Category Archives: elder care

Bridging the Gap Between Generations

Since 2018, I’ve been deeply involved with Age Friendly Teaneck’s (www.agefriendlyteaneck.org)  four-week summer internship program for high school students, known as Exploring Careers in Aging. The program has two main goals: to give students the opportunity to learn about a variety of careers in aging (ranging from health care to architecture and construction) that they might not have been aware of; and to combat the many stereotypes about aging that are still far too prevalent in our culture. We encourage intergenerational connections with visits to a variety of venues where interns and elders can find common ground; and we aim to combat the isolation and loneliness that can arise in part because of the culture’s misconceptions about aging. 

            One of my roles throughout the internship is showing films that center on some aspect of aging, and conducting discussions with the students after each screening. One of my favorite films – and the one we show first – is “Lives Well Lived,” a documentary by filmmaker Sky Bergman. I love this film because in the process of interviewing 75 people between the ages of 75 and 100, we get to know so many women and men living active, productive and meaningful lives, talking about what, exactly, makes for a life well lived. They are all positive, they have a sense of purpose in their lives, and they are clearly resilient. It is inspirational. And it offers plenty of food for thought for our interns.

            Sky embarked on the documentary by interviewing her then-99-year-old grandmother, to show how active and engaged in the world she was: cooking, socializing, going to the gym and reflecting on her life and what has made it so meaningful. Sky then broadened her lens to include many other elders to learn about their lives too. These were not people who had lived a life free of hardship or heartache.

Many recalled the traumas of World War II: one being separated from a parent in fleeing a country; one being forced to live in an internment camp (and becoming a widow with two young children as her husband fought for this country), for example; the challenge of starting a new life in the U.S.  Others were active in the civil rights movement; or 

overcame hurdles to complete their education years after early education was interrupted. And yet their positivity remained intact. And they had plenty of great advice for all of us.

Creating a Movement

           I admire Sky greatly because her own story didn’t end after she had done this documentary. It has evolved into a movement that connects elders and members of younger generations, to share their experiences and outlooks, which has enriched the participants. And she is determined to encourage others to find ways to bridge the gap between generations and to understand “the transformative power of listening to and learning from each other,” Sky says. “Ageism diminishes when generations connect.”

            And so she has published a book, “Lives Well Lived: Generations — Resilience, Positivity and Purpose at Every Age” to spread that message. The book is divided into several sections that roughly mirror Sky’s own evolution: why she decided to do her documentary; glimpses of many of the people she features in the documentary, quoting their observations; and how the movement to connect generations has grown. Of great value are the roughly three dozen chapters written by intergenerational program directors from all across the country – with links to their websites – about what they do, how they do it and what the benefits have been.

Programs range from the social (such as sponsoring intergenerational dinners) to such pressing issues as housing affordability and voter registration. The book also includes considerable guidance for those who are interested in either screening the film and starting a discussion about it; or starting an intergenerational program of their own. There is more guidance on the website www.skybergmanproductions.com. The book is available on Amazon at  https://a.co/d/aBvvbaG

            Two years ago, one of our Age Friendly Teaneck interns was so taken with the film that she decided to do her end-of-internship project about a few people in our town who had embarked on their second chapters. And we also arranged for her to interview Sky by phone. I can tell you that it was hard to tell who was more enthusiastic about this interview, our intern or Sky herself. Which to me proved the essential wisdom of this intergenerational movement. 

AMAZON: bit.ly/LWLAmazon

iTUNES: apple.co/2YpODcI

PBS Passport: pbs.org/show/lives-well-lived

KANOPY: kanopy.com/en/product/12391561

A Troubling Bill in South Carolina that Would Suppress Medical Guidance

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            It’s dangerous when politicians to enter the room with physicians and patients. That certainly applies to the many punitive and egregious measures states have adopted about reproductive and transgender rights.  But another type of proposed legislation — this one a barely noticed item — caught my interest.

            In short, H.B. 3615, introduced in the South Carolina legislature, would prohibit health care facilities from initiating discussions about “Do Not Resuscitate Orders” with patients and patient family members, with exceptions. At the moment, the bill is in the hands of the House of Representative’s Committee on Medical, Military, Public and Municipal Affairs, which is headed by a Republican legislator.

            What?? If you are in the hospital being treated for a serious illness, or perhaps a life-limiting illness, isn’t it right, moral and in fact legal to learn about and understand all of your options? And if you cannot make decisions for yourself, shouldn’t your family be accorded the same? In short, yes. In fact, if you are on Medicare and have a discussion in your physician’s office about how you feel about Do Not Resuscitate (DNR) and other measures that you can build an advance care plan around, Medicare will compensate your physician for that discussion.

            What on earth would prompt a legislator to introduce such a bill? The question nagged at me until I decided to call Rep. Annie McDaniel in South Carolina to ask her about it.  McDaniel is a Black woman Democrat in a state with a Republican supermajority in both its House of Representatives and its Senate. 

            We talked logistics first. Rep. McDaniel has no idea about whether or not her bill will pass, but she mused that since the majority party is all about pro-life, perhaps it will support this legislation that addresses end of life issues, not just life’s beginnings. 

            When I asked her what prompted her to draft this bill, the answer was less surprising and more nuanced than I had initially thought. It was born of unsatisfying communications in the hospital where her mother was being treated for a serious illness, when it seemed like every few hours, McDaniel said, someone would come in to ask her mother to sign a DNR statement. It seemed cold and insensitive, when what the family really needed to know was how her mother had gotten to the state she was in, the range of treatment options, and what her prognosis was – all communicated by a person with compassion. 

Beyond Just the DNR Question 

            So it wasn’t really about the idea of a DNR in itself; at heart it was about the often poor and fragmented communications too many of us have had to contend with in a hospital setting. Even under the best of circumstances, it’s not unusual to feel confused and powerless, or to struggle to learn how and when to communicate with medical staff in charge with your or your  loved one’s treatment.

Is the answer to that much broader issue a simple ban on discussing DNR orders? No, especially if no one has taken the time to explain what that order means, what resuscitation truly involves, and what other types of interventions might be necessary to sustain a person’s life.

            The bill may or may not pass. I tried to reach Syllest Davis, chair of the South Carolina Committee on Medical, Military, Public and Municipal Affairs, to get her insights, but have not heard back from her. Absent a DNR in place, will lawmakers worry that it will simply cost too much to keep people alive through mechanical means and prove too much of a burden for the health care system, for example? What concerns me more about the bill, though, is the possibility of its taking on a life of its own in the online ether, somehow prompting other states to follow suit. 

If that happens, it will become even more important for us to have had advance care discussions in advance of a possible hospital stay; put our ideas and preferences in writing and absolutely make sure to tell our loved ones what we want and what we don’t want in the event we cannot speak for ourselves. 

This is just one of many health care and medical issues that are sure to vex us in 2025. But in the quiet as 2024 winds down, I want to wish you all a wonderful holiday season and  a happy and healthy new year. 

Assisted Living for Disabled Elders: What to Look for and What to Ask

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Since 1990, July has been Disability Pride Month, a time for people living with disabilities to honor their unique talents and skills. Why July? The Americans with Disabilities Act (ADA) was signed on July 26, 1990. It prohibits discrimination against individuals with disabilities in all areas of public life, including employment, transportation, housing and access to various government programs and services.

Because disabled elders may suffer from isolation, loneliness and/or inadequate care owing to discrimination on two counts – their age and their disability – it was heartening to find a useful guide to assisted living as an option from Caring.com. This is a senior care resource for family caregivers seeking information and support. Here’s the link: https://www.caring.com/senior-living/assisted-living/assisted-living-for-seniors-with-disabilities/.

The Guide covers a range of disabilities, including intellectual, sensory, physical, emotional and dementia. Assisted living can provide a less restrictive (though less regulated) and less expensive housing option than nursing homes.  Compared to nursing homes, the guide explains, there are often more choices in accommodations, such as private or shared rooms, in-room cooking facilities, separate living areas and pet friendliness. Services are generally tailored to meet individual needs, with an emphasis on maintaining elder dignity and helping seniors to live as independently as possible. 

 The Guide covers costs of assisted living, potential sources of funding, what to look for when choosing a facility and other possible housing solutions. It also lists disability resources for each state. 

What to Look For at an ALF: Building Layout

  • Are there alarms or other security features in case you fall or need help with an assistive device?
  • Do the common areas have comfortable furniture to support residents with disabilities that cause chronic pain?
  • Are the walkways free of objects that could block a wheelchair or other mobility aid?
  • Does the community have plenty of handrails to make it safer for residents with disabilities to move around?
If the community has a dining room, are the tables designed to accommodate

What to Look for in Activity Options

  •  Does the community offer modified activities for residents with limited mobility?
  •   re there activities you can participate in if you use a wheelchair, walker or other mobility aid?

  • If the community offers transportation to off-site activities, are staff members available to accompany residents who need assistance?

Questions To Ask For Seniors With Disabilities

In addition to touring a community, checking out its facilities and reading reviews, Caring.com advises asking particular questions of residents, their caregivers and staff to help people decide whether a certain facility is the most suitable choice. 

 Example questions from the Guide include:

  • What training do your staff members have?
  • What experience do your staff members have with this particular disability?
  • Must staff pass criminal background checks?
  • What resident safeguarding policies do you have?
  • What is your ratio of staff to residents?
  • Can staff administer medications?
  • Do you have overnight staffing?
  • What services are included?
  • What additional services are available?
  • How often do you review care plans?
  • What programs do you offer for people with this disability?
  • How do you ensure social integration opportunities?
  • How do you try to meet physical, cognitive, emotional and spiritual wellness needs?
  • Is your facility fully accessible?
  • Do you offer accessible transportation?
  • What assistive technology do you offer?
  • What safety, security and emergency features does your facility have?
  • How often are health and wellness checks performed?
  • What happens if my loved one’s condition worsens?
  • Can you accommodate residents with multiple disabilities?
  • How do you communicate with family members?
  • How do you encourage family involvement?

Caring.com’s guide also notes that additional fees may be required for the following:

  • More frequent safety checks
  • Reminders to complete tasks
  • Medication administration and management
  • Clinical or rehabilitative services
  • Pharmaceutical and laboratory costs
  • Nurse or physician services
  • Counseling
  • Memory care neighborhoods
  • One-on-one care
  • Personal care services, such as bathing, toileting and dressing
  • Personal care supplies
  • Assistance with activities of daily living and instrumental activities of daily living
  • Ambulation and transferring
  • Transportation
  • Assistive technology    

Other additional fees may include:

  • Charges for pets
  • Salon services
  • Excursions
  • On-site purchases at a store or cafe
  • Laundry
  • Wi-Fi and telephone calls

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

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!

Connecting Musically: A Volunteer’s Memoir

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.

Why It Matters to Talk About Values with Dementia Patients

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.

Planning Ahead in the Time of Covid-19

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.

Having ‘The Talk’ With Mom and Dad

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.

Looking Ahead with Resilience & Purpose

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.