Are you tempted to compare yourself to other people? Last week I almost made the mistake of comparing Mom’s 75th birthday event to other people’s parties. But that’s unwise. Having a mom with dementia means that our family experiences are always different. Mom is unique and her illness makes our lives distinct.
It was challenging to organize a gathering that would truly feel like a celebration. Many of our friends haven’t seen Mom since her condition began to slide. I felt the need to prepare people for the big changes that have occurred: the wheelchair, the lack of speech, the chronic sleeping. I have come to view these things as normal. But for most people they aren’t normal at all. Guests needed to understand that they would not be visiting the person they knew before.
Despite many logistical challenges, and the stress of making a party right after Christmas, I was happy with the way things turned out. Old friends came to visit, some neighbors brought their children. A few guests we barely knew showed up to help us celebrate. Mom wasn’t too, too alert. But she was aware that the candles and Happy Birthday song were meant for her. One of the sweetest scenes of the evening was our neighbor’s eight-year-old daughter blowing out the candles to help Mom. That was the signal to get out the handkerchiefs.
Given the choice, I’d do it all over again. You could feel so much love for Mom in that room. Even when their words have been erased, people with dementia retain a strange ability to sense the feelings of those around them. Although she was exhausted, Mom went to bed smiling that night. As for me, I was totally fried, but definitely pleased as I surrendered to sleep.
Time, time, time. Caregivers measure it in minutes, hours, days. But for someone with dementia, time is like a broken clock. It’s a concept that no longer seems useful or needed.
I’m the kind of person who has spent decades running around trying to fit just one more thing into already busy days. One consequence of this habit is that I’m often late. There just isn’t enough time in the universe for me to complete the tasks I set for myself and still be punctual. I sincerely regret the number of times I’ve left good friends waiting for me. But when I’m with my mom, I have the opposite problem. Ever busy me finds it nearly impossible to fill time spent alone with her in a satisfying way.
Usually I tell Mom stories. Sometimes she’s lucid enough to laugh or say yes or offer a one syllable comment. But more often she’s only engaged with me for a few minutes before she goes into Sleep mode — that restful state that resembles your car’s neutral gear. How can you use this time to feel like you’re connecting with someone whose reality is so different from your own?
I often play music to get us both tuned into the same frequency. The sound of Chuck Berry or the Everly Brothers will keep her attention for a little while. Now and then she tries to clap and can occasionally get her hands lined up the right way. But after a song or two, she goes back to her netherworld — unless the music is very uplifting. Tunes that keep her involved include “Rockin’ Robin” and “Happy” by Pharrell Williams. “Happy” is so infectious I have seen it revive a room full of dementia patients for the full four minutes it plays. The song has an almost magical ability to make people smile and move.
Good times come and go but there are still many frustrating moments when you want to pull a dementia patient in and they just stay on their distant planet. What do you do to invite your loved one into your world? What tricks do you use to connect with them when the wires are frayed and their glance keeps moving to some far off place?