ON HOPE AND AGING

Here is one difference between working with seniors—as I so often do now—and working with younger people. When you work with younger people, you are supported in hope by the unspoken assumption of possible continuous improvement. When you work with seniors, you are challenged to have hope while, at the same time, acceptung the premise that people may already have experienced the best moment of their lives. The hopes of older people are not so much about achievement. It is less about what they hope to do and more about how they hope to be treated. It is less about who they hope to meet and more about how those they already know will show loyalty to them.

THE VIDEO SHOOT

FIREFLY DIGITAL “Since just after the time of the dinosaurs the folks at Firefly started producing videos. Over 400 videos in the last 10 years. The exciting thing is we’re just getting started and although the technology is changing at a rapid and exciting pace the core of our work remains the same – it’s all about story telling.” What a pleasure it can be when you come, unexpectedly, into contact with somebody who does a job exceptionally well! It can happen almost anywhere—in a bank, in a tangle of leaking basement pipes, over a wasps’ nest under a veranda, in a counsellor’s office, or in a classroom. It can even happen on a video shoot—as I discovered last week, when I worked on a video with Tracy Bennett from Firefly. I confess, my expectations were low. I have been involved with a few video shoots in the past. Some of them were worse than others. In general, I’d label them in the category of inconvenient and unsatisfying, though the resulting productions haven’t been as bad as the memory of the production. So I would not say I was looking forward to participating in an e-learning video on hope and self-care for the care-partner support programs of the Alzheimer Society. But I have been working with the Alzheimer society for many years, so I agreed to do a video, and I labelled the dreaded experience in the category of “taking one for the team.” My less-than-perfect experience with video shoots has been only partially the fault of the video-shooting process. To be fair, the topic of hope is a difficult topic to grasp and squeeze into a few cogent sound-bytes. Ask me a simple question about hope, and you’ll get a rambling answer. I am, it seems, a storyteller. In the short video format I try to focus on content. Somehow, my content rarely blossoms without the story, and the story that ends up taking first place in the video is unquestionably a story I told, but not the story I had wanted to tell. The preliminary work on the Alzheimer shoot was handled long distance. Like all the video producers who have gone before her, Tracey Bennett had no idea what a HOPE LADY was, or why she was interviewing THE HOPE LADY for an e-learning video on Alzheimer care. She called me from Halifax to find out what it is that I say to groups of family care partners, year after year after year. I admit that I couldn’t seem to tell her over the phone. “We have conversations, I said. “Spouses and adult children of people with Alzheimer disease feel more hopeful at the end than they did at the beginning. That’s my skill, constructing conversations that give people hope.” Even as I said these things, true as they are, I could feel the cloud of vaguery descending. What story was I trying to tell? It was the same old story, beginning again. In fact, I was under-stating the conversational case. The conversations I have with care partners at the Alzheimer Society are not entirely unscripted. When I sit down for a conversation with a dozen care partners, I follow a brief handout and fill in the interesting parts with my stories and theirs. Grasping with Tracy for some sort of clarity, I offer to send her a handout I use for Alzheimer discussions. In return, she sent me a draft video script. This was the point at which I began to feel that we might be on a better track. The interview guide that accompanied the script stated some learning objectives that looked suspiciously like my goals for sessions with the care partners: 1. Understand the importance of hope on the journey as a care partner. 2. Identify ways to maintain hope in the face of this progressive illness. 3. Understand the importance of caring for one’s self as a family care partner. 4. Describe when and how to ask for help. The script had only a few questions for an interviewer to ask. My answers were roughed in. I was encouraged to add to the answers, but not to change the questions. Using that script, I prepared in advance to shoot my portion of the video. Some day a video featuring me in conversation with an actress named Liana will appear on the Internet. It was made in the manner of a movie with actors, but it will appear to be the filming of an interview. To the viewer, it will appear that Liana is brimming with curiosity about hope, the experience of Alzheimer care partners, and the ever present need to maintain good mental health when you care for people who have dementia. It will appear that she has asked just the right questions at the right moments to get the story out. Average viewers will not suspect that the questions came, not from Liana, but from Tracy. There will be no reason to believe that half of the questions were asked later, then inserted into my original answers, after Tracey had heard the content of my answers to the few scripted questions that were asked of me in the first round. Nobody will guess that some of the smiling and nodding was recorded later, then added in and thoughtful pauses. They won’t know that each of the questions was filmed twice, from different angles, while the answers were only filmed once. They will think they are seeing a single interview, start to finish. That is what I would think, if I hadn’t been there to witness the process. The entire process of shooting took about 45 minutes. From this, they intend to develop a 15-minute interview. Tracy was the person who so capably managed the process. I was blown away by her intuition for adding the questions in after the answers were given. She did this on the fly, in the space of a few moments. But while she managed the process of filming the original script, she was also managing the content. She added a whole new section based on her own curiosity about something we hadn’t discussed. She and I had a conversation off camera, then she scripted questions for Liana to ask. Seldom have I had the privilege of watching someone with such a gift for hearing a story and making a story at the same time. The final product will be the joining of a hundred tiny pieces, trimmed to fit like panels on a patchwork quilt. I asked Tracy if she would be the person doing the final edit. She said she doubted it. She would be going on to do something else. She said it was very hard for her to let a project go, to trust the final edit to a person who had not been in the room at the time of filming. But she knew, from experience that the video would turn out well because the foundation was there. I didn’t doubt it. How could I?

DAD'S DOGS

“Hope is a healthy, positive orientation that allows us to think about the future and feel okay in the present.” –Wendy Edey

I spent a couple of hours with a dozen spouses and adult children of people with late-stage Alzheimer Disease. We talked about these caregivers as people first, people with their own way of dealing with things, their own likes and dislikes, their own sources of pleasure and comfort. Then we talked about hope, then about their present troubles, and their future worries.
Hope is a difficult topic for this crowd. Their loved-ones have passed the stage of independence. If they are not already living away from home, they likely will be in the near future. Some cry each time their visitors leave. Others are unable to offer their visitors even the smallest flicker of recognition.
The people who attend caregiver groups are a loyal lot, full of compassion, hobbled by the conflicting pressures of their own beliefs. Prolonging the lives of their loved-ones seems cruel, not doing so unconscionable. Long-ago promises of stayng together in sickness and health are broken by force.
As the end of our time grew near, I asked them: “Given all that we have said today, what is it that gives you hope?”
One family, mother and daughter, told the following story.
“Dad has two dogs, plush toys. He thinks they are real. He cares for them, hugs them, pets them, tells stories about them, cries when bad things happen to them. We found the first dog at a garage sale and took it to him, never thinking how much he would treasure it. He was with us when we bought the second one. He hugged it and said, ‘It isn’t real, is it?’ But it also was real to him.”
This story had a very appreciative audience. One person spoke up. “You can’t leave anything in a nursing home,” she said reasonably. “Things get stolen.”
“Oh yes,” said the mother and daughter. “The dogs wander off. Sometimes the staff brings them back. Sometimes we go searching for them. Dogs wander off, you know.”
“One time Dad packed the dogs in a kennel for a trip he imagined he was taking on WestJet. Where he found the box we do not know. The cleaning staff didn’t realize there were dogs in the box when they threw it out. We went right to the store and got similar dogs. Then we bought four more look-alikes.”
Hope is a healthy positive orientation to the future that helps us feel okay in the present.