Seasons

2026… wow!

I never imagined Doug would still be right here beside me in 2026, especially after everything 2025 dished out, but I am so glad he is! Dementia—specifically dementia in a younger, strong, otherwise healthy body—plays by its own set of rules.

My brother texted on New Years Eve. He commented that the last day of the year is a contemplative day for him and in that light he wanted to know how I was doing. How I am doing is not an easy answer. I thought I would bring you along as I answer that question.

I’m learning so much: how to loosen my grip on what I can’t control, how to find peace in this moment, and how to set down my expectations for the next moment, the next day, or the next year.

Right now, Doug’s awake windows are shrinking. He’s sleeping most of the day—about 16 hours on average, and sometimes as many as 20. He is listing to the left, so we’re using a gait belt with handles and pillows to prop and support him. His swallowing, especially with liquids, has slowed significantly. We expect this to progress, and that food will likely be affected before long. His visual processing is also interfering with nearly everything he does, and it shows up most clearly when he’s walking. He can mistake the grain of the hardwood or a patch of shadow for an uncrossable break—like the end of the road or a cliff—so he moves in slow, careful stop-and-starts. But he still prefers walking over the wheelchair.

Taken together, it feels like his nervous system is moving beyond compensation and into conservation—a phase that can linger for a long time, but rarely truly resets.

I imagine 2026 will be a year of pacing myself for uncertainty and deep loss. Fewer transitions for Doug. Less walking over time. Less appetite. More sleep. More quiet presence. Less outward engagement. Care may become simpler and less coordinated in some ways—while the emotional weight of it becomes deeper, more intimate, and harder to carry.

As 2025 came to a close, I could already feel that shift. I can’t summarize it as a single emotion; it’s more like moving through several distinct emotional seasons. My world has narrowed significantly, and I find myself wanting the narrowing. I want to be home alongside Doug more—less bebopping through a calendar of events, and more quiet peace: handholding, prayer, and reflection.

I’m re-learning how to breathe in a different atmosphere—one where time stretches, meaning thins out, and love stays heavy.

One emotional season I’m in right now is suspended time. Days and weeks blur together as life with dementia slows to a snail’s pace and the sun sets early outside. I’m hyper-attuned to small changes, and I feel genuine relief when things stabilize. And then I lie awake in the dark—when the house is sleeping—afraid they won’t stabilize. At the very same time, I feel guilty for wishing time would move on.

I’m surviving this season by lowering my time horizon. It helps when I shrink it down to morning, afternoon, and evening.

A second emotional season I’m living in is the season of two lives at once: the caregiving reality, and the inner-life reality that still remembers who I was before all of this. There’s a strange numbness threaded with sharp tenderness—moments of laughter followed by grief and a deep breath. I catch myself wanting to plan for “after,” even though I don’t know when “after” is. And then, secretly, hoping “after” never comes because somehow, this has all been a crazy dream I’ll wake up from.

But then reality returns in the most ordinary ways: a trip to the bathroom, a spoonful of applesauce with crushed medication carefully tucked on top, or the quiet, necessary work of repositioning his shoulders and hips—one more pillow, then another.

The third emotional season I’m in is the season of quiet detachment. It scares me a bit because I don’t know it well, and at first it can feel like I’m “checking out.” But I’m learning it isn’t abandonment—it’s endurance. It’s a way my mind and body stay grounded for the long haul. This season feels like less panic, less urgency, less reacting, and more watching. Love doesn’t feel loud right now. It feels steady. Quiet.

The way I know it, love has usually been expressed through interaction, conversation, exchange, back-and-forth. This is not that. This is less of all those things and more simply being. That must be why this season unnerves me: I’m more comfortable as a doer than I am just being.

Maybe it’s time for presence to replace effort.

That doesn’t mean I stop trying, or that I give less to Doug’s care. It means the effort I offer shifts—less doing for him, more being with him. Speaking less. Finding contentment in the love between us that doesn’t require words. Lingering a little longer when we hold hands, when I sit close, and letting myself feel the strange truth that we are closer and farther at the same time.

I know where all of this leads. I know how this story ends. And these emotional seasons give me permission to name what’s true: caregiving—loving someone through this—is complex and beautiful and full of learning…and it is also relentlessly hard. I can love Doug deeply and still want caregiving to end, especially this late in the game. Those are not opposites. They can live together. And meaning in this quiet season of presence can be small. I don’t have to be “making memories” or “cherishing every moment” in a grand way this new year. I can find meaning in quieter measures: he ate, he rested, he was safe; I didn’t rush him; and I didn’t abandon myself today.

At the end of 2026, I want to be able to say: I didn’t miss it. I was there. I did my best. I took care of myself. I noticed the meaning that was available. I loved Doug—and I showed him that love every day, one day at a time.

And that’s enough.

Karen