Rocks in My Pockets

This summer of 2025 has been a challenging season. I feel tired and am learning, sometimes slowly, how to take better care of myself.

At the end of June, Doug came down with a chest cold. I actually caught it first—just a head cold in my case. Thankfully, I had plenty of Kleenex on hand. It followed the usual pattern: two days of misery, then several more of sneezing and sniffling before it finally passed.

Doug, unfortunately, didn’t fare as well.

At this stage of dementia, a weakened immune system shows up in countless ways. Even mild allergies can trigger a rash. Scrapes and bruises linger before healing. And what is a brief, minor cold for me can linger in him, wearing him down. He needs much more rest than before, and because he doesn’t hydrate on his own, dehydration can sneak up quickly.

When Doug caught my cold, it went straight to his lungs. What started as a simple upper respiratory irritation quickly settled deeper, leading to fluid in his right lung and a deep, wet cough. We decided to give him antibiotics, which may or may not have helped, but they most certainly unleashed the chaos of a microbiome storm, which finally, after six long weeks (and a lot of laundry), is now under control.

Today, I’m relieved to say Doug is much better. As I write this, he is sitting comfortably in his recliner, a blanket tucked over his legs to ward off the cool air conditioning. He just enjoyed a good lunch, is watching a final round of golf on TV, and even completed the “challenge” of a grueling five-piece puzzle.

Two years ago, I began meeting with a therapist to help me navigate grief and overwhelm. It has been a game-changer for my mental health. Caregiving dementia—even with support—is relentless and consuming. Sometimes I carry it with grace; other times, exhaustion tips me into irritation and impatience. I’m learning to recognize that the difference often comes down to how rested and replenished I feel.

I am also slowly learning to prioritize and set boundaries. I’m struck by the gap between what I think I can manage and what I’m actually able to do. Too often, I push past my limits without realizing it—until I feel like I’m drowning in the weight of being needed, with too little energy left to give. I wonder sometimes if I’ll ever feel light, spontaneous, and capable again, or if this heaviness, like quicksand pulling at my feet, has become my new normal.

My therapist described my reality as walking around with rocks in my pockets. Each rock represents a responsibility, a stressor, or the weight of caregiving that I carry every day. She encourages me to notice how heavy my pockets already are, to resist adding more, and to guard against letting others add to my load. It’s such a simple image, yet it gives me language for what I feel when I’m overwhelmed and permission to set boundaries before the weight pulls me under.

Looking back on this summer, and on the long, uneven road of dementia care, I see both the heaviness and the unexpected mercies woven through it. Doug’s illness was another reminder of how fragile he is at this stage—how quickly a cold can tip into something more threatening—and also of how resilient he can be, inching his way back to stability and comfort. My own path mirrors his in some ways: weariness and overwhelm pulling me down, yet at the same time, I am charitably steadied by new practices and boundaries, by resting when I can manage it, and by slowly learning to name and release the rocks I cannot carry.

I don’t know if lightness and spontaneity will ever return in the way I long for, or if this new rhythm is simply the shape of my life now. But I do know this: every time I choose to pause, to care for Doug with kindness, and to guard a small margin of care for myself, it is its own quiet act of strength. Perhaps that is what sustains me—not the absence of burden, but the grace to keep walking with the rocks I must carry, one day at a time. And maybe, for now, that is enough.

Karen

Getting Real… Incontinence

How old were you when you learned to use the toilet and understand the need for privacy? Eighteen months? Two years old? Most likely, it was before your third birthday. Using the bathroom becomes such an automatic part of daily life that we rarely think about it—until something changes. Yet, the process of maintaining lavatory hygiene and safety is surprisingly complex, physiologically and emotionally. Watching those abilities unravel in an adult is heartbreaking.

Incontinence is a common challenge in dementia and elder care. My mom lived with complete incontinence for several years before she passed. While she often made it to the bathroom in time, there were instances when she didn’t or struggled once she got there. She wore incontinence products day and night, and eventually, we covered her favorite chairs and mattress with washable pads—affectionately dubbed “Grammy Pads.”

Mom had many accidents. Some we noticed right away, others we discovered later. As her caregiver in her final years, managing her incontinence was a continuous responsibility, growing more demanding as she became increasingly frail. It was hard work, both physically and emotionally. And it was part of caring for her with dignity and love.

Doug has remained mostly continent so far, which I’m incredibly grateful for, as incontinence is considerably more common at this late stage of dementia. He has occasional leaks and mishaps that require extra laundry and cleanups, but not frequently enough to necessitate full-time incontinence products.

During the day, his caregiver and I follow a bathroom schedule, taking him to the toilet and assisting him in sitting to ensure success. A bed alarm alerts me at night when he stirs, signaling that he needs to get up. I wake up with him and guide him to the bathroom. It’s a very tender time. I am glad to do it. Getting him up and reducing his liquid intake in the evening hours have effectively prevented accidents—until recently.

Keeping Doug clean and dry requires just as much effort as managing full-time incontinence but in a different way. With complete incontinence, as I experienced with my mom, care revolves around using and changing incontinence products, strategically placing protective pads, and frequently doing laundry. With Doug, the focus has been on timing—getting him to the toilet when he needs to go (or when the schedule says so) and ensuring he sits safely for cleanliness and comfort. So far, this approach has helped minimize his incontinence.

However, Grammy Pads have once again found a place in our home, carefully positioned on the furniture Doug uses most—just in case. His ability to stay dry could suddenly change. So, I focus on preserving and supporting his continence as long as possible. That’s the core of my caregiving approach: prioritizing prevention instead of reacting after the fact.

As I write this, night-time accidents are becoming more frequent, most often in the bathroom itself. With the help of the bed alarm, we usually manage to get there in time but holding it until he’s undressed and seated has become another matter. Perhaps just seeing the toilet triggers the release. The look on his face tells me he is bothered that his shrinking brain is hijacking his long-ago toddler training. My heart aches for him while I clean him up and settle him back into bed. The bedside commode is imminent.

Dementia caregiving is a journey of continually letting go of things that once felt essential. With each decision, I weigh what truly matters against what I long for. One thing I know for certain—Doug would never choose this for himself. So, I do my best to set aside frustration, resist the urge to push my agenda on him or sigh in exasperation, and instead seek to treasure him as my sweet, gentle-spirited Doug.

I feel time slipping away. I won’t pretend I’m not weary. The truth is, I’m exhausted. I miss Doug and the life we once shared—every single day. And yet, I still have pieces of him. He still smiles, sometimes laughs, and always tries his best. I still snuggle close, cradle his face in my hands, wrap him in hugs, and run my fingers through his hair.

Every time I decide to be grateful, seeing new things to be grateful for becomes easier. Same with love, acceptance, and calm. So, despite the heartache of all that is unraveling—each new dementia symptom, every decline, and every demand placed upon me, I try to face my fatigue and angst, quiet my longing for what was, and embrace what remains with acceptance, calm, and love one day at a time. Someday, these will be the moments I long for.

Karen

Ambiguous Grief

I don’t know what I expected when Doug and I had babies. I probably expected Hollywood somehow – sweetness, baby powder, and rosy cheeks like the picture on the Gerber baby food jars or the babies painted by Norman Rockwell. Maybe I expected a walking, talking, young, well-behaved fashion statement with cute, clean clothes, polished shoes, and manicured hair. Instead, I got an entirely dependent miniature human who needed me for everything, cried, even screamed sometimes, and didn’t stay baby powder clean independently. I remember being gut-level tired and entirely in love.

I saw a picture of me taken recently and was surprised by my haggard look. The etched wrinkles around my eyes seemed stamped in place, and my unreadable face had a pasted smile and a vacant look. While analyzing the photo, I wanted to reach through the snapshot and hug the lady in the picture. I instantly knew her story and understood the sheltered sorrow she carries.

Most days, tired dwells concealed, unshakable, heavy, and familiar like summer humidity before rain. I smile and show up, shower and greet, work and visit, all with the undercurrent of weighted shoulders and wide brick feet doing their best to hold me upright. The simple things, lack of sleep, being too busy with no break, or the absence of self-care are not the issue. This bottomless tiredness is not that easily solved.

I see an excellent therapist and participate in more than one support group. I laugh with friends and join them for tea regularly. I have the best caregiver for Doug I could ask for, who comes five days a week. I won the lottery with a supportive family, and Doug is peaceful and kind. And yet this persistent fatigue hums on a wavelength deeper than sleeplessness, new motherhood, or a 60-hour workweek.

This fatigue breeds weariness, and it holds hands with heartbreak. Grief. Love. Ambiguity. It tenaciously penetrates my essence with an obscure complexity, vibrating through my daily routine – with friends, alone in the car, buying groceries, working. When I lead Doug to the bathroom and assist him there. As I help him shower, dress, and brush his teeth. In his apathy and as he whistles a tune. When he wanders lost through the house and stands looking at the wall of family pictures with a hollow gaze. On outings: slow, unsteady, and uncomfortable. When he’s silent and when he laughs. In his inability to know me and his overall separateness – It is my quiet, constant companion, this cauldron of deep tiredness lacking clarity and closure.

I research. I want to know what I’m getting into, so I dig in and learn. Following Doug’s dementia diagnosis, I got busy gathering information and preparing for what could come. I learned about the physical help Doug might eventually need and the potential equipment required. I listened to dementia journey stories, connected with professionals, and read peer-reviewed articles. I imagined what it would feel like when he no longer recognized me as his wife or our kids as his children. I even considered Doug dying before me and the sorrow I might live with in the end. But I did not anticipate this part of the dementia journey, the shroud of grief I’d wear even as Doug lives, breathes, laughs, and still gives the best hugs. I missed ambiguous grief – complicated and often misunderstood – in my research, or I denied its capacity to get to me.

Francis Weller, the author of The Wild Edge of Sorrow, writes, “My grief says that I dared to love, that I allowed another to enter the very core of my being and find a home in my heart.” Weller also calls grief and love sisters. I agree. It feels like that – connected by DNA. Grief is the price we pay for love. Doug and I have known love, so it makes sense that grief would be a part of this cruel, slow, unremitting, piece-by-piece separation.

I am working on reframing, accepting, and reconciling this unique type of heartbreak that lacks the closure and clarity typically associated with loss. It’s a gradual process that takes effort. I’m learning to turn towards the ache with compassion and give it a name and a rocker on the front porch. Hopefully, one day, the complexity and uncertainty that comes with this shoulder-hugging weighted blanket, born from love, called ambiguous grief, won’t feel so taxing. Hopefully, it will mature into healing, growth, and gratitude as I continue to walk with it one day at a time.

Karen