In-Between Days

The “stairstep decline” is the typical course of dementia’s progression. Especially near the end, there are stretches of relative stability — the flat steps — followed by sudden drops — the steep descents — often triggered by an event such as a fall, illness, hospitalization, or choking episode. Dementia decline is rarely a gentle, continuous slope toward the end; rather, it’s a series of abrupt changes separated by brief plateaus. As the disease advances, the drops come more frequently, and the steps grow steeper and more uneven. All of this makes dementia feel like an emotional rollercoaster, especially in its late stages.

Here’s an example: yesterday, Doug slept sixteen hours and struggled in nearly every way. His caregiver and I worked hard just to keep him clean, safe, and comfortable. But today was completely different — he slept closer to twelve hours, ate well, and seemed more alert, mobile, and peaceful. I even went out and enjoyed tea with a friend. I’m so thankful for the better days, yet the swing from one day to the next is disorienting.

What’s hard is figuring out which day tells the “real” story. Do I plan as if we’ll have more good days like today? Or do I prepare for more tough ones, like yesterday, when I honestly thought we might be nearing the end? It’s such a strange mix of hope and heartbreak — feeling like we’re losing ground one day and being given a small reprieve the next.

I’m beginning to see that both are true. The good days are real. The hard days are real. They’re both part of this stage. The good days remind me that Doug is still here — his warmth, his quiet smile, his spark. The hard days remind me that his body is slowing down, that this is all part of the process of letting go. I’m learning that I don’t have to choose between acceptance and gratitude. They can hold hands, exist together.

Admittedly, practicality and planning have an important role to play right now. As much as my heart leads with emotion, my hands must lead with action. There are decisions to make about equipment, safety, schedules, and care that don’t wait for me to feel ready. It’s not cold or unfeeling to be practical; it’s an act of love. Preparing the house, arranging help, and planning ahead doesn’t mean I’m giving up hope — it means I’m creating a gentler, safer space for both of us. In a season where so much feels uncertain, practicality becomes a quiet kind of compassion.

So, I’m trying to live in the middle, in these in-between days, and hold both truths close; to plan for comfort and safety while still soaking up the light when it breaks through. To let each day be what it is, without rushing it or resisting it. To make peace with feeling unsure — planning and hoping at the same time — which doesn’t come easily or naturally to me. I prefer the world of black and white, where yes and no make sense, not the gray world of maybe and could be, where a shoulder shrug sometimes leads me forward.

Maybe that’s what love looks like right now — taking it one day, one moment at a time. Showing up. Letting gratitude for what’s still here and acceptance of what’s coming walk side by side, hand in hand, as I wobbly stand in this uncertain in-between place with an open heart.

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

Two Falls and a Bed Alarm

Doug’s towering 6’7” frame and rich sports history gave him a natural strength and confidence that shaped his life. He carried himself with assurance, always ready to take on physical challenges with stamina and skill. Whether dominating on the basketball court, perfecting his golf swing, gliding across the water on skis, casting a fishing line, or throwing himself into construction projects, Doug thrived on hard work and achievement. Even the simple act of hauling boxes around the garage—often in pursuit of whatever specific thing I was searching for—became another way he showed both his physical prowess and his willingness to help.

Doug’s physical strength endured through two hip replacements, likely due to a combination of his athletic past and genetics. Remarkably, both surgeries took place after his dementia diagnosis, and each recovery was a testament to his resilience. Though dementia made it harder for him to shake off anesthesia and follow instructions, he was back on his feet with impressive agility in no time.

But dementia’s march has continued and late in the disease, it has taken so much—one of the saddest losses being language. I miss Doug’s voice in ways writing can’t capture. Now, it’s rare to hear more than two words strung together, and the silence where conversation once lived feels vast. The house is quiet, except for music occasionally playing in the background and barking from our dog Romeo at a passing neighbor. In those moments, when Romeo barks, I sometimes fill the stillness with an out loud made-up story about why the neighbor is in their yard. Romeo cocks his head and listens as if he understands.

For a long time, dementia’s grip on Doug’s physical strength was slow. He remained relatively strong, walking unassisted and getting out of bed and to the bathroom on his own at night. I always listened for his nighttime movements, ready to help when needed, believing I caught every time he stirred. But I was wrong.

The first fall happened recently, yanking me from deep sleep with a heavy thud and an unmistakable ugh. Heart pounding, I rushed to the bathroom and found Doug on the floor—shaken but, thankfully, unhurt. Squeezing into the cramped space beside him, I lowered myself to the floor, checking for injuries, asking if anything hurt, and watching his body language in place of the words he could no longer find. My eyes scanned for blood, for broken bones. Nothing.

He was rattled, so we sat there quietly for a while, letting the moment settle. When he finally began to shift, squirming as if ready to stand, I braced myself. With a deep breath and a grand heave-ho, I lifted, grateful that his upper body and legs still held strength despite everything. Together, we got him back on his feet.

The second fall came moments later. After a short walk back to the bedroom, Doug signaled that he still needed to use the bathroom, so I guided him back and positioned him to sit. But without warning, he fell straight back—planking as if he had forgotten how to sit—his head and upper back striking the wall behind the toilet.

I was stunned. I was helping him one moment, and the next, we were both on the floor. This time, I was the one who needed a moment to recover. Miraculously, we were uninjured. And once again, with effort and a deep breath, I got him back on his feet and, eventually, back to bed.

Sleep was out of reach after that—I was wide awake. So, in the stillness of the night, with Doug sleeping soundly, I ordered a bed alarm online, hoping it would do the trick and wake me in time to help him in the future. When it arrived and I set it up, I was surprised by how much better I slept with the alarm engaged. I hadn’t realized just how restless I’d been before—always keeping one ear open, always on alert.

In my naivety—or perhaps my inexperience, or maybe even wishful thinking—I hoped that the destructive effects of the disease, like falls, would somehow bypass us, that Doug’s strength and resilience would make him the exception. But now, I know better. Falls are common for people with dementia, caused by a range of factors that disrupt balance, coordination, and awareness. Preventing falls isn’t as simple as strength alone.

Eventually, dementia impacts the brain’s ability to control movement, leading to unsteady walking. It also hampers the ability to assess risks or judge distances, resulting in miscalculations and missteps. The brain’s visual information processing is impaired, making recognizing stairs, uneven surfaces, or even furniture difficult. Nighttime disorientation is another challenge—confusion in the dark, forgetting where he is, or becoming lost in familiar surroundings. All these things Doug struggles with.

The morning after the falls, Doug had no memory of them at all. Though he scraped his shin and scratched his backside, he wasn’t concerned. I, on the other hand, remember clearly and struggle to shake the growing anxiety over the toll dementia is taking on us. We have plenty of support and skilled caregivers, but none of that changes the painful reality—this disease is unyielding, and watching it strip away the strong, confident, dependable man I love is heartbreaking.

I can’t stop dementia’s relentless march, no matter how much I wish I could. But I can choose how I face it. A few things help: Prayer steadies my heart and fills me with peace. Exercise strengthens my body and clears my mind. Family and friends remind me of life’s many blessings and encourage me to keep going. And even amid struggle, Doug’s gentle, positive spirit remains a gift.

But more than anything, staying present makes the greatest difference—not projecting into an uncertain future or longing for what once was, but embracing each day one day at a time. When I do this, I find the strength to stay grounded, the hope to rise above discouragement, and the joy of simple moments—like Romeo cocking his head as I tell him about the neighbor.

Through it all, God’s grace sustains me. And for that, I am deeply thankful.

Karen

Reflections

I’ve been reflecting on all sorts of things like the time I turned the Stingray bicycle upside down and rested it on the banana seat and handlebars. I spun the pedals quickly with my hands, dropping freshly cut grass onto the spinning tire. The clicking sound of the clothespinned playing card hitting the spokes echoed through the fender as grass shot out the other end. In my mind, I was crafting a gourmet delicacy for the neighborhood. In reality, I was making a mess.

I remember meeting Doug for the first time. He says we had met before, but I don’t recall that. During Winter break from college, I sought him out to ask about chaperoning a youth retreat he was planning. I was 18 years old, feeling like I was 30. He was tall, handsome, and way older than me (22), but most importantly, he was available. Nervous and excited, I eagerly marked the retreat on my Spring calendar. May couldn’t come soon enough.

Our wedding day was beautiful—filled with sunshine, family, and friends. It was the beginning of a new chapter. I was 21.

Like most of my 20s, those newlywed days are a bit of a blur. By the time I was 28, we had three children. Doug loved being a dad. He’d rush home from work to spend evenings on the floor building Lego towers or telling made-up bedtime stories about flying dogs who rescued kids from precarious situations.

Doug’s workshop was the garage. It was his sanctuary, where he handcrafted beautiful furniture as a hobby. Often, he’d sit across the table from me, grab a napkin and a pen, and sketch his next idea with a sparkle in his eye. Lots of wood and dust later, his vision would come to life as a beautiful work of art. He built bed frames, tables big and small, chairs—lots of chairs—shelves, cabinets, and countless other keepsakes. Many of those pieces are still in my home today.

I used to call myself a golf widow. Doug loved golf and had plenty of friends who shared his passion. “A round of golf takes five or six hours,” I’d complain. “You golf when we’d rather have you home.” Despite my protests, his smile always managed to soften my frustration. We had many discussions about it, and eventually, I came to accept his love for the game. Golf even became part of his career. As a caddie for the PGA, he globetrotted. I once asked why he chose caddying over playing. He told me, “A caddie serves the player.” Doug’s humility and desire to serve were qualities we cherished at home, too.

Dementia crept into our lives stealthily. Doug noticed it first on the golf course—he struggled to follow his ball and keep score. I saw it in the kitchen—he’d empty the dishwasher and put dishes in the wrong places. At first, we didn’t talk about it. We laughed it off, justified, defended, and excused it for years.

Eventually, we had to acknowledge it. Doug’s odd behaviors became impossible to ignore. He missed a flight, couldn’t work the TV remote, got a traffic ticket, struggled with woodworking designs, abruptly quit his job, and couldn’t remember the rules of card games. A doctor’s visit became inevitable.

Dementia in someone so young (56) wasn’t where the conversation started. After an MRI, I thought he might have a brain tumor, cancer, or even a stroke—something we could fix, treat, or reverse. But a terminal, life-limiting disease with no cure was not on our radar. We had retirement dreams: traveling, grandchildren, teaching me to golf, sitting on a porch swing, laughing, and growing old together. All of that felt shattered.

Hospice care arrived in our home a few months ago to help me navigate the relentless 10-year march of dementia. Doug’s zest for life was hard to keep up with. It gave him daily energy and long, confident strides. Now, he walks slowly with unsteady steps and sleeps more than he’s awake. I long to hear his voice, to know how he feels and what he thinks. His smile still tugs at my heart, and his eyes still convey his love.

When I hold him, I tightly wrap my arms around him, and I wrap his arms around me. I breathe him in—his scent, his warmth—pressing my cheek against his chest to feel his heartbeat. I want to imprint him into me, to keep a piece of him alive in my soul. Reflection and remembering are my ways to keep him close, even in the silence and stillness of this relentless march. I hold on to the love we’ve shared one day at a time. It keeps me going, as I hope it will for years to come.

Karen

Hospice

The march of dementia continues. Each day seems to introduce a new symptom, a new ache in my heart, pulling Doug further and further away from this temporal home. It’s getting harder to remember him before this devastating disease took hold. Some days, it feels like this is all we have ever known. Some days, I practice remembering.

I knew the day would eventually come when additional care would become necessary. When I turned the calendar from 2023 to 2024, I knew the time was soon; in April, Doug qualified for hospice care.

Hospice is a comfort care medical model. It provides care to the terminally ill patient. It is designed to ensure the patient remains comfortable and pain-free during the final stretch of life. This means that as Doug’s dementia progresses and his body begins to transition and weaken, conventional curative medical interventions such as hospitals, IVs, feeding tubes, etc., will not be the medical care we pursue. Hospice nurses and carers come to the house and keep him comfortable with all symptoms, encouraging quality of life and more good days until the end. This care does not replace me and his caregiver but comes alongside us as an additional resource. Doug is on the early side of qualification; the nurse calls him high functioning; he still walks, feeds himself, and is not incontinent.

More Good Days continues to be the slogan I use in Doug’s care. It’s a catchphrase he and I developed early in the disease to use as a plum line – a summation of what is most important to him when care decisions need to be made. Doug’s desire for more good days is understood by his family, medical professionals, and caregivers. Armed with this objective, we discuss his care and confidently move forward, making the best and honoring choices. We did the same thing for mom. Her catchword was Dignity.

Doug spent many career years as a church pastor. He loved ministry. He loved everything about pastoring except making hospital visits. This was his least favorite responsibility; he avoided it or delegated it to someone else as often as possible. When he did visit, Doug preferred to meet family in the waiting room, the lobby, or even the parking lot instead of at the bedside whenever possible. He described the hospital sounds, smells, sicknesses, language, cafeteria food, injuries, sterileness, equipment, and rules as a strange, primarily unhappy universe. A universe Doug dodged whenever possible.

When first diagnosed with dementia in early 2019, equipped with language and expressible opinions, Doug and I sat down with an Advanced Directive, a legal document crucial for ensuring his healthcare wishes were respected as the disease progressed. Doug was clear – he did not want hospitalization and unnecessary life-prolonging procedures at the end. He wanted more good days of peace and comfort at home. We wrote it out, and that became my charge.

As Doug’s dementia advances, I have spent time preparing (as much as possible) for the next probable turn of events. I have worked alongside his medical team, read up on this and that, joined a support group, and asked enough questions to frustrate any dementia specialist.

I’ve learned a lot, but the main takeaway has been that dementia is unique to each person; it doesn’t play by a consistent set of rules. It is often said, “If you see one person with dementia, you’ve seen one person with dementia.” It is a challenging disease to predict and follow. It can take any track, depending on the day, the person, or the environment. Cancer (which I’ve had), heart failure (which my mom had), and many other diseases are illnesses that run a reasonably predictable course according to the diagnostics, medicines, and tests available. Dementia is not so predictable.

When I called for a hospice screening, I was almost sure Doug would not qualify; he wasn’t bed-bound or not eating (which is where mom was when Hospice stepped in for her; she only lived six more days). Doug’s screening was to learn where he was on the hospice/late stage/end-of-life timeline. I knew Doug needed help with all ADLs and his complete day-to-day survival. I knew he wanted to avoid hospital intervention and live out more good days at home in the end. Still, I did not understand the role of hospice care in all of this at his stage of the disease, and it was time to find out.

The relief I feel having hospice as part of Doug’s care team is palpable. I am no longer the only one reading Doug’s ups and downs, physical changes, and disease progressions – deciding when a doctor’s visit is warranted and worth the work to get him there. With hospice care qualification, we have dementia-informed nurses coming to the house once a week and many other resources available.

But being on Hospice also means Doug is wrapping up his earthly run. He will eventually travel home to his forever home, where every day will be a good day, and God’s eternal love will hold him tight. He will be free from this devastating disease. But for now, one day at a time, Doug is wrapped in my love, and my tears, and my care as I practice remembering things like how his laugh made me laugh even if I didn’t know why he was laughing. It was contagious. His eyes twinkled; he’d throw his head back and show his teeth.

Karen