Some of the challenges visitors can explore through materials on this website are listed below.
Health and Well-Being
Maintaining long term health and well-being is the ultimate challenge for anyone who has developed Alzheimer’s or dementia, but it’s not the only challenge, nor is it necessarily the most important one. People who have these diseases will eventually die from them, and there’s little that care-givers, friends or family members–or even medical professionals–can do to forestall that outcome. But people are not just dying from these diseases, they’re living with them and through them. And not just for an undistinguished, count-down chunk of time between their diagnosis and when they die, but day-by-day and moment-by-moment for the rest of their lives, as are we all.
One challenge for the rest of us is to see more clearly and in greater detail how people with Alzheimer’s or dementia are trying to live as fully as they can in the face of their own extraordinary challenges. Another is to develop care approaches that support their health and well-being while also contributing positively to our own. It’s difficult to respond thoughtfully to these challenges without finding ways to stay in touch with the people we know who are living with these diseases.
Relationships
People living with Alzheimer’s or dementia face considerable challenges in trying to sustain relationships with their family members and friends. On their own, there’s little if anything they can do to stay in touch. Family members and friends also frequently lack the time, skills, and understanding that could help them sustain relationships with people who live with Alzheimer’s or dementia.
My cousin Leslie lost her ability to talk, write and get around by herself during the first two years after her Alzheimer’s diagnosis. As a result, she also lost her ability to contact people she might want to see, or to actually go see them. In response to Leslie’s Alzheimer’s, her friends and family members also lost opportunities they’d had previously to stay in touch with her through phone calls, email and, to a somewhat lesser extent, written correspondence.
Leslie and other people living with Alzheimer’s can’t recover the abilities they’ve lost. As a result, their only opportunities for sustaining existing relationships are those that family and friends can provide. For most family members and friends, creating and fostering opportunities of that sort frequently require new ways of acting and thinking about what it means to stay in touch. That applies to the best of times, but it’s even more important when memory care facilities are quarantined–or when “shelter in place” restrictions are in effect for the general population (see Staying in Touch through Quarantines).
Communication
When Leslie could no longer converse or remember things the way she used to, it became increasingly difficult for friends and family members to communicate with her in familiar ways. As those difficulties increased, most of the people she’d associated with previously on a regular basis became too discouraged or disheartened to continue seeing her. They lost touch with her, and she lost touch with them.
That wasn’t the case for Leslie’s daughter Lisa. who stayed as engaged with her mom during Leslie’s Alzheimer’s as she had been previously. That brought Lisa struggles she would otherwise not have known, but also information, opportunities and rewards. As Leslie’s verbal skills declined, for example, Lisa learned how to communicate with her mother non-verbally–and they both did well enough at that to sustain lots of intimate back and forth throughout the course of Leslie’s Alzheimer’s.
Lisa’s example encouraged others to follow, and several of us did–learning along the way that Lisa’s success owed as much to her creative engagement and ability to improvise as it did to pre-existing skills. Many people, for example, call on their non-verbal communication skills when interacting with infants, people who don’t speak the same language, or pets. With a little recalibrating and lots of trial and error, the same skills can help us communicate with people who have lost the ability to speak through Alzheimer’s or dementia. In our own language-intensive world, it’s easy to forget that our ability to communicate depends more on a capacity to be expressive and responsive than on formal language itself.
Instability and Change
People with Alzheimer’s or dementia have no choice but to live through the changes that occur within their diseases, as well as because of them. Indeed, the most enduring “new normal” for people living with degenerative diseases is a continuing stream of “new normals!” However, knowing that someone is suffering memory or language loss, physical deterioration or personality changes doesn’t come close to capturing the drama and dismay of witnessing such changes unfold on a monthly or weekly basis.
Ignoring these changes can jeopardize the well-being of someone living with Alzheimer’s or dementia. But attending to them as they occur requires a combination of patience, emotional toughness, sensitivity, and compassion that is hard to come by. The bottom line here, is that if we want to care for someone effectively, we’ll need to find a way to stay in touch. And if we want to stay in touch as someone lives through the inevitable changes brought by these diseases, we’ll need to keep learning how to do that.
Meaning and Hope
A fundamental challenge for many people who have Alzheimer’s or dementia and those who care for them—either face-to-face or in absentia—is to question the meaning of life without losing hope. And the questions are not necessarily about life in general. They can also be about a life in particular: this life, my life, or the life of the person I’m caring for.
What gives meaning to a person’s life when the ability to talk, remember, move around and initiate social interaction has been fundamentally compromised? What is there about seeing people with Alzheimer’s or dementia–or simply knowing that they have these diseases–that we frequently find so troubling? And whether or not we are troubled, how can we understand and respect the lives of people who lack almost everything we regard as essential to our own?
These questions can be unsettling for any of us, but if exploring them helps sustain relationships with people we care about, they can bring us hope as well as sadness. Unfortunately, the hope is easier to see in retrospect than beforehand. It’s easier to learn all the things that hope can mean–to people we care for and to ourselves–if we can find ways to stay in touch. It’s much more difficult if we can’t.
Doing and Being
When I began visiting Leslie, her memory was fragmented and she’d already lost a lot of her speech and her ability to move around. At the time, I might have said the greatest challenge for me was learning new ways to communicate with her. In retrospect, the greater challenge was learning how to “be” with someone who couldn’t talk, remember clearly, move around or do most of the things that I usually enjoy doing.
In response to that greater challenge, visiting Leslie led me to a deeper appreciation of what it means to “stay in touch” with someone and what it means to “be present” for someone else and to myself when we’re together. I hesitate to call that appreciation a meditative practice, but my most rewarding visits with Leslie usually included playful moments as well as a kind of shared solace, reverence and affection.
Lisa put some of those rewards well when she described spending time with her mom and other memory care residents as a kind of “church.” To the extent that’s an apt metaphor for the communion we enjoyed with memory care residents, one purpose of this website is to help expand the congregation–and to do so in ways that enrich the lives of people living with Alzheimer’s and dementia as well as our own.
Habits of Mind
Perhaps the greatest challenge to sustaining relationships with people as they live through Alzheimer’s and dementia are habits of mind. These are the patterns of thought and feeling we’ve developed for making sense of all we know and don’t know about these diseases. Over the past decade or so–as I’ve learned more about how people are actually living with Alzheimer’s and dementia, and the kinds of care that’s possible for them to receive–some of my existing habits of mind came undone. In their stead, I had to develop new ways of thinking and feeling about Alzheimer’s and dementia and new ways of acting.
In retrospect, this kind of personal redevelopment flowed only in part from spending time with Leslie and her fellow memory care residents. It also followed from trying whole-heartedly to “stay in touch” with Leslie herself. At the outset, for example, I had to learn better manners: seeing the person who was still there instead of grieving for the one I used to know; setting aside my feelings about what a good or bad day (or visit) would mean for me in a memory care home and seeing more clearly, moment-by-moment, what it meant for residents themselves; replacing my own abstract worries and fears about Leslie’s well-being with direct observations of what seemed to be working well or poorly for her.
It also meant thinking through what it meant about my own life that there was so much for me to learn about Leslie’s and the lives of other residents. Where did I get the idea that language and memory abilities are essential to sustain the self, myself, and the selves of everyone else I know? What led me to think that caring for someone required them to know who I was, recognize our shared history, or be aware of what I was doing? What about my presumption that experience was somehow richer for people who lived without Alzheimer’s or dementia than for those who lived with these diseases? And how was it that for the first four years I was seeing Leslie in her memory care home, I assumed there was nothing I could do with or for her if she was asleep or entranced when I came to visit?
We can’t live without habits of mind, and there’s no reason for us to try. But when existing habits of mind keep us from recognizing the humanity and vitality of others—or from staying engaged with people we care about—they’re not serving us or anyone else very well. And when I began visiting Leslie, my own habits of mind had become increasingly suspect in just those terms. I didn’t know that at the time, but in retrospect I’m forever grateful to her for helping me develop better ways to think and feel–not only about her life, but also about my own and the lives of others.