Monday, December 30, 2013

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

Thursday, December 26, 2013

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

Monday, December 23, 2013

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

Thursday, December 19, 2013

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

Wednesday, December 18, 2013

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

Monday, December 16, 2013

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

Friday, December 13, 2013

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

Thursday, December 12, 2013

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

Tuesday, December 10, 2013

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

Wednesday, December 4, 2013

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

Monday, December 2, 2013

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

Friday, November 29, 2013

Just Because I'm Sunburned Doesn't Mean I Was On Vacation

I really don't like heat. Growing up in the oven that is the Arizona desert, I discovered early on I prefer a cooler climate. Dad and Mom, on the other hand, were originally from Buffalo and couldn't ever be warm enough. They welcomed Arizona's heat. Inevitably, both my parents required additional care later in life and I found myself spending extended periods of time in my native climate. Some of those times were during the heat of summer - you guessed it - my least favorite season there. In fact, when it was time for Dad to move to an assisted living facility, I single-handedly packed up, cleaned up, cleared out, sold and moved everything from my childhood home in temperatures well over 110 degrees.

I had made the ultimate sweat sacrifice. I had been the good daughter, the responsible, loving, adult child. I did it all and returned to my job weary, parched and sunburned. Rather than the understanding I thought I would receive for the super-human feat I had just accomplished, I found myself facing co-workers who made nothing but jealous comments about my time away in the sun. I learned some valuable lessons from that experience, including that was not the job for me and caregiving often involves being misunderstood.

Oh, how I wish I knew what I know now. For example, this is National Family Caregivers Month. Blogs (like this one) and other online resources are available for caregivers. You don't have to face your caregiving challenges - whatever they may be - alone!

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

Tuesday, November 26, 2013

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

Monday, November 25, 2013

Grieving at the Holidays

My first response to the upcoming Thanksgiving holiday was to start thinking about what to cook. I love to create expansive holiday meals for my family and look forward to menu planning, decorating the table, choosing flowers and using family heirloom china that has memories attached to each serving platter, plate and cup.

Then, my thought turned to the realization that this would be the first Thanksgiving without my mother, who died four months earlier. This year, there would be no negotiating about whom to visit on what day for this family divided by a thirty-year-old divorce, with parents and siblings who don't get together at the same time. No discussion about what time to serve dinner to accommodate everyone's schedule. No admonishment to "not overdo it this year - cut back on what you are serving" meant to spare me from time and calories, not realizing how I loved this work and opportunity to create memories with my family.

And then, I realized my own self-care solution this year would be to get out of town. For this first post-Mom Thanksgiving, my husband, son and I will spend four days together in another city, focused on each other, grieving this loss in a different setting. For me, it will be important to remember all of the other Thanksgivings spent with my original and married families, and how important it will be to create a new normal.

I will certainly grieve and miss her presence this year. Yet, at the same time, I will also celebrate the 48 other Thanksgivings I had with her, and hope that I can now reinforce how important holiday traditions are with my own son, and create new memories for years to come.

This blog entry was written by Gloria D. Brooks, Arbor Hospice President & CEO. You may contact Gloria by commenting below or emailing her at

Thursday, November 21, 2013

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

Tuesday, November 19, 2013

How Do Men Grieve?

"How do men grieve?"

Eleven women shifted slightly in their chairs to take in my response to a question posed by a participant in an Arbor Hospice Parent Loss Grief Support Group.

Several participants had expressed puzzlement or concern about how men in their lives grieved - or didn't seem to grieve - the loss of a loved one.

The fact that I was the only male in the group, which is not uncommon, speaks volumes in itself about how men grieve and don't grieve, and participants hoped I could shed some light on the matter.

I began by saying that I obviously could not answer for all men, and that in my experience the ways men responded to loss were as varied as the ways women responded.

I said I've known women who have not shed a public tear at the loss of a loved one as well as men who were tearful at the mention of loved ones many months and years after their deaths.

Having acknowledged the ways in which men and women are the same, I noted that many men had been socialized not to reveal their feelings.

I also shared my observation that some men prefer to engage in activities to express and manage their feelings rather than discussing them with others in support groups or other settings that feel artificial.

In your experience, how do men and women grieve differently?

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

Monday, November 18, 2013

I'm Not Giving Up My Keys

"I'll go, but I'm telling you now, I'm not giving up my keys," was the response of my 90-year-old mother when I called to remind her of her driving assessment test in the morning. "I only turn right." She exclaimed remembering that my brother taught her how to drive the three miles from her independent living apartment to his house via a route that included only right-hand turns.

I smiled, loving her feistiness. Last week, I received a call from "the home" as she calls it, to tell me that my mother was leaving a rock to prop open the fire escape door that leads to the ground floor directly across from her apartment, from which she starts her daily four loops around the building. "It's one mile!" she brags. Apparently, she's been reminded that this is a security violation but continues to prop open the door so that she can enter after her walk.

I hope when and if I reach her age that I am a bit of a rebel too. It reminds me that she is still alive, still able to fight for her "rights." I like it when her personality surfaces, when she has an opinion. I'd rather deal with her rebelliousness than the blank stare that is becoming more frequent. That confused look frightens me, her expression reminding me of the swirl of the icon on my computer screen when it needs to be rebooted.

I know we'll be having the "you're not driving anymore, mom" discussion soon. Any tips on how to make this happen and keep her whole?

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

Thursday, November 14, 2013

Grieving in Our Own Way and Time

They may have sat in their cars uncertain and reluctant to enter the building.

They may file into the meeting room filled with apprehension about the strong feelings of sadness they may experience there.

They are participants in an Arbor Hospice grief support group who have lost spouses or partners, children, parents, siblings or other loved ones.

I know from years of experience co-leading these groups that many tears will be shed on that first evening. I also know that many participants will report at our next meeting that the intervening week was a difficult one for them because of the emotions they experienced at that first session.

To better understand what draws participants to these groups given the strong feelings they may evoke, I asked Melissa Schultz, an Arbor Hospice grief support coordinator, what motivates individuals to attend.

She told me that for some participants it is the only place in which they can talk about their losses because the people around them were uncomfortable with the subject or thought that they had grieved enough. Some attend, she said, because they had previously experienced the benefits of social support in dealing with significant life issues.

Participants in these groups have taught me that there is no one right way to grieve, that we each do it in our own way and in our own time.

I have also learned that the vast majority of us who have lost loved ones find our way over time to sustaining memories, a process that is truly at the heart of a grief journey that is for each of us uniquely our own.

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You can contact Dennis by commenting below or emailing him at

Tuesday, November 12, 2013

Holiday Feelings of Disconnect

I was recently the co-facilitator for an Arbor Hospice grief support group where a participant noted that as more time passes since her mother's death, the more disconnected she feels from her. This was troublesome because the participant wanted to maintain connection with her mother while healing at the same time. In a way, she is receiving mixed messages: grief is supposed to get easier with the passage of time, yet, she feels that she is starting to let go of her mother in a way that she does not wish to.

I spent the rest of the evening pondering this notion of disconnection. Gone are the days where grief counselors are encouraging clients to completely sever the relationship with the deceased in order to heal. Our profession has shifted to the idea of continuing bonds, that is, maintaining a relationship with the deceased. Instead of a relationship of presence, we talk about a relationship of memories. However, there is still a forced, non-negotiable disconnection with our loved ones when we die, and oftentimes it's a disconnection that we do not ask for.

The holidays are upon us and this is a time of year when feelings of disconnection and loneliness may intensify. For me, I have felt an undercurrent of sadness amidst celebration during the months of November and December that I haven't always been able to pinpoint. Is it the colder, darker days? Financial strains of holiday shopping? Anxiety about upcoming family get-togethers? People missing their loved ones? I think it could easily be all of this and then some.

So, what does one do to successfully navigate the holidays while grieving? The simple answer (if there is one) is to try to maintain some sort of connection with your loved one, especially if this will be your first holiday season without them. A former colleague used to encourage her clients to focus on the legacy of their loved on, more so than on the loss. Perhaps a way to stay connected is to continue with one or two holiday traditions your loved one really enjoyed: preparing their favorite Thanksgiving dish, playing their favorite holiday music, or taking over a role they once performed like lighting the candles on the menorah. Though they may be painful, these small acts are a way to keep your loved one alive and present during the holidays.

Arbor Hospice is offering special holiday workshops to provide more tips on coping with the holidays. The final two workshops will take place this Sunday, November 17 from 2-3:30 p.m. If you live near Ann Arbor, consider attending the workshop at Malletts Creek Library (3090 E. Eisenhower Parkway). If you live in the downriver area, consider attending the workshop at our office at 21647 Allen Road in Woodhaven. You can find more information about these workshops on our website.

If you have experienced the death of a loved on, what are some ways you have found helpful in coping with the holidays?

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

Monday, November 11, 2013

End of Life Cancer and Massage
Michelle Chaves-Torres, Arbor Hospice Complementary
 Therapy Coordinator/Massage Therapist, gives an
Arbor Hospice patient a foot massage.
Massage therapy is very beneficial for cancer patients at the end of life. Many patients experience pain throughout their body when cancer has metastasized, and in addition to traditional medicine, massage provides pain relief by relaxing the body. When someone is in pain, it can be difficult to find a comfortable position. Massage offers relief and facilitates the capacity to relax into a more comfortable state.

Massage improves circulation. More often than not, patients at the end of life are not as mobile as they once were. Sometimes they are confined to a bed or chair. Massage helps to stimulate and encourage circulation, providing nutrients and oxygen throughout the body. It helps to prevent pressure wounds in those that are bedbound by keeping the systems and fluids of the body moving.

Massage also decreases swelling often present in the arms and legs due to an impaired circulatory system from radiation or chemotherapy. A certain type of massage, called Manual Lymphatic Drainage Massage, stimulates the circulatory system to move excess fluids out of the body.

On an emotional level, end of life cancer patients may be suffering from depression. Routine massage often alleviates some of the signs and symptoms of depression. Massage stimulates the release of a hormone called an endorphin, a "feel good hormone." Researchers believe that because a massage can promote relaxation and release endorphins, massage can enhance someone's mood.

Sleep deprivation is another common aliment for end of life cancer patients. Massage provides the environment for more restful sleep and/or assists patients into a relaxing deep sleep. I have had many patients tell me "I feel like a new person after receiving a massage," or "I wake up feeling so refreshed."

Patients at Arbor Hospice benefit from massage intervention to alleviate pain, improve circulation and elevate mood. On average, 12-18 patients receive massage treatments per week throughout Arbor Hospice's seven county service area. In a future blog post, I will provide simple steps on how to give a hand or foot massage. That way, you'll be able to give massage therapy to someone you love.

This blog entry was written by Michelle Chaves-Torres, Arbor Hospice Complementary Therapy Coordinator/Massage Therapist. You can contact her by commenting below or emailing her at 

Saturday, November 9, 2013

Hospice Patients Offer The Gift of Possibility and Hope

We had finished recording.

The Arbor Hospice patient had shared her life story in a conversation with her daughter, and the
video camera was turned off.

She moved to a nearby chair where she looked out a large window at the softly falling snow. Jean accepted a glass of wine, and I took a seat across from her.

She had mentioned during the videotaping that social justice was important to her, and we talked a bit about its origins in her life and how she continued to be engaged with these issues in this her 10th decade.

“It’s a wonderful world when people share love and care for one another,” she said.

Jean had mentioned that she wrote poetry, and I asked about it.

She offered to recite a recently-composed two-line poem:

“The long, dark corridor of life narrows at the end. And those whose ego grew too tall will have to learn to bend.”

I share this story with you to remind us that we can be meaningfully engaged with life until its very end, a gift of possibility and hope that hospice patients offer us which enriches the quality of our own days, however many they may be.

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You can contact Dennis by commenting below or emailing him at

Wednesday, November 6, 2013

Oh, The Web I Weave

I feel more like a spider than a sandwich, I thought as I hung up from a futile phone call with my 90-year-old mother who has recently been diagnosed with early Alzheimer's. Her physician has instructed her to take her blood pressure every day to monitor her rising level, and once again she has forgotten to go downstairs to the nurse who is available five days a week in her independent living building.

I'm a Sandwich Generationer, someone with an aging parent who requires my assistance and teenage children at home who need my oversight. It's all good, but I need to build a support web to manage it all. My mom has doctors' appointments; I can schedule those on the weekend (check), a driver assessment, my sister-in-law can take her (check), the boys need to get their senior pictures taken (weekend, check), a doctor's appointment (leave work early, check), an appointment with mom's financial advisor (evening, check); the checklist goes on and on and the support web I weave is sturdy yet fragile.

My husband is my back-up, always ready to jump in and repair a broken thread. So far, somehow, it has all worked. Those of you who have figured this out or have ideas to help manage it all, please pass them along. In the meantime, this spider will keep spinning.

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

Monday, November 4, 2013

The Courage to Grieve

Let's face it: loss hurts. The death of a loved one, the end of a romantic relationship or friendship, financial hardship, changing jobs - these are all common losses we experience. Sometimes, it can seem like life is a series of losses. In our fast-paced, over scheduled culture, it's easier to keep going without pausing to mourn the cumulative losses we face in our lifetimes. Who wants to take time to feel sadness, anger, guilt or emptiness?

Our society has become very grief avoidant. For example, most employers give three days of bereavement leave following the death of a close relative. We are expected to take a few days off, grieve and then return to work renewed and ready to pick up where we left off. We are encouraged to stuff our grief down deep inside so that we can be productive at work and remain engaged with life. I often talk to bereaved clients who intentionally stop their tears from flowing, drag themselves out of their houses to work, to school or to the community center to become immersed in anything but how they are feeling. Or, the exhaust themselves with exercise in order to be able to collapse into bed at night and avoid thinking about their loss.

It takes courage to open up to grief, to intentionally slow down and sit with its ugliness. And grief isn't just ugly. It's messy. It's unpredictable. It doesn't have neat stages, contrary to popular wisdom. Grief can be raw, unadulterated pain if it's allowed to express itself. And human beings don't like to feel pain, especially when the pain is holistic and affects our thoughts, feelings, behavior and spirit.

Experiencing the pain that comes as a natural reaction to loss is what we must do in order to move through the process and eventually heal. Moving through the pain is made easier with good social support, coping skills and self care. I would argue that even with those in place, something more is needed, and that's courage. The courage to know that perhaps it will be worse before it's better. Or that no matter how many people are willing to help and be supportive, the grief process is a path that ultimately must be walked alone. The courage to believe that you will be okay. The courage to keep reaching for life during the darkest days.

In the coming months, we will be sharing stories, experiences and hopefully inspiration for those trying to courageously live with loss. We encourage you to join our discussion by posting your own comments and sharing what you have encountered as you journey through grief.

This blog entry was written by Becca White, Arbor Hospice Grief Support Coordinator. You can contact her by commenting below or emailing her at

This blog post was inspired by the writings of Judy Tatelbaum, grief expert and author of The Courage to Grieve and You Don't Have to Suffer. Visit her website or her page.

Friday, November 1, 2013

Why I'm a Hospice Volunteer

"The best way to find yourself is to lose yourself in the service of others." -Mahatma Gandhi

When I tell people that I'm a hospice volunteer, the most common response is, "I admire what you do, but I could never do it."

So, I'd like to take this opportunity to explain why I'm a hospice volunteer:

  • I have always admired those who do hospice work. Nurses, doctors, social workers and spiritual care coordinators. In my view, they are as close to angels as I am likely to encounter in this earthly realm.
  • I felt drawn to hospice work because I saw it was a way I could apply understandings and skills I had spent a life-time developing - to listen deeply and to trust people to find their own best way, a belief that people can learn important things until the very end of life.
  • I thought it was likely that hospice patients and their families would teach me important lessons that could support me in navigating that passage when my time came to do so.
Five years ago when I first considered becoming a volunteer, I talked with a long-time Canadian professional colleague who has volunteered for many years at a southwestern Ontario hospice.

"As a volunteer, I provide a safe place for clients to share their emotions, which they sometimes were unable to do with their own families who are struggling with the imminent loss of a loved one," she told me. "I learned to focus less on the illness and more on the things I could bring to their lives."

She also described personal benefits. Hospice volunteering, she said, "helped me realize what's important and to prioritize my life on a daily basis. And I've been able to use what I've learned to support friends and family who are not part of hospice when they have gone through illnesses and losses in their own lives."

My responsibilities at Arbor Hospice include:
  • Helping patients of all ages and their families preserve family stories and other important memories on video.
  • Co-leading bereavement groups for individuals who have experienced the loss of a loved one.
Through these experiences, I have had the privilege of learning a great deal about end-of-life issues, lessons I will share with you in coming weeks about facing the prospect of death and about grieving those we have lost.

This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You can contact Dennis by commenting below or emailing him at

Thursday, October 31, 2013

Welcome to Arbor Hospice's Online Community!

As hospice clinicians and volunteers, it's amazing how often we hear phrases that begin with "I wish." I wish I heard about hospice sooner. I wish I would have asked my mom what kind of care she wanted at the end of life. I wish there was something I could do to support my family and friends as they experience the grieving process.

We have the privilege of being invited into the homes of thousands of patients and families each year. We hear their questions, concerns and experiences. We know that facing a life-limiting illness or enduring grief can be challenging. This is why we have created this blog to engage you, our community.

We want to provide support for families, friends and caregivers now and in the future. We want to show you that there is something you can do, and that you are not alone. We want others to learn about hospice services earlier and initiate important end of life conversations now, before it is too late. And most importantly, we want you to share your experiences and seek advice from others who have experienced the same thing.

The Arbor Hospice Blog is a collaboration of Arbor Hospice employees and volunteers interested in sharing their knowledge, expertise and personal experiences. Our goal is to educate and engage the community on hospice, palliative care, grief, caregiving, death and dying. We hope to build a community of individuals who are engaged in our blog.

We invite you to post questions, seek advice, comment and share your experiences. Please subscribe to our blog, share your thoughts, questions and concerns and invite your friends and family. We can all learn from each other. We envision this to be a safe, respectful place where we can provide dignity, comfort and peace while nurturing and educating the community about hospice care. We hope you will help us make this vision a reality.

Welcome to Arbor Hospice's online community!

This blog entry was written by Gloria D. Brooks, Arbor Hospice President and CEO. You can contact her by commenting below or emailing her at