For caregivers on Mother’s Day: Is role reversal is part of your life? My relationship with my mom has flipped around many times. Last year on Mother’s Day, I felt like we were on the Titanic ready to capsize. Mom was weak, then strong, then frail again. But she’s lived to see another Mother’s Day. Wow!
The two of us have taken a beating as her dementia has progressed. If I didn’t remind Mom about her daughters, she might not know that she had any. One of my shoulders has been dislocated several times and my back feels like it belongs to an old lady. (Maybe I’ve become one!) Mom can’t talk or walk and she can barely stand up even with two people supporting her. But she ate the Mother’s Day brunch I cooked for her and still savored the taste of her favorite foods. Despite her lack of language she managed to express her pleasure through laughter and the smile that never quits.
I’m so happy that we had the chance to do this again. Some days are so hard for her. She gets weird electric shocks that frighten her and scare me, too. When it’s rainy, she seems to sleep through everything but meal time. On many occasions, I could have sworn that we were sharing our last dinner together. Then she somehow finds the strength to revive and I think, “All right, the seas are calm. This voyage will continue.”
It is probably easier to pick a Kentucky Derby winner than it is to predict the course of dementia. We’ve been given time estimates, symptom warnings and lots of family education to help us get through this long process. The only thing that really stays consistent is the deep love we feel for my mom. I used to think that love was mysterious and fragile. But as we celebrate one more miraculous Mother’s Day, I see that love is tough and durable. It is more reliable than a diagnosis and more potent than medicine. It’s a bewildering experience to serve as the caregiver for a parent. When it feels too confusing, love is the only true compass.
The lost childhood of caregivers goes unnoticed. If your aging parents retain their memory, you can hash over recollections of past Easters and Thanksgivings. But when parents get dementia, you lose the chance to share remembrances of youth.
Today, Easter gave me the opportunity to spend time with kids of all ages. We went to two different Easter celebrations and I got to see the holiday through the eyes of a 14-year old, an 11-year old, a 7-year old and a 5-year old. The teenager was pretty obsessed with her iPhone but she also enjoyed talking about her extra-curricular activities at school. The younger boy showed us the toys he got, fully aware that the Easter bunny played no part in supplying them. But he managed to keep that secret from his littlest cousin. She was totally absorbed with racing around in her sparkly shoes. The kids weren’t playing a game, they were just having fun running up and down the yard.
While I visited other family and friends today, my mom was being cared for by someone else. Since I wasn’t preoccupied with her welfare, I was actually able to take a minute to remember the days when I would run with my cousins on family holidays. We raced each other up hills that seemed enormous, then rolled back down them end to end. That race probably occurred 40 times on holiday afternoons like today’s warm Easter. We kept going until all the special dishes were served. Then we wolfed them down, imprinting our brains with the texture and flavor of foods we’d crave for the rest of our lives.
Do you know how to make your mother’s potato salad or peanut butter eggs? Can you remember your dad’s advice about how to shoot free throws or fix a flat tire? Those matters seem small when we’re overwhelmed, but they’re actually precious and we can’t afford to lose track of them.
Serving as a caregiver immerses us in the routine of meeting our parents most basic needs. In that process it’s easy to lose the pieces of ourself that form the core of our identity. I must act like a parent much of the time, making sure Mom eats right, stays clean, and gets proper medical care. I calibrate my emotions so she always feels supported. I accept the burden of stress so that she might function with difficulties minimized. But I rarely have a minute to recall the sweeter elements of youth and I believe that this is a loss many of us suffer. Although we don’t want to live in the past, we still need to remember who we are and how we got here. Holidays, like today, are especially important for cherishing memories at the root of family love.