My wedding day. My parents lived an hour’s drive from the church, so the wedding party couldn’t dress at their house. Our small apartment on the third floor didn’t suit either. Enter Nancy Smail, who offered her attractive house, a sumptuous breakfast and the loving care this young bride needed.
That nurturing act probably seemed small 42 years ago, but it defined the faith and caring of the Smail family. Over the years of raising my family, my husband’s death and life in general, I kept in touch with Nancy through friends, and eventually Facebook. That was how I learned of Doug’s diagnosis of Alzheimer’s. Nancy graciously agreed to share the journey of her early days as a care partner.
“I met Doug in grade nine when I was twelve years old. We didn’t date until he finished Queen’s University with an Engineering degree. We’ve been married 53 years. An incredibly intelligent man, he was a professor at Ryerson University for 38 years.”
What changes did you see in Doug that started to cause you concern? Did he see them, too?
He began to have trouble with mechanical things that used to be easy for him. We had to sell our cottages as Doug couldn’t figure out how to maintain them, a task that came naturally to him before as a mechanical engineer. He wasn’t aware and still isn’t, attributing all the changes to ageing. He had a tremendous intellectual reserve which allowed him to cover up and appear normal to almost everyone.
How long from the first time you began to notice issues until diagnosis? Doug had a stroke in 2006 and our family doctor quickly diagnosed him with Alzheimer’s and gave him five to seven years to live.
Tell me about the diagnosis, and your reactions, as well as those of Doug and your family. I was in disbelief at first. The doctor didn’t tell Doug as he said he was concerned Doug would give up hope. My children didn’t believe me. My daughter, Dawn, who is a nurse, went with me to the doctor and had the diagnosis confirmed.
Our doctor’s refusal to tell Doug caused so many problems. My family wouldn’t believe me, and that was difficult. When I broached the subject with Doug, he would say, “Well the doctor didn’t tell me.” I understand the doctor didn’t want Doug to lose hope, but he didn’t consider the effect of his decision on other family members. I don’t agree with his decision as it prevented Doug and me from strategizing for the future.
How did you find taking on the role of a care partner as well as a wife? Did they conflict in any way? As the disease progressed slowly, it wasn’t difficult at first, but as time passed my roles changed and I was more involved in his care. This caused some tension. I first took over paying all the bills, and this was stressful for Doug. He suffered a TIA* (see explanation below) as a result of his anxiety. I also eventually took over all of the driving. It affected our lifestyle in many ways, and at first, I was resentful. However, by God’s grace, I have accepted this as a gift from God to fulfill His plan for Doug and I and our marriage.
I was in denial for a long time. Learning to accept came slowly, and I have been losing my husband by degrees for many years now.
What was the role of your friends in your journey? I told my friends immediately as I needed their support. They were there for me from the beginning, eager to help in any way they could. They began to accompany me on trips to do activities with Doug and relieve me. I appreciated the much-needed break.
How has your faith affected your experience? I can’t say how many times in a day I cry out to God and say, “Help me, Jesus!” Without my faith, I wouldn’t be able to carry on and would have suffered burnout many years ago. God told me at the beginning of this journey that He would be with me throughout, and He has been faithful to His promise.
What advice would you give to someone just starting out? What supports were the most helpful? Learn everything you can quickly and connect with solid supports like The Alzheimer Society. Let your partner do as much as they can for as long as they can, and don’t be too hasty to take over for them. Doug drove until recently although some thought it unwise. We also took a major trip recently against some people’s advice due to Doug’s profound memory loss. He did get lost at one point, which was scary.
Be open and honest with family and friends and don’t be afraid to tell them that the journey is hard. I recently said, “I am learning joy in the midst of my pain.”
*”Transient ischemic attack (TIA) is like a stroke, producing similar symptoms, but usually lasting only a few minutes and causing no permanent damage. Often called ministrokes, a transient ischemic attack may be a warning. About 1 in 3 people who have a transient ischemic attack will eventually have a stroke, with about half occurring within a year of the transient ischemic attack.”1
1. https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679
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