Talking to a Child About Death and Dying

I'd like to share a bit about grieving children. I frequently talk to parents and other adults who are concerned about children in hospice families. Naturally, adults tend to be protective of their children and when a family member is dying, this protectiveness tends to intensify.

If you are struggling with breaking the news to a child that a family member is terminally ill, keep in mind your child may already be aware that something is going on - often children know much more than we give them credit for.

Though they may not have been explicitly told yet, children are very good at picking up information from conversations around them. Kids are typically aware of death in general. Remember when you were young, watching Saturday morning cartoons and seeing Wile E Coyote die several times in pursuit of the Road Runner? Children see death in popular media as well as in the animal world around them (think of a dead bird in the yard or a deer by the side of the road).

A child of any age has the capacity to understand the dying process, death and grief. I think oftentimes as caring adults, we get stuck making sure we say the perfect thing or worry that we will somehow harm a child if we bring up these sensitive topics. Our task is to use language appropriate to the child's age and developmental stage to help them understand what is going on. Children have the right to know that a loved one is dying; they deserve the opportunity to anticipate the death and grieve the loss the same as adults. Understanding the reality of death is the first task in anyone's grief process.

I'm sure you're wondering how to go about having these conversations. While this list is in no way exhaustive, here are some tips on what to say and how to say it:

• Consider using a film like The Lion King to help set the stage for the conversation.
• Talk about how all living things die: plants, pets and people. Death is part of the life cycle.
• Use simple, direct language: "Your aunt is very, very sick with cancer. She won't get better and she is dying. People from Arbor Hospice are helping her be more comfortable."
• Use the language of the illness i.e. the name of the disease, as well as the words "hospice," "dying" and so forth.
• Be honest.
• Avoid whispering or altering your tone. This adds to the stigma of terminal illness and death.
• Ask the child if they have any questions of if they are sad, scared, etc.
• Assure children of all ages that they did not cause the illness and they will be cared for.

If you would like more information, please let us know. Arbor Hospice has extensive resources available for additional information. Note that the needs of grieving teens are different and will be discussed in a future blog post.

What concerns do you have about talking to children about death and dying? If you've had these conversations with young people,  what did you say and how did it go?

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

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.

Tis' The Season: Life Lessons From The Dogs

Are you feeling a couple of "la's" short of a "Fa-la-la-la-la" this season? By all accounts, we have been thrust headlong into the midst of a socially-imposed time of celebration. That's just fine if one  feels like celebrating. During this arguably most joyous of seasons, it is good to remember in our midst are those who are hurting, grieving and wanting to curl up and wait for the season to pass. Others may be feeling numb or in denial, but that's a different topic altogether.

So, what do you do if you find yourself not feeling much like celebrating because you're experiencing

the pain of a loved one now gone? When my Mom died nine days before Christmas, I didn't give much thought to what the rest of my holiday season might look like. Oddly - or not - my dogs (shown above in the picture from that Christmas) were a constant reminder of the valuable lesson to go with the flow. I celebrated (aka played) when I had the energy and also took time to curl up and just be when that was more my speed. 

What simple lessons have you learned to help you balance loss during a season of hope?

For additional resources, please visit our grief support section on our website.

This blog entry was written by Laura Adams, Administrative Assistant with The Arbor Hospice Foundation. You may contact Laura by commenting below or emailing her at ladams@arborhospice.org.

Irrational Fears of Death and Dying

Fear. It's the biggest thing holding someone back from their goals, dreams and desires. For some it's a fear of being disliked, of not being good enough or being too much. When it comes to the end of life, it could be a fear of initiating an important conversation.

On the first few interviews I went on with Arbor Hospice patients and families, I hesitated when it came time to ask the patient or family member about the illness and how it felt to be introduced to Arbor Hospice.

Our culture is uneducated and uncomfortable when it comes to death, and I was falling into the trap. I was afraid to ask almost as if I would be cursing myself or those around me by talking about death and dying, or invoke painful memories.

I was quite naive in those interviews with patients and families. They had clearly already begun thinking about the end of life and had chosen comfort care, maximizing the days that were left. They knew why I was there and were willing to share their story.

I had nothing to fear. Time and again, I've heard from patients and families how having important advance care planning conversations led them to Arbor Hospice or ensured their wishes were followed. I've heard patients tell me how wonderful it was to be able to focus on what's most important to them.

Many aren't so lucky. Research shows that most people want to die at home, without pain surrounded by loved ones. Nearly 60 percent do not have this experience. Only 30 percent of Americans have an advance directive, and I am not one of them. I justify this by saying I'm only 24, but I know that's not an excuse.

To be honest, I'm not even sure my parents have a written advance directive. I haven't taken the time to find out or initiate a conversation. I'm afraid they'll think I'm pushing them out the door.

But I refuse to let fear stand in my way. I know my fear is probably irrational - just like many of my fears. I want to honor my parents' wishes when their end of life comes, hopefully many years from now. And I hope they'll be proud and grateful that I asked them "what's most important" and how they want to be cared for at the end of life.

I'm facing my fears - one at a time. I encourage you to do the same.

This blog entry was written by Jaclyn Klein, Communications Specialist with Arbor Hospice. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.

Caregivers Can Easily Give Loved Ones A Simple Hand Massage

Touch has often been called the universal language of the heart. For individuals with a serious illness, touch, in the form of massage, reduces stress, anxiety and discomfort.

The elderly often have impaired hearing, visual acuity, mobility and vitality problems that can make someone feel isolated, helpless and vulnerable. Through the emotional involvement of touch, caregivers can reach through isolation and communicate love, trust, affection, security and warmth.

Massage can also help caregivers who are faced with managing behavior and guiding a person who may be confused or agitated. Touch is one of our most basic human needs and remains constant throughout life. Elders with dementia or other serious illness are often deprived of nurturing touch and meaningful physical closeness. Caring touch is necessary to bring about a sense of well-being and security.

Since touching someone's hand is so familiar, anyone can give a simple hand massage without causing further confusion or agitation. Here's a process anyone can use to give a hand massage:

1. Take your left hand and using the space between your pinky and ring finger, lodge it between the other person's pinky and ring finger on their left hand, resting your thumb on their palm.
2. Take your right hand and using the space between your pinky and ring finger, lodge it between the other person's index finger and thumb on their left hand, resting your other thumb on their palm.
3. Gently use your thumbs to put pressure on the other person's palm.
4. Massage according to the direction of blood vessels and towards the heart. Apply light pressure for general safety and to ensure comfort.
5. Gently rub from the base of each finger to the tip.
6. Gently squeeze the skin between the person's thumb and index finger to loosen up any tightness.
7. Switch hands.

This blog entry was written by Michelle Chaves-Torres, Arbor Hospice Massage Therapist. You may contact Michelle by commenting below or emailing her at mchaves-torres@arborhospice.org.

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.

Thanksgiving Journey

By the second bite of Thanksgiving Day butternut squash, it was evident something was terribly wrong. When we reached the hospital, it was clear nothing would ever be the same. Mom had suffered a massive stroke that left her rigid, unable to swallow and - for the most part - unable to speak. Some of her utterances were clearer than others, as were her tears that intermingled with Dad's and mine.

I won't bore you with details of the indignities of her hospital stay. Fortunately, an intuitive social worker was able to steer us toward hospice care for Mom when the inevitability of her condition was realized. Moving from the hospital to an in-patient hospice facility was like moving from the bleakest of days to a cozy fireside chair, so great was the tender care with which we were met. Thus began a new journey of thanksgiving for a life well-lived.

Mom had endured the ravages of multiple sclerosis for more than 50 years. Yet, her strength and bravery in the face of her final battle still managed to surprise her family and hospice professionals involved in her care. Dad and I were both by her side when she took her final breath on December 16, 2002. I look forward to further sharing with you some of the poignant lessons learned in Mom's final days.

For those of you who have suffered loss and grief through the holiday season - and may be experiencing it at this moment - please know the images that may be troubling you now will gentle over time. For those of you questioning whether hospice care is the right decision for your loved one, please don't delay in making the decision to give the gift of dignity, comfort and peace.

This blog entry was written by Laura Adams, Administrative Assistant to The Arbor Hospice Foundation. You may contact Laura by commenting below or emailing her at ladams@arborhospice.org.

Stretching the Truth

It has become a ritual these past four months since she's been back in Michigan, moving from her home in Arizona where she has spent the last 30 years. Mom turned 90 this year and it was apparent that her memory was deteriorating and additionally she'd been having some pain in her legs. Knowing that she had been diagnosed with  "dementia," my brother and I encouraged her to move back to Michigan where her children and their families lived. She agreed. It was time for her to move closer to family.

Since I work full-time and have two teenagers at home, it is difficult for me to see her during the week. So, every Sunday morning I pick her up and we go to church together followed by lunch at the local deli. She's decided to join the church so I've attended the three required new member get-togethers with her. "We lived in Swissvale, Pennsylvania," she told the group of ten at the lunch table, smiling at me as she said it. Well, the truth is "we" never lived in Pennsylvania, but she lived there when she was in high school. I stopped myself as I began to disagree. What did it matter, really? No one was going to remember where we lived. Then, she went on to exclaim that she was "rejoining the church," saying that she had belonged to this church before. She did live in this town for two years after we returned from an overseas assignment. It was possible. But, I don't think she and my dad belonged to this church.

What do you think? When our parents start speaking untruths based on their dementia, should we correct them, or just let it go?

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.

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.

Flying Lessons

Dad's terminal diagnosis was severe aortic stenosis. In layman's terms, the aorta that pumps blood
away from the heart to other organs, including the brain, should have been like a garden hose but was more of a pin-sized flow. Dementia was only one symptom but was the most devastatingly apparent.

Dad had always been a story-teller and loved to recount his boyhood days as the oldest of four rambunctious boys, as well as his Army and traveling experiences. One day, Dad began to talk about his days piloting a single-engine plane. My initial response was to say, "that was your brother Bill, remember?"At first, Dad agreed that he had never flown a plane and laughed it off as what he called "old-timer's disease." Truth prevailed.

As time went by, Dad began to weave more vivid tales of his flying escapades. In one tale, he buzzed a dairy farm and scared the cows so badly their milk couldn't be used that day!

As I realized the lines of imagination and reality were becoming more blurred, I made a conscious decision to give Dad his dream. Phrases like, "don't you remember" would never again escape my lips. Instead, I replaced them with questions like, "will you tell me again about the time you flew over Allegheny State Park in the fall" and "what did it feel like to fly over Niagara Falls?" I wasn't feeding into a lie, I was freeing his mind to soar and giving him back the joy of younger years, whether real or imagined. It was his truth and I made it mine. Dad taught me to fly with him and never give up on dreams.

This blog entry was written by Laura Adams, Administrative Assistant to The Arbor Hospice Foundation. You may contact Laura by commenting below or emailing her at ladams@arborhospice.org.

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.