(Sensitive Theme: Dementia)
Never before had I thought about life being like a train ride. Twelve rides each year! Sometimes, it’s necessary to get a different perspective on a situation for one to discover a means for coping with it. My story is ending with the caboose on this trip, not necessarily the last one of my life.
Over my seven decades of life, thousands of individuals have passed through the cars of my train ride. Some have been repeat travellers, while others had a one-way ticket. Every one of them, however, left their imprint, lesson, hurt, gift or symbol of gratitude. My focus this ride is on my second husband.
According to mooremuseum.ca, a caboose was like the office on wheels. More than that, it carried “a brakeman and a flagman.” Their purposes were to “slow down the train,” as well as being “on the lookout for signs of trouble.”
For almost a dozen years, my husband, Al, and I enjoyed life. Music was a huge part of it, and going to karaoke almost weekly was the highlight of each Saturday. My jovial husband, who, by the way, looked forward to putting on his Santa suit every December to greet children at events, has lost his sparkle. Laughter is infrequent. Singing is even less than that. The sparkle in his eyes is clouded with a blank stare at times leaving me to wonder what they see.
At first, outbursts of anger that surfaced out of nowhere left me totally baffled. The bathroom door that wouldn’t stay open after I left the room became a source of constant irritation for him. As a taxi driver for over 40 years, he knew every street in the region and beyond. Then one day I realized that he had to use the GPS every time he drove - even to go to the grocery store a mile away. The puzzling fact that he had to set it for his return drive back home, when all he had was a left turn and then two rights, left me totally confused. The huge warning flag came the weekend that we went to visit my family, who live a four-hour drive away. We arrived and unpacked our vehicle. When it came time to go to bed for the night, Al didn’t have his suitcase. We searched the car - no suitcase. I remembered that he’d put clothes on our bed to pack, but I hadn’t actually watched him pull out his suitcase and fill it. There we were - absolutely no extra clothes, toiletries, etc. for him. I stood there in disbelief! He seriously had no clue as to where his belongings were. This was my RED flag!
The shock and wonder about what was going on with my husband overwhelmed me. Who was this man that I had married? It got me thinking. Our shared interests in getting together with friends, going on picnics, to dances and karaoke had stopped. With all that was going on, I’d not previously put the pieces of the puzzle together. What it was beginning to show me, left me numb.
Upon our return back home, I prepared a list of the observations I’ve already mentioned, along with many more. The more I delved into my memory bank, the bleaker the picture became: repetitious phrases, incontinence “accidents,” no longer being social among church members, no longer telephoning his children or siblings, not changing his clothing and handing me his cell phone because he couldn’t find his contacts or the calendar or the phone symbol. Had I really been in such denial that I was missing all of the clues he’d been sending?
An email to our physician with my list of concerns promptly resulted in an appointment. Blood tests, CT Scan and testings performed by a nurse and an occupational therapist revealed dementia. At least now we had something to work with, though the diagnosis broke my heart.
It was the test conducted by the occupational therapist that offered me the most shocking revelation. Al was to draw the face of a clock. He drew a circle, and then stared at it. Slowly, he added 12, 3, 6 and 9 in the appropriate places on the circle. After a couple minutes of staring at it, he shook his head saying, “I don’t know what else to add.” The blank look on his face scared me for him. He looked so lost, sad and embarrassed. It was then that he was told that he could no longer drive a vehicle. Al was devastated. Driving had been his occupation for just about all of his adult life. He’d loved being of service to others; chatting with them; helping with luggage, groceries, etc. and becoming friends with many over the years.
There we were in a totally new phase of life - one which we had not asked for; one for which we had not expected or anticipated. On this caboose ride, the train we were on definitely slowed way down, almost to a halt. The red flags were flying high and they could no longer be missed, or denied.
How long this ride will take and where it will end, only God knows for sure. What I know is that I married this man “for better or for worse; in sickness and in health, until death do us part.” We’re together for the long, or short, ride, whatever it may be. When I look into his eyes, I know that the man I married is in there. He’s often scared. He depends on me for everything, just like my babies did. When he watches the same television shows, asks what day it is, wants to know the day’s schedule - repeatedly, I quietly answer his questions. One day he won’t be here any longer. It’s the reality that I am now facing. Whether it be in a year or five or six years, our time together is now ticking away for sure. Every compliment Al gives, assistance he offers when making meals, loads of laundry he washes and dries all have an importance that will be indelible on my heart. The man that I married is in that body, and I am forever grateful for God’s having our paths cross. Once this caboose reaches its destination, God will let me know what direction my life is to take next. First though, I will say to Al, “Thank you for all the love, laughter and happiness that we shared," as he enters his eternal life. I will then bid Al, “Bon voyage."