How to go from a relatively normal existence to caring for a loved-one with a life-altering condition.
Before 2012, I claimed to be one of the luckiest girls around. I never hesitated to say this because I’d been happily married to the same man for 32 years. My husband Dave loved me with everything he had. We co-created two wonderful children, which later led to four lovely grandchildren. I was, at the time, a visual life and business coach with a super-cool office located at Studios on Sheridan. I stayed busy giving workshops, coaching others to fulfillment, and creating art along with fellow artists. I loved my life!
All that changed in February 2012.
An Ongoing Diagnosis
It was as if someone crept into our home, snatched my husband and left another human being. His personality did a 180°. He stared at “nothing” most of the time, lost most of his desires, didn’t recognize hunger or temperature, became challenged driving a car, and began struggling at work, leaving his job on the line. When I’d push for understanding, he’d get angry. We fought a lot and I cried all the time.
I talked him into seeing a doctor, and after several tests, he was diagnosed with behavioral variant frontotemporal degeneration (bvFTD), a rare form of dementia that affects personality, executive thinking and multitasking.
The diagnosis was an ongoing thing. Proving that someone has dementia is a challenge and often leaves doctors scratching their heads. Testing continued for some time, taunting us with stacks of medical bills and the insecurities that accompany any sort of brain-related illness. In an effort to explain what was happening, I created a little video, which began getting hits by others who had a similar experience. We found support groups and realized that it wasn’t just us. The challenges we were facing were normal, but our life was far from the normal we’d known and loved for years.
Bulldozed by Life
I watched Dave’s life fall apart around him. By 2013, he had lost his job and most of the working relationships that accompanied it. I’ll never forget sitting in his boss’s office—me in tears and Dave confused—as we shared our disappointment over the loss of his career.
By the end of that year, we felt as if we’d been bulldozed. We filed for bankruptcy and stood in line for food stamps. Through all of this, Dave’s connection to what was happening seemed out of sorts. He was in a strange fog that left him copasetic with everything. He just was. And as he had no reaction to most of life’s reconfigurations, I picked up the emotional toil and ran with it.
To those who knew us well, Dave would often “show up,” appearing normal, while I looked like the real basketcase because my emotions often poured out of me. It felt as if my integrity (and my sanity) were challenged as others would look on and say, “He seems fine to me.” Our everyday life was altered, our future redistributed into what felt like a downward spiral of failure, shame and misunderstanding.
By 2015, we noticed that many of our friends had become estranged—in part because of the chaos we lived in and because people didn’t know what to expect or say. I closed my office, took the reins and began making decisions. Over the next few years, we sold our home, moved to Florida (which included moving my 92-year-old mother, who we cared for), bought a small place in a retirement community where my sister lives, and began a new life.
I had a sweet, little art studio and it often housed my sanity. The sunshine and nearby ocean seemed to help Dave, but life’s polarized experiences continued. In the nearly three years that we lived in Florida, our experience was speckled with new friends and new experiences, but also with the death of my mother and the family challenges that often surround loss.
The Long Road
In my attempt to maneuver through life’s challenges as a caregiver, I looked for a book to help and came up empty-handed. They were all overwhelming, with too many words and hardly any visuals. So I sat at our dining room table and wrote one myself—with visuals and life-coaching prompts to inspire caregivers to take care of themselves so they can care for those they love.
A Kickstarter campaign funded my little project, and suddenly I was an author and illustrator. Looking back, I’m not sure where the gumption came from.
In 2018, we decided to move back to the Peoria area, where I took a sales job and grabbed another studio at Studios on Sheridan. I coach, do workshops and create art while Dave spends most of his time writing poetry. His condition throughout this time has been very unpredictable.
When FTD enters a home, it’s as if life laughs at you. Everything is turned upside down and inside out. What once worked doesn’t work anymore. One of Dave’s doctors said there are over 167 variations of the disease, making it difficult to diagnose or predict the future.
Dave is quite articulate. As a matter of fact, he and I have presented, together, to several groups about what it’s like to be the caregiver and what it’s like to have the disease. But he’s also challenged with things like leaving a paper plate on a hot stove, trying to crawl out of the window of a moving car, an astronomical temper, an inability to catch social cues or handle too much stimuli, a tough time making decisions, remembering to eat, etc.
For some, being diagnosed with bvFTD is a short-run experience, leading to death within two years. For others, like us, it’s a long road filled with ups and downs that can carry on for well over 20 years.
The last six years have been challenging and full of crazy, unexpected events, but we’ve managed. We’ve been shocked by the number of people who have disappeared from our lives, but delightfully surprised at the love offered by others. Dave is maintaining and we’re both enjoying this crazy thing called life again as we work hard to rebuild our future. We spend a lot of time at the studio. It’s our go-to place for inspiration, because let’s face it: when it comes to chaos and facing the unknown, creativity helps us maneuver toward new avenues of thought. And really, in the end, our life is ultimately our biggest masterpiece. iBi
Robin Albright’s book, 12 Tiny Well-Being Tips for Caregivers is available for sale at robinalbright.com.