Thursday, August 28, 2014

Considerations at the End of Life

Following a death, there are many things that must be done by family members or representatives of the deceased. These can be difficult times for everyone involved, and many issues may be more easily dealt with before the end of life. These issues may include decisions about:

  • Funeral home
  • Cemetery or funeral service
  • Monument
  • Casket or urn selection
  • Vault selection
  • Clothing for viewing of the deceased
  • Information for the obituary
  • Music, prayers and/or speakers for the memorial or funeral service
By contacting a funeral home in advance, useful information and assistance may be obtained. In addition, pre-planning and signing necessary papers prior to death may qualify families lower rates for services provided by the funeral home.

After your loved one passes, phone calls to various agencies, organizations and personal services may also be necessary. Some agencies may need to know the date of the death. In most cases, the funeral home will provide you with needed documentation, such as a death certificate, for these agencies.

Calls that may need to be made following the death of your loved one include:
  • Your faith system, such as a minister, rabbi, spiritual advisor
  • Insurance agent, such as life, health, disability
  • Unions and fraternal organizations
  • Attorney
  • Accountant
  • Executor of the estate
  • Government offices, including Social Security and Internal Revenue Service
  • Pension plans
  • Veterans Administration
  • Bank, investment companies, mortgage companies
  • Title on all real estate property may have to be changed. If applicable, application for widowed person exemption as well as homestead and disability exemptions may be completed.
One of the many roles of the Arbor Hospice Care Team is to help patients and families with these tasks. If you have questions, feel free to contact your team.

Tuesday, August 19, 2014

Lessons Through Grief

A few years back, I was invited to share my personal experiences with grief at an annual Arbor Hospice Memorial Event. Here's what I had to say in the hope that it may be helpful to you in times of sorrow.

We have gathered together today to remember and honor those who are no longer physically with us, our parents, grandparents, partners and friends, spouses and children and others whom we loved.

We are here, too, because love and loss are inextricably intertwined. Our presence is a recognition that grief is the dues we pay for the love that has enriched our lives. We are also here this evening because we understand the value of a community that can support us through difficult times.

No one ever knows how much others hurt or in what ways. So I do not presume to know your grief. That's why I am speaking with you this evening not as an expert, but as one who has lost and grieved and has come to understand the power of human resilience in the face of profound loss.

My first significant losses were the deaths of my parents at too early an age, deaths that for me changed everything that followed. My mother died suddenly in her 60s of a heart attack. A few years later, my father died slowly from a progressive, debilitating disease. Having experienced both, neither way of dying recommends itself to me.

Like you, I put one foot in front of another to do whatever was next in fulfilling my daily responsibilities, although I wasn't always sure that I had the capacity to do so. Over time, I got better. My grief became less raw and consuming.

Since then, there have been other significant losses, each of which has deepened my understanding of the unique and unanticipated ways in which grief can present itself.

While grieving is a complex and unpredictable process, I'd like to share with you what I've learned through my own grief journey in the hope that some part of it may be of value to you.

The first thing I learned is that we are not crazy, even though we may feel that way at times. Most of our reactions are quite normal.

After my mother's death, I had trouble remembering things, and more than once I drove considerable distance with no memory of any details of the drive.

I had once read about monks in a religious order in New York State who believed that we experience heaven and hell in this lifetime through our emotional states, and I couldn't imagine a worse way to spend eternity than with the pain I felt about the loss of my mother.

Some of us can't sleep, or we lose our appetites. We may be seized by overpowering emotions at unexpected times. We have mood swings, we are unable to concentrate, and we may feel angry, guilty or fearful for the future.

Our relationships often change. After my mother's death, my father and I regularly talked on the phone, a task he had automatically handed off to my mother when she was alive. As we talked more, we became much closer, and some of my most cherished memories of my father were during this period.

The second thing I learned is that death of a loved one often raises issues related to the meaning of life and of our own mortality.

Questions regarding life's purpose arise. Our faith may be challenged. We ask "Why?" and our suffering may be increased if we don't receive a satisfying answer.

We may use metaphors to help us understand what otherwise seems incomprehensible. I've heard people say that grief is a journey, a wound, a mystery, a dark forest, a large lake, a voyage on turbulent sea and an exclusive club with a steep membership fee.

When my father died five years after my mother, I thought of myself as an orphan, although being in my 40s, I hardly fit the conventional meaning of that term. As the oldest child, I was acknowledging that in the natural order of things, my turn was next, an awareness that didn't always sit easily with me.

To make sense of things, I wrote about what I was thinking and feeling. Although my concentration was poor for several months, I was eventually able to listen to music and to read poetry and books that had spiritual messages.

My third lesson was that things do get better, but they do so in their own way and time. One of the few certainties in life is that things change, as you well know.

I've heard Arbor Hospice grief support staff say that while the wound doesn't disappear, its rough edges are smoothed by time. The frequency, duration and intensity of our sorrow diminishes.

Our sleep and appetite slowly return. We take better care of ourselves. We set new goals and resolve to find happiness wherever we can. We may begin to feel moments of joy as happy memories emerge. How long this takes varies from person to person as we each grieve in our own unique ways.

We gather strength as we experience and move past "the firsts" - the first birthdays and anniversaries, the first holidays and so on. The long-dreaded first Christmas after my mother's death passed with far less sadness than I anticipated, partly because of the degree of cooperation among the members of my family, an occurrence that undoubtedly would have brought a smile to my mother's face.

I knew things were getting better for me when I would suddenly be aware that several days had passed without sadness. Tears no longer came to my eyes when I thought of my parents, and happy memories slowly emerged.

During this time, I learned that rituals of remembrance like this one can sooth us and that grief is easier to bear together than alone, at least for most of us. We are here this evening because there is hope and strength in family and community.

I also learned that following an ending there is a new beginning, although not necessarily the one we would have chosen for ourselves had we been given a choice. But between the ending and beginning there may be a desert of sorts. With time and the support of others, we find our way to a new reality, a new normal.

A final lesson was that we do not forget those who have gone on before us. Many of us fear that we will gradually lose the precious memories we hold of our loved ones. We may be afraid that as our grief diminishes, our loved ones may slowly slip away from us in our memories, a prospect that seems unbearable. With time, though, joyful and sustaining memories arise that offer strength and guidance.

I believe that our loved ones live on through us. My parents and ancestors and others I loved remain alive in me. Like stones thrown in a pond, their thoughts and words and deeds ripple into the future, influencing us and countless others, including generations not yet born, in ways that are sometimes quite profound.

Years ago a friend told me that he was about to travel to Florida to visit a dying friend of his who he thought he was unlikely to see again, and he wondered what he might say to him. I told him that I had recently read a story about a man who had sought a highly-regarded spiritual teacher to find an answer to a similar question. The teacher told the man, "Tell him that when he dies, a part of you will die and go with him and that he will never be alone."

Today, I might offer another perspective to my friend: "Tell him when he dies, a part of him will stay with you and be a part of who you are for as long as you live and even beyond in the lives of others."

Sometimes people ask me why I am a hospice volunteer. I respond that I do it because it's a privilege to be with individuals and their families at such a sacred time, a time when life is reduced to its essentials.

In that spirit, I thank you for the privilege of being here with you today. And I thank you for being here for yourselves and for each other.

What has your grief taught you?

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

Wednesday, August 13, 2014

Grieving National Loss

If you are a parent today, you are well-versed in all things Dora. I learned this over the weekend at my niece’s daughter’s three-year old birthday party. For my husband and me with our son, who will soon celebrate his twenty-fourth birthday, it was Aladdin. We still will watch it on occasion and it makes us laugh as much is it did originally, and I still sing along about a whole new world.

That is one of the aspects that make news about the untimely death of comedic genius Robin Williams so unsettling. I have commented on this before but it bears repeating in this situation. In a "traditional" hospice setting, we are typically serving families with loved ones who are diagnosed with cancer or another terminal illness that has had a long, slower onset. Our "typical" patient is age 75 or older. This makes us baby boomers pretty comfortable – we are serving our parents, not our own generation. And while the amount of time patients and families access hospice is short – it is available for six months, but often families only access services for up to 14 days due to a variety of barriers – it is generally anticipated that there is going to be a death in the family.

This death in our national family was certainly not anticipated, at least not by those outside Robin’s immediate family. As a social worker by discipline, I am compelled to mention the serious illness that is depression, how silent its symptoms can be, how manic swings can be masking other serious issues, and how self-medicating behaviors create other challenges for the person and their family. Robin was such an accomplished actor and comedian in his field – many people will wonder with all of his success – awards, money and fame – what would drive him to take his own life? That is the inconsolable depths of despair that is depression left untreated, and why we need to address it as much as we address any other serious, chronic illness.

Grief support during any loss is important, and it is especially so during a sudden loss such as a suicide. I continue to be drawn to the news reports to witness others recollections of Robin’s impact on their lives, and remember how he impacted mine and my family’s – and I keep remembering other films he was in that I enjoyed. As we know too well, that’s part of the grief journey. I urge others to access support services, grief support services, or health care services depending on our need to ensure our well-being. We cannot help others when we don’t take care of ourselves.

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

Relieving Concerns About Pain Medications

Many people have concerns and fears about taking morphine and other opioids. This is often because of misconceptions or a lack of information.

Virtually every authoritative body - from the World Health Organization to the United States Department of Health and Human Services Agency for Health Care Policy and Research - agrees that medications like morphine are best for treating moderate to severe pain.

In individuals with serious illness, opioids are the most commonly used medications in the management of moderate to severe pain because of their effectiveness, ease of dosing and very minimal risk of severe side effects compared to how beneficial they are.

Morphine and other medications like morphine are very safe when used correctly. Arbor Hospice patients are able to utilize these medications safely for many reasons.

  • All Arbor Hospice staff receive extensive training in how these medications work in the body to relieve pain, how to give safe doses of the medication and which patients would benefit from taking these medications.
  • The hospice pharmacy has licensed pharmacists who double-check all medications ordered. Working with the Arbor Hospice Medical Directors, hospice care team and the patient's attending physician, the pharmacists collaborate to ensure that each patient receives safe, effective medication therapy based on their individual need.
  • After patients have been on medications like morphine for awhile, their bodies adjust and higher doses may be needed to provide relief. This can be done safely without causing long-term side effects. Just as people often need changes in blood pressure medicine over time, people often need changes in their pain medication.
  • Unlike other pain relievers such as Acetaminophen (Tylenol) and Ibuprofen (Motrin, Advil), there is no limit to an opioid dose and therefore dosages can safely continue to increase throughout the disease progression.
  • Since the body can become tolerant to the effects of opioids, the right dose of morphine is that which controls pain. This dose can easily be given without causing unmanageable or dangerous side effects.
  • Side effects with any medication are possible. Fortunately, those associated with pain medications go away quickly and can be prevented or treated.
  • Addition very rarely, if ever, occurs in patients who take medications for pain. Research has shown that less than one percent of all patients who take medications like morphine for pain develop any signs of addiction.
  • Arbor Hospice staff follow dosing standards suggested by the World Health Organization, the Agency for Health Care Policy and Research and the American and International Pain Societies. These dosing standards have been proven safe in numerous studies.

Tuesday, August 5, 2014

Anxiety At The End of Life

Feelings of nervousness, also known as anxiety, are normal responses when things feel uncertain or beyond your control. Because of the many physical and emotional changes associated with illness, feelings of nervousness may occur. Although anxiety is a natural response, being nervous is uncomfortable and can affect the quality of your life.

Causes of Anxiety
Over the course of an illness, there are things that can cause feelings of anxiety or nervousness. It is helpful to identify what may be causing you to feel anxious. Identifying the cause of your nervousness will be helpful in determining what to do about it. However, it is possible to feel anxious without being able to say why. Some of the things that may cause feelings of anxiety include:
  • Fear of the unknown
  • Changes in how the disease is advancing
  • Fear about relieving symptoms such as constipation, pain or shortness of breath
  • Concerns about medications
  • Fear about giving or receiving care
  • Fear about not being able to care for yourself 
  • Fear of physical or emotional loss
  • Responding to changes in your life
  • Concerns about your family or loved ones
  • Concerns about moving to a nursing home or assisted living facility
  • Unexpected news, favorable or unfavorable
  • Fear related to making decisions about the future
  • Concerns about making the right decisions
  • Questions or concerns about spiritual or religious issues
  • Financial concerns
  • Changes in your role within the family or the community
Signs and Symptoms of Anxiety
Each person responds differently to situations which cause feelings of anxiety. Your body has many different ways of showing anxiety. Knowing that you may be nervous is the first step to feeling better. Some of the more common symptoms of anxiety include:
  • Restlessness or not being able to relax
  • Irritability
  • Stomach upset or nausea
  • Butterflies in the stomach and/or feeling as though there is a lump in your throat
  • Muscle tension, aches, soreness or just feeling tense
  • Feeling very tired or exhausted
  • Trouble falling or staying asleep or having nightmares
  • Getting upset about things which normally would not upset you
  • Worrying about what could or may happen
  • Trouble concentrating or feeling overwhelmed
  • Headaches
  • Eating more or eating less than usual 
What You Can Do
While feelings of anxiety are normal, it is important to decrease the effect these feelings may have on you or the people you care for. The symptoms of anxiety are your body's way of letting you know it needs to relax. It your body is relaxed, it helps you cope with what is happening in your life. Talking to someone you trust is usually a good place to start. Other suggestions to reduce anxiety may include: 
  • Talk about your feelings, fears and concerns with someone who will listen and provide support, including family members, friends, clergy and/or your Arbor Hospice team
  • Take slow, deep breaths
  • Enjoy a relaxing activity such as a hot bath, a good book
  • Take a short walk or find a place that you can relax, uninterrupted for awhile
  • Seek spiritual support from your clergy and/or the Arbor Hospice spiritual care coordinator
  • Allow yourself to cry
  • Keep a journal and write about your fears, feelings, concerns and/or things that are happening in your life
  • Listen to soothing music