Wednesday, April 30, 2014

The Death Of A Spouse At A Young Age

When we get married, many of us expect to live into old age with our spouses. The death of a spouse early in their life leads to a unique bereavement experience for the survivor. When a spouse dies in their 30s, 40s or 50s, they leave behind someone who is much younger than our typical widowed population. Many are parents of very young or school-aged children. The surviving spouse is tasked with newfound singledom and the reality that the hopes and dreams of growing old with their partner will no longer be fulfilled.

This new role as a single young person can lead to protest from the survivor, a very understandable reaction after being robbed of one's partner in life and co-parent. This experience can feel unfair; it was not one's choice to be single and deal with the responsibilities that two once shared. The experience can be isolating; many grief groups for widow and widowers are geared to an older population who is in an entirely different life stage. The loss of a young spouse is overwhelming; young bereaved spouses have work and child-rearing opportunities that often leave little time to grieve. Finally, even in the face of extreme loneliness, many survivors find it difficult to even think about dating again, much less find the time to do so.

Fortunately, there are resources available if you or someone you care about is struggling with this type of loss. This list is by no means exhaustive, but it may be a good place to begin.

Support Groups:
  • Arbor Hospice offers Loss of Spouse groups frequently throughout the year. These groups are open to people of all ages, and many include both young and older bereaved spouses.
  • Circle of Hope group for young widows and widowers at New Hope Center for Grief Support in Northville, MI.
  • If you have kids, Ele's Place offers grief groups for children ages 3-18 in Ann Arbor, Grand Rapids and Lansing, MI. A parent group meets concurrently and offers the opportunity to discuss the experience of losing one's spouse and parenting grieving children.
  • I'm Grieving As Fast As I Can by Linda Feinberg: A guide for young widows and widowers through the normal grieving process that highlights the special circumstances of an untimely death. Young widows and widowers share thoughts and dilemmas about losing a loved one, what to tell young children experiencing a parent's death, returning to work and dealing with in-laws.
  • Getting to the Other Side of Grief by Susan Zonnebelt-Smeenge & Robert De Vries: Both authors had spouses die at young ages; she is a psychologist and he is a pastor, and they each discuss various topics from their respective perspective, specifically written for both widows and widowers.
  • How To Go On Living When Someone You Love Dies by Therese Rando: From the publisher: "Mourning the death of a loved one is a process all of us will go through at one time or another. But whether the death is sudden or anticipated, few of us are prepared for it or for the grief it brings. There is no right or wrong way to grieve; each person's response to loss will be different. Now, in this compassionate, comprehensive guide, Therese A. Rando, Ph.D., bereavement specialist and author of Loss and Anticipatory Grief, leads you gently through the painful but necessary process of grieving and helps you find the best way for yourself.
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, April 28, 2014

The Three Ways In Which People Die

I heard someone say that there are three ways in which people die:

The first is the cessation of life in the body, which is how most of us think of death.

The second is when our body is consigned to the earth or to fire.

The third is the last time our name is spoken.

The first type of death we do not choose, although we may be able to affect our longevity through life-style choices and the quality of our ending through palliative and hospice care.

Our choices regarding the second way we die, at least for most of us in the Western world, is burial or cremation.

But the third way we die - the ways in which we are remembered and the duration of that memory - is truly in the plane of the non-inevitable in which the human spirit thrives.

We can affect the ways in which we and loved ones are remembered by:

1. Considering the legacy we wish to leave. In a previous post, I suggest that 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.
2. Telling and eliciting stories about the lives of loved ones as a way of communicating family
    heritage and values. Photos, letters and other memorabilia can be used to stimulate such

3. Preserving stories in audio and/or video recordings. It is never too late to begin. As an Arbor
    Hospice volunteer, I have supported patients and their families in capturing such stories in the final
    days and weeks of life.

By what means do you or your family preserve important stories for the benefit of future generations and to keep alive the memories and names of those who have gone on before?

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

Thursday, April 24, 2014

The Many Benefits of Hospice

I hear so many stories of how hospice makes a positive difference in the lives of families throughout the year. As both Passover and Easter were celebrated in the past week, I want to focus on the gift of support that hospice services provide families.

Not too long ago, I was stopped in a restaurant by a wait staff when my name badge was noticed. She shared the story of how Arbor Hospice helped her grandmother experience her high school graduation wish come true. This personal experience brought a smile to my face and tears to both of our eyes. Our care team had accomplished what the grandmother had wanted - to live each day to the fullest and be alive to witness her grandduaghter's graduation.

Another community member shared her experience with Arbor Hospice in relating that there was so much support for her and her siblings in the week that their mother was receiving services. She said it was almost more important for her siblings and herself to receive the support to figure out how to go on without their mom, and to know that their mom was not in pain anymore. The value of the emotional and spiritual support provided by the hospice team, the planning for the future for the grandchildren and the grief support services during the year afterward, was amazing.

It strikes me that this is truly the value of hospice that sometimes doesn't receive recognition. Of course, there is the obvious value of pain and symptom management services to the patient, and the cessation of countless trips to the emergency room and hospital, which at some point, does not improve a person's quality of life and can actually be counterproductive.

The true value of hospice can be found in the wrap-around services for the entire family, preparing them for the loss of their beloved, and helping them during their grief journey. The earlier hospice can interact with the patient and family, the better prepared we can help the family face the loss. I hope this is a new lesson we can all learn during this season of hope and renewal.

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

Monday, April 21, 2014

Dementia and Massage Therapy

Many elderly individuals become sensory deprived as their faculties fade but the basic need for touch remains constant. As individuals lose sensory and cognitive skills, they become unable to interact socially, which may lead to feelings of isolation, depression, anxiety and agitation. Touch often remains the last form of communication when all other avenues have surrendered to the disease. When massage therapy is administered to patients in the end stages of dementia, it fosters feelings of intimacy and emotional connectedness.

Dementia is a slow progression of symptoms, sometimes lasting decades. At the onset, patients experience memory loss, confusion, language problems, changes in mood and difficulty performing daily tasks. This leads to an increase in anxiety and agitation, sometimes causing the patient to act out in ways considered socially unacceptable or improper. Sleep patterns become disrupted during the progression of dementia, and massage has been useful in treating insomnia. Additionally, many individuals suffer from a loss of appetite as Alzheimer's progresses, causing significant weight loss, resulting in physical frailty. A gentle hand massage given during light conversation has shown to improve appetite within an hour of the patient receiving it.

Massage can also stimulate the nervous system of Alzheimer's patients, helping to maintain nerve passageways that are in a state of decline due to the disease. A gentle massage provides relief and also aids drug therapies, possibly as a result of increased circulation. A neck and shoulder massage helps maintain upper body strength and muscle tone.

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

Tuesday, April 15, 2014

Addressing End-of-Life Concerns

A study published in the January 2014 edition of the American Journal of Preventative Medicine reported that nearly 68 percent of people have concerns about end-of-life care such as the cost, the pain they might experience or issues of comfort and dignity. Nearly half (48.7 percent) reported having discussed the types of medical treatment they wished to receive in the event of a serious illness, yet, only 26.3 percent of participants had completed an advance directive. Not surprisingly, the top two reasons for not having an advance directive were lack of awareness and the belief that their families already knew their wishes.

Part of Arbor Hospice's mission as a community-based not-for-profit hospice is to educate the community on end-of-life care and advance care planning. In response to the concerns highlighted in this study and the lack of awareness about advance directives, Arbor Hospice wishes to share some of the most common end-of-life and advance care planning realities.

Myth: It is common for someone to experience a great deal of pain at the end of life.
Reality: Pain and other symptoms are common in individuals with serious illness, but pain and symptoms can be controlled. Hospice and palliative care doctors and nurses are specially trained to control each person's pain and other distressing symptoms, while honoring the patient's wishes.

Myth: Good care at the end of life is very expensive.
Reality: When someone spends time in a hospital or makes numerous doctors' visits, care can be expensive. For individuals who are willing to forgo curative treatments, hospice may be appropriate. Hospice care is covered by Medicare, Medicaid and most private insurances, and The Arbor Hospice Foundation raises money to cover the cost of care for the uninsured.

Myth: It is common to die in a hospital.
Reality: It is natural, and normal, for someone to go to the hospital when they are sick or dying. When cure is no longer a reality, you have a choice about where you want to be. Hospice and palliative care is available in nursing homes, assisted living facilities, private homes, some hospitals and residential hospices. Wherever a person calls home, they can receive care.

Myth: Choosing hospice means that I am giving up.
Reality: When cure is no longer possible, hospice provides the type of care most people say they want at the end of life - comfort and quality of life. The main focus of hospice is quality of life, pain and symptom control, emotional and spiritual support of the patient and their family and affirmation of life - making the most of each day.

Myth: My family and doctors know what I want at the end of life.
Reality: If you haven't talked with your family or doctor about your end of life wishes, they may not know what you are thinking. Each person has their own end of life preferences and your wishes may be different from those of your family. It is important to tell your loved ones what you want and share that with all of your doctors.

Myth: It is expensive to create an advance directive.
Reality: Advance directives are written instructions regarding your medical care preferences. This is the document your family and doctors will consult if you are unable to make your own health care decisions. Having written instructions can help reduce confusion or disagreement, and makes your wishes legal.

Many tools have been developed to help people and their families understand end-of-life issues and to aid in initiating conversations with loved ones, including The Conversation Project and Prepare. Arbor Hospice is also available to answer questions about the end of life and provide Five Wishes, an advance directive. You can also download Five Wishes here.

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

Thursday, April 10, 2014

Social Workers Offer Advice to Caregivers

Social workers who specialize in healthcare are an important advocate for patients and families. They are instrumental in explaining health care resources and policies, assist in finding additional support and offer guidance for how to cope with various issues that may arise during an illness.

"We go to a patient's home with a plan for the visit, but often times that plan goes out the door when we walk in," said Zoe Burroughs, LMSW, Arbor Hospice Social Worker. "We never know what the family will need that day. Something may have just happened that makes the patient or caregiver upset. It is our job to meet the patient and family wherever they are and offer support on whatever they need. Sometimes it is education, other times it is validation and sometimes caregivers need extra help - they are burned out."

Arbor Hospice's Social Workers offer the following advice to caregivers:

  1. Keep track of your feelings. Advanced illness and the end of life can be frightening and overwhelming for both the patient and family. Many people find it helpful to keep a journal or record their emotions through art. This provides an outlet for your pain, grief or frustrations.
  2. Share your feelings with the people close to you. Remember that you are not alone. Millions of people care for a loved one and they have experienced similar feelings. Sharing your emotions does not make you a burden to someone else. You are entitled to every emotion you have. Do not be afraid to share them with the people you trust.
  3. Join a support group. Talking with someone who has had a similar experience can be very beneficial. Many disease-specific associations, such as the Alzheimer's Association, offer caregiver support groups. You many also find support groups through a local Area on Aging Association, Adult Well-Being Association or Veteran's Affairs. If you cannot leave your home for a support group because your loved one depends on you, consider joining a virtual support group. There are many websites where you can chat with others who are going through the same thing.
  4. If you are working and caring for a loved one, talk to your employer. Caregivers should let their managers know that they are caring for a loved one and discuss their needs related to caregiving. Make it known that you are committed to your job and want to find ways to remain productive. There may be options, such as different work hours or the ability to work from home.
  5. Know your rights. Consult human resources about what you are entitled to under the law. The Family Medical Leave Act (FMLA) requires large employers to provide up to 12 weeks of unpaid time off with job protection when workers must care for a sick or injured family member.
  6. Develop ritual caregiving techniques. Caregiving tasks, such as helping your loved one in and out of bed, should be ritualized. Establishing rituals that you or your loved one can follow will ensure the best possible care. It will also help your loved one know what to expect and how something is going to happen. Visit the resource section on the Arbor Hospice website for how-to caregiving videos and tip sheets.
  7. Create an atmosphere comfortable for your loved one. Often times, the person with a serious illness has a bed in the family's living room, or a room on the first floor near a bathroom. While this may be ideal for helping someone move about, it can be very distressing for your loved one. Keep in mind that your loved one may not sleep well if there is noise around him or her, if the television runs continuously or if someone is talking. Make sure your loved one is in a place where he or she can keep his or her dignity and have some quiet.
  8. Understand the difference between listening and talking. Take the time to really listen to your loved one. What does he or she want? If you are doing all the talking, you are not uncovering his or her real needs or desires.
  9. Organize help. Determine which of your loved one's needs you can or want to handle on your own, and which needs you could use help with. Ask family members, friends, neighbors, co-workers, professional caregivers or members of your church for help. Even if you find help from one or two people, they can make a difference. This will give you an opportunity to focus on yourself.
  10. Forgive yourself for any bad days and give yourself a fresh start the next day. Understand that you are not going to be able to do everything, or solve every problem. Remember everything you do right, and learn from your mistakes. Caregiving is hard. Any support you are giving is making a difference.
What other questions, concerns or challenges do you have about providing care?

This blog post was written by Jaclyn Klein, Arbor Hospice Communications Specialist with input from Zoe Burroughs, LMSW, Arbor Hospice Social Worker. You may contact Jaclyn or Zoe by commenting below or emailing

Monday, April 7, 2014

Choose Hospice Care To Improve Quality of Life And Perhaps Even Extend It

Dr. Ira Byock, an expert on palliative care and end-of-life issues, recounts his first hospice referral decades ago:

"I called up the hospice of St. Agnes, and it was the first time anybody from this medical center, the county hospital, had tried to make a referral. You know, hospice was a countercultural movement at the time, Krista. It was a social movement often by nurses and others, but very few doctors, in response to people dying badly, often dying in pain, often in hospitals, too often alone. It has grown up and now been incorporated back into sort of the corpus of medicine, but its roots have been as a countercultural response. And we've made a big difference, though we're by no means done."

Important progress has been made in recent years, as Byock notes, but his observation that "we're by no means done" is also significant.

In many ways, hospice continues to feel countercultural, at least to many doctors and their patients.

Far too many terminally ill patients and their families remain unaware of hospice services or come to those services too late to achieve their full value.

Referral to hospice, in the eyes of some doctors and patients, means giving up rather than improving the quality of life, and in some cases even extending it.

That means that some patients and their families endure needless suffering as futile and expensive health procedures are employed in the face of the inevitable.

As a hospice volunteer, I have talked with patients who told me that their doctors actively opposed hospice care even when the consensus of medical opinion was that they had at best months to live.

There are two reasons why it is important to begin hospice care early rather than in the final days or hours of life:

1. Hospice care enables a higher quality of life. Palliative medical care addresses pain and other symptoms. The hospice interdisciplinary team supports the patient and family in addressing the physical, emotional and spiritual aspects of the illness, the dying process and grieving.

2. In some cases, hospice may enable a longer life as well as a better one. A combination of palliative and interdisciplinary care can extend life as well as enrich it.

What benefits have you or loved ones experienced because of hospice care?

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

Thursday, April 3, 2014

Dear Caregivers - A Letter from Another Caregiver

Dear Caregivers,

Caregiving is a challenging yet deeply rewarding experience. Having cared for my mother for more than six years, I know how important your job can be. Caregviers play an essential role; one that sometimes does not receive the appreciation it deserves. Some caregivers work around the clock providing care to loved ones like I did with my mom. Others provide support for a set period of time each week, others from a long-distance. Regardless of your role, please know that you are so very important, and that you are not alone. There are millions of people providing care for a loved one and there are people who you can turn to for support.

As my mother's Alzheimer's Disease progressed, I experienced both trials and tribulations. I was blessed with a wonderful mother and I never regretted caring for her. Throughout her illness, my mother maintained her comedic personality. She made me laugh each day, and I consider it an honor to have cared for my mother, my best friend. When her illness presented an obstacle, I sought help from family, friends and the community. My family helped when I called on them for something. I prayed for peace and acceptance when my mom refused to eat. Neighbors, friends and our church community visited, offering their comfort. And, when my mom seemed to be nearing the end of life, I turned to Arbor Hospice. They provided me with additional support and ensured my mom's medications and supplies were delivered right to my door.

I know this is not what all caregivers experience. Sometimes, caregiving can be too much to handle. Other times, caregivers do not have a community of support like I did. I encourage you to let go of the things you cannot control. No matter how much you wish to make the disease go away, sometimes you cannot. Finding peace with that may be a short or long journey. It is important to remember that like you, your loved one cannot control his/her disease. I treated my mom like nothing was wrong; I talked to her the same way I did before Alzheimer's Disease. I remembered that it was the disease that affected my mom's memory. In her heart, she knew who I was.

Remember that you cannot neglect yourself. You have to share the love you are giving with yourself. It is much easier for your own needs to be buried in your "to do" list. You are taking on a large share of responsibility for not only yourself, but another person. If you wear yourself out, you will not be of any help to your loved one. Seek support from family, friends, neighbors and your community. And always remember that you need not be alone.

Rosemarie Gray

Rosemarie Gray is the daughter of one of the thousands of patients Arbor Hospice cares for each year. Thank you Rosemarie for sharing your story and advice to the millions of other caregivers throughout the country.

Tuesday, April 1, 2014

The Importance of Advance Care Planning

Do you know what healthcare treatments you would and would not want if you could not speak for yourself? Do other people know what your wishes are? Would you know what your loved one would want?

In our work with patients at end-of-life, we have learned that this time period can be meaningful and rewarding. Too often, however, it is a frantic time for families who are asked to make decisions that they are uncomfortable making because they do not have this experience. Only 30 percent of Americans have an advance directive, even though they can be created relatively easily, for free, and without a lawyer. Advance directives give you the ability to document the types of healthcare you do and do not want, and to name an "agent" to speak for you if you cannot speak for yourself.

Communication and preparation are very importance at the end-of-life. Part of our mission at Arbor Hospice is to educate the community about advance directives and end-of-life issues. Our goal is to help spouses, partners, doctors and patients and parents and children to initiate important conversations and document wishes.

Advance care planning is especially important for those of the "sandwich generation." Those who care for their aging parents while supporting their own children are often forced to make decisions not knowing what their loved ones really wanted, because it was never brought up.

It's never too early to talk to your family, friends and doctor about how you want to be treated if you become seriously ill. National Healthcare Decisions Day, a day dedicated to encouraging people to talk about their end of life wishes celebrated every year on April 16, is approaching. Use this time to think about your own wishes and begin conversations with family and friends. It's the most important gift you can give your loved ones.

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