Lessons Through Grief

A few years back, I was invited to share my personal experiences with grief at an annual Arbor Hospice Memorial Event. Here's what I had to say in the hope that it may be helpful to you in times of sorrow.

We have gathered together today to remember and honor those who are no longer physically with us, our parents, grandparents, partners and friends, spouses and children and others whom we loved.

We are here, too, because love and loss are inextricably intertwined. Our presence is a recognition that grief is the dues we pay for the love that has enriched our lives. We are also here this evening because we understand the value of a community that can support us through difficult times.

No one ever knows how much others hurt or in what ways. So I do not presume to know your grief. That's why I am speaking with you this evening not as an expert, but as one who has lost and grieved and has come to understand the power of human resilience in the face of profound loss.

My first significant losses were the deaths of my parents at too early an age, deaths that for me changed everything that followed. My mother died suddenly in her 60s of a heart attack. A few years later, my father died slowly from a progressive, debilitating disease. Having experienced both, neither way of dying recommends itself to me.

Like you, I put one foot in front of another to do whatever was next in fulfilling my daily responsibilities, although I wasn't always sure that I had the capacity to do so. Over time, I got better. My grief became less raw and consuming.

Since then, there have been other significant losses, each of which has deepened my understanding of the unique and unanticipated ways in which grief can present itself.

While grieving is a complex and unpredictable process, I'd like to share with you what I've learned through my own grief journey in the hope that some part of it may be of value to you.

The first thing I learned is that we are not crazy, even though we may feel that way at times. Most of our reactions are quite normal.

After my mother's death, I had trouble remembering things, and more than once I drove considerable distance with no memory of any details of the drive.

I had once read about monks in a religious order in New York State who believed that we experience heaven and hell in this lifetime through our emotional states, and I couldn't imagine a worse way to spend eternity than with the pain I felt about the loss of my mother.

Some of us can't sleep, or we lose our appetites. We may be seized by overpowering emotions at unexpected times. We have mood swings, we are unable to concentrate, and we may feel angry, guilty or fearful for the future.

Our relationships often change. After my mother's death, my father and I regularly talked on the phone, a task he had automatically handed off to my mother when she was alive. As we talked more, we became much closer, and some of my most cherished memories of my father were during this period.

The second thing I learned is that death of a loved one often raises issues related to the meaning of life and of our own mortality.

Questions regarding life's purpose arise. Our faith may be challenged. We ask "Why?" and our suffering may be increased if we don't receive a satisfying answer.

We may use metaphors to help us understand what otherwise seems incomprehensible. I've heard people say that grief is a journey, a wound, a mystery, a dark forest, a large lake, a voyage on turbulent sea and an exclusive club with a steep membership fee.

When my father died five years after my mother, I thought of myself as an orphan, although being in my 40s, I hardly fit the conventional meaning of that term. As the oldest child, I was acknowledging that in the natural order of things, my turn was next, an awareness that didn't always sit easily with me.

To make sense of things, I wrote about what I was thinking and feeling. Although my concentration was poor for several months, I was eventually able to listen to music and to read poetry and books that had spiritual messages.

My third lesson was that things do get better, but they do so in their own way and time. One of the few certainties in life is that things change, as you well know.

I've heard Arbor Hospice grief support staff say that while the wound doesn't disappear, its rough edges are smoothed by time. The frequency, duration and intensity of our sorrow diminishes.

Our sleep and appetite slowly return. We take better care of ourselves. We set new goals and resolve to find happiness wherever we can. We may begin to feel moments of joy as happy memories emerge. How long this takes varies from person to person as we each grieve in our own unique ways.

We gather strength as we experience and move past "the firsts" - the first birthdays and anniversaries, the first holidays and so on. The long-dreaded first Christmas after my mother's death passed with far less sadness than I anticipated, partly because of the degree of cooperation among the members of my family, an occurrence that undoubtedly would have brought a smile to my mother's face.

I knew things were getting better for me when I would suddenly be aware that several days had passed without sadness. Tears no longer came to my eyes when I thought of my parents, and happy memories slowly emerged.

During this time, I learned that rituals of remembrance like this one can sooth us and that grief is easier to bear together than alone, at least for most of us. We are here this evening because there is hope and strength in family and community.

I also learned that following an ending there is a new beginning, although not necessarily the one we would have chosen for ourselves had we been given a choice. But between the ending and beginning there may be a desert of sorts. With time and the support of others, we find our way to a new reality, a new normal.

A final lesson was that we do not forget those who have gone on before us. Many of us fear that we will gradually lose the precious memories we hold of our loved ones. We may be afraid that as our grief diminishes, our loved ones may slowly slip away from us in our memories, a prospect that seems unbearable. With time, though, joyful and sustaining memories arise that offer strength and guidance.

I believe that our loved ones live on through us. My parents and ancestors and others I loved remain alive in me. Like stones thrown in a pond, their thoughts and words and deeds ripple into the future, influencing us and countless others, including generations not yet born, in ways that are sometimes quite profound.

Years ago a friend told me that he was about to travel to Florida to visit a dying friend of his who he thought he was unlikely to see again, and he wondered what he might say to him. I told him that I had recently read a story about a man who had sought a highly-regarded spiritual teacher to find an answer to a similar question. The teacher told the man, "Tell him that when he dies, a part of you will die and go with him and that he will never be alone."

Today, I might offer another perspective to my friend: "Tell him when he dies, a part of him will stay with you and be a part of who you are for as long as you live and even beyond in the lives of others."

Sometimes people ask me why I am a hospice volunteer. I respond that I do it because it's a privilege to be with individuals and their families at such a sacred time, a time when life is reduced to its essentials.

In that spirit, I thank you for the privilege of being here with you today. And I thank you for being here for yourselves and for each other.

What has your grief taught you?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

The Four Things That Matter Most

Please forgive me. I forgive you. Thank you. I love you.

Dr. Ira Byock, an expert on palliative care and end-of-life issues, offers these "four things that matter most" to patients and families in his clinical practice.

In an "On Being" interview with Krista Tippett, Byock noted that patients or family members often tell him that they don't know what to say to each other at the end of life or in the face of life-threatening challenges.

"If you're really stuck at any time, those four things are a nice way to start, whether you use them verbatim," he explains.

"No relationship is perfect and many relationships are troubled..." Tippett observed. "In a lot of families, there's going to be real work involved in being able to say those words and mean them..."

"I've wondered if there's something about being in that extreme moment of life, as you say, normal but ultimate, that creates an opening for some people to do that work, to say those words where it hasn't been possible in other points of the life span," she wondered.

"It shakes us free of the veneers, the layers of personality, of who we think we are, of protecting ourselves," Byock responded.

"You know when the times are that you can say those things most easily, when you've just slammed on the brakes and just narrowly missed getting killed and you're shaking like a leaf and you're in a cold sweat, and everything just almost ended. Pick up your cell phone. I'll tell you, it becomes really easy to call your spouse or your mother or father or your child and just say those things. You know, it just shakes us free."

To whom would you like to say one or more of the things "that matter most?" Resolve to do so sooner rather than later.

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

The Desire To Be Known

"As one gets older one's fear subsides. What becomes more and more important just to be known, known for all that you were during this brief stay. How sad it seems to me to leave this earth without those you love the most ever really knowing who you truly were." -The Bridges of Madison County

In the past three years, I have supported dozens of Arbor Hospice patients and their families in preserving patients' life stories on video and DVDs.

I have learned through those experiences that most of us have one fundamental thing in common as our lives near their end - we want to share what we have experienced and learned and to be known for who we uniquely are.

During the hour or two that it typically takes to record patient and family memories, patients share:

• Life events and memories that no one else in history has had or will ever duplicate;
• The simple but always profound wisdom that they have acquired over their lifetimes, no matter how long or brief life has been (the oldest patient was on the cusp of 101 and the youngest was 17); and
• Special messages of encouragement and support to children, grandchildren and other loved ones that will resonate across generations.

It is not necessary to wait until the end of life to reveal to others who we are. Use every opportunity that presents itself to reveal to your loved ones what you have experienced and what your life has taught you?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

1,000 Weekends

A few years back, I read an article that said the average 63-year-old man had 20 or so years to live, a number of significance to me because I was 63 at the time.

I quickly calculated that I had about 1,000 weekends of life expectancy, a number that while quite substantial had a finiteness about it that caught my attention.

I realized that it was time for me to make some fundamental decisions about the quality of life I wanted to have during those thousand weekends, not to mention the other days of the week.

Rather than being depressing, this awareness sharpened by my focus on ensuring to the best of my ability that I use whatever time remained - however limited or long it may be - in ways that are aligned with my values and goals.

Being, not doing

Interestingly, my new-found appreciation of the finiteness of life did not lead me to list things I wanted to do (for instance, a "bucket list"), but rather to determine how I wanted to be. As a result, I found myself jotting down terms like these:

• Gratitude: I wanted to be conscious throughout the day of the many things for which I am thankful.
• Compassion: I wanted to be sensitive to the suffering of others and to do what I could to alleviate it.
• Learning: My life is most satisfying when I am intellectually challenged through activities that stretch my mind and expand my perspective.
• Contribution and service: I am happiest when I am more focused on others than on myself.
• Mindfulness: The everyday moments of my life contain many riches that I can only appreciate if I experience them one by one.

None of us, of course, no matter our age, know if we will enjoy the satisfactions of 1,000 weekends or even just one.

Pondering these things recently, I decided it was time to update my longevity status, so I used the Social Security "Actuarial Life Table" to determine that I had a life expectancy of about 15.5 more years, which means I have just over 800 weekends remaining.

The clock is clearly ticking, as it is for each of us. To mix metaphors, I can hear the bell tolling in the far distance, but hopefully not yet for me.

What are the implications for you of acknowledging at a deep level that your life is finite, whatever its length may be? Does it affect the way you choose to live today?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

What Do You Say To A Grieving Person?

What do you say to a grieving person, particularly when he or she is someone you do not see often?

I found myself facing that question recently as I set off to visit an acquaintance who I spent time with a couple of times a year and whose husband had died since our last visit.

Do I express sympathy, which may evoke sadness and tears? Or do I wait to see if she brings it up?

During Arbor Hospice grief support groups, I have heard participants express anger when others don't acknowledge their loss or say the name of a loved one. I have also heard participants express frustration when someone expresses sympathy at a time when they are unprepared or unable to acknowledge the feelings that they experience.

It makes sense that some of us are confused about what to say to our grieving friends and acquaintances. So, I asked Arbor Hospice Grief Support Coordinator, Melissa Schultz to offer her perspective based on her work with countless grieving individuals and as someone who has herself lost loved ones.

Here's what Melissa told me:

"First and foremost, be sincere. Don't try to force sentiment that doesn't exist and speak from the heart. I think it's important to acknowledge the loss, despite the fact that it can be uncomfortable. Pretending that everything is normal leads to an incredibly awkward conversation, or lack thereof.

We often hear people say, 'I don't want to make them sad.' The fact is, they're going to feel how they do regardless of whether you bring it up. When you acknowledge the loss, it tells them that you truly care about how they're doing, and you're not just asking to be polite.

Keep in mind that context is key. If you start to discuss your friend's grief and she tears up, ask if she would like to continue talking. Let her know that you may not understand what she's going through, but that you're willing to listen.

Offering your presence to a grieving individual is one of the greatest gifts you can give."

What did I do? As my acquaintance and I greeted one another, I said, "You've been on my mind. How are you?" She took care of the rest.

This blog post was written by Dennis Sparks, Arbor Hospice volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

The Three Ways In Which People Die

I heard someone say that there are three ways in which people die:

The first is the cessation of life in the body, which is how most of us think of death.

The second is when our body is consigned to the earth or to fire.

The third is the last time our name is spoken.

The first type of death we do not choose, although we may be able to affect our longevity through life-style choices and the quality of our ending through palliative and hospice care.

Our choices regarding the second way we die, at least for most of us in the Western world, is burial or cremation.

But the third way we die - the ways in which we are remembered and the duration of that memory - is truly in the plane of the non-inevitable in which the human spirit thrives.

We can affect the ways in which we and loved ones are remembered by:

1. Considering the legacy we wish to leave. In a previous post, I suggest that any point in our lives we
    can affect our legacies by:

• Reflecting on our values and important goals and making adjustments when appropriate
• Preparing a written "legacy statement" explaining the values and personal qualities we want to demonstrate in our daily lives
• Determining the extent to which our daily words and actions match those values and goals and making necessary changes.

2. Telling and eliciting stories about the lives of loved ones as a way of communicating family
    heritage and values. Photos, letters and other memorabilia can be used to stimulate such
    storytelling.

3. Preserving stories in audio and/or video recordings. It is never too late to begin. As an Arbor
    Hospice volunteer, I have supported patients and their families in capturing such stories in the final
    days and weeks of life.

By what means do you or your family preserve important stories for the benefit of future generations and to keep alive the memories and names of those who have gone on before?

This blog post was written by Dennis Sparks, Arbor Hospice volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Choose Hospice Care To Improve Quality of Life And Perhaps Even Extend It

Dr. Ira Byock, an expert on palliative care and end-of-life issues, recounts his first hospice referral decades ago:

"I called up the hospice of St. Agnes, and it was the first time anybody from this medical center, the county hospital, had tried to make a referral. You know, hospice was a countercultural movement at the time, Krista. It was a social movement often by nurses and others, but very few doctors, in response to people dying badly, often dying in pain, often in hospitals, too often alone. It has grown up and now been incorporated back into sort of the corpus of medicine, but its roots have been as a countercultural response. And we've made a big difference, though we're by no means done."

Important progress has been made in recent years, as Byock notes, but his observation that "we're by no means done" is also significant.

In many ways, hospice continues to feel countercultural, at least to many doctors and their patients.

Far too many terminally ill patients and their families remain unaware of hospice services or come to those services too late to achieve their full value.

Referral to hospice, in the eyes of some doctors and patients, means giving up rather than improving the quality of life, and in some cases even extending it.

That means that some patients and their families endure needless suffering as futile and expensive health procedures are employed in the face of the inevitable.

As a hospice volunteer, I have talked with patients who told me that their doctors actively opposed hospice care even when the consensus of medical opinion was that they had at best months to live.

There are two reasons why it is important to begin hospice care early rather than in the final days or hours of life:

1. Hospice care enables a higher quality of life. Palliative medical care addresses pain and other symptoms. The hospice interdisciplinary team supports the patient and family in addressing the physical, emotional and spiritual aspects of the illness, the dying process and grieving.

2. In some cases, hospice may enable a longer life as well as a better one. A combination of palliative and interdisciplinary care can extend life as well as enrich it.

What benefits have you or loved ones experienced because of hospice care?

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Everyone Has A Story To Tell...

Humans are storytellers.

We seem hardwired to both create stories and to tune in to those of others.

Everyone has a story to tell, a story about the people and events that shaped their lives, about what they have observed and experienced in their lifetimes.

Through our stories, we demonstrate that we have had a lifetime that mattered and become immortal as the events and lessons of our lives are handed down through the generations.

Unfortunately, we too often only realize the importance of such stories when our elders are no longer with us. To prevent such regrets:

• Listen for stories. They are often all around us, told on porches and in kitchens as we prepare food and share meals.
• Don't be shy about inviting elders to share stories, particularly those who tend to be quiet and introverted. They may decline, but it is better to have asked than to later regret not having tried.
• Whenever possible, record family stories on ever-present smart phones and tablets. The opportunity may not come again. Later, they can be transferred to computers and edited by tech-proficient family members. Even low-quality video and audio recordings are better than nothing.

Family stories are important.

Stories preserved in the voices of those who come before us are a priceless gift to future generations, a gift that we can offer by paying attention and preparing for the many opportunities that will inevitably present themselves.

This blog post was written by Dennis Sparks, Arbor Hospice volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

"My role is to support patients wherever they may be on their faith journey:" An Interview With Rev. Diane Smith

I have a friend who lost her teenage son in a tragic accident. The Christian faith offered the boy's
father a measure of peace because he believed he would be with his son again in heaven. Contrarily, the mother's faith was irreparably altered as she questioned the nature of a God who would allow such a thing to happen.

Because of that experience and others, I have been especially curious as a hospice volunteer about religious faith as it relates to dying and grief and about the role of spiritual care coordinators as members of the Arbor Hospice interdisciplinary teams that serve patients and their families.

Rev. Diane Smith speaks with a patient's family member.

I asked Reverend Diane Smith, Lead Spiritual Care Coordinator for Arbor Hospice and Spiritual Care Coordinator for The Residence of Arbor Hospice, to talk with me about her work.

What is the role of spiritual care coordinators?
Our main role is to determine and address the spiritual care needs of the patients and/or families. Patients or family members, for instance, may request a particular ritual or representative of their faith.

Or, the patient or family may not be at peace with what is happening, and the spiritual care coordinator might explore what they are hoping for at this time and what has helped them be at peace in the past.

How do you distinguish between spiritual needs and psychological ones?
I don't think there is a distinction. None of us know for sure what lies beyond that screen that the patient penetrates when he or she dies. But we do know that death is a process which includes physical, psychological and spiritual components. A patient may be disturbed because of physical factors, such as pain or a reaction to medication, or experience psychological stress because of unsettling family dynamics.

There may be a faith struggle within the patient or between the patient and family. Spiritual care coordinators can assist the patient and the family in navigating those differences and becoming more accepting of them rather than trying to change one another.

What are the most common spiritual issues you encounter with hospice patients?
Guilt and fear are common, as is the need for reconciliation with God, the church or within the family.

Patients may also struggle with basic questions of meaning - they wonder what their lives have been about, what they have accomplished, the differences they have made, and to whom their lives are important.

It is said that there are no atheists in foxholes, which is also a metaphor that offers the possibility of deathbed conversions. Do you find transformative religious experiences as people approach their own deaths?
When people are in hospice care they pretty well know who they are and what they believe. While they may want to have discussions which help clarify their faith, I have not personally observed a conversion experience, although other spiritual care coordinators have reported that it has happened.

My role is to support patients wherever they may be on their faith journey. I have had patients, for example, whose faith tradition tells them they are never to doubt God is with them and that they are on their way to heaven. But nonetheless, they are scared, and I provide a safe place for them to share their feelings and fully express what they believe.

What do you find most challenging and most satisfying in your work?
The most challenging thing is to be clear about the boundary between my faith and the faith of patients. All of the spiritual care coordinators at Arbor Hospice are involved with their own faith communities, and five of us are ordained ministers. That requires us to be clear about the distinction between our faith and what the patient and/or family needs from us.

Another challenge is the possibility that something about the patient or family member triggers a response in us. For example, I met three patients who were in some ways like my father, and every time I went into their rooms, I had to keep in the forefront of my mind that they were not my dad. It was essential that I not project my father onto them or respond to them as if they were my father.

The most rewarding part of my work is being present at this important time in someone's life. It is a gift to be part of the miraculous journey that we each will take from life into death.

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

The Pain of Deception....

"What tormented Ivan Ilyich most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need quiet and undergo a treatment and then something very good would result...

This deception tortured him - their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie." - The Death of Ivan Ilyich

When I was young, many aspects of illness and dying were kept secret, not because it was thought necessary to shield children from life's unpleasantness, but because society struggled even more than today with acknowledging the inevitability of sickness and death.

A disease such as cancer, back in the 1950s, was more like a sham
eful family secret to be whispered among relatives and friends than a medical condition.

In recent decades, though, through the efforts of hospice and other health care providers, the subjects of death and dying are opening discussed on television and around dinner tables. Those who are ill, and those who are not, talk with loved ones about what they want at the end of their lives and prepare advanced care directives.

As a result, needless suffering for those at the end of life and their families has been significantly reduced.

Which means that this is not only an opportune time to live, but also in which we are more likely to die with the dignity and respect that is our due.

What is your experience with open and honest conversations about illness and death with family members and other loved ones?

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Is It Possible to Compare Our Grief With That of Others?

It is a natural tendency to compare our experiences and feelings to those of others, including grief at the death of a loved one.

The death of a child is usually regarded as the most devastating loss, followed by the death of a spouse, then a sibling or perhaps close friend, and finally a parent, particularly if the parent is elderly.

Several years of co-leading Arbor Hospice grief support groups has taught me that it is often more complicated than that, though.

Some people, for instance, who deeply love their spouses are able within a year or two to reconcile the loss and move on to a "new normal." Others who have lost, say, elderly parents - even in cases of long-anticipated deaths - may be surprised to find themselves grappling with the meaning and implications of that loss for much longer than they anticipated.

I have learned that:

• Each person's grief is unique. While there are commonalities that link grieving people, we grieve and cope with loss in different ways.
• That means that it is impossible to provide a precise timetable for grief or to predict with certainty what grieving individuals will experience, sometimes even in the next day or hour.
• The only one who can truly understand the meaning of a loss is the grieving person.

With the best of intentions and desire to comfort, people will sometimes say to a grieving person, "I understand what you are going through because I lost my (fill in the blank) last year." Grieving people are quick to point out - at least in the safety of grief support groups - that no one really knows what they are experiencing.

In many ways, our grief is as unique as a fingerprint and as unpredictable in its path as a tornado.

While we may have sympathy and empathy for the suffering of others, we cannot know another's grief sufficiently well to compare it to our own or that of others.

That is both a humbling and empowering understanding because it allows us to see people in their uniqueness and to treat them with the respect that is their due.

What have you learned about grief and grieving from your own losses or those of others?

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

I Existed. I Mattered. I Left A Mark.

"I existed. I mattered. I left a mark. You may not know it by looking at me now, but once I was a person of significance."

That is what Lawrence (a pseudonym) seemed to be saying to me when I visited him in his home to discuss a video of his life story, a free service that Arbor Hospice provides for its patients and families.

Just a few years ago, in the fullness of his work and civic responsibilities and his family life, I would have been fortunate to have a few minutes of his time. Now, he did not want me to go even though we had already been together for an hour and a half planning his video.

Lawrence took me on a tour of his home to see the many products and symbols of his notable career and hobbies.

I was reminded once again that at life's end we are reduced to a small number of essentials - a few precious relationships and, if we are fortunate, a familiar room and skillful and compassionate healthcare providers.

Illness and impending death are great equalizers. They are journeys we all take; rich and poor, the famous and the unknown, and we essentially take those journeys alone, although we may take them in the presence of loved ones.

Lawrence and the other hospice patients I have been privileged to know as a volunteer remind me that we are all persons of significance in our life journeys.

At the end of life, we have mattered to family members, friends, coworkers and neighbors. We have stories to tell about the events of our lives that can instruct and inspire future generations.

Not only have we existed, we have left a mark, each in our own unique ways.

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

How Do We Begin Conversations About The Care We Want At The End of Life?

If the content of daytime television talk shows is a guide, Americans are far more comfortable publicly discussing almost any aspect of their intimate lives than they are the irrefutable fact that they will die.

While we intellectually understand that we will not live forever, acknowledging that fact by talking
about it with loved ones is nonetheless an incredibly difficult thing for most of us to do. It is almost as if we have a superstitious belief that if we don't talk about it, it won't happen.

Yet, candid conversations with family members and close friends about the kind of care we wish to receive at the end of our lives may be one of the most valuable gifts we can give them.

And because that end sometimes comes suddenly and unexpectedly as well as from illness, these discussions are as important for 20-somethings as they are for older adults.

While we may know the value of such conversations, many of us are uncertain about how to initiate them and what to talk about once we do. That's why I was pleased to discover that The Conversation Project offers resources to help initiate these important discussions.

The Conversation Project offers a free "Welcome to the Conversation Starter Kit," which begins: "It's not easy to talk about how you want the end of your life to be. But it's one of the most important conversations you can have with your loved ones."

"This Starter Kit will help you get your thoughts together and then have the conversation."

"This isn't about filling out Advance Directives or other medical forms. It's about talking to your loved ones about what you or they want for end-of-life care."

"Whether you're getting ready to tell someone what you want, or you want to help someone else get ready to talk, we hope the Starter Kit will be a useful guide."

"We want you to be the expert on your wishes and those of your loved ones. Not the doctors or nurses. Not the end-of-life experts. You."

In addition to the Conversation Starter Kit, I recommend Five Wishes and Go Wish, both of which were described in an earlier post, to develop a better understanding of the type of care one desires at the end of life.

Have you initiated conversations about end-of-life issues with loved ones, and if so, how did you begin them?

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You many contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Beginnings That Follow Endings

It can be hard for those who have experienced a significant loss to believe that deep sadness and hopelessness can eventually give way to joyful memories, to hope for a better future, and even to new beginnings.

But my volunteer work with Arbor Hospice grief support groups over the past five years has taught me that these outcomes are possible for the vast majority of participants, as inconceivable as that may seem at the time of the loss.

We are naturally accustomed to thinking of our lives in a linear way - beginning, middle and end. We are born, we complete important life tasks and we die.

Grieving individuals, though, have shown me that we can think of life's inevitable endings in a different way, a prelude to new beginnings that more often than not lead to a kind of fulfillment that may not have seemed possible during grief's darkest days.

The interval between the suffering of an ending and the uncertainty of a new beginning is often disorienting, a time that William Bridges in his book Transitions calls "the neutral zone."

Bridges describes the neutral zone as "an important empty or fallow" period in one's life that offers an opportunity for self-renewal that can lead to an improvement in the quality of the new beginning which will eventually emerge.

Because this growth isn't automatic, however, Bridges recommends solitude and retreat to listen for "inner signals" that will help us understand what we really want at this time in our lives, and to ponder "what would be unlived in your life if it ended today."

A glimmer of the new beginning, Bridges says, may come in the form of an image, impression, idea or comment that resonates and provides direction.

Sources of guidance

In my experience, and from what others have told me, inspiration and guidance can be found in long walks, time spent in nature, journal writing, meditation and various spiritual practices among other activities.

Grieving individuals may also benefit from exploring their new-found insights with family members and friends, support groups or therapists.

This combination of inner wisdom and community support often leads the bereaved out of the neutral zone into new ways of celebrating holidays and special events, an expanded social network or even college degrees and new careers, to name just a few examples.

Through these processes and others, those who have been forever changed by loss learn how to incorporate sustaining memories of their loved ones into these beginnings, a blending of enduring love with new possibilities that offers hope during difficult times.

How have you experienced the "neutral zones" of your life, and by what methods do you sense the seeds of emerging beginnings?

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Hospice is Palliative Care And More

"May you live all the days of your life." - Jonathan Swift

I knew a man who entered hospice care after a long courageous struggle with an unrelenting disease.

Some of his friends, he told me, protested his decision, wondering why he would choose hospice when he seemed so "healthy," particularly when compared with how he felt during the various treatments that had extended his life by several years. To them, it seemed he had given up the battle, that he had given up on life.

The man explained to his friends that he hoped to live many more months and that it was important to him to form trusting relationships with the hospice staff - the nurses, social workers, chaplains and volunteers - who he anticipated would become a progressively larger part of his life in the weeks ahead.

While he didn't think of himself as a religious man, during his final months, he welcomed conversations about life's meaning and about what he hoped for in the final days and hours of his life.

Once, I told him that I admired his forthrightness and courage, and that I appreciated what he was teaching me about how I might someday face my own death.

After I spoke, we sat quietly for a moment. Then he smiled, a man who had spent his long professional career serving others, acknowledging that he had done so once again.

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@arborhospice.org.

Is There Such A Thing As A "Good Death?"

"Is there such a thing as a good death?" I asked Arbor Hospice President and CEO Gloria D. Brooks.

I wanted to know because I had often heard the term "good death" in hospice conversations and I was confused about what it meant.

As a volunteer, I have observed patients and families during the "dying process," which in the minds of many begins when a doctor delivers a fateful diagnosis, continues through sometimes grueling treatment and concludes many weeks, months or even years later.

As a volunteer, I have also co-facilitated grief support groups in which family members and others recount their often painful memories and flashbacks similar to those experienced by individuals with post-traumatic stress disorder.

Few patients and family members, I thought, would describe the dying process as "good." But, perhaps I didn't understand what the term "good death" meant.

So, I put my question to Gloria to help me reconcile the idea of a "good death" with my experiences. When I posed the question, I didn't know the personal significance it would have for her.

"Hospice is about self-determination and quality of life," Gloria told me. "It's about how patients want to live each day. We want to know the things that are important to patients so that those things can be sustained as much as possible until the end of life."

"Each patient defines what quality of life means for him or her," she said, "and we support patients in having that life for as long as possible."

"Hospice is all about exploring options. We don't tell patients and families what is the best option for them because we truly don't know."

Sometimes patients' choices are a difficult thing for family members and other caregivers, and sometimes for hospice staff as well. The patient decides, and the rest of us respect that even if it is not what we would have chosen for them."

Gloria pointed out that quality of life is about more than self-determination, though.

"If pain is getting in the way of quality of life, we address that. For some, it may be symptom management, like controlling nausea so they can enjoy the foods that are special to them. For others, it may be remaining lucid to have important conversations with loved ones."

As our conversation neared its end, Gloria told me about her mother's death this past summer to illustrate how challenging it can be to apply the concept of self-determination, even for someone as committed to it as Gloria.

"My mother had been ill for 18 months. I wanted her to go to a doctor because she was tired and losing weight. But that was not what she wanted. Eventually, though, she agreed to go to the ER 12 days before she died."

"Because we had done her Five Wishes, I was able to be very clear with the hospital staff and family members about what she wanted at the end, which was not to be in the hospital attached to a lot of tubes. So, I took her to The Residence of Arbor Hospice where she spent the last 36 hours of her life."

"My mother had a good death by her definition because she wanted to be in charge of her life and did not want to die in a hospital. I can only hope that as my mother's patient advocate, I was able to give her what she wanted."

"A good death is a subjective thing," Gloria told me, referring to her mother's wishes. "Other people might look at it from the outside and wonder if it was a good death or not."

What is your definition of a good death?
This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Why It's Essential to Prepare an "Advanced Care Directive"

Being a hospice volunteer has caused me to become more aware of my own mortality. Death is less

an abstract concept about something that will happen out there to someone else at some time in the future. That awareness has caused me to be more intentional in planning for the inevitable.

An essential part of that planning is creating an advance directive regarding the kind of medical care I wish to receive at the end of my life.

Here's what's involved:

1. Designate a person to be your patient advocate. Depending on the form and where you live, the advocate may be given a different title. Regardless, this person is given your durable power of attorney for health care and is responsible for making important decisions about your care should you be unable to do so. Forms are available at most doctor's offices and health care facilities, including Arbor Hospice.
2. Have the patient advocate sign the form indicating acceptance of the responsibility.
3. Create a living will that describes the kind of care you wish to receive at the end of life. Preparation of a living will can be informed and enriched by the use of planning tools such as Five Wishes and the Go Wish Game.
4. Have one or more conversations with your patient advocate so he or she knows specifically what you do and do not want. The tools mentioned above can provide ideas and terminology that enable these discussions. Have similar conversations with family, friends and others with whom you are close to avoid confusion or conflict should a situation arise that requires the patient advocate to act on your behalf.
5. Make certain that your physicians, health care system and family members know whom you have designated as a patient advocate and that they have copies of your living will. Take your durable power of attorney for health care and living will documents with you if you are hospitalized or are traveling.

Having end-of-life conversations and making these decisions may be difficult. Yet, they are truly a gift we give not only ourselves but those who care about us as we relieve them of the responsibility of guessing our wishes.

We also lessen the likelihood of misunderstanding and conflict among family members as they act on the wishes we've expressed in our living wills.

These are gifts that can extend well beyond our lifetime.

This blog post was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

We Become More Of Who We Are As We Are Dying

"We become more of who we are as we are dying," I heard Teri Turner, Director of Home Hospice Services at Arbor Hospice say in a presentation at a state symposium for hospice volunteers and staff.

I wasn't sure what that meant, and I wondered if that observation precludes the growth and learning that I thought I observed in patients I spent time with as a volunteer. Or, were they simply becoming more of who they already were?

 So, at my first opportunity, I put that question to Teri.

"This is not an original thought on my part," she told me. "It's more of an observation as I have spent time with people who are dying. I see those who are dying become more of their essential core. The things that are really important become even more important, and the trivial things fall away."

I asked Teri for an example.

"Dying patients who previously had been very busy in their day-to-day lives may let those activities fall away."

As a result, she said, "It is sometimes hard for family members who want to tell patients about events of their days and what family members are up to are met with disinterest. The patients are now focusing on other things."

"The focus at the end of life is on the quality of life, not the quantity of experiences or material things that now seem trivial."

What does it mean "to become more of who we are?" I wondered.

"My basic theory is that people die pretty much like they lived," Teri said. "If you have been a difficult person all your life, you are probably not going to turn into an angelic presence. If you've been a pretty nice person much of your life, you will probably be that way as you are dying."

"Sometimes, though, people who have been very intense or demanding are able to let much of that go and become calmer, almost totally different people."

That lead me to ask Teri if she believed that learning and change were possible in the last months and weeks of life.

"I think there's always room for growth at the end of life," Teri said.

"In some ways, it is a gift to know that we are dying. It makes it possible to pay attention to things that we may have neglected, to mend fences, to see things in ways we couldn't before."

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

The Arc of Life

We are born, and our world begins to expand. Nurses and doctors, parents and siblings, grandparents, aunts, uncles and cousins.

Our world grows as we learn to speak, read and write. We attend school. We acquire friends, co-workers and neighbors. We travel.

We may marry and have children and grandchildren. We volunteer in our communities.

And then, for most of us, after many decades, our worlds begin to contract.

We no longer go to work. We stray less from home as various debilities affect our mobility.

Sometimes we leave our familiar homes and neighborhoods to live with family members or in specialized facilities.

We have less energy for things that once interested us. We may become seriously ill, and doctors predict that the end of our lives are near. They encourage us to "get our affairs in order."

Our world shrinks to doctor visits, hospice nurses, and our closest loved ones.

It is not that the events of our earlier years no longer matter, though, because they shaped who we became and created the web of family and social relationships that we inhabit.

But the possibility of learning and growth remains with us.

It is because of the unique perspective offered during this final phase of life that many of us discover a broader sense of purpose and meaning.

We seek confirmation that our lives mattered. We want to be truly known by family members and friends. We restore and repair relationships when we can.

We seek to understand the arc of our lives and to acknowledge the people and events that shaped us. These are the gifts that those of us near the end of our lives give ourselves and loved ones, gifts that often resonate across generations.

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

Holding My Breath...

I was aware that I was holding my breath. The middle-aged daughter of the hospice patient had just asked an important question, and I suspected that she did not know the answer.

Although I was seated behind a video camera just a few feet away from the daughter and the patient, who was on the cusp of entering her tenth decade of life, I had become invisible to them as they engaged in a conversation about Mary's (as I shall call the patient) life.

Over the past hour, they had discussed Mary's parents and siblings. She told her daughter about the death of her father, which required that they move in with other family members during difficult financial times.

They talked about how children and teenagers entertained themselves during the Great Depression, about what dating was like during the 1930s and 40s.

Mary recounted life in Detroit during World War II and what it was like when family members and other veterans returned home.

"I haven't thought about some of these things in such a long time," Mary concluded. "It was such a different world."

As the conversation neared its end, the daughter asked Mary how she wanted to be remembered.

"As a loving mother," Mary said.

What life lessons did Mary wish to share with her grandchildren, the daughter wondered? That's when I found myself holding my breath.

After a moment's hesitation, Mary said, "I've come to the conclusion that you had better show kids how to live by living that way yourself and then talking about it. You say, 'That isn't the way we do it in our household, this is the way we do it.' There will be no lies in our family. You always tell the truth."

What life lessons do you offer to family members and friends?

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.