A: I didn’t focus on David’s limitations - instead, I focused on the idea that there might be a lot more percolating in David’s mind than I could imagine. My on-going belief in David’s potential was the foundation of our relationship.
Q: You describe many of your misadventures with David in a humorous way, yet many people would not have been able to deal with these exasperating episodes with your equanimity. How were you able to keep up your remarkable resilience when dealing with David?
A: First, I constantly reminded myself that my only goal was to support David. In annoying or frustrating situations, I’d ask myself, "Is David content?" As long as I could answer, "Yes," I was usually able to keep my balance. Second, I knew my time with David was limited - that the end was always in sight. Yet, there were times when I wanted to quit: Once when Terry was sick, David lived with me for a month, and my "remarkable resilience" became less remarkable.
Q: What are some of your fondest memories of your time spent with David?
A: My fondest memories are of those times when David clearly indicated that he understood and valued our relationship. One evening I dropped in to see him. He had been silent for most of my two-hour visit. When he did speak his words were incomprehensible to me. I was massaging his feet when out of a long silence he offered, "You make me more of what I want to be." This is just one of many such fond memories.
Q: The characteristic that shines through most in your relationship with David is truthfulness, because you refused to "humor" him when he had lapses of memory, as so many of us would be inclined to do. What do you think was the upshot of this truthfulness?
A: Truthfulness fostered David’s trust in me. Without his trust, he and I couldn’t have shared such a rich relationship. Truthfulness also allowed me to maintain my respect for David - prevented me from slipping into a condescending, pat-him-on-the head sort of mentality. In the process, I retained my own self-respect.
Q: You stress that you are David's friend, not his caregiver, yet you took on responsibilities that even seasoned caregivers would be reluctant to undertake. How did this approach shape and influence the way you interacted with him?
A: Friendship made us equals. I saw us as a team facing tough challenges together. I resisted the temptation to see myself as superior. Sure, I had many skills that David had lost, but David’s deficits didn’t make me want to "manage" him. I wanted to support him. Again, it gets back to respect.
Q: You continually talked with David about his personal history, even when he no longer remembered much about his past. What benefit do you think those who have dementia gain from revisiting their past?
A: Recalling former achievements bolsters self-esteem. David reveled in hearing that he was a valuable contributor to his community. Being reminded of his personal history - his place of birth, his family, his achievements, etc. - was immensely valuable to David, because he had no other way of anchoring himself to his life. In order to see himself, he needed someone with knowledge of his history to serve as a human mirror.
Q: You write eloquently about the idea of "loss of dignity" and have very strong views on how human dignity should be defined. Can you elaborate?
A: Through my relationship with David, I came to realize that dignity comes from within ourselves. No matter how wacky his behavior or appearance seemed to me, David generally didn’t see himself as undignified, so I didn’t mourn for him. On those rare occasions when he felt a loss of dignity, I was quick to tell him my estimation of him had not diminished. When I reassured him in this way, David often responded with, "Keep talking dear, you’re bringing me right up!"
Q: At what point, if any, did you feel the need to distance yourself emotionally from David's declining state?
A: There were times when I thought I didn’t have the emotional endurance to continue giving David the support he needed. The thing that kept me coming back was constantly seeing that David and I shared a common humanity. David’s flashes of self-awareness, his appreciation for the exquisite detail in a given moment, his joy, his pain - all of these allowed me to see we shared more similarity than disparity.
Q: When David ultimately had to enter a care facility, you made a list of "reminders" for him about his family, his history, and his situation, which you felt would comfort him whenever he became disoriented. How did you get the brilliant idea for this list and did it prove to be useful for him?
A: My idea for the "reminders" list came from putting myself in David’s place - imagining my own fear and frustration at finding myself in a strange place with strange people - at having no understanding of who I was, how I came to be in this place, or if anyone knew or cared that I was where I was. The list was a mainstay for David. He read it incessantly, and it served as a springboard for his family and me in talking with David about his situation.
Q: Anyone who reads Dancing on Quicksand will clearly discern what David gained by having you as a friend. What did you gain from his friendship?
A: Beyond the ego gratification of feeling needed by another human being, I gained a deep sense of life’s preciousness from David as I immersed myself in the simple moments that most of us, ironically, overlook in our frantic race to "live". And surprisingly, I gained a sense that death is nothing to fear. Death is inevitable, but as it turns out, life is inevitable too.
© 2002 - 2017 Marilyn Mitchell - Web site created by Brian Cruce