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

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.

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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.

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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.

What’s What

When the kids were young, the head cold, sometimes the chest cold, and occasionally the stomach flu took turns infecting our home. One child felt ill, then the next, and then the next. Like dominos, we fell infected one right after the other, me included. By the time the kids were in grade school, my immunity was stout. I was unaware that a line item in the job description of motherhood reads: Foster immunity by sharing germs.

Doug rarely caught the menu of colds floating around, or, if he did, he never let on. In our entire married life, he showed sick maybe once. His early fatherhood job description included using a can opener, heating chicken noodle soup, and being supportive even when everyone else was cranky. We lucked out with Doug as a dad and husband. He knew how to open a soup can (even without a can opener) and was wholly empathetic.

Control has always been my thing. If you follow the personality profile tests, I am an I first with D as a very close second, an ENTJ, a Choleric, a Lion, and an 8. So, to summarize, for those of you wondering what I am talking about, I seek control with a goal with an occasional drop of fun stirred in (emphasis on occasional).

Sickness, big or small, never made it on my planning profile or goal sheets. Ailments visited as an inconvenience threatening my stride. With three kids in tow (often one with a cold), I frequently set out to conquer my to-do list. The checkmark, indicating finished, drove me. In retrospect, and with a deep sigh, it escapes me why the IT (whatever that was at the time) was high-ranking enough to make it on a list, deserve a checkmark, and justify trading a cozy mattress and pillow at home for a car seat makeshift bed for a little one with a cold.

I’ve lightened up some, which relieves my family, mostly Doug. I guess that’s part of maturing in my temperament, wising up with each new gray hair, and realizing that equanimity is a more worthy pursuit than obsessive conquest.

Doug recently had right-side total hip replacement surgery. The surgery went well, and the fear I nursed regarding potential cognitive decline never happened. His cognition following surgery was the same as when he went in. I am so grateful!

Dementia, however, is relentless, and Doug’s progression continues. I help him dress, shower, brush his teeth, shave, express himself, eat balanced meals, and get to the bathroom in time. He needs constant care. Sadly, this is part of the steady, unyielding course of dementia’s decline. My temperament serves me well here; all of this I handle as a list of things to do. There is a time and place for each detail.

Around here, we operate on a schedule and in a familiar setting. Sometimes I even check things off when they’re finished. Some things, like brushing our teeth, we do together morning and evening. Other things, like making meals, I do solo (or with my caregiver, Kathy’s help), intending to set the plate on the table at a specific time, the same time every day. The week’s calendar decorates a large whiteboard posted on a wall in the kitchen. A consistent schedule helps Doug feel secure and unflustered, and it helps me organize what’s what. I live two people’s lives – mine and his.

Mercifully, Doug’s laid-back personality is refreshing and makes our lives together more graceful. He has never been a complainer and is happy to do what he’s told. He has always been witty and fun, whimsical in many ways. He still does life through that lens. Even with dementia, laughter visits frequently.

A few days ago, though, the laughter stopped, and I noticed differences in Doug faster and more aggressively. He wanted to sleep a lot. I was suddenly spoon-feeding him, and he would bumble out words saying he felt cold. I took his temperature many times. His temperature was normal, his blood pressure was normal, his pulse was normal, and he had no pain. I struggled to understand the changes. I have not experienced Doug being sick. I wasn’t even sure he was sick. What-was-what felt disordered and wrong, but nothing conclusive, just different, just more not being able to take care of himself, basically just more dementia.

I wondered if this was possibly the beginning of the end. What does the future of dementia look like as Doug approaches eternity? It felt like a giant leap to unexpectedly be near the end, but I’ve never seen this side of dementia before; I wasn’t sure what it all meant. But then, somewhere mid-thought, when I was ruminating about the emptiness life would bear without him in it, Doug spoke up with as much clarity as he could muster, shaking me out of my grief-ridden obscurity, and said, “I’m drifting.”

For some reason, that was it; that was all I needed – I went into high gear and took Doug to the emergency room armed with nothing definitive to share with a doctor except a gut feeling that something just wasn’t right.

In the ER, Doug’s temperature was normal, his blood pressure normal, his pulse normal, and he had no pain. The medical staff moved ahead because I said, “something’s wrong.” They took my word for it, and they took blood and a urine sample. Then, we waited. Results showed Doug had a raging urinary tract infection (UTI). The doctor said, “he is one sick puppy,” and started an IV with fluids and antibiotics.

Doug is home now, healing on oral antibiotics and, back to his dementia, “normal.” We had a follow-up doctor’s appointment, and I learned UTIs are common in advanced dementia. It could happen again. Hopefully, next time (if there is a next time), I will be more aware of the signs. But for now, I am breathing in thankfulness, peace, and relief. I am working on breathing out all my missed ques, the badgering, unkind self-talk swirling between my ears, and the anxious feelings I hide about a future missing Doug – stuff not solved by a high-strung temperament, a planner, a goal sheet, or a checklist.

Equanimity encourages me to let things be as they are in the moment and embrace inner smoothness. John 14:27 profoundly and gently reminds me God is close. It says, “Peace I leave with you; my peace, I give you. I do not give to you as the world gives. Do not let your heart be troubled, and do not be afraid.” Embracing inner smoothness and God’s secure peace is counterintuitive to my control-riddled temperament. They both require letting go, which is gradually happening as I bump along this uneven, sometimes jarring dementia road. I opt to trust that eventually, inner smoothness and God’s Peace applied will pave a more tranquil wounded path to travel as I hold Doug close and keep moving forward, one day at a time – no matter where it takes me.

Karen

More Good Days

Our son Dan reached out to Doug’s past through social media, asking for short video clips highlighting Doug’s relationships over the years. Friends submitted videos from all walks of his life. Dan condensed them into a single Birthday video for Doug to see, and we gathered as a family and watched it together. We mostly cried and laughed and cried some more. It was beautiful (and mind-boggling) to watch who Doug recognized and how happy he was to see them! He has always loved his people. It was a good day!

More good days has been the mantra we’ve lived by and made decisions by since the inception of dementia. For example, I frequently ask myself or Doug’s doctors, or family and friends, what actions can we take or what choices can we make on Doug’s behalf to result in a good or a better day? Thinking this way assists with my goal to provide Doug with more good days as he lives out the remainder of his life with dementia.

A few years ago, I was introduced to the Positive Approach to Care organization. The founder of the organization is Teepa Snow. Early in Doug’s disease, when researching dementia and its toll on the patient and the caregiver(s), I was overwhelmed by the information’s negativity. There is no cure… They lose this, and they lose that, and they can no longer do this or do that… There are seven stages of loss… They eventually succumb to death by this means or that… It was a lot to take in, especially when I already recognized some of these losses in Doug.

However, my questions differed from the questions mainstream research was seeking to answer. I did not particularly want to know what Doug would lose and not be able to do, I wanted to understand what he could still do and what he would hold onto even as his disease progressed and skills diminished. I wanted to know what part I could play in presenting him with more good days. Teepa Snow and the PAC team, their research, online material development, and positive approach to care have bolstered me along the way and assisted in providing Doug some grace and dignity as he and we lean into more good days.

With that mantra in mind, we said yes to Doug’s left side total hip replacement in September 2020. The surgery went smooth, but the days following proved demanding. The surgery stress, anesthesia, pain medication, and dementia were wearing. As a result, his baseline brain change lowered, and we had a new normal.

Following surgery, there were months of Physical Therapy and a move.

Two months after Doug’s hip replacement, we moved about 1100 miles north to a new state with new doctors and a new PT. Not far into his online Physical Therapy appointments (due to COVID), at our new home, it became evident a right hip replacement may be in Doug’s future. My heart sunk. Maybe, I mused, he inherited a dysfunctional arthritic hip gene from his athletic youth, or maybe from his father’s side of the family.

My resolve to design more good days and avoid another surgery rose in me like a north wind. A second hip surgery frightened me, not because of the procedure itself, but because of the cognitive decline Doug experienced the first time. Doug had a cortisone shot in his right hip, hoping it would provide pain relief. Unfortunately, it did not. Instead, the x-ray showed off severe wear-and-tear arthritis.

Tylenol became the sedative in the short term, but soon, the pain worsened. Doug had a PET and CT scan confirming he is in the advanced stage of dementia. And as time wore on, I began to deeply question which option would provide more good days, limping around in pain or having another hip surgery. There were clear pros and cons to each side of these options. So I went to work to get some firm answers.

There is one clear answer for hip pain and it is the fantastic technology of hip replacement surgery. Doug did not have to be in pain. The surgery would instantly remove it. However, it is not that easy regarding dementia and dementia’s part in adjusting surgery outcomes, patient recovery, and further brain change resulting from the procedure. There is no clear answer. To further complicate the equation, the question regarding what impact pain has on brain change due to dementia and Doug’s inability to clearly express what he feels, knows, and remembers also needed to weigh in.

I talked to everyone who would listen and had an opinion. Stress walked the floor when I should have been in bed. My deep fear was that Doug would no longer recognize me or know where I belonged in his life after surgery. I would be left picking up the pieces of absence, with Doug standing next to me, albeit pain-free.

Grief of this magnitude scared me. I expressed this to my son, and ultimately his response clinched what needed to happen. He asked, “More good days for who, mom, you or dad?” The surgery option won out and went on the calendar.

Tomorrow is the day. Tomorrow morning, Doug checks in for right hip replacement surgery. As Doug’s Power of Attorney, I will sign the forms. As his caregiver, I will ensure the house is in order and ready for his return. As his wife, I will pray and give him a hug, kiss, and reassurance that everything will be okay.

I am taking a deep breath as I write this and trusting God with the outcome and my future. Doug is peaceful and unruffled. I learn from him every day and love him completely each step of the way, one day at a time.

Karen