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

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

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

Paper Boat Feelings

If you wake up feeling fragile, remember that God is not, and then trust Him to be everything you need today. ~C.S. Lewis

When giving birth to my first, well into the transition stage of labor, the final stage before the baby’s birth, I exclaimed to the attending nurse, “Give me drugs; I can’t do this anymore!” It wasn’t long after my undoing; we were saying hello to our daughter, completely smitten, the distress behind me. I now understand the luxury of epidurals and that my desperate demand is a very common plea bargain in the final moments before delivery. I’ve been told that when the mom-to-be exclaims she can’t do it anymore, the nurses know delivery is near.

I see a therapist. It is by far the best piece of self-care I’ve invested in. Better than a warm bath, a scented candle, or time by myself. We have talked many times as I traverse this undulated dementia terrain about my feelings and my response to them. We have discussed how feelings, like paper boats, float past my view, valid and sincere, delicate and fleeting, big and small, drifting along with the current, vulnerable to the winds and waves of my experiences. Feelings are tricky. They are true, neither correct nor incorrect, good nor bad. They are valid as personal, subjective experiences that reflect my inner state at any moment. They just are and can change on a whim.

I am learning that recognizing and accepting my feelings helps me better understand myself and navigate my emotions in a healthier way. They don’t need to be justified (although I do that often); they need to be acknowledged. I am less fragile when I am patient with my feelings, allowing them to be as they are, void of harsh judgment, self-criticism, or correction, and laced with encouragement and tolerance. Harsh anything, on top of impatience, often renders me fragile. Very fragile.

Our summer ended with a family camp beach trip. There were 19 of us under one roof for three sleeps. At the risk of sounding Instagramish – better than life – it was magical in every way. Doug’s caregiver came, and Doug did well. The weather was perfect, the sunsets glowed, and we all marinated in each other’s company. Driving home, I spoke my momentary feelings out loud, “If Doug stays just like this forever,” I said, “I could handle it.” I wanted to push STOP on his dementia progression, accept where he was at that moment, and end my unstable emotions around further advancement. Or, more succinctly, “I want my Doug back; I don’t want to do this anymore.”

Robert Frost said, “The only way out is through,” which is undoubtedly true when delivering a baby, but I don’t think that is what Frost had in mind. The quote reflects a profound truth about facing challenges and emotions head-on. Rather than avoiding or bypassing difficulties, it suggests that the path to resolution or growth lies in confronting and moving through them. I get it. I want resolution and growth as much as the next guy, but the truth is, I prefer to go around. The path through is hard, unpredictable, and often way. Too. Long.

In 2015 I cocked my head like a confused floppy-eared German Shepard puppy at something odd and unusual Doug did. I had no idea it was the beginning of many cocked-head experiences to come. Dementia is stealth-like, especially early on in someone as young as Doug. His brain was masterful at compensating, rerouting, and deflecting. A long four years later, filled with frequent German Shephard head tilts and assorted medical appointments, we received his official dementia diagnosis. The diagnosing physician said Doug was past the mild stage and into the moderate stage of the FTD disease. Today, all these years later, he’s progressing through the late stage, the final stage of the disease. Dementia is no longer stealth-like; it is thoroughly hands-on – obvious, relentless, harsh, and impatient in its proficiency – bluntly embezzling Doug’s life and tossing my paper boat feelings to the wind.

I am the fragile kind of tired.

Sometimes, I imagine how I might feel when I have come out the other side of this dementia experience after going through it. I imagine no longer feeling fragile-tired and experiencing resolution and growth. Then I hesitate because the only way out is through, and Doug’s through will be separate from mine. He will be complete, and I will be left to traverse unfamiliar Out and Through terrain towards further resolution and uninvited growth, holding my paper boat feelings alone. Still preferring to go around.

Feelings are tricky, and so are imaginations. Acknowledging them and staying in the now simplifies them, and so does rest and God. I know one thing for sure: God is not fragile. Even as I hold my vulnerable, wind-beaten, fragile paper boat feelings that threaten my inner peace, He is the source of peace, and I can trust Him to be everything I need now, today, and every day, one day at a time.

Karen

Sleep

I have not known Doug as a sleeper. Doug’s most creative ideas always came after sunset. He revved up as the day simmered down. When we were newly married, Doug earned a living working a graveyard shift, came home to catch a few winks, and then volunteered to hang out with the church youth group kids, leading them from one adventure to the next for the rest of the day and into the evening. I used to tell him, as convincingly as possible, “Night times are for sleeping.” I don’t think he believed me. He responded, “Sleep is overrated.”

Sleep interrupted Doug’s enthusiasm for life. There was so much more to do, be, and see. He had a new idea to pursue and more friends to visit. There were places to travel and wood projects to build. Doug was excited about adventuring, exploring, and doing. Naps were nonexistent except for the few times he was sick or pulled an all-nighter with a bunch of teenagers at camp. It was as if sleep’s necessity slowed him down and shortened his 24-hour window of opportunity.

That has all changed. Advanced dementia has worn a deep path of sleep into Doug’s 24-hour routine. Earlier in the disease, the concept of sleep confused him and me. He was awake a lot, even when most of the city was asleep. We transitioned through layers of anxious nighttimes and wide-eyed daytimes. I eventually added a twin bed next to our king bed so I could rest. I slept there (sort of) while Doug wrestled his way through the dark. We lived tired. Ultimately, the anti-anxiety medication helped, and so did the sleeping pill his neurologist prescribed for him. Doug’s medication has been adjusted many times as the disease demands it – stealing sleep and filling the void with anxiety along the grueling process of dementia transitions. The twin next to the king is still my bed.

As Doug’s brain loses volume and strength, his waning willpower to remain awake is no match for his increased need for sleep. Sleep now dominates. His nights can still be fidgety and occasionally restless, but generally, he sleeps 10 hours, even with the nodding naps he takes, complete with snoring and twitching, throughout the day. It is not unusual for Doug to tally 4 or 5 hours of napping daily, especially after considerable activity. He sits on the oversized, comfy couch or reclines back in his “Big Chair,” closes his eyes, and nods off, like he is doing now as I write this.

It is a slow and quiet existence—nothing like before. Spontaneity, independence, and sparkle are in the past. Doug uses energy to function his physical being and little else. It is hard to watch. I miss him. I think he misses him. He still walks without assistance, very slowly and unsteady; stairs are a big challenge. He still feeds himself in a measured and clunky way; fingers are easier than utensils. He still whistles when music plays but is otherwise very quiet. He still knows his right and left and no longer dresses or bathes himself. He still loves a good foot rub and struggles with skin breakdown, necessitating special creams and medication. It all requires his complete focus and directed energy, so he sleeps to recharge and try again later.

I know Doug’s “laters” are fewer as the disease takes its toll and his sleeping becomes more and more frequent. Fun and adventure were at his core when he was healthy, leaving sleep for later. That has flipped. I’m sure if he could, he would tell you that sleep is no longer overrated. It has become the one ingredient that makes his 24-hour opportunity possible and is the very thing that will eventually crowd everything else out.

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

The Human Experience

I was recently greeted with an email from my doctor stating that my mammogram was abnormal. Being a breast cancer survivor of an aggressive cancer nobody wants and some die from, I was knocked off my center. Abnormal. What does that mean exactly? I know what it meant before. I took a deep breath, reread the email slowly, and noticed my doctor had ordered additional testing. I called immediately and added “additional testing” to my calendar.

During cancer treatments and soon after they ended, ten years ago now, I fretted that any little ache or pain, twinge, or pang meant a metastasis. As a fresh survivor, learning to re-enter the land of the unincumbered after walking the tightrope between treatment and terminal, I struggled to find ordinary, where my temperamental internal magnet repelled fear instead of attracting it.

Red and Green decorated my house with the anticipation of Christmas and the promise of the New Year. I sat in the twinkling lights of the artificial Christmas tree with a nervous tummy, wondering how I would take care of Doug’s dwindling resources and manage cancer again. I wanted to stop time, reverse it, replay less burdened days when Doug was stout, and I was infatuated. Hot tears stung as fear took hold.

I called my kids, one at a time, and let them in on my secret. Doug did not know, and I did not want him to know. Managing his heightened anxiety, or worse, his indifference at hearing of a possible second cancer, felt daunting. Mustering the strength required to put it on repeat, again and again, to accommodate Doug’s shrinking brain’s inability to hold new information felt impossible.

Each test warranted an additional test until a biopsy was done and the real waiting began. The burden of news hung on me like a weighted blanket draping from my shoulders. Waiting is exhausting. Dying is exhausting, even if it is just in my imagination. When the results were in, an email alerted me, and my finger hovered over the OPEN button with a slight tremor of complete terror. I gave myself the Pep talk; you can do it and clicked OPEN.

Fibroadenoma, in other words, benign! Grateful.

It didn’t take long for me, after realizing a benign diagnosis, to get back to normal – whatever that is. I got busy packing up Christmas and redecorating in any color other than red and green. I lifted a glass to Happy New Year and reflected on my good fortune.

Turning the page into January suddenly felt lightweight, welcomed, and more human. Not that a cancer diagnosis would render me less human, but the entire experience – cancer, no cancer, and the wait in between – accentuated how frail human existence is with no immunity from infirmity and death. I didn’t want to think about that, at least not with me as the target. It’s easier to live in the illusion of strength and long life, ignoring the reality that our human existence is as fragile as a soap bubble. We live on the razor’s edge between life and death. And we hustle, we strive, we breathe, and laugh and love, with dreams and expectations for tomorrow. It takes guts to live here, between anticipation and completion. The wonder is that tomorrow shows up as today, and we get to try again, at least, most of us do.

I used to set goals and objectives and put them all out on 3×5 cards that I could carry around and memorize. I don’t do that as much anymore. The magical thinking in my goal-setting sessions harvested goal options like they were produce offerings on display at the grocery store -that one there looks good, oh that one could work, hmmm, I think that one will do the trick – and separated my life into neat categorical logical pieces that fortified the illusion that I was in control.

Life is less sequential and chronological these days. Months, days, and minutes are elastic and loose, less ridged, except for the pill box reminder and the dog’s feeding schedule. Closing out last year by surviving abnormal with news from a biopsy, watching Doug’s frailty as he slowly loses his footing on this earth, needing my help more and more, and navigating into a new year that will likely introduce Hospice is sobering. Unfastening. Real.

We are often marked by experiences we do not pick, tragic and beautiful. Being present in the whole human experience allows all the pieces of being human – picked and unpicked – to exist without controlling or exiling any single piece. Doug’s silent, slow, fading form reminds me every day that this time right now is true. In all its frailty, trials, and uncertainty, this loose, unfastened moment is beauty and holiness and standing alongside each other as we peacefully and graciously walk towards Home one day at a time.

Karen

Walking With a Limp

When Doug was in his adult prime, feeling good, exercising often, eating healthy, working a job he loved, and parenting three kids, our family went on a beach trip and camped in a campground. Because of Doug’s joking ways and overall whimsical personality, I thought he was kidding when he started walking with a limp. I did not see him fall, twist, or bend over funny; he just started limping and complaining. Doug rarely complained, so I figured maybe he wasn’t faking, maybe he hurt something, but really, how bad could it be? Doug didn’t even remember the moment of injury; he just had a limp, and he became more limpy the longer we camped.

As it turned out, Doug had injured his knee. The repair required surgery and a Carticel procedure, keeping him from weight-bearing for a very long eight weeks. At the diagnostic appointment, Doug gave me that humorless look that said, “See, I told you! I wasn’t faking or kidding!” I felt guilty for teasing him and pretending I also had a limp while camping. Crutches became his get-around tool. He became proficient on them even in our house with many stairs. Doug considered the crutches his helpful upper-body workout companions. The guy was buff!

With dementia, Doug does not kid around anymore. Kidding around requires high executive functioning, which his dementia has slaughtered. He is quiet, occasionally speaking a one-word sentence or word-salad gibberish. I have had to become proficient at reading his body language to interpret his needs, much like a mom does with a toddler who has not yet developed language. I watch Doug’s ways, his antics; I look for a furrowed brow or a smile, listen for a cough or a sigh, notice excessive sleeping or pointless pacing, and sometimes I even watch for a limp.

The brain oversees everything the human body does. Everything. Doug’s brain is literally shrinking, and his abilities are dwindling daily. Yesterday he fell. My strong, active, athletic husband fell to the ground in a completely empty room for apparently no reason. The doctors he sees, and all the online material I have absorbed have warned me that falling late in the disease is a thing. Doug’s doctor has been calling him a fall risk for the better part of a year. We have a handicapped placard for the car, and I hold his hand when we are out and about, but somehow, in my denial and wishful thinking, I thought this part of the disease might skip us.

Doug was shaken. I was stunned. He was not badly injured, just a bruised tailbone, I think. I helped him to his hands and knees and eventually up. He doesn’t remember it. I can’t forget it. I have rolled up the rug in the entry, the throw rug in the bathroom, and the rug in the dining room. Any potential trip hazard is removed except for my hurting heart. I am tripping over my feelings. My sweet, strong, capable husband is leaving me piece by piece, and I am an onlooker. Each digression in dementia leaves me feeling vacant, almost hollow. I miss him deeply, yet he sits next to me as I write this.

Most days, I handle my emotions stoically and succinctly. I control them and bury them in busyness and grandbabies and hobbies, or I simply am with Doug where he is without engaging in messy emotions. But today, my feelings and struggles, wishes, and laments are the boss of me. Emotionally, I am walking with a limp. A limp I fear will never go away. A limp threatening to become a part of my forever self, changing how I interact with the world and exposing the road I have traveled.

People with good intentions tell me to take care of myself. I was told that self-care is building a life I don’t regularly want to escape from. Honestly, I have to simmer on that a little longer. Many days, escaping feels like a healthy alternative. There is so much brokenness in dementia. Doug is clearly broken. I am undoubtedly broken. Our relationship is broken in that it is different than it’s ever been – than we ever dreamed. Self-care or taking care is slithery. Easy and trendy to say, complicated to do.

Kintsukuroi is a Japanese art form. The artist takes broken pottery and repairs it using gold. It’s quite beautiful. Look it up. The artistic premise is something becomes more beautiful for having been broken. Is that true in life, also? Can the strewn fragments of my brokenness be patched together more beautifully than before? It’s hard to imagine.

I want to believe that Kintsukuroi of the heart is possible. I want to think that all things can be made new within God’s hand. I want to believe I have been branded with this emotional limp of ambiguous loss for a reason. When things make sense and fit into some sort of an intentional, reasonable plan I can control, it doesn’t hurt so bad. I want it to make sense. But that’s not today in this one-day-at-a-time journey. Today, it doesn’t make sense, and I hurt. I’m sad. I fear the future decline of the disease, and I miss my strong, capable Doug.

When Dementia Surprises You

Four kids. That’s a lot. A lot of diaper changing, first steps, bottle warming, tooth fairy visits, hand-me-downs, groceries, and parent-teacher conferences. Doug is number two of four. There were four in an eight-year spread – girl, boy, girl, boy.

I was born in the same hospital, grew up in the same town, and was pictured as an awkward tween in the same church family directory as Doug. I knew Doug’s younger sister and brother before I knew him. I married Doug when I was a baby, 21. We share an entrenched history. Some days his family and my family get mashed together in my memory, brothers and sisters, nieces and nephews, all one, no in-laws, one tribe.

As a family tribe, we have shared weddings, birthdays, memorial services, days at the lake, laughs, tears, bedside vigils, special moments, and less-than-special moments. Doug’s dad was my dad’s golfing buddy. My dad was Doug’s mom’s and brother’s physician. My brother’s backyard hosted Doug’s sister’s wedding, and I could go on and on. We are blended and broken and loved.

Dementia is stealing Doug’s awareness in so many ways – he’s confused by his reflection in the mirror, doesn’t always know reality from fiction, loses all details of the moment a moment later, requires hands-on assistance with all ADLs, and rarely speaks (often when he does, it’s a confused word salad he thinks makes sense) – but through it all, he still knows the family.

Recently I got a bad news phone call. Doug’s older sister, Shellie, had a stroke. She was on life support. Please come. This is never news you’re ready for. My heart sank as I sucked in a deep breath. I told Doug. His countenance fell, and he shook his head, then whistled to the Frank Sinatra tune in the background.

I started making arrangements to go. A four-hour drive – Doug’s brother would ride with me, and his younger sister would fly and meet us there. There was the hotel accommodation, food considerations, our nephew with the weight of the world on his shoulders, and the gathering to make life support decisions and possibly say goodbye. I reasoned that dementia would be too much to manage, ICU, hotel room, strange places, strange food, strange people, no routine, repeated explanations, and long car rides. The aversion list was long, and including dementia felt crushing. I decided Doug would stay home. I arranged his day and overnight care. Done.

The phone rang. It was my son. He said in summary, “Mom, Shellie is not your sister. She is Dad’s sister, and you need to honor Dad and take him…”

Dementia is very complicated. Not just in the subtraction of ability but also in the addition of opinions, best practices, and in this case, my poor judgment. My son was right. Shellie was my inherited sister, but she was absolutely Doug’s blood. My husband needed the honor and the dignity of being included and seen as a brother, not solely as someone with advanced dementia losses. Was taking him more work for me? Unquestionably yes. But I wasn’t alone in his care. I talked with Doug’s siblings, and collectively, we watched after him as a family.

In reflection, we all agree if Doug hadn’t been there, it would have felt hollow, incomplete. He did surprisingly well. Don’t misunderstand me; dementia was in tow the entire time. He talked to himself in the mirror, needed coaxing to get in and out of the elevators, and required assistance in the public restrooms and eating at restaurants. He walked slowly with an unsteady gait everywhere we went; he was told and retold information; I oversaw all ADLs, including his nighttime bathroom needs, changing his clothes, and swapping his shoes to the correct feet. But all that is part of what made the experience beautiful. We were family together, broken and whole.

Doug is known for one-liners that he effortlessly inserted into conversations to lighten the mood or drive home a point. They were often sarcastic and sometimes poignant. It is a Creasey trait. His brother has the same gift. Dementia has unfairly stolen these timely dialogue quips from Doug’s communications. I hear them so infrequently now that it was surprising when he dropped a perfectly timed one-liner into a remembrance moment proving he was present even when silent. Again and again, it was clear we would have missed his presence if I had kept him home. I am thankful he came.

The merging of pain and beauty abbreviates our time together. Summarizing the experience in a simple blog is impossible. Tragically Shellie passed away. We said our goodbyes and supported each other through the heartbreak. Sadness, pain, beauty, and gratitude all profoundly blended, leaving me spiritually reflective and quietly comforted.

Doug knows his sister is gone. He says she went Home. He thoroughly believes he will see her again and the other family who have journeyed “home to Eternity” before us. Doug has hope that moves me, a deep faith, and unconditional love for his family. We experienced this together; our little tribe, along with dementia and its many complexities, united around Shellie.

Sometimes I get tired and less compassionate dealing with brain change and my husband’s altered state. Sometimes I want to do what is simplest and maybe not best. In my caregiver fatigue, it’s easy to justify my needs over his, and sometimes my needs over his are the best answer. But this time, in this case, I yielded to my son’s bold opinion, which was undeniably best. I am grateful my family was willing to help and appreciate the idiosyncrasies plaguing Doug and me. But overall, the dementia surprises I experienced while touching heartbreak as a family – blended, broken, and loved, one day at a time – were healing like a well-timed embrace.

Karen