My husband Jimmie’s Alzheimer’s journey
Personal Stories | November 17, 2023 | Kristine Johnston
My husband Jimmie and I have been advocating for advance requests for MAID since his Alzheimer’s diagnosis in 2011. We joined the Dying With Dignity Canada family in 2016 just prior to the passage of the original MAID law in June of that year. Jimmie was still quite articulate at that time. We spoke to a journalist from MacLean’s magazine in May of that year and our article came out in the June edition – While We Still Can by Shannon Proudfoot. Seven years later, DWDC is still fighting for expansion of MAID to include the things that were unfortunately left out in the original bill, including advance requests for MAID.
Jimmie was diagnosed in early 2011 at the age of 65. He was quite accepting of that diagnosis: “I can’t change it, so we’ll just press on.” We were quite knowledgeable about Alzheimer’s disease because we had already travelled with his sister on her Alzheimer’s journey. Lorah spent the last three years of her life in a nursing home. She would often point upwards and say that she just wanted to go “home.” She had had considerable cognitive decline, but she still knew our little circle of family and friends. She could still walk and talk and feed herself and was not completely incontinent. Quite quickly, within three weeks, she had lost her muscle strength. She was deemed palliative for the last five days and was made comfortable with IV pain medication until she got to go “home.” It was such a blessing for Lorah and all of us, too.
After his diagnosis, Jimmie and I still had eight years of a good life. We had been best friends since we married in 1966 and still are. In 2013, we travelled to Arizona, with the highlight being the Grand Canyon. In 2014, we drove to Newfoundland and back home through Labrador and Quebec. In 2015, we headed west through the northern states up into British Columbia, Canada and home again. We had wonderful visits with family and friends during our trips across Canada. Jimmie did all the driving on those trips. As the navigator, I told him where to go. 2016 brought an end to his driving, for which he was very angry at the doctor even though he did enjoy the ensuing “sightseeing” part of it.
Throughout these eight years of “still a good life,” Jimmie never did feel isolated or forgotten. His good lifelong friends and his work colleagues and customers – from 35 years of selling John Deere construction equipment as “John Deere Jimmie” – continued their close relationships with both visits and phone calls. Jimmie carried on with his seasonal chores of lawn mowing, leaf raking and snow shoveling, with decreasing efficiency, but…
Coming towards the end of 2019, I felt that Jimmie needed more care than I could give him. We had had some serious conversations about care, and he did not resist at all when a bed became available for him in January 2020 in a memory care unit at a long-term care facility near us. A couple of years before this he had said, “I’ll find a way.”
As of now, November 2023, my husband is in the last stage of his Alzheimer’s journey. In the almost four years that he’s been in LTC (with wonderful care) he has faded from 168 lbs. to 94 lbs. Unfortunately, he has not been able to find that “way” that he had talked about. He no longer knows his family. He can no longer walk. He can no longer speak – at all. He is totally incontinent. He cannot feed himself. But, in character, he does smile at a friendly face. They have to use a mechanical lift to transfer him between his bed and his wheelchair and back. He also suffers from Paratonia (all his limbs are stiff and contracted) and they give him relaxation and pain control meds to help ease the pain in his early morning, midday and bedtime care (and PRN throughout the day). The only blessing is that for a long time now he has not been aware of his current situation. He would be mortified if he knew!!! But who knows, he may somehow know. Our three kids and I keep hoping that he will get his wish sooner than later, but that is just not happening. This has been the hardest part for us in sharing his journey, to see him in such a state. I’m sure that he would have wanted to set up an advance request for MAID if it had been available. That would have made his wish come true.
In 2019, one of Jimmie’s cousins had advanced cancer. He was so afraid that his cancer and/or pain meds would muddle his brain enough to make him unable to give a final consent on the day of his MAID appointment. So, he picked a date that was much sooner than he would have preferred. I was so honoured that he called me that morning, but I sure wish that he could have chosen his own preferred time.
The passage of Bill C-7 in 2021 included the waiver of final consent which was an important change for people like my cousin, but we still need legal advance requests for MAID. The Special Joint Committee on MAID recommended advance requests following a diagnosis of a serious and incurable medical condition, disease, or disorder leading to incapacity. This is a good start, but we need the government to act. It’s too late for my Jimmie, but not for others now who want a choice and a chance for peace of mind with an advance request for MAID.
Send a letter to your Member of Parliament through DWDC’s digital action. Personalize your letter with your own experience to remind decision-makers that there are real people suffering from their lack of action.