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Love Is the Key

Collecting dust on the rustic wooden shelves above a sturdy workbench in my basement are models of history-making ships, spaceships and military fighter planes. There’s an enormous replica of the Space Shuttle Atlantis, complete with iconic NASA logo and a massive orange fuel tank nestled next to its launch tower. Not far off is a black-and-brown plastic replica of the forty-four-gun frigate USS Constitution, its hull held together by two gigantic bolts.

Their maker has been gone for four years, but I can’t throw them away. They hold the precious memory of my husband Don, who spent hours gluing, painting and sometimes not so patiently putting pieces together.

He wasn’t an expert model maker; they aren’t museum quality. He was forever complaining that pieces were missing and insisting that I contact the model company to get new parts. I believe that he found comfort in doing something that revived memories of his childhood—a childhood that included stealing wood from a nearby construction yard to build a boat in his parents’ tiny basement. (There were repercussions for that.)

I loved to watch Don sitting on his stool, bent over his dilapidated drafting table held together with wire and duct tape, and wearing a black-and-white checkered apron to protect his clothes from paint and glue.

I still have that antique table. As a skilled draftsman, and a manufacturer’s representative for more than fifty years, Don used it to study the blueprints drawn up by contractors developing bids for projects such as hospitals, hotels, schools and office buildings.

When he first asked me to take him to the local hobby store to buy models, he’d been living with vascular dementia for more than six years. He didn’t read the detailed instructions that came with each model; instead, he dug deep into what memories he had left. And when a model didn’t quite come together, we were off to the local hardware store to buy bolts—as we did for the USS Constitution—or some other piece of metal or wire to fasten things securely.

Our conversations about this were always the same.

“The model company made a mistake,” he’d say irritably. “They didn’t put all the pieces in the box.”

Annoyed, I’d reply, “I’ll try calling the company at their 800 number, but you know it’s extremely hard to get through. I’ll send them an email.”

The companies never responded to my calls or emails. Magically, Don would manage to complete the model, never mentioning the missing parts again.

There were days when it was difficult to find that intelligent person inside his head—days when he couldn’t remember the date or the year or me. Honestly, many days were frustrating.

Once, at a first-time medical appointment, the doctor asked Don who’d come with him. “My girlfriend,” he replied.

Another time, reminiscing about growing up in Detroit, he told me, “I’ll take you there one day to meet my family and friends.”

After watching a documentary about the 1960s Detroit race riots, he angrily insisted that I call a long-dead friend of his: “Tell him to stay away from downtown Detroit!”

At times like these, when he couldn’t be convinced of reality, I would fake making a phone call to give him a chance to calm down.

Despite his illness, he never forgot his wedding band. He wore it every day. I took it from his finger just before the funeral home removed his body.

Over the course of his painfully slow decline, I had to dig deep for compassion, patience and kindness.

Four years after dementia had set in, Don decided to design a new home for us—and homes for other family members as well. Although I resented the cost for large-scale drafting paper (hard to find in a digital age), I was relieved that these projects would often fill his waking hours. Multiple designs were drawn; he was completely unaware that they lacked critical architectural details and weren’t drawn to scale.

With each design, he insisted that I drive him to a nearby business-supply store to make copies on blueprint-quality paper. The blueprints were then rolled up and stacked vertically, leaning against his drafting table.

Some family members received their “plans” professionally secured in a cardboard tube. This sparked telephone calls from those who lived far away. My daughter and son-in-law, who live close by, responded with a gift: a 500-foot roll of industrial-strength drafting paper, miraculously found in a commercial dumpster.

“This should keep him busy for a long time,” they said, smiling broadly.

I read all the books written about making this journey with a loved one afflicted with dementia. But no amount of reading can prepare you for the reality of living with someone who is losing the ability to remember, to comprehend and to engage in conversation.

Entertaining Don was a challenge. He couldn’t follow the characters in movies or plays and often found movie soundtracks annoyingly loud.

Planning meals grew difficult because, early in his disease, he began losing his ability to swallow and was constantly at risk for pneumonia if the food were to go into his lungs instead of his stomach.

A speech pathologist recommended a feeding tube—but it was not to be. Over the years, we visited several speech pathologists and many doctors. Don’s diagnosis was always the same, but he never accepted his diagnosis, nor discussed it with me. And he remained resolute about not wanting to live with a feeding tube. As a result, I was constantly trying to find ways to make him high-calorie, easily digestible foods—mainly, lots of smoothies.

Dining out wasn’t easy either. While dining with friends at a new Italian restaurant, I saw Don staring silently at the unfamiliar menu with its endless options.

Using a tip I’d learned at an Alzheimer’s Association support group, I asked: “Can I help you find something you might like?” Together we selected a pasta dish with enough sauce to make it easy to swallow.

Often, I’d take him shopping with me to get him out of the house. At a local department store one afternoon, I lost track of him when he wandered to the back of the store.

Fortunately, it wasn’t crowded, and I quickly found him–in the home-decorations section, which he’d never frequented much in the past.

He was holding a large wooden wall hanging.

We don’t need it, was my first reaction. We don’t have wall space. It doesn’t fit our décor. It’s a dust collector!

Then I took a moment to read the words:

“Love is the key to happiness!”

Don was quiet as I struggled inwardly over whether or not to purchase the wall hanging. Words weren’t needed: He just gazed at me with that special look on his face that said I love you—a look I knew well, but rarely saw now that dementia had rendered his face and eyes expressionless.

Together, we walked to the cash register.

The wall hanging is still displayed above a cabinet in our living room—right where I placed it when we brought it home from the store.

Ann Beach is a retired journalist and public-relations professional. She now uses her writing skills as a community volunteer, contributing articles to local newsletters and other publications. “Throughout school, my teachers complimented my writing, but I never considered a writing career until a professor suggested journalism. As a newspaper journalist for nearly twenty years, I met hundreds of fascinating people and relished the challenge of researching and writing investigative pieces, several of which received press awards. Upon retiring more than ten years ago, I planned to start a freelance career, but that didn’t happen until recently, when a friend encouraged me to submit this story to Pulse. I hope that readers will find it interesting—and that it will help other caregivers realize that they’re not alone.”

Comments

5 thoughts on “Love Is the Key”

  1. Ann, this is so spot on. Thank you for sharing your feelings of frustration, impatience and compassion. It made me stop second guessing myself while caring for my Mom who has dementia. So well written.

  2. Nolan Snider, MD

    About 7 years ago, I transitioned out of my primary care clinic practice into a Nursing Home (Long-term care/post-acute care) practice. I have provided care for dementia patients throughout my career, but now it is a much greater part of my practice. I have a great deal of sympathy for those who are caring for their demented loved ones at home, often alone. It is a 24/7 heartbreaking struggle. Thanks for sharing your story. The wall hanging is priceless in that it showed that despite the deterioration, he still remembered that he loves you very much.

  3. “They didn’t put all the pieces in the box.”

    A fitting metaphor for dementia.

    Ann, I appreciate your honesty in balancing the burden of caregiving with the missing pieces of compassion, patience and kindness. Thank you for honoring both of your stories here.

  4. As a Physician Dementia is difficult to treat. I learnt a lot about the disease from this article.Thanks for being so kind and caring.

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