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.

Journaling

Journaling is one way to express your thoughts, feelings and experiences through writing or audio taping. It is a safe, personal and private activity that may help individuals with serious illness or their caregivers release stress and clear their mind.

How to Journal

You do not have to be a writer to journal, and there are no right or wrong ways to journal. Journaling

is for you alone, so it is whatever you want it to be. Some suggestions for keeping a journal include:

• Keep paper and pen nearby. You can write in your journal everyday or whenever you feel the need to express yourself. Don't pressure yourself to write. The words will come to you when you are ready to release your feelings and clear your mind.
• Let your thoughts flow. Do not worry about grammar or punctuation. Remember, you are the only one reading your journal and it only needs to make sense to you.
• You can write on any paper, in a notebook, a diary, a journal and even on a napkin or the back of cards.
• You can draw pictures if writing is not your favorite activity. You don't have to be an artist.
• Remember that your journal is yours alone, a private expression of your thoughts and feelings. No one should read your journal without your invitation or permission.
• If you are unable to write or writing is not comfortable for you, you can record your thoughts and feelings on audiotape.

What You Can Journal

You can write about anything that is important to you. Some suggestions of things to include in your journal are:

• Feelings and emotions
• Fears
• Accomplishments
• Major events in your life
• Your life story
• Favorite memories
• Favorite pictures
• Your hopes
• Your dreams
• Daily experiences
• Relationships and what they mean to you
• Conflicts
• Poetry or favority quotes and what they mean to you
• Anything that is causing you physical, emotional and/or spiritual comfort or discomfort

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.

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.

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.

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.

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.

What Will Your Legacy Be?

"You are doing this not only for your children and grandchildren," I explain to Arbor Hospice patients and their families as we begin to plan a video of the patients' life stories. "This video," I say, "is for generations not yet born, those who will follow you but will never know you personally."

During the videotapping, patients and their families typically describe the events of their lives - when and where they were born, the births of siblings, memories of grandparents and parents, and so on.

But patients also often tell stories that illuminate their legacies - stories, for instance, about the challenges they faced and the lessons they learned that offer wisdom and guidance to future generations.

What is usually revealed in these stories is that our legacies are shaped through an accumulation of daily actions, particularly those that contribute to the quality of the lives of others.

At 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.

By reflecting on the nature of the legacy we desire to leave and by taking deliberate steps to cultivate the qualities that will produce that legacy, we are likely to look back at the end of our lives with a sense of satisfaction and completeness.

The accumulated effects of these actions across a lifetime will be the source of the wisdom we share with those we love and those who follow us whom we shall never meet.

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.

Telling Stories

I have an interesting job that requires a lot of explanation. When I say I work for "Arbor Hospice," I often hear, "Are you a nurse?" No, I say. "What about a social worker?" No again. I don't bother giving my title; I get a lot of blank stares when I say "Communications Specialist." Saying I'm part of the marketing team doesn't sound right either.

When I talk about my job, I say that I tell stories. I have many responsibilities and do many things, but telling stories is one of them - and it so happens that it's one of my favorites.

I have the privilege of interviewing patients and/or family members about their lives and the care they receive from Arbor Hospice. I have spoken to men, women, children, mothers, fathers, sons, daughters, neighbors, friends and caregivers. I have heard about a man's World War II experience, a woman's heartbreak when her husband of 58 years was diagnosed with cancer, a daughter who forced her mother to move in with her, the smiles our music therapist and therapy dog bring, a parent's worst fear confirmed and the solace found in grief support, among many others. Each person has an amazing story, perspective and outlook that I can only hope to have when I or a loved one is facing the end of life.

It's not always easy. And, if I'm being honest, I cried the whole way home after the first interview I had with a patient and family (the ride home was well over an hour). When my boss asked the next day, "How'd it go," I think I said "great" and left out the part about my tears.

So why do I do it (besides the fact that it's part of my job)? I've learned so much from my interactions with these individuals and it's such an incredible honor to hear their stories. They chose to let us enter their memories at such a sacred time, and they're willing to share their hardships, pain, wisdom and joy. How magical is that?

And, it's pushed me to see outside my narrow view. I've begun thinking about my own story - and what I hope that will be. It's still being written, but at least I know what's on the first page. For me, it's my family. I wouldn't be the person I am without them, and I wouldn't continue striving for excellence.

What about you - how do you want your story to begin?

This blog post was written by Jaclyn Klein, Communications Specialist at Arbor Hospice. You can reach Jaclyn by commenting below or emailing her at jklein@arborhospice.org.