of her short-term memory. Yet, in these past ten years one thing she has never forgotten is her love for me and her love for Jesus. She is quick to hop in the car to support any activity my daughter has, and she speaks my act-of-service love language fluently. She will wander around the library for a few hours so I can work before a doctor’s appointment. She will say “I don’t know what I would do without you.” She will mop my floor as a surprise for me and she will call me six times to remind me to call my dad.
I don’t know how to describe how hard it is juggling nap times, work projects, date nights, and pill schedules. How frustrating it can be to get three calls within two hours asking me the same question while I’m at the zoo with a friend. I have watched her lose friends who cannot remain in this journey with us. I have watched her be taken advantage of by family members. I have watched her realize that she forgot something important and the frustration that comes with not being able to recall simple memories. I have left work in the middle of a Friday, when I can tell by the third phone call that she isn’t having a good day, to take her to the mall where I quietly shed tears on the floor under a collection of Dooney and Bourke purses.
However, there has been beauty in this journey, and I pray I keep finding it. Times like watching a colleague welcome my mom into a room and get her situated with snacks while I lead a training. Or watching her make new friends, who understand her diagnoses(es). There is so much beauty in watching her interact with her only grandchild on the swings in our backyard, content to talk about nonsense. She desires that I am never alone and will sit with me at Doctor’s Care on the fourth of July or ride with me out of town for no reason or entertain my daughter while I’m at a Junior League meeting. This journey has been beyond difficult, but I am so blessed to be here, that she trusts me, and that I still get to listen to her giggle.
This article originally appeared in issue 003 of Access magazine. For more information on living a new normal after a dementia diagnosis, visit RichlandLibrary.com/access.