Journal entry: January 15, 2022
It’s nearly one o’clock on a Saturday, and Fred still sleeps. “It’s nine o’clock on a Saturday . . . ” immediately plays from Piano Man by Billy Joel. Okay, so my mind wanders!
Yesterday was a good day. I’ve learned to rest on his “sleeping days,” to take them as a gift.
Just a few days ago, we slow-danced. Bobbie Jo brought in a stack of vinyl records, and Nat King Cole’s voice filled the sitting room. I leaned down, and Fred wrapped his arms around me as I gently pulled him to his feet. His head rested on my shoulder, and we held onto each other, swaying in place.
For just a few precious moments, time had folded in on itself, and we were the only two people in the room.
Only a month ago, he could still stand on his own, and we would dance longer. In November, we even did the Carolina Shag to the Temptations – no special occasion, just heard the beat, and let it carry us. Sweet, ordinary moments became our last dances.
These days, our life together is measured differently. We were inseparable in our early years, which were full of energy, desire, and life. Now our rhythm is built around when he wakes, how strong he feels, and the careful transfer from hospital bed to recliner, and back again. Still inseparable.
Once he’s settled in the sitting room, I prepare his meal. I feed him in small portions to the familiar soundtrack of Perry Mason reruns.
Afterwards, we watch the show together – sometimes holding hands. Sometimes we sit quietly. His words now come rarely, in fragments. Reading his body language has become vital. It helps to have had 39 years together.
When I need rest, I carry his monitor in my pocket, or prop it on the bed beside me, always keeping him in sight.
Evening routines come sooner each week because he fades earlier. Ben and Jo guide him to his hospital bed, each on either side of him. I am just not strong enough, even though he now weighs only 115 pounds. Once there, he is lifted onto the bed, and I administer his medication. I get assistance moving him to what we think is the most comfortable position for him to sleep. I kiss him good night and linger by his side for a few minutes. He’s already in slumber land. With his monitor in my pocket, I can tend to the rest of our lives in readiness for the next day.
I am grateful for small mercies. Ashley, our Health Aide, gives me three precious hours of breathing space Monday through Thursday. Those hours of self-care feel like a miracle!
I’ve always liked lists, so I keep a daily log – Fred’s meals, medications, my tasks, and other notes. It’s like the lists I used to leave him three years ago when he could still read. (This was before his divine healing of his first dementia.) I would tell him how to warm his breakfast in the microwave, that his lunch was labeled for him in the fridge, where I was, how long I expected to be gone, and that I would call him as I started home. Both lists have become a record of our life, a breadcrumb trail through days that often blur together.
About a week ago, I turned a corner. Since Fred’s diagnosis in 2016, I’ve been waiting for this moment: full acceptance.
I have joined an online Caregiver support group. One of the members who wrote, “Alzheimer’s is a fatal disease,” brought it all into focus. The family and I had contacted Hospice and were waiting until they could get us on the schedule to assess him. Both those things brought it into focus for me. Hope for recovery still simmers underneath, but it is just a glimmer.
The realization that My Fred, the man I’ve loved for over three decades, will not return to me whole is pervasive. He’s still with me in body, but part of him has already moved somewhere I cannot follow – perhaps a gentler place, waiting on his body to release him.
And so, I understand my role: guardian of the man I love. Caretaker. Nurturer. Faithful companion until this journey ends, not just for him, but also for me.
It strikes me how fitting it is that we began with a dance.
I remember that night. It was in a nightclub near the Air Guard base. After we finished for the day, we went with our separate cliques to unwind, ending up at the same place. We hadn’t arrived together; actually, we had never even been introduced. I felt a presence at my table and looked up. Without words, he looked at me, held out his hand, and we danced, slowly.
And in so many ways, we are still dancing.
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As always, I’m grateful you stopped by. Time is precious, and I value yours. From time to time, I’ll share journal entries—most are true to the original words, just shaped a bit so they flow more easily.
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If you’d like to see more of other reflections in a different format, you can visit me here: youtube.com/@grittygranny. I post Shorts twice a week.
– Gritty Granny
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