A Turn of the Page

My dad finally passed away early this morning, which, of course, causes that same “grielief” we felt when Mom’s time was up a mere six months ago.

His decline was so agonizingly slow, marked by such infinitesimal notches downward. Every time we thought he was making the step that would mark a turn to The End, he would level out, his body continuing to chug along. Time and again, even as his corporeal self withered and the person we suspected was still inside slowly disappeared, that body kept going.

Seven months ago, Tim and I made plans for a long, tropical vacation in early February. Because I was away when Mom passed (my sister left to manage in the immediate aftermath), she and I discussed this vacation after that experience, agreeing that there was No Way He Would Still Be Around By Then.


As the months slowly passed and it seemed that the ground itself might have to rise up to swallow what was left of him before he finally took his leave, I began saying, only slightly jokingly, that it would probably happen while Tim and I were even farther away. We joked about it. But, amazing, indescribably awesome sister that she is, she told me that we had her blessing to stay for the entire trip if it were to happen on her watch.

Lo and behold, here we are. She kept me apprised as he took what marked his final turn earlier this week, and through his exhausting descent over the past few days.

She and her husband are living angels, taking turns being with him, administering his comfort meds every other hour, 24 hours a day; singing to him, stroking his hair or holding his hand. Letting him know he was so loved; what an incredible father he was to two adopted daughters whose lives were so shaped by his quiet guidance and support.

As grueling as this past four years has been, I don’t think I’m speaking just from the emotion of this moment when I say it has also been the most meaningful four years of my life. It has brought my sister and me, who were fairly close before, so much closer. It has made me appreciate my life in ways I might never have, had I not been yanked out of my “normal” and tossed around in the swirling currents of parental dementia.

At a moment when I’m vacillating between grief and relief, between surprising upwellings of tears and smiling at the kindness of friends and family, the umbrella over all of it is my gratitude: to my dad for a list of things that will require a separate writing session, to my sister and her husband, whom I feel with every breath I’m drawing today, and to the Universe itself for putting us through this transformative disease.

Stay tuned – there will be more to come.

Everybody Dance Now

woman in green jacket and gray pants

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.