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 gbrooks@arborhospice.org.

Lessons from Loss - One Year Later

The one-year anniversary of a parent’s death is a milestone for any adult child.  Bearing witness to a year of "firsts" without your parent: of birthdays – yours and theirs; of holidays, big and small; of national and political events; and of family happenings; all of which would have had an impact on them and of which they would have influenced your response to, can be an emotional roller coaster. 

As I conclude the one year anniversary of the death of my mother this week on July 23, I am struck by the dichotomy of how hard and how easy it has been to let go of her memory. As the ten-day period approached of the time she was admitted to the hospital to the time she died, I found myself reliving moment-by-moment what happened last year and dreading what was coming each day. 

There was the call that she needed to go to an emergency room; then having her admitted to the hospital; the subsequent cancer diagnosis; then a call that she was in organ failure post-surgery; and finally the decision to bring her to The Residence of ArborHospice for the last 36 hours of an incredible life.  

Physically feeling nauseated each step of the way, I had to remind myself that I knew what the outcome was this time, and I had some control.  I also am astounded at how much I have learned from my mother since her death, and wish I could tell her in person how much I appreciate those lessons.  

I have to acknowledge, however, that we did not have the type of relationship where I could have told her in person.  I am so thankful that a week before she was admitted into the hospital, we had a half-serious phone conversation in which I acknowledged that she might have been right about something for the past thirty years – we both laughed, and moved on to another topic.   

One year later, having grown in knowledge about that topic, I am grateful she had me learn about it the way she did.  She was not perfect, as none of us are, but was wiser than I gave her credit for.   

Now this year of mourning is over, and while we never truly are done on our grief journeys, I know that the intensity of the journey will change.  Some days will be worse than others, but I know with support from family and friends who have been on this journey before me  that I too will be able to remember more of the moments that bring smiles and laughter than tears.

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

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 gbrooks@arborhospice.org.

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 gbrooks@arborhospice.org.

Making It Count With Your Parents

I saw the movie Nebraska recently and was struck by the younger son's realization on how important it was to his dad to make a lifelong dream come true, no matter how irrational it may have seemed to everyone else. His son originally agreed with his mom, his older brother and everyone else - Dad must have some dementia, doesn't really know what's going on, and is being duped by a particular situation.

How many sandwich generation adults, juggling the responsibilities of everyday life between careers, relationships and children along with caring for aging and ill parents, have faced the same struggle?

This son finally makes the connection that this is what is important to his dad in whatever months, weeks or days he has left in his life. He listens to what his dad always wanted, and then selflessly acts to make sure his dad's dreams are realized. It's a very poignant moment, and one we who struggle with parents who are living out their dreams in ways that may not seem rational or age-apporpirate must come to terms with.

What harm comes from realizing a dream at the conclusion of your life? Can you help a loved one reach that goal during their life journey? My goal would be to have as much impact as the younger son did with his father.

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 gbrooks@arborhospice.org.

Avoiding the Uncomfortable Encounter

Serious illness, death and dying are still taboo subjects, and it is common to feel uncomfortable interacting with someone who is ill or nearing the end of life. You may be afraid of saying the wrong thing, and you do not want to be the person who offended - despite your best intentions.

While each person may interpret your words and actions differently, Arbor Hospice offers the following advice for interacting with loved ones facing a serious illness:

• Avoid the words "you look great." When you have a serious illness, you often look ill and are very well aware of it. You do not want to remind someone that they are not looking their best.
• Be specific in your offers to help. Friends and family may be quick to ask what they can do to help you but those requests are often unfulfilled. Your ill loved one may not ask for help because he or she does not want to be a burden or feel vulnerable. Instead, say "let me get that for you," and go get it. Or, instead of asking if the person wants you to shovel their snow, just go do it.
• Be honest and simple. Do not worry about saying the right or wrong thing. It is okay to acknowledge an illness and tell your loved one you are thinking about them. Say "I love you. I'm sorry you're going through this."
• Do not drop in for an unexpected visit. Phone ahead to see if it is okay to stop by, and understand that it might not be okay. Give your loved one a chance to tidy up or dress appropriately. It is also possible that your loved one is not up to visitors. Respect his or her wishes.
• Do not visit too long. It is common for someone with a serious illness to tire easily. He or she may be uncomfortable asking you to leave or leaving early. Plan to stay for only 20 to 30 minutes.
• Do not be afraid of silence. Sometimes your presence is all that is needed and means more than any words. By merely sitting with someone and holding their hand you are making an impact.
• It is okay to say "I don't know." Your loved one may voice frustration over their illness or inability to do what they used to. You do not have to fix it. Instead of saying, "I know how you feel," say "I don't have any idea what you are going through, but I am here if you want to talk."
• Listen. Sometimes the best thing you can do is listen. Listen to your loved one complain, ask questions, reminisce or tell stories.

Keep in mind that each person has their own preferences, and may or may not want to discuss his or her illness. Ask your loved one what he or she is comfortable with and honor those wishes. More often than not, you will find that your loved one does not want you to be uncomfortable and understands your fears of getting it wrong. If you can get past those fears, you may be able to interact with your loved one and make memories that will last for years to come.

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

Is There Such A Thing As A "Good Death?"

"Is there such a thing as a good death?" I asked Arbor Hospice President and CEO Gloria D. Brooks.

I wanted to know because I had often heard the term "good death" in hospice conversations and I was confused about what it meant.

As a volunteer, I have observed patients and families during the "dying process," which in the minds of many begins when a doctor delivers a fateful diagnosis, continues through sometimes grueling treatment and concludes many weeks, months or even years later.

As a volunteer, I have also co-facilitated grief support groups in which family members and others recount their often painful memories and flashbacks similar to those experienced by individuals with post-traumatic stress disorder.

Few patients and family members, I thought, would describe the dying process as "good." But, perhaps I didn't understand what the term "good death" meant.

So, I put my question to Gloria to help me reconcile the idea of a "good death" with my experiences. When I posed the question, I didn't know the personal significance it would have for her.

"Hospice is about self-determination and quality of life," Gloria told me. "It's about how patients want to live each day. We want to know the things that are important to patients so that those things can be sustained as much as possible until the end of life."

"Each patient defines what quality of life means for him or her," she said, "and we support patients in having that life for as long as possible."

"Hospice is all about exploring options. We don't tell patients and families what is the best option for them because we truly don't know."

Sometimes patients' choices are a difficult thing for family members and other caregivers, and sometimes for hospice staff as well. The patient decides, and the rest of us respect that even if it is not what we would have chosen for them."

Gloria pointed out that quality of life is about more than self-determination, though.

"If pain is getting in the way of quality of life, we address that. For some, it may be symptom management, like controlling nausea so they can enjoy the foods that are special to them. For others, it may be remaining lucid to have important conversations with loved ones."

As our conversation neared its end, Gloria told me about her mother's death this past summer to illustrate how challenging it can be to apply the concept of self-determination, even for someone as committed to it as Gloria.

"My mother had been ill for 18 months. I wanted her to go to a doctor because she was tired and losing weight. But that was not what she wanted. Eventually, though, she agreed to go to the ER 12 days before she died."

"Because we had done her Five Wishes, I was able to be very clear with the hospital staff and family members about what she wanted at the end, which was not to be in the hospital attached to a lot of tubes. So, I took her to The Residence of Arbor Hospice where she spent the last 36 hours of her life."

"My mother had a good death by her definition because she wanted to be in charge of her life and did not want to die in a hospital. I can only hope that as my mother's patient advocate, I was able to give her what she wanted."

"A good death is a subjective thing," Gloria told me, referring to her mother's wishes. "Other people might look at it from the outside and wonder if it was a good death or not."

What is your definition of a good death?
This blog entry was written by Dennis Sparks, Arbor Hospice Volunteer. You may contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

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 gbrooks@arborhospice.org.

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 gbrooks@arborhospice.org.