Friday, February 28, 2014

Teens and Grief

What impact can the death of a loved one have on an adolescent?

Adolescence is an exciting, yet anxiety-provoking time for both teenagers and their families. The death of a loved one can throw a wrench into typical developmental tasks such as identity formation, separation from parents, and exploring one's career options. A loss can:

  • Alter one's identity: A teen may wonder, "Am I still a brother? Can I continue to be an athlete? Can I trust the world, the community or my family?"
  • Lead to exaggerated or hidden emotions: A death can impact the expression of emotion during an already highly emotional time. Feelings about the death may be exaggerated, stuffed out of awareness or a mixture of the two. A teen may hide their true feelings from parents and be more expressive with peers.
  • Create a "big man/big woman" syndrome: This is commonly manifested as a teen takes on adult responsibilities, feels that he/she is now the leader of the family or denies the emotional toll of the loss.
  • Produce risky behaviors
  • Lead to helplessness and feeling overwhelmed
  • Influence proximity to home: some teens may stick closer to home and others may desire to be away.
  • Drive an adolescent to spend more time with peers
A loss experienced in childhood or adolescence can lead to:
  • Impaired relationships with others
  • Stunted emotional development
  • Inability to cope in a healthy way with future losses
  • Decreased academic performance
  • Juvenile delinquency
  • Gang involvement
  • Substance abuse
  • Suicide
So how can caring adults help grieving teens?

A basic understanding of the grief process is helpful.
  • Grief is holistic; it's any reaction to a loss: emotional, behavioral, social and cognitive.
  • Grief is a process, not an event.
  • There is no right or wrong way to grieve.
Be genuinely interested in the grieving teen.
  • Offer a listening ear or to help in some way.
  • Be open with your body language, your mind (teens are easy to judge), and your heart. Perhaps the teen will want to discuss their loss with you or something completely different.
  • Know that you are helping no matter the topic, as showing that you genuinely care about their pain will in most cases encourage communication.
Finally, if you sense any thoughts or behaviors that can lead to the teen harming themselves or others, take action.

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

Wednesday, February 26, 2014

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

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

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

Rev. Diane Smith speaks with a patient's family member.
I asked Reverend Diane Smith, Lead Spiritual Care Coordinator for Arbor Hospice and Spiritual Care Coordinator for The Residence of Arbor Hospice, to talk with me about her work.

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

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

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

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

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

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

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

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

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

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

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

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

Monday, February 24, 2014

It's The Little Things

I have the privilege of interviewing patients and families willing to share their stories. I am continuously blown away by the stories patients and families share - things you don't find in a patient's chart or hear from the Arbor Hospice clinical team.

It's not the big things that stand out. It's the small things that make a world of difference.

They talk about how nice it is to be treated with compassion and with dignity. They compare a sterile hospital room to the home-like decor in The Residence of Arbor Hospice or to their own home.

More often than not, families express gratitude for the little things Arbor Hospice clinicians do - not always about pain and symptom management.

I've heard a husband express how grateful he was that his wife's chin stubble was trimmed like his wife trimmed it herself before she became too weak.

A mother recognizes the Arbor Hospice nurse for taking time to understand her non-communicative daughter's expressions and movements.

A son raves about how staff at The Residence of Arbor Hospice gave his father's favorite food - ice cream, in his final few weeks.

A wife talks about the comfort of knowing she can call at any time - day or night - and receive support.

It's these small things that make an impact on patients and families at the end of life - things we don't often think about.

I think this is true in all aspects of life - not just at the end of life.

I've recently created a "Gratitude List." Each night, I add things from the day that I am grateful for. While my list includes large things - my family, friends, health and safety - there are a lot of small things too. A smile, simple call, email or text just to say hello, note or someone saying "thank you" makes my list.

Knowing how much I value these things, I try to return the favor each day. I challenge you to go out of your way to do something extra - it doesn't have to be big. It's the simple things that matter.

Think about it - what has someone done for you that made such a big impact?

This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialists. You may contact her by commenting below or emailing her at


Thursday, February 20, 2014

The Pain of Deception....

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

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

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

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

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

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

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

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

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

Tuesday, February 18, 2014

Advice For Individuals With Lung Diseases In Winter Weather

Winter continues to pummel Michigan with extreme temperatures and record-breaking levels of snow. While this weather may give reason to gripe, it poses an extra challenge for those living with respiratory ailments, such as congestive obstructive pulmonary disorder (COPD). Arbor Hospice and Arbor Palliative Care recognize these challenges and makes several suggestions to patients and caregivers.

"Changes in weather can trigger COPD symptoms to suddenly worsen or flare-up," said Adam Marks, MD, Arbor Palliative Care Medical Director. "Cold weather may cause a person's airway to tighten, restricting airflow. This can be especially dangerous for individuals with respiratory ailments. These temperatures may cause people with COPD to feel exhausted, short of breath, cough more frequently or produce more phlegm. But there are ways for individuals to reduce the risk of a flare-up."

Arbor Palliative Care offers the following tips for individuals living with COPD during the winter months:

  1. Minimize the cold as much as possible by avoiding the outdoors. When you go outside, remember to dress accordingly. Cover your nose and mouth with a scarf or mask. Individuals with COPD are more susceptible to complications such as pneumonia.
  2. Preparation is important. Before temperatures drop and the snow begins to fall, make sure you are prepared. Buy extra groceries so you will not have to brave the elements. Get a flu shot to prevent unnecessary illness.
  3. Avoid smoke exposure. Cigarette smoke, in of itself, is an irritant to individuals with lung diseases. When paired with cold air, COPD symptoms are much more common. Similar to cigarette smoke, smoke and particles from wood-burning stoves and fireplaces can irritate airways. Try using an energy-efficient electric heather to stay warm.
  4. Make sure furnace filters are clean so the air in your home is not hurting your breathing. It is also a good idea to have your furnace and ductwork cleaned to eliminate dust and remove airborne contaminants.
  5. Make sure your doors, windows and fireplace are properly sealed to eliminate drafts.
  6. Maintain a normal humidity level inside your home. The air humidity should ideally be at 40 percent and can be maintained with a humidifier.
  7. If you go outside, place oxygen tubing (if you use it) inside your clothing to keep the air as warm as possible.
People living with serious illness, such as COPD, who experience ongoing pain or other distressing symptoms may be eligible for palliative care. Palliative care is specialized medical care that focuses on relief of symptoms, including shortness of breath, cough and exhaustion. Palliative care works alongside other medical care to prevent and alleviate symptoms in order to improve quality of life. It is appropriate at any age and any stage of an illness.

This blog post was featured as an article in local newspapers and online editions.

Friday, February 14, 2014

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

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

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

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

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

I have learned that:
  • Each person's grief is unique. While there are commonalities that link grieving people, we grieve and cope with loss in different ways.
  • That means that it is impossible to provide a precise timetable for grief or to predict with certainty what grieving individuals will experience, sometimes even in the next day or hour.
  • The only one who can truly understand the meaning of a loss is the grieving person.
With the best of intentions and desire to comfort, people will sometimes say to a grieving person, "I understand what you are going through because I lost my (fill in the blank) last year." Grieving people are quick to point out - at least in the safety of grief support groups - that no one really knows what they are experiencing.

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

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

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

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

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

Wednesday, February 12, 2014

Tips for the Sandwich Generation

The Sandwich Generation is an increasing number of people experiencing the emotional and physical struggle of caring for an aging parent while still raising children.

According to the National Alliance for Caregiving and MetLife, workers who care for elderly relatives cost U.S. businesses over $34 billion annually in absenteeism. In addition, there are more than 25.5 million Americans who try to balance work, raising a young child and caring for an adult over the age of 50 at the same time.

These simple tips can help caregivers balance life and avoid burnout:

  • Put your health first. Caring for an aging loved one can cause stress and anxiety. As much as you would like to put everything on hold, your loved one cannot be take care of if you are not well.
  • Recognize the signs of caregiver burnout. Look for a change in appetite, irregular sleeping patterns or withdrawal from family and friends. Take steps to protect your own health. Don't be afraid to ask for help and learn coping techniques such as journaling or taking a relaxing walk.
  • Educate yourself on your loved one's illness. Talk to your loved one's doctor and ask for online resources and brochures. The more educated you are, the better care you will be able to provide for your loved one.
  • Seek support. Many nonprofit organizations offer support groups to help you get through this difficult time. You should remember that you don't have to go through this alone and that there are other people who may be in a situation similar to yours. Support groups can offer an outlet to vent frustrations and find alternative ways of dealing with stress.
  • Make communication a priority. Hold regular family meetings to keep everyone informed on your loved one's condition. It's also a good idea to maintain open communication with your loved one. Start talking about the future now and make important decisions with your loved one about a living will and advanced directives.
  • Learn your company's caregiving policies. Talk to your supervisor about your situation as many employers are sympathetic. Ask if your company offers basic elder care benefits and inquire about the Family Medical Leave Act. Eligible employees are granted up to 12 months to take care of an immediate family member with a serious condition. Discuss alternative arrangement such as working from home or different hours of work.
This blog entry was written by Jaclyn Klein, Arbor Hospice Communications Specialist. You may contact her by commenting below or emailing

Monday, February 10, 2014

Learning To Touch

In an earlier post, I introduced you to my hospice experience with my Mom and promised I'd let you in on some of the lessons I learned. Here's the first lesson:

I was not born into a touchy-feely family. As a child, I remember being rather jealous of my friends who were. Fast forward a few decades and I'm more than happy to give or receive a hug or hold a hand. Believing touch is a pleasant and essential human need, it stands to reason that I faced a bit of a dilemma as my Mom approached the end of her life. Could I, dare I practice the art of touch with her? How would I feel if she resisted? Could I swallow my own pride andlearn to touch her with care, compassion and love in whatever time we had left? Why yes, yes, I could! You see, one of the lessons I learned is that death has a profound way of giving us gifts we may not have accepted in life.
A hairbrush on a bedside table called my name and I began to slowly brush Mom's silvery silken hair. Unfocused eyes struggled to meet mine as she leaned into the gentle strokes. I was mesmerized and I was forever changed. My gift had been accepted and I took the breath I didn't realize I had been holding, grateful beyond words. For the last two weeks of Mom's life, I held or stroked her hands, placed cool rags on her forehead and brushed her hair with her own antique brush set brought from home. My touch was never rebuffed, always welcomed, and oh-so-healing for both of us.

Years later, my brother told me he wished he could hold Dad's hands as Dad neared the end of his life, but was too afraid. The gist of my little-sister-rant was "do it!" My brother was met with a similar result; his gift of touch was accepted and became a gift back to him.

What unexpected gifts have you found in your loved one's final weeks, days or hours?

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, February 6, 2014

Breaking Down the Wall

I approached an Arbor Hospice patient residing in a nursing home cheerfully and asked if she'd like to pet Alpine, Arbor Hospice's therapy dog. She stared straight ahead, lips tightly pursed, stone-faced. No response. I asked again. She turned her dagger-filled eyes and looked into my eyes as she shot these words at me, "I am dying! And you want me to care about THIS?"

Alpine and I are impervious to occasional rejection. Some people don't like dogs, some are afraid and others are simply not in the mood for us that day. But we have never had someone angrily lash out at us.

I was shocked and shaken on the inside. I calmly said, "Okay, we'll go." I turned and walked away - but I only took a few steps.

With no conscious plan, I turned around and went to her side, incapable of walking away with those words hanging in the air. I placed Alpine behind the chair, out of the woman's sight. I don't remember what I said as I put my arm around her shoulders. I do remember that I said something I hoped would break through the wall of anger behind which she appeared to be painfully isolated and alone.

She began, "I can't go anywhere or do anything!"

We sat in silence, partly because I didn't know what to say, partly because I knew full well nothing I said would free her from that truth.

Eventually, I said, "You sound like you're feeling very angry about that."

"Yes, some," she said, the energy drained from her voice.

"And sad?" I asked.

"Yes." She looked up from her wheelchair.

"I'd probably feel angry and sad too," I said.

I put both arms around her and held her. She said, "thank you, love." This shocked me as much as when she lashed out earlier. She repeated those words two more times, "thank you, love." I told her, "I heard your pain and could not walk away from you."

When it was time to leave, I said, "You're a sweet lady." She looked at me and her face softened. I jokingly said, "You really ought to let more people know that!" She smiled the most mischievous grin, as though that was our little secret.

It was the first time I walked away from a patient and the tears flowed.

That's the hospice concept of care - providing comfort and peace for the whole person, physically, spiritually and emotionally.

This blog entry was written by Helen Buccella-Costa, Arbor Hospice Volunteer. You may contact Helen by commenting below or emailing her at

Tuesday, February 4, 2014

I Existed. I Mattered. I Left A Mark.

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

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

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

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

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

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

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

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

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

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