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