About three months ago, our family thrust itself into the world of caregiving. We found out this past November that my father-in-law has dementia, and it had reached a point where he could no longer care for himself in his longtime home.
A widower of about four years, he had lived alone, and it wasn’t until a visit this past Thanksgiving from other family members that anyone realized things were not quite right. My wife, who had only begun communicating with him by phone and text about two years earlier (long story) had no idea — he was surprisingly good at sounding lucid and otherwise normal by phone.
Family members quickly packed up his belongings and moved him to an independent senior facility in Eugene, closer to friends and in a building that provided regularly scheduled meals and more people with which to socialize. It worked for a while, and my wife kept in daily phone contact, but by February, family and doctors agreed that him living alone was no longer a good idea. And our family agreed to move him into our home.
The next few weeks are a bit of a blur. We rushed to repaint the upstairs walls, and since we had no vacant bedrooms, we hung a curtain across a portion of the upstairs loft, creating the perfect-sized space for a bed, TV and shelf for belongings. On a rainy March weekend, several of us drove to Eugene, loaded up everything from his small apartment and took him to our home. Most of the boxes got piled in our garage with plans to unpack them as time allowed.
Before he moved into our home, we had only experienced Gregory and his dementia in small doses. In some ways, he seemed the same as before — his smile and sense of humor, his interest in quality coffee and fine foods and his passion for forestry from a career with the Forest Service. Yet, at the same time, there were also jarring changes.
A man who had prided himself on cooking fine cuisine, especially Italian, had quit cooking altogether because it had become impossible to keep track of basic sequential steps. Once an immaculate housekeeper with high-end furnishings and exquisite artwork on the walls, his home was scattered with his belongings, far from orderly.
Strangest of all, I had always known him to be fiercely independent, in control of his household and personal affairs — his intellect and command of a room was honestly a bit intimidating. Now, he was completely dependent for such simple things — preparing a meal, going to the grocery store and even buckling a seat belt or writing a personal check.
I would learn in the weeks that followed that his dependence, his departure from the man I first met 20 years ago, was far greater than those initial visits to Eugene revealed. And each member of our household has many a story to share that allows us to laugh, because it’s easier to embrace the humor than to dwell on the sad, gradual loss of a father and grandfather.
We have seen some interesting food combinations lately. He has covered many meals in a coating of dried parsley so thick, you can’t see the food beneath it. Another time, he asked to eat one of the small pastries in the kitchen. My wife, who was busy frosting a cake at the time, was baffled — there were no pastries in the house.
Finally, he pointed to the “pastries” in question — garlic knots from Abby’s Pizza. So, we shrugged and put a couple of them on a plate. But he apparently thought they needed something else, so he smeared some buttercream frosting over them.
As he took the first bite, we all braced ourselves for a disgusted face, the response you would typically expect from someone combining garlic and butter with cake frosting. But it never came — he liked it!
We have also learned to expect things to end up in strange places. Just this week, we spotted an individually wrapped slice of American cheese carefully placed on the bottom right corner of a piece of wall art. Saving it for later? — who knows?
To keep Gregory entertained, we have resorted to watching shows that I frankly didn’t realize existed with our TV package, shows that he and his refined tastes would have steered clear of in the past.
One time, we found him captivated by a professional wrestling reality show. Another time, this outspoken liberal had tuned into Fox News. Once, he became engrossed with a teenage soap opera not unlike “Beverly Hills 90210.”
But what seems to work best is our family movie night. We discovered early on that action movies are especially good at holding his interest, so our evenings feature a lot of car chases, gun fights and hand-to-hand combat. His favorite movie seems to be “White House Down,” and since he rarely remembers watching it from one day to the next, we have seen it enough times now that we could quote it line for line.
These moments and too many others to list help us laugh. They give us those reprieves from the daily grind of caring for somebody who is quite literally losing their mind. We endure frustrating moments when he wants something from us but is struggling to articulate it. We hold back tears when he forgets who we are or forgets that his room is upstairs, just 30 seconds away.
We sit in awkward silence when something seemingly benign causes a moment of harmless yet uncomfortable anger. We plan our day-to-day life around his needs, which grow seemingly by the day as the dementia progresses.
The good news is we are not alone. Before this all began, I had no idea how many other people have dealt with or still deal with the same thing. And while each dementia sufferer has their own special ticks (parsley on every meal, for instance), many of us can share experiences that are all too familiar. We can laugh together, sigh, vent and lean on each other. I had no idea, but when you become a caregiver for someone with dementia, you join a club.
As regular readers of my columns know, I tend to focus on universally relatable humor, topics that are lighthearted and experienced by most, if not all, people. I poke fun and aim for laughs. So, when a few fellow dementia caretakers suggested I write about our experience these past few months, I hesitated.
Were there funny stories? — yes, tons of them. As I often say, every day is an adventure. But beneath it all is a swirling current of sadness, someone losing, piece by piece, day by day, everything that shapes their identity. Watching someone who was once so sharp and independent need help with everything from making plates of food to operating the TV remote is surreal and heartbreaking. And worst of all, we know how it ends.
But the more I thought about writing this, the more I concluded that people could benefit from it. People who don’t know what it’s like will gain a sliver of insight into caring for someone with dementia. And those who are still going through it can laugh, shed a tear and know they aren’t alone. And lastly, I hope it encourages other caregivers to share their experiences, to shine a light on something that sadly affects more families more than I had ever realized.
Most Popular
Comments / 0