Holding on to hope and faith in the face of early-onset Alzheimer’s

Cars on the roller coaster of life can range from the comfortable and secure to the cramped and rickety to everything in between. When riding in the Alzheimer’s car, the turns are sharper, the slopes are steeper, and the loop-the-loops come when you least expect them. You have to brace yourself . . . a lot.

Experts say the onset of dementia occurs many years before the diagnosis. Observing his behaviors, I know this was true with Steve. I remember when he worked himself into a frenzy simply over a missing cell phone charger. Another evening, he angrily hurled an object across the room with little regard for what or who might be in the way . . . It hit me in the head. Shortly before his diagnosis, when he was again berating me for something or other one day, I snapped, “You are not going to do to me what your father did to your mother!” That was not my proudest moment. Of course, I was referring to my father-in-law’s bizarre behaviors, which were brought on by Alzheimer’s and literally stressed my mother-in-law to death. I did not grasp then what I understand now about this cruel disease. And I was unaware Steve had it. All I was certain of was that these were not the behaviors of the man I married nor of the man our family, friends, and colleagues knew him to be.

Did I make my share of mistakes? Without a doubt . . . and more than my share. As they say, “You don’t know what you don’t know.” What I didn’t know about Alzheimer’s disease at the beginning could fill a book and certainly has filled many. I’ve read some of them, trying to become a better caregiver. And I did learn over time. Still, challenges often presented themselves precisely when I forgot to use what I knew. Plus, there were occasions when Steve did not respond in textbook fashion. Only the Lord’s guiding hand kept us from getting off-track and derailing completely.

Along the way, I met many Aha! moments, those welcome times of revelation and clarity. With them came plenty of Huh?, Uh-oh!, and Oh no! moments, plus the blessing of a few times that can only be described with a good-humored Ha-ha!

The Huh? moments were generally a guessing game of verbal charades as Steve increasingly lost his ability to find the right words—specifically, nouns.

About ten minutes from home, on our return trip from Pearland, we stopped at a favorite café and picked up two boxed lunches to go.

As we continued our drive, Steve asked, “How do we open the boxes?”

“Do you mean our lunch?” I asked.

“How do we get to the boxes? The boxes for Friday and Saturday.” He was becoming restless.

Finally, it dawned on me. We were approaching home, where his world now revolved around his television. The “boxes” were the rectangles of the television guide timetable in the newspaper where he obsessively spent hours underlining and circling all the shows he wanted to see. He was anxious about what he could watch over the weekend.

A month later, our travel agent friend was meeting with me in our kitchen to finalize our Hawaiian vacation plans.

Steve interrupted us, asking impatiently, “So how do I manage?”

We were puzzled. Manage what, exactly?

“The schedule,” he said. “It’s in a box.”

Aha! This time I understood. “Oh, you’re talking about the TV! We can work that out,” I tried to reassure him.

But like so many things, that “we” became “I” when he no longer could comprehend when his favorite shows aired, how to record them, or how to find and play back what had been recorded.

Fortunately, we got a little break from all that in Maui.

Unfortunately, in addition to those involving verbal charades, there were countless other Huh? moments to come. Steve desperately wanted an extremely expensive analog watch, when he could no longer tell time. He wanted the newest, best-selling novel, when he had lost most of his ability to read. And, of course, he wanted the most updated television device available, when he could no longer learn how to use it.

As the name suggests, Oh no! moments were the most troublesome.

On a crisp, cold February afternoon, Steve and I met Angela and a friend of hers at a restaurant for a late, leisurely (or so I hoped) Saturday brunch. We had not had a good, long visit with our daughter since Christmas, and although her friend was temporarily living in our guesthouse, we seldom got the chance to chat with her.

Our server was refilling our glasses when Steve started looking nervously at the watch he habitually wore. I was certain he could no longer read it correctly. On numerous occasions, I had asked him if he would like a digital watch, and always his answer was an emphatic “No!”

“Honey, is there somewhere you need to be?” I asked when his foot began tapping impatiently.

With a roll of his eyes, he answered, “I have to go.”

“Where do you have to be?”

“Four o’clock,” he responded.

“What happens at four?” I wanted to know.

Repeatedly, he poked at his watch and replied in exasperation, “Four o’clock. Soccer. Soccer comes on at four.”

“Well, Steve, it’s only two thirty. We have plenty of time to be home by four.” I reminded him that our house was only ten minutes away. “Can’t we just enjoy each other a little while longer?”

“I’m leaving now!” he announced.

“We don’t even have the bill yet, and the car is valet parked. How are you going to get home?” I asked in a foolish attempt to reason with him.

“I’ll walk!” he said as he stood, put on his coat, and rushed out the door.

I quickly paid the bill and called for my car. As I drove up and down the surrounding streets looking for Steve, I called 911 from my cell phone. The police dispatcher on the line advised me to go home and see if he showed up there.

Meanwhile, Angela in her own car followed the route she assumed he would take and, thankfully, found him three blocks from our house.

“Get in the car, Dad,” she said, and he did.

From that day forward, whenever Steve wanted to leave, we left. As much as possible, I determined to do what he wanted to do when he wanted to do it. I may have been the caregiver and decision-maker, but the disease was now in charge. Time to brace ourselves for an even wilder ride.

Our roller coaster’s unanticipated twists and harrowing curves eventually led us to a memory care facility.

We had turned another proverbial corner in the progression of the disease. And although there were dips in the road behind and ahead, there were high points as well.

Some bits of language that were not yet tossed in the word salad bowl were savored for a long time. “I love you!” Steve said easily and often, not only to me but also to his favorite members of the staff. Occasionally, I was on the receiving end of “You’re so beautiful, Mama!” He affectionately began calling me “Baby Girl,” a name that stuck and brought smiles to the care team’s faces, as well as to both of ours. Many times, he proclaimed to them, “Kathe is my life!” In those few, precious words, not only was I reminded of his devotion to me but also of my profound responsibility as his wife.

On many visits, I would search the halls for my husband only to find him happily engaged in chair kickball, patiently attempting to paint a flower on canvas, or outside on the patio enjoying an ice cream social. The activities staff truly did their best to engage Steve in every possible way.

I also learned to bring my own brand of entertainment. Sometimes it was in the form of food—a yummy, chopped barbeque sandwich here or a delectable piece of Black Forest cake there. Regularly, I took one of the scrapbooks I’d made following our trips to Alaska, Italy, and Hawaii to share with my old travel companion.

It didn’t matter how many times we looked at them—for Steve, each time was like the first. In addition, I created a special photo book, featuring pictures of his family spanning six decades. It included some priceless, old black-and-white photos, as well as newer color ones of Steve with his brother, parents, grandmother, our children, and me. The cover read Steve Goodwin: This Is Your Life, and every time I showed it to him, I guarded it with my own. It was too precious to lose.

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