The Remembrance of Things Past

              I led many a meeting over the years. If it was a new group, I would often begin with a question for everyone to answer.  The one I used most often was, “Where did you grow up, and what did you like best about it?”

              I’d wait a minute or two, then offer my own response as an example.  “I grew up in San Bernardino, California.  What I liked best about it was our neighborhood.  It was at the base of the foothills and there were lots of kids on our street.  We spent countless hours getting together to play games like hide and seek, cops and robbers and whatever sport was in season.”

Then others would respond.

“Every summer we’d go back to our grandparents farm for a month.”

“We had a cabin by a lake, and we’d go there for our vacation.  We had every day free to hike, fish, and play games.”

              “In my neighborhood, there was a big vacant lot at the end of the street, and the neighborhood kids would meet there every day and come up with something to do.”

Over time, I saw two common themes.

  1. Almost every treasured memory had to do with extended periods of unstructured time. Alone or with others, children were free to follow their imagination.
  2. As people shared their stories, they became relaxed and happy; they were re-experiencing a joy they’d known unconsciously as a child.

This came to mind as I read a recent article in the New York Times, “Racing to Retake a Beloved Trip, Before Dementia Takes Everything,” by Francesca Mari.[i]  It’s a personal story about her journey with her 72-year-old father who has advancing dementia. He lives alone in Half Moon Bay, and she teaches at Brown University in Rhode Island.  Mari’s mother died when she was 10. Her father never remarried, and she is an only child.  She describes the challenges of caring for a parent with dementia.  Before it gets worse, she decides to take him to Switzerland and Italy, retracing a trip he had with his parents when he was 14 as they visited the village of his grandparents. She hoped this might be a positive experience for them both.

This is a well-told-tale, and I will not try to retell it. Suffice it to say that, despite many challenges, they find his family’s ancestral home in a small Swiss village. Along the way, listening to Beatles’ music in the car and seeing new sights, her father summons up many warm memories, many which she has never heard before.  In some ways, he comes alive again.  Interspersed with their adventures and discoveries, Mari shares insights about the power of nostalgia and reminiscing:

In the 1950s, the tendency of old people to reminisce was thought to be a sign of senility. The first long-term studies of healthy elderly people began at Duke University and the National Institutes of Health’s Laboratory of Clinical Science only in 1955 — and it wasn’t until the early 1960s that Robert Butler, a psychologist then at the National Institutes of Health, realized that nostalgia and reminiscence were part of a natural healing process. “The life review,” as Butler came to call it, “represents one of the underlying human capacities on which all psychotherapy depends.” The goals of life review included the righting of old wrongs, atoning for past actions or inactions, reconciling with estranged family members or friends, accepting your mortality, taking pride in accomplishment and embracing a feeling of having done your best. Interestingly, Butler noted that people often return to their birthplace for a final visit.

Butler believed life reviews weren’t the unvarnished truth but rather the reconciled one, more like the authorized biography. The edited narrative is born of psychological necessity. “People who embark on a life review are making a perilous passage,” Butler wrote, “and they need support that is caring and nonjudgmental. Some people revise their stories until the end, altering and embellishing in an attempt to make things better. Pointing out the inconsistencies serves no useful purpose and, indeed, may cut off the life-review process.”

…. memories must travel between people. Without pollination, they wither. Families collectively remember, they maintain narratives, fill them in and round them out and keep people close long after they’ve left…

I remember listening to my father reminisce in his later years. My mother died 20 years before he did. Growing up, my siblings and I remember many good times, as well as the ways in which they frustrated each other.  But as time went on, dad’s retellings did not include any reference to their differences. Instead, he only saw her in the light of the love he had for her.  Who were we to correct him?

I have been fortunate to spend a great deal of time listening to older peoples’ memories, stories, and lessons they’ve learned.  Now that I am a Medicare-card-carrying-member of this age group, I understand the desire to try to make sense of the lives we’ve lived.

In April, I went back to my hometown to visit the cemetery where my ancestors are buried, including ones who died before I was born.  There was nothing there but gravestones, but something led me to kneel, touch the marker, and thank them.

There is a famous phrase of Shakespeare’s, which, as I discovered, opens his 40th sonnet:

When to the sessions of sweet silent thought

I summon up remembrance of things past,

I sigh the lack of many a thing I sought…

The poem continues with verses describing grieving lost friends, then ends with:

But if the while I think on thee, dear friend,

All losses are restor’d, and sorrows end.

              May we be willing to honor those who reminisce and be grateful for the friends and families with whom we can “pollinate” our fleeting memories.


[i] “Racing to Retake a Beloved Trip, Before Dementia Takes Everything” (If you cannot open the article but want to read it, email me and I’ll send you a PDF copy.)

Photo: The village of Treggia, Switzerland, where the author’s grandfather was born

My Plan for Dementia Care

In my years of ministry, hospice work, and living life, I’ve seen individuals and families go through all kinds of challenges and heartaches, including serious illnesses and aging.  I’ve witnessed people face these challenges with love and grace.  I’ve also seen some situations create tension, stress, and suffering that go on for a very long time. 

Modern medicine can keep us alive, but sometimes beyond a point where there is any real quality of life remaining.  I’ve visited many people in nursing homes in their 90s who have told me they are “ready to go” and don’t want to “just exist.” And I’ve seen many people in wheelchairs placed in front of televisions looking as if any reason to live has long gone, and they are stuck in a stagnant existence.  With dementia, things can get particularly difficult; families ask, “What would Dad want us to do if he was able to tell us?”

I’ve often thought, “I don’t want to go through that myself.  And I don’t my family to go through that.”

Recently I met with a colleague to update my own “Advanced Health Care Directives” and define how I want to be cared for as I age.  She has worked for years with local hospices, hospitals, medical clinics, and retirement homes to help people define what their wishes are for the last years of their life.  When I told her one of my great concerns is what would happen if I should develop serious dementia or Alzheimer’s, she told me about an article in the New York Times that discusses a new option: “One Day Your Mind May Fade. At Least You’ll Have a Plan.” [i] Then she referred me to a new document discussed in the article that would allow me to put my wishes in writing.

You can find the document on the website  Dementia Directive.  It’s very simple.  It defines three stages:

Stage One — Mild: With mild dementia, people may often lose the ability to remember what just happened to them. Routine tasks become difficult, such as cooking. Some tasks can become more dangerous, such as driving.

Stage Two — Moderate: In moderate dementia, communication becomes very limited. People lose the ability to understand what is going on around them. People require daily full-time assistance with dressing and often toileting. They can sometimes become quite confused and agitated and paranoid. Some people appear to be content much of the time.

Stage ThreeSevere: In severe dementia, people are no longer able to recognize loved ones and family members. Some people with severe dementia may be calm and serene much of the time, but many go through periods of agitation. They can be awake through the night. They can be angry, disruptive, and yelling. People need 24-hour help with all daily activities, including bathing and assistance with all basic body functions.

For each stage, you can mark which of the three levels of care you want:

Care goals (choose one for each stage)

  • To live for as long as I can. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating.
  •  To receive treatments to prolong my life, but if my heart stops beating or I can’t breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. Reason why: if I took such a sudden turn for the worse then my dementia would likely be worse if I survived, and this would not be an acceptable quality of life for me.
  • To receive comfort-focused care only. (Including DNR and Do Not Intubate) I would only want medical care to relieve symptoms such as pain, anxiety, or breathlessness. I would not want care to keep me alive longer. It would be important to me to avoid sending me to a hospital or ER, unless that was the only way to keep me more comfortable, because trips to the hospital when someone has dementia can be quite traumatic.

After discussing my wishes with my friend, I took the form to my doctor during my annual checkup.  When I showed him the form, he asked how he could get his own copy.  Then we discussed my wishes.  We agreed that if I was in the first stage – Mild Dementia – I’d choose the second Care Goal: don’t allow CPR or put me on a breathing machine, but if there are some simple treatments that may help me live a bit longer, that may be OK.[ii]  My guess is that if I can still recognize family and friends and putter around enjoying daily tasks, then it may be worth some modest interventions. But for the other two stages, “Moderate” and “Severe,” I marked the third option.  Keep me comfortable, but don’t take dramatic steps to prolong my life.  For example, if I get pneumonia, don’t give me antibiotics – let me die of natural causes.

Each of us may make different choices. But it’s a real gift to have these options spelled out.

Next month we will be with our children and grandchildren. I’ll be sharing this with them, so they know what I want, and I’m adding this form to my records with my physician and attorney.

If you read my blog, you know one of my constant themes is my sense of awe at the miracle of life, and gratitude for all the opportunities and experiences I’ve had. But I don’t want to live “beyond my time,” and I don’t want my family to be emotionally or financially burdened caring for me when I don’t have a life I can appreciate. 

I am grateful for my friend’s counsel and this new directive.

Photograph: “Starry Night Over the Pacific Ocean,” Michael Shainblum


[i] https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

[ii] If your heart stops and you are young, medical personnel can often use CPR to revive you. But with people over 80, only 3% of people who receive CPR are ever able to leave the hospital. (https://pubmed.ncbi.nlm.nih.gov/31840239/)