Douglas Kirk Creasey

March 26, 1958 – February 25, 2026

Doug Creasey died on 2/25/2026 in Portland, OR, at the age of 67 after a long battle with Early-onset Dementia. He was a testament to the power of the human spirit, illustrating how love wins. Despite the challenges of the disease, Doug’s Spirit remained unwavering, loving, and eager to soar free. He made it. He’s soaring free in Paradise!

Doug was born to Jim and Jeanie Creasey on March 26, 1958, and grew up in Eugene, Oregon with his 3 siblings. He spent his early years making lifelong friends, playing sports, giving his parents and the neighborhood moms early gray hair, and his schoolteachers and coaches a run for their money. Doug’s young exuberance (bad manners) matured into cheery, lighthearted energy, always up for an adventure from which family, friends, and many young people benefited. He studied Sociology, graduated from the University of Oregon, and was an ordained minister in the Foursquare church denomination. Doug was a career Pastor of youth and young adults for most of his adult life. Youth development was a passion. Doug pastored in seven congregations in six cities and three states.

Doug had an undeniable enthusiasm for life. He was playful, a sports enthusiast, loved adventure and a well-timed one-liner, had a craftsman’s knack for producing beautiful furniture, and deeply cared for those he loved. Doug was a true friend who quickly and intentionally made you feel special, seen, and cared for. He saw something in people they didn’t always see in themselves, and he purposefully doled out hope. If you were a friend of his, you were the lucky one.

Doug enjoyed basketball and was proud to play in the state finals in high school. He played college ball and coached his children in the sport. Doug had a lifelong enthusiasm for golf, which began as a youngster riding his grandpa’s pull bag around the course and continued into a beautiful swing and an eight handicap. He golf-globetrotted as a PGA tour caddie and taught his children to swing a club and drive young as his golf cart caddies. Doug was a dedicated Oregon Ducks fan, cheering for his alma mater with family and friends. He flew his Duck flag during the winning seasons and required solace, but still flew the Duck flag in the losses. He was known to call out “Go Ducks!” to complete strangers wearing Duck regalia.

Doug relished travel. He loved his passport (but hated his photo). He visited several countries and many of our states. Doug always boarded the plane last and sat in an aisle seat to stretch his long legs. The greater the adventure, the happier he was. But closest to Doug’s heart were his faith, family, and a good cup of coffee.

Doug’s life was renovated from the inside out when he became a Christian in 1978. From then on, he knew he was loved. He lived unburdened, optimistic, and grateful. His faith guided him to the end. He married his sweetheart, partner, and soulmate in 1983, and they soon had three children he loved with every fiber of his being. Doug is survived by his wife of 42 years, Karen (Service) Creasey; his children Briana & Kalib Loy, Daniel & Chelsea Creasey, and Aaron & Elizabeth Creasey; his ten grandchildren, Elizabeth, Gideon, Brooklyn, Elliott, and Elias Loy; Marlow, Sutton, and Ellis Creasey; Micah, and Peter Creasey; his sister Lisa Creasey & Tim Doran and his brother Bob & Anne Creasey and several cousins, nieces, and nephews. His sister Shellie, his niece Jacque, his nephew Derek, and his parents preceded him in death.

If Doug were a poet, he might have penned the poem below. With a glint in his eye, a wry tilt of the head, and that unmistakable edge of sarcasm in his voice, he was known to ask a restless companion—half-serious, half-smiling— “How much is enough?” Then, after a perfectly timed pause, he’d answer himself: “Just a little bit more.” Doug didn’t crave excess or accumulation. He didn’t live for things. He was happiest in the simple, the uncluttered, the moments that asked for nothing but relationship presence and ease.

He would wish that kind of enough for you.

I WISH YOU ENOUGH ~ Bob Perks

I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough “Hellos” to get you through the final “Goodbye”.

Doug is loved and respected by many. He will be greatly missed. We say goodbye for now, but not forever.

Please take some time to click on the QR code and share your memories, stories, and pictures of Doug with his family. These remembrances will be deeply meaningful.

A Celebration of Life for Doug will be held (and live streamed) on March 31, 2026, at 1:00 PM at B4 Church – West Building, 13656 SW Walker Rd, Beaverton, Oregon.

Nearing the End

Well, here we are—nearing the end.

The sacred end of life.

The end of an unthreaded mind.

The end of an identity.

The end of a 42-year marriage

The end of co-parenting and a joint bank account.

The end of hope for healing.

The end of planning and anticipating.

The end of shared laughter and dancing in the kitchen.

The end of hugs, snuggles, and physical touch.

The end of blended earth suits journeying side by side.

The end of endings I have yet to experience.

The end of caregiving.

I am tired.

I am numb.

I am profoundly sad.

I am lost… and found.

I am swallowing past the lump in my throat and breathing through the deep ache in my chest.

I am exhaling more than inhaling.

I wipe what feels like endless tears, I eat little – enough to sustain, not savor.

I am heartbroken… and aware.

Then, gratitude

For Doug and Karen, us; each other, who lived through ordinary and holy.

For the years, the love, the memories, the man – a forged life.

For the good and the not-as-good. Mostly good, no regrets.

For our beautiful children and grandchildren who share our DNA and our story.

For my devoted dog.

The next days and hours will be family:

Love

Intimacy

Peaceful grace

Tender earthly goodbyes

A home-going

Jesus

How will I (we) survive it?

One minute

One breath

One day at a time.

Karen

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

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

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

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

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.