Planet Alzheimer’s


images-1How many of you have struggled with Alzheimer’s in a parent or spouse?

I know, from my own journey with my mother, that it can be a horrific experience watching a vibrant and capable human disappear, day by day, before your eyes.

Equally painful is the sense of helplessness … the uncertainty as to how to care for and comfort someone whose emotional and intellectual needs vary from day to day … whose behavior shows no discernible pattern or logic… who “acts out” for no identifiable reason.

Thus, it was reassuring to learn, at a recent seminar in Des Moines as part of the “Embrace Aging” series, that it is possible to make everyday life quite manageable for both dementia victims and their caregivers.

The presenter was Chuck Wurth, a Managing Partner of several retirement communities in the Midwest designed specifically for dementia patients

Living in The Eternal Present

According to Wurth, the loss of memory causes its victims to live in an increasingly eternal present.  As a result, they lose the learned knowledge of cause-and-effect … the memory function that tells us what steps to take to achieve the outcome we want. For example, a dementia patient who is cold may no longer make the connection between getting warm and putting on a sweater or turning up the thermostat.

According to Wurth, dementia patients typically “act out” because they don’t know how to express their needs and/or what to do about it. In his view, meeting the needs of Alzheimer’s patients can be pretty easy … but only if you can figure out what that unmet need actually is.

One approach that Wurth suggested was to take the time … often significant amounts of time … to actually talk to the patient. He offered four checklists—medical, physical, social, and “caregiving”— to prompt specific questions you should to ask in order to discern what the patient needs. “How are you feeling today” just isn’t going to get you the information you need.

Rules of Planet Alzheimer’s

Wurth also believes that the social and caregiving needs of an Alzheimer’s victim are as important as the medical and physical ones: loss of memory does not eradicate the need to be accepted, respected and loved.

Wurth praises the approach developed by Candace Stewart in Welcome to Planet Alzheimer’s.  Stewart uses the metaphor of a different planet, where the language and the rules are different from our everyday world. To communicate with an Alzheimer’s victim, you need to learn their rules:

  • You are not who YOU think you are — you are who THEY think you are
  • Logic and reason do not exist … follow the rules of improvisation and go with the flow
  • Nothing is gained by arguing
  • YOUR truth and THEIR truth are very different … accepting their truth is not the same as lying
  • Never take anything personally
  • Have no expectations
  • Take advantage of the shuttle back to earth at all times … you need to have your needs met as well.

To me, the rules of Planet Alzheimer’s sounded much like interacting with a young child.  According to Wurth, however, you cannot treat dementia  victims like children. They are adults with adult needs, but adults who are have forgotten many of the lessons they once learned.

Wurth insists that caregiving for a friend or family member with dementia can be a rewarding experience—but it takes a very different kind of patience … and a frequent return to the metaphorical planet earth.

If you would like to download Wurth’s four checklists, click here.

Forgetting Memory – A Postscript


forgetting memories 1My last blog elicited comments from several readers on the impact of camera phones on memory.  Their comments were inspired by a recent NPR segment. After hearing it, I had to share it.

In case you missed it, last week’s blog examined the scientific rationale for the unreliability of memory—the physical and chemical reactions that create, store and modify what we recall of the events in our lives.

The NPR discussion suggested that using camera phones is actually impairing the formation of memory.

  • One hypothesis was offered by Maryanne Garry, a psychology professor at the Victoria University of Wellington in New Zealand. In her view, camera phone users are so focused on the process of picture-taking that they are not actually engaged in the event being photographed. Because they are not really observing the event that is being photographed, there is no information or data to go into memory.
  • A related hypothesis is based on research by psychologist Linda Henkel at Fairfield University in Connecticut. Henkel believes that when we “outsource” memory to a camera, we bypass the “mental cognitive processing” that allows us to actually remember.  In other words, we observe our surroundings, but the short-term memory is overwritten by new information before it can take root.

It does not follow that picture taking is bad. Rather, Henkel observes that “mindful” picture-taking—the sort that encourages you to examine specific details of the scene that you want to capture—does not impair memory formation.  And those pictures can provide “rich retrieval clues” when you go back and look at them.

Do you let your camera phone get in the way of memory formation?

Whether you do or not, check out the NPR segment. It’s fascinating. If by chance the NPR link doesn’t work, just Google npr overexposed camera phones.

Forgetting Memories


MemoriesOver the past year, I’ve used this blog to muse on the myriad ways in which our memories can be an unreliable clue to our past. Implicit in those musings was a belief that most of us (especially those of us who are writers) wish to keep our memories intact.

There are, however, those—victims of trauma from abuse, accidents or the horrors of war—who wish to forget their memories and the emotional pain associated with them.  In recent years, scientists have sought ways to treat those whose painful memories obstruct their daily lives. One approach seeks to preserve the actual memory but separate it from the negative emotions associated with it.  Possible treatments include drug interventions as well as “extinction therapy,” one type of behavior modification.

A fascinating survey of this research appears in a recent New Yorker article, “Partial Recall.”  It’s worth reading just for the education you’ll get in the neuroscience of memory.

  • every memory “depends on a chain of chemical interactions that connects millions of neurons to one another … they communicate through tiny gaps, or synapses, that surround each of them …”
  • synapses are affected by proteins, some of which strengthen memory while others weaken or interfere with it.  One track of scientific research seeks to identify and harness the genes that produce these proteins.
  • Short-term memories are formed from neurochemicals, while long-term memories are transferred over time to different parts of the brain, depending on the nature of the memory.
    • Procedural memory (baking cookies) is spread throughout the brain
    • Emotional memory (love, hate, anger) resides in the amygdala, a tiny bunch of neurons located behind the eyes.
    • Conscious memory (a lunch date) as well as contextual information (the artwork on the wall of the restaurant where you had lunch) is found in the hippocampus.
  • Recalling memories requires information to re-trace the original pathways.  Depending on the circumstances, the memory may be changed by the very process of trying to recall it.

As I digested this last point, I realized I had come full circle—to the unreliability of memory.  Understanding the scientific basis for lost or altered memories offers the potential to help trauma victims.  But it does nothing to get my lost memories back, or provide clues for how to stop losing memories in the future.

Do you have memories you want to forget … or memories you’d like to retrieve?


A Fitting Place

This week, I’ve taken a brief break from discussion of issues relevant to my novel, A Fitting Place. If you’d like to do a guest blog on one of the topics, please contact me here to obtain a copy of the guidelines.

Purchase A Fitting Place in paperback

Purchase A Fitting Place for kindle

Shaping Your Journey


scan0002_2A reader recently asked whether the process of writing Sailing Down the Moonbeam had a role in “shaping” my understanding of a journey that took me from one career to another via three years on a small sailboat.  My first response was “not really,” but within moments, I knew the answer was “yes.”

It related to our sojourn in Panama.  When I first outlined the story, I viewed Panama, along with a host of lovely island stops across the Pacific Ocean, as places where we’d had interesting adventures, but not experiences that specifically contributed to the life lesson—learning to love living out of control—that inspired Moonbeam.

I couldn’t omit Panama entirely, if only because we spent seven months there. But I anticipated half a dozen pages, focused on the challenges of getting through the Canal. 

In fact, Panama takes up 41 of the final 209 pages. It was only as I started writing that I understood the role that Panama had played in my journey:

**       It was in Panama that I first understood how much of “me” had disappeared over fifteen years of marriage.  

As many women do, I had allowed my husband–an extrovert—to make so many decisions about ordinary everyday activities.  Not surprisingly, I’d almost lost sight of my own ability to organize life and make friends without his help. 

But much of our early time in Panama revolved around his surgeries (first a hernia, then a melanoma).  I had no choice but to take the initiative. In Panama, I not only re-discovered who I had once been, but also who I could become.

**      It was in Panama that I first began to think about the benefits of “stepping outside your comfort zone.”

Through an incredible bit of serendipity, my husband and I both got part-time jobs that utilized our professional skills. As a result, we transitioned from travelers to residents and had to adapt to a way of life that challenged many of cultural mores and norms we’d taken for granted for four decades. It was often humbling to realize that “my way” isn’t always the best way.

Writing Moonbeam did not change my “memory” of Panama, but it certainly shaped my understanding of the experience, much like journaling can provide a new perspective on a familiar situation.  It helped me to understand that Panama set the stage. Without Panama, I doubt I would have been receptive to the lesson that was reinforced each day as we crossed the Pacific Ocean—that a living a life that was out-of-control might be a very good thing indeed.

How has writing shaped your memory?