Electra is still parked behind the hotel awaiting my flight instructions however, as for me, I remain in 2001, daydreaming about the song, “Side by Side,”

It was during that concert, shortly after Dave had been diagnosed, that I chose a different road — ya know, the one less traveled. My new road was to become one of separation; separation from Dave, separation from friends, separation from laughter. and, indeed, a road shadowed by insecurity. 

Hmmm … how does the song go? 

Sing A Long: “Oh, we ain’t got a barrel of money”

ME: Well, actually we did have a barrel of money, mostly in Dave’s 401K investments. But how long would that barrel last when Dave was no longer working and no longer able to contribute to its growth? And how long would that barrel last when the financial demands of Dave’s illness was growing exponentially?

Sing A Long: “Maybe we’re ragged and funny”

ME: Not yet, but what happens when Dave can no longer groom himself, worse yet, what if he refuses my help? And, what about me? I loved expensive clothes with fine fabrics. Would I need to shop at thrift stores or make my own clothes again, like I did when we were first married?

Sing A Long: “But we’ll travel along singin’ a song, Side by Side.”

ME: Yup we would! After all, I couldn’t accept the various choices suggested by several professionals. Dave had only been 54  when diagnosed and, in my opinion, too young to be institutionalized. Besides, I wouldn’t consider placing Dave in a locked Alzheimer’s unit given my license in nursing home administration and expertise in unfunded and often ignored regulations. Required staffing ratios in 1996 was one nurse to  seven residents during the day and one nurse to ten residents during the night. With such stats, how much care, or lack thereof, would Dave receive? Divorce? Nope, that wasn’t the direction my heart  chose. Instead, I joined Dave on his road embarking on this difficult journey together. And, we were a couple of perfectly paired vagabonds, he with the very cognitive/communication disorder in which I specialized? For me, it would be a true busman’s holiday.

Sing A Long: “Don’t know what’s comin tomorrow. Maybe it’s trouble and sorrow” but we’ll travel the road, sharin’ our load side by side.”

ME: I didn’t need a crystal ball to know our future would be one filled with trouble and sorrow. I knew because I had already spent many professional years observing couples in similar situations. I knew because I had already witnessed in others a variety of complications and challenges that Dave and I might face. I wondered which ones we would stumble upon on this, our new road.

Sing A Long: “Through all kinds of weather, what if the sky should fall?”

ME: Oh boy, the sky fell many  times. Like the time Dave literally ‘fell through a crack’ … the one between two single beds in his downstairs bedroom while I slept soundly upstairs. In the morning, I couldn’t find him, until … I heard a faint moan coming from under his bed! Yup, Dave had fallen through that crack and there would be others.

Or how about the time Dave disappeared? I didn’t hear the house alarm trigger when one of the outside doors was opened. I was in the kitchen washing dishes and thought Dave was still watching an old football game on TV. When I went into the family room — no Dave. I looked all over the house, inside and out — no Dave. I rushed to the car, backed out of the garage, hit the road and began driving around our neighborhood  — still no Dave. Finally, I spotted my cold, scared husband walking up a dangerously steep and curvy hill a few blocks from our home. As Dave wandered aimlessly, cars, with horns honking, passed him by. I heard one person yell, ‘Hey buddy! Are you crazy? You’re gonna get yourself killed!’ I pulled over to the side of the road, put my car blinkers on, got out, and crossed the street to meet Dave on the other side — then, after gently coaxing him into the car, I drove us home.

Sing A Long: “Just as long as we’re together, it doesn’t really matter at all.”

ME: But it DID! As social invitations dwindled, fair-weather friends dropped out.  Fortunately, Dave and I were blessed with a small group of friends who remained inclusive — well, sort of. Inclusion was successful if the situation was passive, for example, attending a concert or going to a movie. But when socialization became active, as it did during conversation, inclusion was unsuccessful. Many conversations revolved around vacations, recent or otherwise. When I chose to join Dave on his road, vacationing for us was over. And although I was left with travel memories, his were gone — until I had an idea! 

How about virtual travel? So, using a large USA map spread out on our kitchen table, I asked Dave to choose a place and point. I then Googled wherever his finger landed, typed in the name of the state and/or city on the computer in a font size he could read and so began our virtual vacation. Discussion was structured using the same framework I described in my award winning  ASHA article. Additionally I asked yes/no questions about the place we were visiting. It was fun and became even more so when I copied and printed pictures of selected vacation spots from the computer, taking pleasure when Dave handed them out to friends during vacation conversations. Keeping to the vacation theme, I also created at least one meal of the region’s cuisine. It was high fives all around and one example of an answer to the HOW question posed at the end of my previous post.

Electra will leave for parts unknown in the next blog post, so let’s do our own reminiscing and Sing Along before changing the channel. Be sure to turn on the radio below …