When it began, by Arlene Macfarlane

I fell for the handsome young Scotsman who came to Canada to pursue a career in banking. It must have been reciprocated because we’ve been married nearly 67 years. Actually, we met in my living room, but that’s another story! He was an awesome soccer player and was once scouted by a professional English team but was persuaded not to follow up on that by his mother and bank manager in Scotland. He chose instead to come to Canada “for two years to make his fortune” but instead met me – so much for that plan! He was also an incredible dancer and we spent many happy evenings “tripping the light fantastic” in the company of our many friends. All my gal friends loved dancing with Jack.

We raised two sons and a daughter and enjoyed a happy family life. Along the way Jack coached our sons at soccer, our oldest son coached his twin sons, one of whom is now coaching his own twin sons. The soccer gene rules!! Of course, there were many other activities enjoyed by the family but one of my favorite things about raising these wonderful children was watching each one of them develop a great sense of humour.

One day, Jack and I went shopping at a large local mall and we parked in the overwhelming parking lot. When we came back to retrieve our car, we had a minor argument about which way to turn in the lot. He insisted we go in the opposite direction to what I was thinking but in the end we went his way. After a considerable time trying in vain to find our car, we enlisted the services of a parking lot attendant to locate it. Sure enough, it was where I thought it would be and although I didn’t think too much about the incident at the time, looking back I realized it was the start of the decline of his sense of direction, which eventually became a bigger problem.

After some testing, a stroke was ruled out, but we were given a diagnosis of MCI – mild cognitive impairment. Through the years it became less mild. Before the onset of MCI my husband had taken on the role of “surrogate” dad to our granddaughter who was growing up without a father. She and her Mum lived with us off and on for several years and he adored her, as we all did. They spent countless happy hours together. Several years later, we suddenly lost our daughter, devastating me and our granddaughter who was now left with no parents and no siblings. By this time my husband no longer had any short-term memory, and, in the end, I mourned alone over the heartbreak of losing our daughter, both Jack’s sisters and three of our closest male friends all within a few months. Dementia robbed me of Jack’s comfort.

One particular conversation from this time sticks out in my memory. I had left our communal bed and had been sleeping in a reclining chair in our living room for some weeks because Jack often seemed to be dreaming about playing soccer and apparently I was the ball. I was nearly kicked to the floor on more than a few occasions and eventually got to know that when his legs started to move like heck I should move like heck and get out of the line of fire. Of course there is likely a more accurate medical description like restless leg syndrome but to me it was Jack preparing to score a goal. One night I woke up to the sound of someone talking quietly in his bedroom and went to the door to listen. Sure enough it was Jack's voice so I opened the door and went quietly in without turning on the light. I knelt beside his bedside and asked him if he was alright and said I thought he may be dreaming. He said he wasn't and that he couldn't sleep. I can't recall every detail about our conversation, though I remember having to put my ear close to his mouth to hear him as he was very soft spoken. He told me several times he was looking for our daughter. She had passed away a few years before but he was never able to grasp that. I tried to be vague but eventually explained to him why he couldn't talk to her. He got a little upset and asked why he hadn't been told so I said he had been but he had forgotten. We talked a little about her and that seemed to appease him. He then said he was worried about a lot of things and I said I also worried about things when I went to bed as do a lot of people. I reassured him that he didn't need to worry about anything because I was there and we were together. He replied "But we're not really together, are we?” I said that we were and had been for 64 years. He told me he loved me more than anything else in the world and didn't want to lose me and I said I felt the same about him. Then he asked, “Nothing is ever going to be the same again, is it? I kept holding his hand to reassure him, I knew he wasn't dreaming as he was having very lucid and legit thoughts. Then I finally said "Goodnight, have a good sleep and I'll see you in the morning " which I said to him every night as I gave him a little kiss, he replied "I'm not sure if you will." That really rattled me and I asked if he had a sore stomach or a headache, but he said no. He added he didn't want me to have to worry about anything. Then he gradually went back to sleep. I stayed with him for a while before going back to my bed/chair but left his door slightly open so I would hear if he needed me. I stayed awake for a long time but didn't hear another peep out of him until a care-aide came to get him up and showered the next morning.

We never had a conversation like that again, but I cherish the "midnight miracle" we shared that night.

A few years prior to that, I had moved us into an independent living facility, and it was a couple of my new friends here who proved to be so wonderfully helpful to me. I had a health agency giving me some daily help and eight hours a week of respite, but the latter was ultimately cut off due to financial restraints in the health authority. Though his care was getting harder for me to manage, he was always very cooperative when someone else was supporting him. My new friends often offered to give me a break and I so appreciated their kindness. As well as having him under the care of a gerontologist for several years I attended a support group until I felt I was all talked out. It seemed everyone else had some resolve, their loved one going into care or sadly the passing of many. My situation never changed. I kept Jack at home with me for nearly 13 years after onset even though I was physically and mentally tired.

I always felt I needed to take care of him no matter how many problems I faced but after he had a stay in the hospital the choice was no longer mine. It was decided by the doctors there that he needed to be transitioned to a long-term care home . It was a relief in a way, though often overshadowed by a strong feeling of guilt that he was no longer living with me. I could never have asked for a kinder, more considerate husband and father to our children. A very smart, (I always said he was the smartest man I ever knew) gentle soul who would do anything for his family. Luckily, he was placed in a long-term care home only four blocks from where I live and because we are fortunate enough to have a very accommodating, caring private driver here, I have been able to visit him on a regular basis at least three times a week. Our oldest son has been so faithful and visits him every weekend, and takes him to the hospital any time he needs some testing done. Our youngest son, who lives in Montreal, visits whenever he’s in town, often with one of his daughters. Unfortunately, those are the only visitors Jack gets these days as most of our friends and the family members who would have wanted to spend valuable time with him have passed on.

The staff who support Jack at the care home find him gentle and agreeable to whatever is asked of him. His favorite activity, other than sleeping most of the time, seems to be taking part in a sing-along and he can still belt out a song even if he can’t always use the spoken word. I try to be there every week for the musical interlude in our lives and just love seeing and hearing him enjoy the music. Every time I’m there at least one staff member will ask him “who’s that woman” as they point to me. If he stays awake long enough, he will answer “my wife”. I find it is taking him longer now to stare at me and come up with the right answer, but I want to believe he does still know me, and perhaps our oldest son, though no-one else. Recently, a young man who gives Jack physio and enjoys interacting with him asked him how long we had been married. Jack, who only speaks in whispers when he talks at all, said loud and clear “too long!” which of course brought forth gales of laughter from everyone who was in earshot of that response – me included. I believe I have only endured this whole situation because I have relied on humor to get me through years of non-humorous events. In fact, I have done a lot of humor writing and although there is no Pulitzer Prize on the horizon, I have had some bits and pieces of “funny” stuff published as well as the pleasure of creating greeting cards, some with my artistically talented sister, and light-hearted tributes to family, friends and fellow residents. So - - - I was able to enjoy and not take offense to his latest response to the “who’s that woman” question. He looked at me for quite a while and then said, “I think it’s my wife’s mother.”