Everybody Dance Now

Finding gratitude as my parents’ dementia marches on

Today just happens to be my birthday, which I’m not sharing to score birthday wishes, but rather to put a finer point on life as an adult child of parents with dementia.

My parents have not remembered/acknowledged my birthday (or my sister’s, or my sons’) for a few years now. This does not bother me in the slightest. Nor does it disturb my sister. It’s just par for the course – a simple fact of life.

I could choose to be sad or upset by that, but what’s the point? There isn’t a single thing I can do to change it, and if I were to point it out to them, all I would succeed in doing is to make them feel bad.

Life in two-week increments

My sister lives two states and four hours away. Now that mom’s dementia is advancing, we’ve decided that leaving them alone overnight, which we had been able to comfortably do until recently, is no longer safe.

We trade overnight stints, two weeks on, two weeks off. So every two weeks, my sister and her husband travel down to stay with my parents. When they head back home and it’s my turn, I leave my house at approximately 8:45 every night so I can check in with the caregiver before she leaves at 9:00.

Sometimes I stay up and watch some TV with mom; sometimes we’re both tired enough that we move straight to the nightly rituals of turning out lights, ensuring the doors are locked and the toaster is unplugged. (Don’t ask.)

I give dad his nighttime meds. I make sure mom gets to bed. I go upstairs. I read. I catch up on emails or social media; I fall asleep (on that new memory-foam mattress with cooling gel top!) with one ear tuned for the notification that will sound on my phone if mom opens one of the exterior doors during the night. (So far, this is most likely to happen preceding garbage pick-up morning, an event which manages to throw her into the cognitive soup, every single week.)

A couple of times she’s come up in the middle of the night to wake me because she’s worried about dad. He made a noise in his sleep, or he’s having difficulty breathing. She can’t wrap her head around what’s happening to him, even though he’s been on hospice care for nine months. I wonder what it’s going to be like when he really is actively dying instead of on this ridiculously low-angled trajectory towards it.

The silver linings

In the morning, I stick around until the caregiver arrives at 9:00. Meanwhile, I do my yoga, religiously, unimpeded by the things that tend to distract me at home. Afterward, my (amazing, supportive) husband brings me my coffee and hangs out with me, reading at the dining room table while I tackle the Wordle-du-jour. It’s a quiet time we don’t always practice with the same consistency otherwise.

Every two weeks when it’s my sister’s turn, life gets livelier. While mom & dad are still (usually) snoozing peacefully in the early morning, my sister comes up to my house for coffee. (Her husband stays back with mom & dad.)

We’ve created a silly ritual of our own: “morning coffee dance time.” (Put that in place of the “everybody dance now” lyric of the 90’s hit by C+C Music Factory, “Gonna Make You Sweat.” It never fails to crack us up.)

Before mom’s dementia got to this stage, my sister and her husband would usually visit once a month, for three or four days. She’d come for coffee two or three times, but now we have a routine that we genuinely look forward to, at least 11 out of the 14 mornings they’re here. We drink our coffee; discuss alternative plans for different scenarios for mom and dad’s care; talk about her playwriting classes. And when we’re caught up for the day, we dance around my house like a couple of idiots.

We’re closer than we’ve ever been. I’ll take that as my birthday gift any time.