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