For seven years or so towards the end of her life, as she suffered through the ravages of Alzheimer’s, my dear cousin Leslie and I tried to sustain what had been a life-long friendship. The challenges were considerable, but we more or less succeeded–sometimes brilliantly–in large part thanks to the exceptional coaching I received from Leslie, her fellow residents and several gifted care givers, including Leslie’s daughter Lisa.
What I learned from my efforts to stay in touch with Leslie is half the story behind this website. The other half is how difficult it is for many people to even imagine staying in touch with their own friends and family members who develop Alzheimer’s or dementia–particularly when those diseases lead to language and memory loss, as was the case for Leslie.
Language and memory are in some sense at the top of the pyramid as indicators of who we think we are–as individuals and in relation to other people. Take them down a notch, and life becomes more difficult. Take them down another notch and social life and interpersonal relationships can run aground. Or at least that’s frequently how things seem to be. Remove those faculties entirely, and what, if anything, is left?
Well, quite a bit, actually. Enough so that Leslie’s care givers, Lisa and I could still communicate with Leslie, interact with her in ways both sacred and profane, and share moments of tenderness, laughter, grief, distress and intimacy. Enough, in fact, so that we could enjoy the time we spent with Leslie and other memory care residents, look forward to visiting again, and miss going when we couldn’t.
Many people I talked with about this found it difficult to imagine. They could understand the value of visiting someone suffering from Alzheimer’s or dementia as a family obligation, or an act of compassion and caring, but not that it might be enjoyable, immensely rewarding or even fun. And for some, quite the opposite had been the case. Indeed, as a counter to my experiences with Leslie and her fellow residents, I heard some sorrowful and affecting tales of how Alzheimer’s or dementia destroyed a much loved family member or friend and made it impossible to keep seeing them. I respect these accounts as true to the experience of those who told them. And each person’s Alzheimer’s or dementia develops differently, so maybe Leslie and I were just among the lucky few.
But well before I got there, Lisa and Leslie’s caregivers had found their own way into rewarding relationships with Leslie and other memory care residents. I subsequently met other care givers, family members and friends who had similar experiences at other care facilities. Clearly, some people were finding ways to stay in touch with people they cared about–all the way through the course of Alzheimer’s or other forms of dementia–and doing so in ways that were mutually rewarding. While visiting Leslie, I also got to see what this might look like. Watching lively, skilled individuals eagerly and effectively engage with memory care residents was instructive and inspiring for me, and seeing memory residents respond in kind was equally so.
Contrasts between the sorrowful tales I was hearing and the delights I was seeing at first hand left me puzzled: What was enabling some people to recognize, accept and engage fully with people living with Alzheimer’s or dementia, and disabling others? What did some people withdraw when the health of a person they cared for declined, and while others drew closer? Why were outcomes for one caregiver frustration and despair, and for another a sense of playfulness, reverence, or even hope?
This website explores these questions by looking closely at the dynamics between family and friends, care-givers and memory care residents. It focuses on what we can learn from individuals who not only care for, but vitalize people living with Alzheimer’s or dementia. And it does so through a variety of accounts, commentaries, links and documents–including photographs and videos. The “categories” in the right side navigation box will pull up related posts and pages, but a good place to start exploring the site as a whole is the main menu bar above, where you’ll notice the following tabs:
Challenges: Pages linked to this tab examine challenges of caring for and sustaining relationships with people who develop Alzheimer’s or dementia. Some challenges follow directly from the toll such diseases take on a person’s mobility, memory and language skills. Others emerge from care arrangements, approaches or policies. Still other challenges can be described as a lack of skills, understanding or inclination by family members or friends. As we build out the website, we will link specific challenges with strategies that address them.
Questions: This tab leads to questions we’ve collected from people who are living with Alzheimer’s or dementia, their care givers, and from friends and family members. You can currently click on two highlighted questions to view answers or commentaries. More of those will follow soon. Over time, we’ll respond to as many of these questions as we can through individual posts to this website.
Strategies: The focus here is on specific things we can do to learn more about how people are living with Alzheimer’s or dementia and about different approaches to care. Our initial entries focus on communicating with people have lost their language skills and on using trial and error approaches to improve both communication and care. Future posts will examine strategies attuned to other challenges: reducing isolation, reducing physical distress and discomfort, recognizing resistance and consent, sharing photographs, communicating with care givers, participating in meals, and and so on.
Meditations: The meditation section features thought provoking comments about living with Alzheimer’s or dementia, or caring for someone who does. Some appear as captioned photographs, short videos or a piece of music; others as annotated quotations from other sources.
Stories: Almost everything on this website is a story of some sort, but the majority are relatively short and focus on specific challenges, questions, experiments, and strategies. The links on this page lead to longer, more detailed narratives that cut across other dimensions of the website. These longer stories will eventually be numbered and include internal links that lead from one to the next.
Essays: This section includes longer accounts that focus on issues issue or themes that interest me personally–visual literacy, for example, or language development and regression–that may or may not be of interest to care-givers, family and friends.
Resources: The “Resources”page currently lists ten books and articles that Lisa and I found very helpful in thinking through our engagement with Leslie and other memory care residents. Only two of these are explicitly about Alzheimer’s and dementia, but they all provide insights into expressions of humanity. We have many more resources in the wings and will add them as soon as we can get them organized.
For more about staying in touch during quarantines, see:
Staying in Touch During Quarantines
For more about materials available through this website and how they got here, see: Collaborating with Leslie and Lisa
And, as for the banner photograph . . . .
Yes, that’s my cousin Leslie. Or, to put it more precisely, it’s a photograph I made of Leslie in 1/200 of a second during a visit of about an hour and a half that came a little over four years into the seven years I visited her. The photo is not retouched, but I had to crop it considerably to fit the template for this blog, so the segment above is missing quite a bit of information that’s in the original. On the one hand, that’s unfortunate. On the other, looking at a cropped image is not a bad metaphor for trying to understand Alzheimer’s without spending time with people who are actually living with the disease. You can learn more about Leslie and this particular photograph by reading “Seeing a Person Think.”