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

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

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

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

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

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.

Hershey Stories

When the kids were young, we owned a Dachshund named Hershey. This dog was small, brown, shorthaired, and as busy as our young family. The kids would play in the yard with Hershey in the middle of their shenanigans. The shrill childhood voices mixed with Hershey’s small-dog yippy barks were familiar sounds. Puppy naps happened snuggled with a kiddo on a bed or the couch.

Doug participated in the bedtime routine at our house and had a specific task, storytime. Stories not from the brightly colored rhythmic children’s books we had stacked in every room but from Doug’s whimsical creativity and unique voices for every character. Doug was a playful storyteller engaging the kids’ imaginations before they drifted to sleep. Hershey was the protagonist, center stage, and always the hero.

Hershey went to the moon, swam in the ocean, climbed Mt Everest, saved the kids from the villains, and flew with a cape. In Doug’s conjured-up escapades, the kids were often in some random dilemma, and the dog consistently won the day. Occasionally the stories concluded with a nail-biting “To Be Continued…” because it was getting late, and it was time to go to sleep.

“Tell us a Hershey story,” the kids begged. “Tell us the one about…” I always smiled when their requests became specific because Doug made up those stories on the fly. Listening to him trying to recall the particulars the kids remembered was laughable. They keenly corrected Doug’s detail mess-ups as he willingly pretended he remembered. After the kids were asleep, I laughed with Doug about the impromptu storyline maneuvers he made. He would smile and say, “I just fake it until I make it. As long as Hershey wins in the end, we’re good.”

I am not innately colorful, spontaneous, and quick-witted like Doug. I am more black-and-white. I tell the truth easier than I freely make up a story on the spot. If I was elected to tell Hershey stories, Hershey would have been less adventurous, more practical, and dog-like in his ways – tail wagging, yippy, four paws firmly planted on the earth and no cape.

Advancing dementia has reintroduced story time in our home. The kids are not Doug’s audience. I am. Doug is the storyteller and participant with minimal vocabulary and enough creative energy for two. I am the playground mom hovering from a comfortable two-step distance, ready to intervene and prevent possible disaster, busy behind the scenes keeping him safe. These current stories are not fabricated and imagined; he knows them as authentic sensory experiences. Hallucinations are real to the hallucinator.

Before dementia, I naively excused hallucinations as belonging to a drug-addicted homeless person who saw scary things and was scary, calling out in exclamation and reaching wildly for the invisible. I am not as naïve now and admit my perception was woefully unfounded and probably Hollywood generated. Admittedly, hallucinations can frighten the hallucinator and their loved ones, but that is not always the case. In Doug’s case, the golf course is usually the stage, and he is rarely afraid.

Doug has been a golfer all his life. As a young child, he rode on the back of a golf cart and watched his grandparents and parents play. He still swings a golf club like a natural, the smell of fresh-cut grass is seared into his psyche, and even with limited language, he can recite the names of some golf greats. But alas, in Doug’s dementia reality, we live on an active golf course. We don’t. We live on a hill, in a cul-de-sac, with neighbors on all sides.

Wandering and hallucinations like to travel together. Stories are frequently told about grandpa, mom, or a loved one with dementia found meandering alongside the highway with cars speeding by or roaming through the schoolyard, sometimes miles away. These can be scary experiences for the wanderer, the family, and the people who encounter them. Just the thought of it raises my blood pressure.

Doug likes to go. He wants to be outside. He likes to “walk the course” even in poor weather conditions. Golfers golf rain or shine. Keeping a close eye on him is required. I have changed my shower schedule, I know where he is when I use the bathroom, I have door alarms on doors leading outside, a child lock on the man door to the garage (which doesn’t deter him at all), there are locks on the yard gates, and he wears a trackable iWatch. But even still, escape happens. I frantically scurry to find and join him when Wander and Hallucination walk hand in hand.

It’s easy to unthinkingly hold Doug responsible for his escapes and illusionary episodes, expecting that with a little lecture from me, my frowning face, and an excellent reason why not, he will remember and not do it again. After all, he’s an adult, looks like himself, and should know better. But, unfortunately, just the opposite is true. Doug’s changing brain is step-by-step diminishing his ability to reason, understand, and calculate safe and unsafe, right and wrong, true and untrue, good and bad. All his experiences, hallucinations or not, are authentic and rational to him, and my frowning, stressed-out face only muddies the waters and causes Doug anxiety.

I am learning to be in the experience with him. For example, our dog was outside barking, and Doug commented, “The dog!” I questioned, “His bark?” Doug responded, “The golfers.” I said, “Oh yes, I bet the golfers don’t like a barking dog. I’ll bring him in.” I did, and Doug relaxed; all was good again. The dog was no worse for wear, our neighbors were grateful the barking stopped, and the golfers in Doug’s storyline could continue with their game.

The afternoon and evening are Doug’s most bewildering times of the day. His brain is tired from earlier activity, and he struggles to make clear sense of the world. Mirror and window reflections take on new personas. Random strangers show up unannounced and join Doug at the table or on the couch. Invisible things float by that he reaches for. Naps, complete with deep breathing, muscle twitches, and head bobbing, are almost instant when he sits down and closes his eyes.

None of this appears to stress Doug; he takes it in stride. So far, we are lucky his hallucinations are mostly kind and haven’t led him into chaos or frightening places. I sincerely pray that this peaceful pattern continues.

It’s strange living in someone’s altered reality, but I am learning to play within his storyline, wherever it leads. I’ve added a little spontaneity, color, and wit to my routine. Sometimes I’m one of his characters; occasionally, I’m helping golfers get situated or talking with the invisible friend on the couch; other times, I’m the playground mom keeping Doug safe. Whatever my role at any given time, I try to remember to smile, speak with kindness, and take it one day at a time, as I fake it until I make it. After all, as long as Doug wins in the end, we’re good.

Karen

I Left Him Behind

Doug loved to travel.

When we met, he had never been on an airplane, but that did not last long. Doug has crisscrossed the United States and traveled abroad time and again. Travel became his jam. He enjoyed everything about it and every mode of transportation, car, boat, plane, and train. Doug capitalized on the planning, the packing, the anticipating, the turbulence, the distance, the crowds, the coffee stops, and the aisle seats—all in the name of adventuring.

Airplane travel was exhilarating and simultaneously unpleasant for him. Doug is a tall man; an aisle seat, a Starbucks double shot, and boarding last were his flight signatures. He was enamored by how quickly a plane took him from point A to point B anywhere in the world. Concurrently though, the overhead bins were a forehead smack hazard, the seat in front of him sausaged his knees into his hip sockets, and his feet were robbed of their assigned floor space by the “personal item.” But none of that slowed down his unceasing travel bug.

Doug delighted in planning the adventures almost as much as he enjoyed the quest. He made most of the travel arraignments, from transportation to hotel stays to all the fun we experienced while there. He liked scouring deals and talking to people (or buying books) about the must-see attractions. The family trips that included the kids were his favorite.

Dementia creeps in slowly, lurking in the dark shadows of silence like growing mold behind damp sheetrock. Years can pass while compensation veils brain change. One afternoon Doug asked me to double-check a trip reservation he had made. The oddness of this request struck me. Rarely did he invite verification. Doug brushed it off as tired. But I cataloged it with the misplaced keys, TV remote challenges, blank looks of confusion, and repetitive questions. These oddities were becoming a mounting pile of mishaps tucked into our relationship’s fearful, inaudible shadows, and they were starting to smell moldy. I knew something wasn’t right.

TSA offers a Pre-check flight option for a fee. We signed up. I figured simplifying the airline boarding process was always worth it. Doug liked the faster lines; I liked that he didn’t have to take off his shoes or his belt; for some reason, getting them back on was complicated. In crowded airports, we held hands so we would not get separated. Doug got turned around, reentering the gate hurried traveler frenzy after using the bathroom. I didn’t see him come out; we lost each other.

Panic is hard to breathe or think through. It clutches and squeezes, and beads of sweat form. We found each other eventually. Doug had a sweaty brow, and I needed to sit down. Pre-diagnosis is consumed with suspicions, anxiety, and deferments. You don’t know what to call it, but you know something’s amiss. We were both compensating, doing our best to deny any incongruities. Eventually, brain change wins and gets a name. That day brought regretful relief.

The pandemic kept me from traveling. Dementia keeps Doug from traveling. His brain change is beyond pressurized independence and crowds. Peace, quiet, familiarity, routine, naps, and a big white dog now control Doug’s days, a far cry from airport existence. Buckling his seatbelt in the car proves troubling enough.

I recently folded the map and traveled to Florida. A new grandbaby boy, sharing part of my husband’s name, gave me the nerve to leave and love. I started preparing for the trip two months prior. Doug’s caregiver, Kathy, was involved, and so were my kids and brothers.

Planning to be nearly 3000 miles east for 6 days, leaving Doug at home is not a relaxed pursuit. It started with a night away, a practice for me, Doug, and Kathy. That single night at a local hotel by myself deserves its own blog. In short, it was quiet, I was lonely, and later my widow friend, with vast compassion and a ready hug, said, “get used to it; there will be more quiet, lonely nights in your future.” I don’t know what I expected when I walked in the door after that first overnight away from Doug in years, but he did not miss me. Or at least he did not express missing me. The dog did, though.

Kathy and I decided longer than one night away needed to be the next step in this practice process. Routine is Doug-with-dementia’s closest companion. Nights are wrapped in it from dinnertime forward. Kathy is with Doug on weekdays; I cover nights and weekends. Kathy slept over when I traveled; she and Doug needed practice. They needed to find their nighttime rhythm together. There is the dinnertime routine, the TV time routine, the bedtime preparation routine-changing clothes, brushing teeth, washing up-all requiring hands-on assistance, and the overnight routine, which only sometimes includes restful sleep.

I could not get my head around two nights away in a quiet, lonely hotel, so I drove three hours to my daughter’s house instead. This second practice was way more fun. I treated my sister-in-law to a birthday dinner with cake, and I relished in grandchildren, pastries, free time, and the sun. The two-night, three-day practice flew by, and suddenly I was home. This time Doug lit up when I walked in the door. Maybe he missed me. The dog did, for sure.

After the two-night practice, I bought a plane ticket to officially fold the map. We had more than a month to prepare. I told Doug about the upcoming trip. With an opaque, nearly transparent expression, he said, “Okay.” I told him he was not coming with me, and with Garfield-the-cat indifference, he replied, “Okay.” I planned his days with family visits and outings. I precooked meals and went over Doug’s many routines with Kathy. Then, less than a week before takeoff, Doug got an upper respiratory infection, and we visited the ER in fear of pneumonia.

The trip stayed on schedule with the addition of cough medicine and some extra attention. I cried nervous grief-filled tears on my way to the airport. I missed Doug as the tour director, bringing energetic anticipation to the adventure. I missed him as my husband and as the father and grandfather to our Floridian family. I missed him as my friend. I felt alone. The airports were shoulder-to-shoulder crowded with long lines not suitable for advanced dementia. I was relieved Doug wasn’t with me. TSA Precheck was no faster than regular check-in. By the time I boarded, I was ready for a nap.

Florida and family were fun in every way. I look forward to going back. When I arrived home late evening, Doug was still awake, entirely out of routine. I walked in the door, and he looked at me, clad in his familiar nighttime tee-shirt and navy cotton pajama pants, and said, “I missed you,” he leaned in for a hug, and I choked back tears and said, “I missed you too.”

Eventually, dementia speaks up with little regard for the surroundings. Its seeping moldy seams expose the decay brewing in the dark. Doug is past traveling for fun. He’s past traveling, except for short distances that don’t require significant routine interruptions and crowded chaos. We live content with less doing and more being. Daily I wait for the lucid interactions and smiles that still beautifully bloom through his dementia-mildewed persona. Doug’s timid hugs and sober epochs of recognition and appreciation, more than our itinerant adventuring ever did, keep me anticipating and looking forward one day at a time.

Karen