“I’d like to go golfing,” Bill said. The sun was shining, the grass is green and all kinds of flowers are in full bloom, including our spectacular, blood-red, Camelia Roses. Who wouldn’t want to be outside doing something you enjoyed while you soak all that up? Trouble was, his Alzheimer’s has progressed to where he cannot find his way around the course without a buddy to guide him. He has a buddy who golfs with him, but he lives in New Jersey from September to May. And I can’t golf. So, Bill had to be content with just going outside and weeding flower beds.
When we were young parents and involved in working, raising kids and taking care of our myriad critters, we didn’t think about networking. Our work lives and home lives were quite separate. Outside work-related social events, we didn’t socialize with our work mates. We kept in touch with high school and university friends via letters (the old-fashioned, hand-written kind), cards, and the occasional phone call. If we happened to travel back to our old stomping grounds, we visited with those who were still there, but that was rare. Even rarer, some decided to travel our way during their vacations, and stopped with us for a day or two. New friends tended to be people whose kids were involved in the same activities ours were and, as we moved to new jobs in new locations, we eventually lost touch with them. We still keep in touch with school-days friends, but none of them has ever lived where we lived. Continue reading
As Alzheimer’s progresses, it gets harder to find fun. One activity after another, Bill’s world shrinks according to what he (and I) can cope with doing. Last summer, he paddled with the Brave Hearts Dragon Boat Team. He loved being out on the water, and participating with the people on the team. He has always been strong, and has paddled canoes off and on over the years since he was a child. Paddling in unison with anywhere from nine to nineteen other people is a different skill, though, and took some learning. Fortunately, the team coach, Calvin, was always patient and encouraging. The first competitive event of the year was ‘Race the River’ right here in Campbell River. And that was when a whole new set of challenges appeared.
While I watched the event, it became clear to me Bill needed very strong support to participate. He needed someone to help him suit up, and to get to the start line for each and every race. Once when the team was called to the start, he headed off to look for a washroom and then couldn’t find his way back to them. He was rounded up, the team got there in time, and everyone enjoyed the day, but it was challenging. It let me know he would not be able to travel with them to other venues to compete unless I could go with him, and we would have to drive separately because there was no room on the bus for extra passengers. So, he continued to practice on Tuesday and Thursday nights, but he did not go to race meets, and that had other consequences. Sometimes it meant the Brave Hearts didn’t have enough paddlers to compete, and even when they did the dynamics in the boat were changed because he wasn’t in his spot. That presented challenges for them. Continue reading
“Do this,” our instructor, Teepa Snow, said, putting her hands on either side of her head. It was a workshop designed for professional caregivers—those working with dementia patients in facilities. But when I heard it was being offered I called the organizers to ask for permission to attend because I felt like I needed to know as much as the professionals know about looking after someone with dementia, and I believe in education. Permission was given to me without hesitation.
Teepa Snow is one of the top educators and advocates for positive care of people with dementia in the United States. For over 30 years, she has worked as a non-traditional occupational therapist in a wide variety of settings. She has provided direct care, consultation, and leadership in numerous settings and organizations, and has developed a best care practice philosophy reflective of her life-long journey. Continue reading
The following story was written by my daughter, Stephanie. It describes one of her first encounters with palliative care in her then-job of Home and Community Care Nurse. Many of the things she learned during her time with this family are the same things caregivers learn in caring for their own loved ones as they travel the Alzheimer’s path. It’s a beautiful story, poignant and sad, and also filled with strength and joy. It’s a true story, but the names have been changed to protect the privacy of those involved.
Dying and Death
It was spring and the flowers were blooming along the walkway. The flagstone path was a gentle curve, with bright green moss between the stones. The heritage home exterior with its columned, wrap-around porch looked grand and was carefully tended with fresh blue and white paint. Together the grounds and house were picturesque and beautiful.
Inside the house, an elderly woman who was a wife and mother was in the process of dying. I am a nurse who travels to homes to support individuals and their families through the process of dying and death.
I rang the bell and was told to, “Come in.” In the hall, I took off my shoes, then walked into the large parlour where my client, Sheila, was on a lounge-turned-bed. She was a small, frail bird, dressed in a light cotton gown. Her long, grey hair was strewn across the pillows, her head propped at an awkward angle. She did not look comfortable. She was grey in colour and her face was slightly tense even though her eyes were closed. Her grown son was sitting across from her on an old Queen Anne’s couch, bent over a laptop computer set on a table in front of the couch. Someone was in the back of the house, doing dishes I assumed. I could hear water running and the clink of dishes in a sink. Continue reading