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.

Suggestions for Working Caregivers

If you are a working caregiver, you know what it is like to balance multiple things at once, trying to have a life while keeping some balance among responsibilities. Your caregiving role may be hard, even overwhelming but there are steps you can take that may ease the burden and ensure that your loved one is receiving the best care.

The following list contains suggestions for caregivers. Caregivers are often overwhelmed and don't recognize how easy it is to make minor changes that can help their loved one be more comfortable, while easing the caregiving experience.

1. Talk to your employer. Caregivers should let their managers know that they are caring for a loved one and discuss their needs related to caregiving. Make it known that you are committed to your job and want to find ways to remain productive. There may be options, such as different work hours or the ability to work from home.
2. Know your rights. Consult human resources about what you are entitled to under the law. The Family Medical Leave Act (FMLA) requires large employers to provide up to 12 weeks of unpaid time off with job protection when workers must care for a sick or injured parent.
3. Know your limits. When you are juggling caregiving and working, stress can come from everywhere. Identify what specific task, attitude or amount of work overwhelms you. This will help you know where to ask for help.
4. Forgive yourself for any bad days and give yourself a fresh start the next day. Understand that you are not going to be able to do everything, or solve every problem. Remember everything you do right and learn from your mistakes.
5. Understand visual limitations. With age and serious illness, it is common for someone's vision to change. Recognize that it may take longer for your loved one to adjust to different lighting or recognize something. Keep in mind that visual impairment and falling have also been linked. Reduce fall risks and give your loved one time to see and recognize objects. Hold things directly in front of your loved one, his or her peripheral vision may be impaired.
   
6. Manage medications. People with serious illness and the elderly often take many medications. Talk with your doctor to ensure that all medications are managed and they are not mixing to cause unwanted symptoms. It is possible that your loved one's change in behavior or emotion is due to medications.
7. Involve your loved one. Sometimes, your loved one might exhibit difficult behaviors because he or she is bored. Seniors or the seriously ill may not have the stamina for long trips but they may enjoy going out for an hour or two. A simple trip to the grocery story - colorful flowers, fresh produce, bakery smells, energetic families - might engage and excite your loved one. Keep in mind that this really depends on the person's condition and what they feel up for.
8. Develop ritual caregiving techniques. Caregiving tasks, such as helping your loved one in and out of bed, should be ritualized. Establishing rituals that you and your loved one can follow will ensure the best possible care. It will also help your loved one know what to expect and how something is going to happen. Visit the resource section of our website for how to caregiving videos.
9. Create an atmosphere comfortable for your loved one. Often times, the person with a serious illness has a bed in the family's living room, or a room on the first floor, near a bathroom. While this may be ideal for helping someone move about, it can be very distressing for your loved on. Keep in mind that your loved one may not sleep well if there is noise around him or her, if the television runs continuously or if someone is talking. Make sure your loved one is in a place where he or she can keep his or her dignity and have some quiet.
10. Understand the difference between listening and talking. Take the time to really listen to your loved one. What does he or she want? If you are doing all the talking, you are not uncovering his or her real needs or desires.

Based on your own experiences, what other advice do you have for caregivers?

This blog entry was written by Jaclyn Klein, Arbor Hospice Communications Specialist from feedback from Arbor Hospice nurses and social workers. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.

Three Books To Use With Grieving Children

A book is a very simple and versatile tool to use when talking to children about the end of life and  their grief. Over the years, I have found myself recommending three books time and time again. Here's a brief description of each book and when I typically use each one.

When Dinosaurs Die: A Guide to Understanding Death
by Laurie Krasny Brown & Marc Brown

When Dinosaurs Die is written at a young reading level and appropriate for both anticipatory grief and bereavement. What I love about the book is that it's broken into short chapters that address very specific aspects of death and grief. For example, "Why does someone die," "What does alive or dead mean," and "Ways to remember someone." The book can certainly be read straight through, however, it's nice to flip to one chapter to address a particular topic. The illustrations are kid friendly and the language is straightforward. The dialogue between the adult and child dinosaurs will give adults good ideas for what to say with their children. If you purchase just one book, this is the one I would suggest. You can find the book here.


Jungle Journey: Grieving and Remembering Elenaor the Elephant by Barbara Betker McIntyre

Jungle Journey is appropriate for bereaved children and young teens, and I have typically used this book to explore different ways people grieve and cope with loss. The book discusses the death of Eleanor (a parental figure) in simple terms. What I really likes is that each of her animal friends has a very distinct emotional and/or behavioral reaction to her death. I find that youth easily identify one or two animals that grieve like they do. After outlining each animal's grief response, the book transitions into ways the animals mourn and support each other as they continue on with life. The illustrations are beautiful and the book normalizes a variety of grief reactions. Jungle Journey is a wonderful tool to facilitate a discussion or art-based activity about grief and healthy coping. Find the book here.


The Invisible String by Patrice Karst
The Invisible String is appropriate for children, teens and adults in both anticipatory grief and bereavement situations. It's my favorite "back door" grief book because it talks about how even though we may be separate from our loved ones (for whatever reason), we are never truly alone and always connected by an invisible string of love. I frequently use The Invisible String with children who are having fear/separation/anxiety issues to reassure them that they will always be connected by love and memories. Adults seem to be profoundly touched by this book's message as well. The Invisible String is a great reminder that no matter what life brings us, we can trust that the love we have for family and friends will be with us forever. You can find the book here.


This blog entry was written by Becca White, Arbor Hospice Grief Support Coordinator. You may contact Becca by commenting below or emailing her at rwhite@arborhospice.org.

The Hardest Question

The family dropped by The Residence of Arbor Hospice unexpectedly instead of setting up an appointment, which is the preferred course. So, out of desperation, they tried my line. "I'll do it," I enthused looking for an excuse to leave my computer and interact with family members.

Introducing myself to the team of five, I learned they were all visiting from out of town. Looking exhausted as families so often do by the time I meet them; California, Colorado, Washington, they were all here from somewhere else trying to do the right thing for their sister. "I can't care for her at home any longer," confessed the daughter, who was doing her best but needed support. Two days of meetings with the oncologist, the internist, the surgeon, had left them spent and bewildered. What was the right thing to do?

After the tour, I responded to a few questions, "do you have physical therapy and occupational therapy," asked one. No, I explained that our focus was on comfort care and that if rehabilitation was needed, their sister/mother would be better off in a skilled nursing facility.

When all their questions were answered to the best of my ability, I asked the stumper question. It's the question I've come to learn that stops them cold. I have only met one family who could answer it right away.

"What's important to your sister from this day forward? If she can't be cured, how does she want to spend the remainder of her life?" It is my experience that these are the questions that often don't get asked during the frantic encounters with our medical system. These questions and many like them, are asked of patients and families when a loved on is enrolled in hospice and then the hospice team works to make it happen.

"Well, she likes baths; do you have a place for a bath?" I showed her the spa room with a large jacuzzi-type tub. "She lives on the water and loves looking out on the water." I showed the pond and the beautiful gardens. "She'd like this," remarked the daughter.

I have found that when we focus on what the dying person wants, by giving them a voice, the patient and their family is energized. The mood changes from doom and gloom to one of possibilities. There is an immediate shift in energy.

So, what about you, do you know what you want at the end of your life? Here are my top three wishes:

1. I'd like to be outdoors when I die, preferably under a tree with the sunlight on my face (unless it's  
    winter of course, then I'd like to be by a sunny window).

2. I too love baths, with lots of bubbles, please.

3. Funny YouTube videos like Ellen DeGeneres - Here and Now should be playing and if we laugh
    too hard, please play some Carol King and the Beatles.

This blog entry was written by Margaret Adrain, Arbor Hospice Vice President of Marketing and Business Development. You can contact Margaret by commenting below or emailing her at madrain@arborhospice.org.
 

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.