Category Archives: elder care

Elder care. We are living longer, but as we age many of us will become frailer and we’ll need help with basic activities of daily living. That’s true whether we continue living independently, or move to assisted living or skilled nursing homes.

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3 Steps to Peace of Mind: Or, Thinking About Advance Care Planning

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Happy National Healthcare Decisions Day (NHDD)! The Day’s purpose, according to the Conversation Project (www.theconversationproject.org), the organization that promotes and manages it, is to “demystify healthcare decision-making and make the topic of advance care planning inescapable.”

In short, it’s a way to get us all talking about what we normally would prefer not to talk about at all, which is mortality; as well as our preferences for the kind of care and treatment we would want for ourselves if we were gravely ill and couldn’t speak for ourselves.

If you don’t already have an advance care plan (also known as a living will), or if you haven’t decided who will be speaking for you (your health care proxy), the best present you can give yourself and your loved ones for NHDD is to create one and designate a proxy. And if you are caring for elder parents or relatives, now would be a good time to ask them about their advance care plans too. Your proxy needn’t be your spouse, significant other, son or daughter. It does need to be someone who can be tough-minded if necessary, and dedicated to carrying out your wishes, even if they wouldn’t make those same choices for themselves.

Where to begin? First and foremost, get better educated about some of the kinds of treatments you may or may not want, like CPR, feeding tubes, pain control and mechanical ventilation (about which we’ve all seen way more than we might have expected to during the pandemic).

Second, think deeply about your own values:  If you had a limited amount of time left to live, or were limited in how you could communicate if you had dementia, for example, what would be most important to you? What are your hopes for the future? What would make life continue to be worth living? Be aware that your feelings may change over time and circumstances may change too, so keep revisiting the subject. It’s not a one-time conversation, either with yourself or with your loved ones.

Don’t Keep It a Secret

Third, don’t keep your preferences a secret.  Document your wishes — put it in writing. There are plenty of examples to follow. One of my favorite advance care directive templates is Five Wishes, (http://www.agingwithdignity.org/forms/5wishes.pdf) mainly because it’s very clear, written in plain English, and covers the important bases. Another useful source for advance directive templates is Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO).  You can find advance directive forms (free) for each state on its web site:  http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289.

You can also record yourself on video, keep it in your phone, or on a thumb drive, and send a copy to your health care proxy.

And of course, now there are apps for advance care directives too. The American Bar Association has a My Health Care Wishes app https://www.americanbarfoundation.org/uploads/cms/documents/flyer_for_smart_phone.pdf  It can be stored in pdf or word form on your smartphone or tablet. To find other apps, try https://www.caringinfo.org/planning/advance-directives/digital-video-advance-directives/

Advance directives are not set in stone. You can change your mind, and your directive, at any time, depending on changes in circumstances. Bear in mind, too that it’s possible for these documents to fall between the cracks in our fragmented health system. Even if your primary care physician has a copy, for example, the specialists who may be tending to you may not. So you or your proxy should not be shy about reminding physicians, administrators or whoever is in charge of your care, that your directive exists.

For NHDD 2023, give your loved ones the gift of eliminating the burden of guessing what path to pursue if you’re seriously ill. Spare them the guilt over second-guessing their decisions. Short-circuit a toxic brew of family dissension that could poison family relationships for years to come, as can happen when family members disagree about how best to manage your care.

Mortality, loss, grief – it’s all tough enough to bear under the best of circumstances for the people who love you. You can ease their pain when you speak for yourself through a directive.

And on a personal note…Although I haven’t blogged since pre-Covid days, it’s nice to be back! If there’s anything you want to read about here, let me know!

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, caregiving, death and dying, dementia care, elder care, long-term care, patient education, wellness

Why It Matters to Talk About Values with Dementia Patients

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As relieved as we are about finally seeing the awful year 2020 in the rearview mirror, I’d say that one useful thing the pandemic has given us is an in-your-face awareness of mortality and the gravity of serious illness. And it’s given us permission to talk about it more freely.

But what about loved ones who may be newly diagnosed with dementia? As caregivers know only too well, dementia progresses to the point where ultimately those afflicted may not be able to think clearly, reason well or speak. They become increasingly dependent on others for their care. So, to honor these loved ones, to support them in the way they’d want to care for themselves and to make sure that medical professionals understand the best way to respect what matters to them, it is vital to ask the questions regarding future care when loved ones are still able to articulate their answers.

How do you even begin to discuss these life-and-death issues? Especially if loved ones are anxious about their health and their future, or resistant to the idea that anything is wrong at all? Before trying to talk about the pros and cons of specifics of what I’d call “the Big Three” — CPR, mechanical ventilation and feeding tubes – it’s important to talk about values first. One great source of advice for this is the <a href="http://(https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Alzheimers-English.pdf) which offers a “starter kit” for those caring for people with dementia, at various stages.

The starter kit stresses the importance of beginning with exploring what matters to loved ones, what they fear, what kind of setting they envision if they were at the end of life, how involved they want to be in their medical care and who they’d like to have around them. It also emphasizes the importance of keeping the talk simple. Its questions are clear and straightforward. Finally, it stresses how important it is that you convey that this process is an act of love and that you will be there to support your loved one, no matter what.

Understanding loved ones’ values provides the framework for future decisions as dementia progresses. Advance directives, and health care proxies (those who will be responsible for speaking for loved ones) should reflect these values.

Some Points to Consider About Artificial Nutrition

Of the “Big Three,” let’s focus here just on artificial nutrition (feeding tubes): Sadly, people in the final stages of dementia may not remember how to eat, or be able to chew and swallow. Artificial nutrition is one solution to this issue, but it is not without its own problems According to the American Academy of Hospice and Palliative Medicine, for patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increased suffering. How? For starters, it makes people feel bloated, nauseated, and/or develop diarrhea.

Experts say it’s better to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it. There are other ways to continue to nourish your loved one, if food and fluids are no longer an option.

A useful template of an advance directive for people with dementia, published by End of Life Washington, addresses the feeding-by-hand issue. It states, “If I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur:

• I appear to be indifferent to being fed.
• I no longer appear to desire to eat or drink.
• I do not willingly open my mouth
• I turn my head away or try to avoid being fed or given fluids in any other way.
• I spit out food or fluids.
• I begin a pattern of coughing, gagging or choking on or aspirating (inhaling) food or fluids.
• The negative medical consequences of symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.”

No doubt this is all a lot of food for thought (pardon the pun) for caregivers and loved ones alike. But it’s the hard work of discussing and documenting loved ones’ values and wishes that will be the foundation for the compassionate and appropriate care that loved ones deserve later on in the course of illness.

Wishing everyone a safe, healthy and happy 2021.

Advance Care Planning, baby boomers, caregiving, death and dying, elder care, hospice care, Medical Crisis, National Healthcare Decisions Day, patient education

Planning Ahead in the Time of Covid-19

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One way the coronavirus pandemic has upended what we think of as normal life is how we think about mortality.

How? First, while there’s still so much we don’t know about the virus, what’s clear is that it can, with startling rapidity, do fatal damage even to otherwise-healthy people. It might be a matter of just days or weeks between the time a person first experiences symptoms and the time that person becomes critically ill.

Second, the very sick patients in assisted living, skilled nursing facilities, or in hospital intensive care units must bear the burden of illness alone; visits from loved ones are prohibited. That means a loss of the comfort of being together through a harrowing ordeal.

Third, patients on ventilators must be sedated, and are unable to speak to their loved ones. So there’s no way to have any kind of conversations, much less talks about goals of medical care. Nor can nurses or doctors do what palliative care and hospice physicians have always done best, which is to listen to patients about their lives, their hopes and fears, and to assure them with their very presence that the patients are well cared for.

Fourth, because we cannot gather in groups, we cannot depend on the comfort of family and friends and the time-honored rituals of grieving at funerals or memorial services. Much has been written about the concept of complicated grief, and this pandemic will certainly require a whole new chapter.

This is the horrifying reality that we see and read about, day after day. So it seems to me that this National Healthcare Decisions Day takes on more of a sense of immediacy than it may have in the past. That is, now is the time to think about what kind of care we’d want if we could not speak for ourselves; discuss it with family; get it in writing; and designate a health care proxy.

Of course, it is still true that it’s impossible to decide what kind of treatment you’d want, or not want, if you don’t understand what these treatments entail.

Let’s talk about ventilation, as an example. The best article I’ve read about the why’s and how’s of ventilation is one by Daniela Lamas, MD, a critical care physician at Brigham and Women’s Hospital in Boston and I urge you to read it.

Before Covid-19, my advance care plan said “no thanks” to it. But it seems key to saving the lives of some extremely ill Covid-19 patients and I would not refuse it if I had the virus.

What Dr. Lamas does not mention, though, is that typical time on the ventilator has been longer, on average (up to two weeks or even more) for Covid-19 patients than it has been in conventional uses. That in itself can lead to possible lung damage as well as emotional and psychological issues for recovering patients. Nor does she mention the sad fact that being on a ventilator does not guarantee survival. While it’s still too early to say what percentage of Covid-19 patients do survive ventilation, a large study on that, done by the Intensive Care National Audit & Research Centre in London, found that just 33 out of 98 ventilated patients in the U.K were discharged alive.

So there’s plenty to think about on this National Healthcare Decisions Day. But, hey, we’re home, we’ve got some time on our hands. Pour yourself a glass of wine, or something stronger, and talk it over. And if you need a little guidance getting started, here’s a great resource.

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, caregiving, dementia care, elder care, home care, long-term care, Mental health, patient education

For the Skills We Never Learned in School

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Did you know that today 20 million family caregivers regularly perform a range of tasks for family members or friends? That’s according to AARP. The fact is, many of us are – or will become – caregivers, and that most of us have never been trained to do some of the often complex tasks that will be needed.

Fortunately, there’s more and more online help available to caregivers. So, in honor of National Family Caregivers Month, here’s my latest blog post for Sixty and Me about some of the instructional videos available now:

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.