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

The Human Experience

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

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

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

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

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

Fibroadenoma, in other words, benign! Grateful.

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

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

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

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

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

Karen

Walking With a Limp

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

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

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

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

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

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

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

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

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

When Dementia Surprises You

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

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

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

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

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

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

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

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

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

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

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

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

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

Karen

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

How Do You Sum Up a Life?

How do you sum up a life? I’ve been asking this question a lot lately. A tombstone sums up a life with a dash between two dates and possibly an epitaph like, “Loving husband, father, son forever,” “Friends always,” “My one true love,” or “Mommy.” An obituary in a newspaper or online dedicates two paragraphs or so to summarize a life. There are even classes to teach you how to write a tribute succinctly using crisp word choice and industrious punctuation.

My mom died recently, or maybe I should say my mom passed recently, or I lost my mom recently; it seems more politically correct to use those vague words than to say the word died. People don’t seem to like that word; it’s too direct. I cringe, though, at the thought of losing mom, like losing the keys between the car and the key hook on the wall, or like losing a precious gem from my ring that silently shook loose from its seat while I walked along a sandy beach, sadly never to appear again. I wince, imagining mom’s passing from here to there like a speeding train bolting towards an invisible complicated destination. Died feels more accurate and definitive, more real somehow. September 26th. That’s the day mom died. She made it to 90! Her birthday was August 29th. I’m left to fill in the dash and make sense of it all as an adult child, her only daughter, and her caregiver to her final breath.

Mom was not perfect. She was a complicated figure in my life, but she was my mom. My only mom. She taught me to tie my shoes and to say, “I’m sorry.” She showed by example how to ask questions and make a friend. Mom gave some good advice and some bad. But, in the end, forgiveness was her request. She loved me; I know that for sure.

Today my feelings toward her are tender, and childhood memories replay with warmth and affection. During the last years of her life, mom lived with Doug and me close to family. She died with her children next to her, in our home, in the middle of the night.

Without mom here, this holiday season is abnormally empty and oddly freeing. Old age burdened mom. She used to say, “getting old isn’t for sissies,” and as her care partner, I concur. Daily I felt and managed the obligation and responsibility of her elderly realities. Since her death, the oddly freeing feelings I’ve encountered stir up waves of guilt, relief, sadness, and contentment—a mixed bag of grief.

Doug’s dementia has kept him from clearly comprehending mom’s absence. He lives each day like the day before, as if nothing has changed. I guess, for him, little has changed. Mom is not here, that has changed, but the household routine is still very much the same. Kathy (his caregiver) still comes and offers companionship and consistent care. I still talk to him about anything on my mind and ensure he has the food he likes and friendly snuggles now and then. Romeo (our dog) still pops up on his lap and barks at the neighbors.

Apathy visits Doug often as he wanders the house and speaks very little. It is a genuine part of the dementia experience – flattening his facial expressions and obscuring his daily existence with an ambiguity of monotone. I used to think apathy meant not caring, the opposite of empathy, which it is to a degree. But in Doug’s case, it blooms as a sort of lethargy – a lack of interest, an indifference lacking expression and initiative. It is not sadness or hopelessness like depression; it is almost a bareness like his emotions and creativity are drying up.

One thing Doug still animates for, though, is Christmas music. He always has. It could play year around, and he would be content (I would go crazy by January 2nd, but he would love it). When these festive songs play, I watch Doug remember. He whistles occasionally and even sings the lyrics as if nothing hinders the language centers of his brain. His eyes light up, and apathy briefly slips away (which also happens when he keeps company with our young grandchildren). It is a mysterious phenomenon. Watching apathy dissipate and Doug’s eyes sparkle with clarity, even for a moment, feels like magic or God.

Grief has a broad reach in my life right now – the predictable waves of grief surrounding the death of my elderly mom drop in and out of my daily experiences. I appreciate how it goes; I’ve felt this turbulence before – with each passing day, memories shake loose, and the tug on my heart eases.

The anticipatory grief of dementia I am simultaneously experiencing, however, obscures daily life. It is a different grief altogether – a terminal illness, piece-by-piece grief. It hovers and waves across my emotions like an unkind slow goodbye experience that deserves postponement, swelling as the days pass, not easing. In many ways, anticipatory grief feels disrespectful, even sacrilegious. It is grieving the dying pieces of a person and the reminiscences of someone you love who still lives.

Since Doug’s diagnosis, the holiday season has been a tricky time of year. Doug and I used to love engaging the bigness of the festivities with our children, friends, and family. Looking back, it seemed to all happen with unforced energy and a peppy step as we prepared meals, had people over, baked cookies, and decked the halls. But this year, in particular, holidaying feels like a herculean effort; I catch my drooping shoulders and downcast gaze leading my weary frame from here to there.

I know why that is; you don’t need to send me responses explaining the grief cycle at holiday time. I get it. I also know my very best thinking brings me to where I am at any moment and that if I choose, I can set myself aside in quiet reflection and find gratitude in the now.

It is empowering to live intentionally in the step-by-step of time, shoring up my thinking with thanksgiving and silver linings. When I concentrate on blessings, gratefulness, and love, I feel less downtrodden and realize afresh that I have SO MUCH to be thankful for.

So today, I’ve decided to count my many blessings and say a thanksgiving prayer. Doing this will interrupt my stinking thinking, nourish me, stand me taller, and help me, one day at a time, walk the road of grief I am on during this beautiful holiday season.

Karen

He Can Until He Can’t

Dementia is a slow, persistent, odd mixture of impaired undoing and living.

Doug and coffee were synonymous! There was even a time he momentarily romanticized he could be a coffee connoisseur. He took his coffee seriously and took people to enjoy a cup before going to coffee was a thing. Doug even worked a very short stent at Starbucks, but that’s a different story for another day.

We had a fancy coffee maker, a bean grinder, and a French Press. Doug loved his morning brew routine, enjoyed a coffee break in the afternoon, and always looked forward to sharing a cup with a friend at the newest up-and-coming (or hole-in-the-wall) coffee shop.

He insisted that making a good cup of coffee is a delicate, sophisticated process. First, he would say, it involved grinding the beans to the ideal texture for the expert smooth taste. Then it required using the correct amount of water (filtered if possible) at the appropriate temperature. And finally, after completing the brewing process to perfection, which I guess is a thing all by itself (Doug would say this is when you can ruin all deliciousness), a good morning aromatic sip necessitated the right coffee mug. So, Doug collected assorted mugs from his many travels, each with its own story.

Dementia has undone Doug’s ability to make coffee and care about it. This reversing wasn’t sudden or abrupt, like an epiphany or a surprise. Instead, it happened slowly, in steps, in phases, as if his coffee knowledge and passion gradually leaked out and evaporated into unlearning.

At first, he struggled with the order of the steps he used, but he muddled through, sometimes remembering and making coffee seamlessly, and other times baffled by the clunkiness of his ability. Then grinding the beans all by itself became problematic, so he occasionally purchased ground coffee beans to have in case the bean grinder was impossibly uncooperative. He eventually scrapped the fancy coffee maker and the bean grinder altogether and used the French Press exclusively. It was more straightforward, especially when using pre-ground beans and a hot water tap. But even that became unworkable eventually.

Doug is, most of the time, entirely apathetic about coffee now. The preparation has become too complicated, so he no longer makes it; I do. I use a simplistic coffee maker with pre-ground coffee beans, water, and a basic push-button start. I set his coffee at the breakfast table in what I think is a favorite mug. He doesn’t seem to care, sometimes he drinks it, and sometimes he doesn’t, but he always says thank you.

The early signs of Doug’s coffee confusion eluded me due to patchy inconsistencies. I would justify the confusion as tiredness or stress, not realizing brain change was well underway. I didn’t catch on until much later in the dementia process when the confusion became consistent and prominent enough that I could not miss it.

Since then, I have learned. I now know the dementia digression of any task always starts the same way. The slow, awkward undoing with a light bulb of coherency here and there is classic – two steps forward, one back, two steps forward, two back, two steps backward, one forward until backward eventually wins the war.

Doug’s executive functioning (step-by-step cognition) was where his early hiccups of dementia were first noticed, like in brewing coffee, keeping his golf score, driving a car, and playing cards. He is now in the later stage of the disease, meaning brain change is more global and simultaneously affects numerous regions. For example, the information his brain catches from his eyesight is progressively changing. I took him to an Ophthalmologist, thinking he needed glasses, but his vision was fine according to the eye tests; he did not need glasses. Still, he struggles with depth perception, peripheral vision, and even sometimes seeing what’s directly in front of him, like the spaghetti on his plate or the pillow on his bed. The parts of his brain that interpret his visual world are weakening, affecting many things like making the bed, eating a meal, buckling his seatbelt, or navigating up or down a curb.

Think about how you respond to what you see, trusting that your visual interpretation is accurate. Now consider how you would navigate your world if your brain did not accurately interpret what you see. It’s crazy confusing to consider Doug’s reality this way. Even crazier is his unawareness of the misinterpretations.

Dementia is a long slow road of persistent defeating brain change with intermittent coherent periods woven in, making much of it confusing and exhausting for both the person and the one helping. It is not like Doug does something without mistake one day, and the next day he is completely incapable. It’s more like this. Last year at this time, Doug made his bed religiously as he always did, every morning without a wrinkle; you could bounce a coin on it. But now, a year later, his bed-making skills are mostly absent. He still recognizes that the blanket goes on the bed, but the order – sheet, blanket, comforter, is a mystery, and smoothing one out over the other is abstract. Wrinkles and sometimes wads of bed covers are the best he can do, but every morning he still attempts to make his bed.

It’s strange what he does and what he no longer does, proficiently or even at all. He still laughs at a joke, whistles a little tune, and swings a golf club, but he struggles with most ADLs (Activities of Daily Living). I help him shower, brush his teeth, and get dressed. I hold his hand to cross the street, unbuckle and buckle his belt before and after the bathroom, drive him around, and serve him a plate of food at meals. Doug always used a handheld razor and shaving cream to shave. Then, a year ago, he started using an electric razor at my prompting. I figured it would be less risky for him and less complicated for me to manage. He has always been clean-shaven, never much for facial hair, but now he misses large splotchy spots and doesn’t notice. I imagine soon I will be stepping in as his shaving buddy.

Each area I assist with has gradually dissolved from competent proficiency to ineffective ability, with occasional lucidness within the disappearing. When lucidity brightens Doug, it is tempting to think he will get better and relearn, memorize, or reconstruct the details. It seduces me into believing that if I help a little more, clarify better, or ensure he gets adequate rest, exercise, broccoli, or fresh air, all will reverse and return to normal. But alas, it just isn’t so. The pain in my heart catches and stings afresh each time I realize lucidity is temporary and backward is pilfering new territory.

Cohabitating with dementia’s undoing reveals soggy and wishy-washy sentiments in me. It hovers grey and muted as my insides wrestle with loss while trying to reconcile what remains. Grieving the loss of someone who lives is painfully raw. Some days grief consumes me, but most days, joy and sorrow hold hands as we walk out fragile tension together.

Prayer helps me find my voice, and it empowers me forward. Doug and I believe life is sacred and time on earth, however short or long, is a priceless, God-given gift that includes an embedded assignment to spread love around. Doug still does that. Even with advanced dementia, he extends love to me, his family, friends, and even strangers. Indeed, his brain change is a slow, persistent undoing, and backward is taking additional territory daily. Still, Doug’s spirit is strong, and his display of love inspires me repeatedly, reminding me one day at a time that grief and love are intertwined.

Karen

Costco, a Pedicure, and Verizon

When I was growing up, Costco did not exist – be nice. I’m not that old; Costco is young. When Doug and I were raising kids, going to Costco was a weekly event. I was grateful to have the wholesale, large quantity store available for our growing family. My daughter enjoyed the Costco experience, samples, the toy section, and even an occasional hotdog. But mostly, she enjoyed organizing the cart while I shopped, so everything fit neat and snug. She was the oldest of three and was especially helpful when her younger brothers came shopping with us. In my haste, it was not uncommon for me to toss an item into the cart while assisting a child with broken concentration along the way. Admittedly having a little helper in my daughter – organizing my disorganization – aided the whole Costco experience.

I rarely shop at Costco now. The kids are grown, and the Costco portion sizes tend to be too exaggerated for my current lifestyle. But now and then, Costco comes calling. It did recently in the form of Pots and Pans for my niece.

I did not give the potential complexity of this field trip any thought when I loaded Doug and mom into the car. I brought the wheelchair for mom and the “handicapped” parking placard. We arrived, parked, settled mom into the wheelchair (after the walker became more than she wanted to manage), gave Doug the job of pushing the cart (which now carried the discarded walker), and headed towards the pots and pans. As a caregiver of two in a crowded Costco on a Saturday afternoon, I immediately felt challenged. I pushed the wheelchair and trusted Doug was following close behind, pushing the cart.

Trusting dementia should have been my first clue that being in Costco on a crowded Saturday with two people requiring around-the-clock physical and cognitive attention would leave me saying, “I will never do that again!” I guess that’s what makes hindsight 20/20.

Doug’s dementia is not glaring like old age or a broken leg. It doesn’t physically present itself from a distance and does not tend to bring the do-gooders around to hold the door or patiently walk behind until there is an opportunity to pass. Dementia lurks unsuspecting, exposing itself randomly, especially in Doug, who could be considered too young for such an ailment.

In the case of this Costco trip, dementia reared its head as Doug accidentally ran the cart into the heels of an innocent stranger with a temper. Doug’s language deficit and my profuse apology and clumsy explanation only made things worse. I gracelessly maneuvered a confused ruffled Doug, the shopping cart carrying the discarded walker and pots and pans in a box, and mom in the wheelchair away from the irritated unforgiving customer. We bumbled towards checkout as my heart raced and tears brimmed.

—————–

We have a family joke about grandma’s big toe. Doug inherited it. He also inherited big feet and dry skin, the perfect combination for a pedicure. Doug, like many men, had no pedicure experience. A pedicure, to him, is part of a spa day women share with their friends while vacationing in a five-star resort, always including a flair for toenail polish.

Toenail polish is not Doug’s thing!

Caregiving has taught me to do many things for Doug that I don’t remember being part of the wedding vows or the pre-marriage counseling. Cutting toenails is one such thing, especially the big toe toenails. So, I recently decided someone else needs that job, and I took Doug to get a pedicure!

Doug’s love language is physical touch. He feels loved and appreciated and gives love and appreciation through touch. For example, a pat on the back in sports was equivalent to a “good job, my friend.” With his kids, he would give a hug, tousle hair, or put a hand on their shoulder to let them know he was close and that he loved them. In the case of Doug and me as a couple, he liked to sit close, hold hands, hug, be held, and be intimate.

Sadly, dementia has stunted Doug’s expression of touch. Now he is reserved, detached, and often stands alone. This apathy was an early dementia symptom that is still hard to get used to. But when I took Doug to get a pedicure and trim those big toe toenails, the physical touch involved in the process lit something in him. His face beamed with a smile, and the words cascaded in expressed gratefulness – albeit not all in the correct order or as prolific as you and I would articulate. He loved the attention, the touch, and the clean, trimmed outcome. I made him another appointment in a month.

—————–

Two of my least favorite things are buying a car and going to Verizon. They both feel high pressure, where the salesperson has the upper hand with practiced voice intonation techniques and dense, complicated language about specials, discounts, and the latest technology. It all inevitably leaves me feeling vulnerable and underqualified. Unfortunately, my aversion to these high-pressure situations was recently reinforced when I experienced a slick salesman with empty promises that included changing our cell phone plan at a Verizon store.

I made an in-person appointment and arrived on time, knowing what I wanted as an outcome, but feeling apprehensive and slightly melancholy about changing our existing phone plan details. Doug and I have shared a cellular family plan for what feels like, forever. Both our phone plans were under one umbrella. Our children each initiated their cell phone use under that same umbrella until they eventually graduated to individual cell phone contracts.

Doug’s phone number holds a place marker in my memory. His “hello,” when he’d answer, is as familiar as my reflection in the mirror. We have shared an unknown number of phone conversations and texts, some simply informative, some serious, some playful, and some emotionally charged.

I intended to reduce our cell phone plan to a single line (mine) and remove Doug’s phone number from the contract during this visit, hence my melancholy mood. The step to make this change and downgrade from our shared plan has been brewing for a while. It was not a spontaneous or impulsive decision. Doug’s language and executive functioning skills are inadequate for this (or any) level of technology. He doesn’t use his phone anymore except as a fidget toy that confuses him, triggers anxiety, is easily lost, weighs heavy in his pocket (when it’s not lost), and requires charging.

Making this change to what had become a staple of daily life – consistent communication between us anytime and anywhere – was not easy emotionally or physically and felt like another painful dementia fragment fractured from the whole of who Doug has been.

After a lengthy explanation of our dementia situation and how it impacted our cellular contract details, I left the Verizon store with what I thought was the best option, only to discover a slick salesman’s sale won the day. My gullibility was responsible for an additional hour of my time on the phone with a customer service rep who needed a complete explanation again to make necessary corrections. All said and done, I was exhausted, and Doug’s phone was disconnected from cellular technology.

For us, a day in the life of dementia is never smooth, always heartbreaking, and filled with choices, deep love, laughter, and my bottomless desire to provide Doug with as many more good days as possible.

He does not remember the challenging Costco experience with a shopping cart, pots and pans in a box, and the angry unforgiveness directed at him. Doug does not recollect unleashing words of gratitude (usually trapped silently inside) through the beauty of touch in his initiation to a pedicure. He is no longer anxious and triggered by the cell phone he lugged around in his pocket (when it wasn’t lost).

Doug lives in the moment as his mind mercilessly changes daily, slowly walking him toward his heavenly home. I desperately wish to interrupt these changes and stop this relentless cadence, but I can’t. So instead, I pray for him and do what I can to provide more good days by spending time connecting with him one day at a time and gratefully counting the many blessings we still share.