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baby boomers, Book Reviews and News, elder care, hospice care, hospice volunteering, Uncategorized

Connecting Musically: A Volunteer’s Memoir

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There’s no dearth of books, articles and blog posts or films, documentaries and videos about elderhood, serious illness and end-of-life issues, but I’d never come across any from the perspective I know so well: that of another hospice volunteer. So I was eager to read Steve Litwer’s new book, “The Music Between Us: Memoir of a Bedside Musician.”

The fact is, being a hospice volunteer is not a group enterprise; the reason you visit a seriously ill person is to offer friendship and comfort to him or her, and by extension to a person, or people, who care for him or her. But you do it alone, not with a gaggle of other volunteers or hospice staff with you. So I was eager to read this book to do a virtual kind of  “comparing notes,” to learn how the author related to and learned from the people he’d come to know, how volunteering has affected him, as well as to see how another hospice organization in another part of the country does what it does.

The book offers all that. It depicts many special moments between the author and the people he visited that resonated with me, which itself was welcome particularly at a time when the pandemic has made it impossible for volunteers to continue doing what we do, much less talk to one another about it. But you don’t need to be a volunteer or extra-curious about what that entails to read it. The book is a well-written, sometimes harrowing and very personal perspective on pain, loss, healing, forgiveness, wisdom and the search for a higher purpose. Plus, there are great songs built into the story. These are also available for listening on the author’s website.

The book is a memoir of Litwer’s long journey from an extraordinarily difficult childhood to often turbulent times of his own adulthood to a spiritual pilgrimage that eventually led him to fully embrace Christianity. His matter-of-fact style in relating his own shortcomings seems to expect neither excessive sympathy nor absolution from the reader. Each chapter starts with a vivid written sketch of an individual he has played guitar for and like a jazz riff, moves on from there to relate to relevant pieces of his own evolution.

Litwer became a bedside musician after retiring in his early sixties. He writes that when he started, “I slowly learned to become vulnerable with [the dying]…Participating in one of the most tender moments of others’ lives through songs and companionship would often leave me also feeling this way. It was in this state, that I experienced the slow emergence of pieces of my own past, percolating up through lost times of my own life.”

 After I read the book, I was glad for the opportunity to ask Litwer a few questions as a follow-up. Some highlights:

How have things changed for you since the pandemic began?

I have not visited a client since March of 2020. That’s when most activities for hospice volunteers abruptly ended. (I did record some video of my guitar playing which was sent out by one of the two hospice agencies where I volunteer.) As the Covid-19 numbers accelerated, I like so many, contemplated my own experience of isolation. I thought about how much more difficult that was for patients dying alone, without the in-person presence of friends and loved ones. Some of this became reflected in the book before it was published.

How do you deal with the reality that you can connect more with some people than with others?

If I am going to be of any value to the clients I visit, it’s incumbent on me to make the effort to connect in any way possible —  to be in their space — through friendly small talk or just being a calm presence. I try to remember that I am not there to fix them and that I certainly can’t cure them.  I also accept that I am going to connect with some folks more than others, especially if we have something common in our backgrounds or our personalities are simpatico.

Fortunately, this becomes easier with all types of folks, given that the music I bring can serve as a great bridge between us. That is, if  I’m creative enough to quickly discover what songs touch them. Although I am a child of the 1960s steeped in the music of that era, the great American music catalogue is so broad and deep, with so many iconic songs that are familiar to most people, there’s much for everyone to enjoy in just about any music genre. One doesn’t even have to be a musician to create meaningful musical connections. Music helps to open a personal connection with patients, even if they cannot verbally communicate with me.

How do you take care of yourself if or when the sadness or gravity of the work affects you?

At times, I do find myself sad after witnessing someone decline and pass away. Here’s what helps me: prayer – for myself and the client before or after a visit. Also, meditating on the idea of non-attachment to one’s environment and the suffering of others, which can be challenging. Since I was writing my memoir through much of my pre-pandemic volunteering, that became a sort of contemplation of both life’s sadness and joy. The book was an outgrowth of the journaling I did following most client visits. It’s a great tool for self-expression and then ‘letting go.’

 Do you share experiences with other volunteers? Is there any formalized way of providing support to volunteers?

The easiest thing might be organized live streaming video calls using platforms like Zoom, moderated by a hospice Volunteer Coordinator. However, I have not seen that.

While speaking with various leaders at local hospice agencies about my book, one came up with the idea of creating a sort of book club for volunteers, using “The Music Between Us.” The idea was to provide them the book and then host a discussion group on a Zoom call. I would join the call also to take questions about the book.  I think creative ideas like this, using video technology can carry over, even after we move beyond COVID restrictions.

           And on that note…here’s a link to Steve Litwer’s website and book.

Advance Care Planning, baby boomers, death and dying, elder care, patient education, Uncategorized

Having ‘The Talk’ With Mom and Dad

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Editor’s note: Did you know that April 16th is National Health Care Decisions Day? Of course, the pandemic has made us all just that much more aware of our mortality, so it’s an excellent time to think about the kind of care we’d want if we couldn’t speak for ourselves. Or: to learn what our parents would want. Not an easy talk to have, certainly! This guest blog, by systems engineer William Donaldson, explains how he had multiple such conversations with his parents — and why they proved so valuable. He’s also writing a book about it, available this summer, “Estimated Time of Departure: How I Talked to My Parents to Death: A Love Story.”

For reasons I still do not fully understand, I wanted to know what my parents wanted for their end of life. What I learned in shepherding my parents on their journeys is that the discussions, while hard and sad, are also incredibly liberating and rewarding. The feeling of control and certainty were ironically comforting since I was certain I was going to be losing my parents. But knowing precisely what each of my parents wanted and sharing that with my siblings long before we needed to face the event became a wonderful, loving gift. When the time came (Dad died in August 2009 and Mom died in March 2011) there were no questions or regrets; we all knew exactly what needed to be done.

When I first started pressing the issue, probably 10-12 years before the events, my parents were dismissive of the need. As time moved on, they became evasive and would change the subject. Finally, after many aborted attempts, we broke through and started to talk in earnest. But why did it take so long?

Here is why I believe they resisted. My parents were fiercely independent and had a work ethic that required one to “buck up” and fight through whatever the issue they were facing. They did not want to be reliant on or a burden to anyone. Finally, I think they didn’t want to burden their children, or anyone else, with their issues. They were very private, and they did not wish to have anyone intruding into their space. I believe all these feelings are normal and caused avoidance and deflection. Only when it became apparent that some things were going to have to change due to physical limitations, and when my siblings and I told my parents that we needed to know how the movie ended, that we began to have the productive end of life discussions.

My parents had raised five children and, while we had our differences and spats, we all loved one another and got along well. We talked and visited often. As my parents aged, they named me and my brother, Alec, executors of their estate. My parents did all the right things concerning wills, powers-of-attorney, DNRs, and all the legal, rational, and biological decisions. In that regard, we were blessed.

However, as their lives wound down, it became clear to me that the emotional and biographical elements of their end of life were still unknown to us. As I was living in the same town, I had access to my parents, and I took it upon myself to explore those aspects of their end of life. I kept my brothers and sister informed at every step, and they helped encourage my parents to open up about their wishes. I believe my parents needed to hear from all of us that we were okay with them having these discussions. We all became very philosophical that we had to have these discussions. This openness and resolve paved the way for genuinely heartfelt, loving, liberating discussions.

These hard, emotional discussions paid off handsomely at my parents’ end of life. When those times came, there were no surprises. None of us had to wonder what our parents wanted. Our parents knew that we were comfortable with the inevitability. Both of my parents were able to identify the right time and circumstance for their deaths. They were ready to accept hospice services, and we all had beautiful long, loving goodbyes, without regret for what hadn’t been said. They both died peacefully. I believe their knowing that they had prepared themselves and their children for the inevitability changed everyone’s experience for the better.

So, don’t wait until it is too late. Don’t miss the opportunity to take control of this event. Have the discussions you need to have. Make these declarations ahead of time. You can do it.

Here are some thoughts from my siblings and my journey to help with yours.

Don’t wait – Since death is inevitable, why not talk about what you think and feel about that inevitability?
Talk early – Dealing with these discussions at the last minute, during highly stressful episodes, does not help matters at all. As morbid as it sounds, the best time to have these discussions is when you feel the most alive. Being reasonably sure the specter of death is some time off relieves some of the stress the topic inevitably brings.
Talk often – People can change their minds. Don’t feel pressured only to talk once and resolve all the issues.
Write it down – Whatever decisions you come to, as parent or child of parents, write them down.
Share it – Share these thoughts with everyone who needs to know.

My experience of shepherding my parents to the end of their lives turned out to be one of the most loving and rewarding chapters in my life. I hope hearing that will give you the courage to have these most important conversations.

baby boomers, Book Reviews and News, elder care, Mental health, patient education, Uncategorized, wellness

Looking Ahead with Resilience & Purpose

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Having recently celebrated a birthday — not a “big” one, but big enough, thanks — I felt in need of a little inspiration. And found it in a documentary on DVD called “Lives Well Lived.” The filmmaker interviewed some 40 people, in their 70s through 100, about their lives, about what gives their lives meaning, and what advice they might have for younger people.

Besides being a great antidote to the often-stereotypical portrayals of older adults in the media, it’s also an excellent history lesson from a variety of vantage points. Lots of food for thought, for all generations.

I wrote about it for SixtyandMe.com. Here’s the link.

baby boomers, Book Reviews and News, culture change, elder care, patient education, Uncategorized, wellness

‘Elderhood’: A Necessary Look at Embracing Aging in All its Stages

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I wonder if Madonna, 60, thinks of herself as old.

I’m guessing probably not, but maybe she should. Think of how much she might contribute to the discussion about what it means to age, to grow older well, and how we can facilitate that for all of us, not just for a privileged few.

This thought might never have crossed my mind except for having read Louise Aronson’s extraordinary new book, “Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life,” and having the opportunity to interview her about it. Aronson is a geriatrician and professor of geriatrics at the University of California San Francisco.

In the book, an amalgam of facts, patient stories, tales of Aronson’s own education and medical experience — as well as references to history, anthropology, literature and scientific studies — combine to shine a light on the necessity to rethink aging itself. Bonus: reading it also provides the great pleasure of following the path of a unique and invaluable mind and heart.

In some ways the book is an indictment of our medical system, which recognizes that chronic illness and aging are a major health challenge, but often treats those who experience it or the specialists who treat it as second class citizens. And she has a number of recommendations for changing the system. Among the many reasons why the need for change is so compelling: People who are 65 or older represent 16 percent of the U.S. population, but nearly 40 percent of hospitalized adults; with a few notable exceptions, hospitals as they are designed and operated currently present a great many challenges for elders.

“Elderhood” is also a road map for those of us who are aging to tap back into our boomer activist genes and insist on better care as we go forward, not only from the health care system, but also from policymakers who have a big impact on how that care is provided and paid for. As for ourselves individually, it’s time to discard the clichés and stereotypes of aging we may have internalized over the years.

“Elderhood is life’s third and final act; what it looks like is up to us,” Aronson writes. “This third act is not a repeat of the first or second. More often it is in life what it is in drama: the site of our story’s climax, denouement and resolution.”

The book dispels a number of myths about what aging looks like. “Old age is only partially determined by biology. It’s long, varied, relative and relational,” she writes, noting that “a good part of the suffering in old age is manufactured by our policies and attitudes.”

Owning Our Elderhood, in All Its Substages

Elderhood comprises a number of substages and in Aronson’s view we need better language for those substages. As an example: at 55, she has taken to referring to herself as old when she teaches her medical students at UCSF (who, she said, amused, most likely consider her “old” anyway).

“The more we own it, the better. We reform it,” she said. Much as the LGBTQ community has taken back the word “queer” and succeeded in taking the awful sting out of it, we can “reclaim, create or repurpose simple words to redefine themselves and their place in society,” she writes.

Aronson stresses that the numbers of elders who find satisfaction and purpose in their lives and consider their health excellent – despite having to contend with a variety of ills – are legion. Studies have shown, for example, that anxiety rates fall around 60. In their 80s, she has found, for the most part people are quite satisfied, more so than in their 40s and 50s.

“Adaptability is a huge defining characteristic of elderhood,” she told me.

In her elderhood clinic at the University of California San Francisco, Aronson treats people ranging in age from 60 to 102. (Fun fact: The World Health Organization, among others, defines people aged 60 and up as old.) So, she points out, there are at least two generations within this group.

“It’s time for elderhood to take its rightful place alongside childhood and adulthood,” she writes. That includes the “young-old” and the “old-old” and all the stages in between, under the umbrella of elderhood.

Aronson explained that in her clinic, dealing with the “whole human being” is of first and foremost importance. She focuses on functional status because “that’s a better predictor of whether [patients] will wind up in the hospital or not.” Together, she and her patients discuss preferences and goals – not just medical, but goals of life. She also wants to know about “who’s in their world?” In other words, how does the person live, who is available to be supportive, what obstacles or barriers lie in the path to a better quality of life and how does the person actually feel about aging. “That impacts recovery,” she said. The clinic practices what she calls the four “P’s”: prevention, purpose, priorities and perspective.

“Failing to fully acknowledge the ongoing human development and diversity of older Americans is bad medicine and flawed public health,” she says, noting that “we can only make aging good if we make it good for all of us.”

I could go on quoting Aronson, but I won’t. Instead, I encourage you to read it to discover the many gems to be found.

Maybe Madonna should read it too.

Advance Care Planning, baby boomers, death and dying, Mental health, patient education, Uncategorized

What’s Your Mountain?

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A year before Isabella de la Houssaye reached the summit of a 22,840-foot-high mountain peak in the Andes with her daughter Bella, she had been diagnosed with stage 4 lung cancer.

The 55-year-old, an outdoors enthusiast, and her husband David Crane had five children, aged 16 to 25, all of whom had conquered outdoor adventures together with the family and as individuals. So after recovering sufficiently from grueling cancer treatment and feeling stronger, Isabella was determined to have other adventures with each of her children, individually, in large part to impart life lessons to them.

The climb to the top of Aconcagua in Argentina with college-junior Bella, with a team that included a New York Times reporter and photographer, is a remarkable story of almost unimaginable challenges, courage, grit and determination. It was featured in a lengthy article in the Times that you can read here.

One passage in the story that I found especially moving – and thankfully its lesson is not dependent on climbing a mountain to learn from – records Isabella’s attitude about illness:

“So much of who I was was defined by my physical strength,” she said. “It’s definitely hard being sick and saying goodbye to the person you were before. You have to redefine yourself, and you don’t want to define yourself as a sick person. I’m learning that you have to find acceptance with the decline.”

Facing Mortality Head-On

Her story is inspiring, to say the least. But I must admit that after I read it, I knew that if at some point I am diagnosed with a life-threatening illness, my first thought would not be: let me call my son and propose that we climb a 22,840-foot-high mountain together. As I kept thinking about Isabella’s ultimately successful ordeal, though, I wondered: what would I do (after emerging from a period of hiding and mourning my life under the covers)?

It’s an important question, one that many of us don’t think about much. How do I know that? For the past several months, I’ve been giving “Conversation of Your Life” talks to various groups. It’s all about advance care planning: having the conversation with loved ones about your treatment preferences if you cannot speak for yourself; choosing a health care proxy; preparing an advance directive; and communicating with your doctors about what you want and what you don’t want. Essential issues.

What I try to stress, though, is that the first and most important part of this process of communication is to communicate with yourself. That is, to confront your mortality head-on. So much flows from that. It isn’t all about medical treatments, just as serious illness itself isn’t just a medical issue. It’s about what you feel you want and need to do before you can no longer do it. It’s about how you want to live the rest of your life – honoring your sense of what gives your life meaning and purpose. It’s about the kind of legacy you want to leave. It’s about who you want to surround yourself with. And unfinished business to attend to.

When I talk about this fundamental part of communication, I sometimes ask my audience, who has given some thought to this? What are you envisioning? The response? Crickets, typically. Either no one has given this any thought, or people feel too shy or embarrassed to share.

Sharing Your Values

So I’ll share some of what I’d like. If I am gravely ill and still have my wits about me, I’d like a big good-bye party, with lots of food and lots to drink. I’d like to hear from family and friends about what I’ve meant to them, what they’ll remember, how I’ve affected them and funny stories they can tell. All the wonderful and moving things that people say at funerals that the deceased don’t get to hear. (At least we don’t have any evidence that they do.) I want to hear it before I go.

And, speaking of food: We’ve been hosting Thanksgiving and Passover for decades and in recent years our small family has happily grown to include seven grandchildren and cousins’ grandchildren, aged six and under. As you might imagine, these events are like organized chaos, but always seem too short. One reason I love to keep doing this is that I am hoping that all the younger-generation cousins and their children will continue to recognize how precious these times are and will keep the tradition going.

Clearly, Isabella had grander things in mind, but fundamentally she wanted to impart her values and wishes to her family. She succeeded in accomplishing what she set out to do. After reaching the summit, Isabella said, “It was so important to me that Bella and I have this experience together. I really wanted her to see that when things get hard, you can find a place inside yourself to keep going.”

An important lesson for all of us.

What’s your mountain?

Advance Care Planning, baby boomers, death and dying, elder care, hospice care, Medical Crisis, palliative care, patient education, Uncategorized

Talking About….Life, Ageism, Death and Everything in Between

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Had a wide-ranging conversation about how the media portrays (or doesn’t) elders, serious illness; how people misunderstand palliative and hospice care; and lots more on Barry Lynn’s “Culture Shocks” podcast.

You can listen to our half-hour conversation in the second half of the podcast.

Advance Care Planning, baby boomers, culture change, death and dying, elder care, hospice care, palliative care, patient education, Uncategorized

Yea or Nay on Medical Aid in Dying?

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Hawaii has become the latest state to enable medical aid-in-dying, and  public opinion has been shifting more in favor of it in the past couple of years.  It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it.  I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.

Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.

In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.

You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/