What to Write to a Friend With Terminal Illness

On a flight last month, I introduced myself to seatmates and eventually handed the mother-daughter travelers my condolence tips bookmarks.

"This is great," the daughter said. Her elderly mother remarked, "I live in a retirement community and we lose residents from time to time. The manager sets up a nice tribute display, and I like to send a card to the family." But their next question took an interesting turn.

"We have a couple friends who are terminally ill. I'd like to send a card, but what should I say?"

Let's explore this:

• Terminal illness is "the advanced stage of a disease with an unfavorable prognosis and no known cure."
• A prognosis of a number of months (or years) is not a scheduled departure date. 
• The outward condition (appearance) and functioning of a person with terminal illness will vary and may defy others' expectations. 
• Until you are dead, you are alive. 

Blogger Michelle Devon writes with firsthand knowledge in Dying to Live. She shares some riveting thoughts on the tug-of-war between living to stay alive and being the person you want to be.
"Learning to live with disease that is expected to result in your death absolutely does change your perspective. But as my blog title says, I'm not alive and dying. I'm dying to live!"

I asked Arbor Hospice's Lead Grief Support Services Coordinator, Melissa Schultz, LMSW to comment on the interpersonal challenges of living the "last chapter."

"The diagnosis of a terminal illness can be extremely isolating. Many people back off because they aren't sure what to say and are afraid to say the wrong thing. The most important thing is to offer a comforting presence. Whatever you choose to write, speak from the heart. It's okay to acknowledge the illness in a supportive manner, such as 'I'd like to come visit you, if you're up for it.' It would be a disservice to you and your friend to pretend that nothing has changed, but that doesn't mean they need to be pitied or avoided. As Maya Angelou stated, 'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Every day, in countless scenarios, we have the opportunity to say "thank you, I appreciate you." Keep that in mind during your daily activities and when you write a note to anyone. Here are some suggestions about writing to be a friend with terminal illness:

Don’t Write

Do Write

I’m gonna miss you so much!  Get well soon!  Hey, Steve Jobs lived a long time with his pancreatic cancer, so …  Have you thought of: medical advice/legal or tax advice  What are you going to do about your (special needs family member)  Good riddance to that boring job!  Are the kids finally doing some housework?

CARE: How are you today?  FEEL: I’m so sorry this has happened.  ENCOURAGE: Take care of yourself.  REMEMBER: I am thinking about you. In fact, I was just_____ and I remembered when __.  ROUTINE: Did that last storm send (pet) under the bed?  LISTEN: I would love to share a cup of tea sometime soon; I’m a good listener. By the way, my email is _____  ADMIRE: I admire your courage and always have you in my prayers  AFFECTION: Give my love & hugs to __.

This blog post was written by Deborah R. Chappa, the Condolence Note Coach. She works in a Livonia funeral home and is an author, blogger and instructor on writing condolence notes. She is conducting a workshop on Wednesday, September 10 at 1 p.m. at the Livonia Civic Center Library. To register, call the Adult Services Desk at (734) 466-2590.

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.

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 jklein@arborhospice.org.

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 jklein@arborhospice.org.

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 jklein@arborhospice.org.

How Do We Begin Conversations About The Care We Want At The End of Life?

If the content of daytime television talk shows is a guide, Americans are far more comfortable publicly discussing almost any aspect of their intimate lives than they are the irrefutable fact that they will die.

While we intellectually understand that we will not live forever, acknowledging that fact by talking
about it with loved ones is nonetheless an incredibly difficult thing for most of us to do. It is almost as if we have a superstitious belief that if we don't talk about it, it won't happen.

Yet, candid conversations with family members and close friends about the kind of care we wish to receive at the end of our lives may be one of the most valuable gifts we can give them.

And because that end sometimes comes suddenly and unexpectedly as well as from illness, these discussions are as important for 20-somethings as they are for older adults.

While we may know the value of such conversations, many of us are uncertain about how to initiate them and what to talk about once we do. That's why I was pleased to discover that The Conversation Project offers resources to help initiate these important discussions.

The Conversation Project offers a free "Welcome to the Conversation Starter Kit," which begins: "It's not easy to talk about how you want the end of your life to be. But it's one of the most important conversations you can have with your loved ones."

"This Starter Kit will help you get your thoughts together and then have the conversation."

"This isn't about filling out Advance Directives or other medical forms. It's about talking to your loved ones about what you or they want for end-of-life care."

"Whether you're getting ready to tell someone what you want, or you want to help someone else get ready to talk, we hope the Starter Kit will be a useful guide."

"We want you to be the expert on your wishes and those of your loved ones. Not the doctors or nurses. Not the end-of-life experts. You."

In addition to the Conversation Starter Kit, I recommend Five Wishes and Go Wish, both of which were described in an earlier post, to develop a better understanding of the type of care one desires at the end of life.

Have you initiated conversations about end-of-life issues with loved ones, and if so, how did you begin them?

This blog entry was written by Dennis Sparks, Arbor Hospice volunteer. You many contact Dennis by commenting below or emailing him at thinkingpartner@gmail.com.

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.

Why It's Essential to Prepare an "Advanced Care Directive"

Being a hospice volunteer has caused me to become more aware of my own mortality. Death is less

an abstract concept about something that will happen out there to someone else at some time in the future. That awareness has caused me to be more intentional in planning for the inevitable.

An essential part of that planning is creating an advance directive regarding the kind of medical care I wish to receive at the end of my life.

Here's what's involved:

1. Designate a person to be your patient advocate. Depending on the form and where you live, the advocate may be given a different title. Regardless, this person is given your durable power of attorney for health care and is responsible for making important decisions about your care should you be unable to do so. Forms are available at most doctor's offices and health care facilities, including Arbor Hospice.
2. Have the patient advocate sign the form indicating acceptance of the responsibility.
3. Create a living will that describes the kind of care you wish to receive at the end of life. Preparation of a living will can be informed and enriched by the use of planning tools such as Five Wishes and the Go Wish Game.
4. Have one or more conversations with your patient advocate so he or she knows specifically what you do and do not want. The tools mentioned above can provide ideas and terminology that enable these discussions. Have similar conversations with family, friends and others with whom you are close to avoid confusion or conflict should a situation arise that requires the patient advocate to act on your behalf.
5. Make certain that your physicians, health care system and family members know whom you have designated as a patient advocate and that they have copies of your living will. Take your durable power of attorney for health care and living will documents with you if you are hospitalized or are traveling.

Having end-of-life conversations and making these decisions may be difficult. Yet, they are truly a gift we give not only ourselves but those who care about us as we relieve them of the responsibility of guessing our wishes.

We also lessen the likelihood of misunderstanding and conflict among family members as they act on the wishes we've expressed in our living wills.

These are gifts that can extend well beyond our lifetime.

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

Irrational Fears of Death and Dying

Fear. It's the biggest thing holding someone back from their goals, dreams and desires. For some it's a fear of being disliked, of not being good enough or being too much. When it comes to the end of life, it could be a fear of initiating an important conversation.

On the first few interviews I went on with Arbor Hospice patients and families, I hesitated when it came time to ask the patient or family member about the illness and how it felt to be introduced to Arbor Hospice.

Our culture is uneducated and uncomfortable when it comes to death, and I was falling into the trap. I was afraid to ask almost as if I would be cursing myself or those around me by talking about death and dying, or invoke painful memories.

I was quite naive in those interviews with patients and families. They had clearly already begun thinking about the end of life and had chosen comfort care, maximizing the days that were left. They knew why I was there and were willing to share their story.

I had nothing to fear. Time and again, I've heard from patients and families how having important advance care planning conversations led them to Arbor Hospice or ensured their wishes were followed. I've heard patients tell me how wonderful it was to be able to focus on what's most important to them.

Many aren't so lucky. Research shows that most people want to die at home, without pain surrounded by loved ones. Nearly 60 percent do not have this experience. Only 30 percent of Americans have an advance directive, and I am not one of them. I justify this by saying I'm only 24, but I know that's not an excuse.

To be honest, I'm not even sure my parents have a written advance directive. I haven't taken the time to find out or initiate a conversation. I'm afraid they'll think I'm pushing them out the door.

But I refuse to let fear stand in my way. I know my fear is probably irrational - just like many of my fears. I want to honor my parents' wishes when their end of life comes, hopefully many years from now. And I hope they'll be proud and grateful that I asked them "what's most important" and how they want to be cared for at the end of life.

I'm facing my fears - one at a time. I encourage you to do the same.

This blog entry was written by Jaclyn Klein, Communications Specialist with Arbor Hospice. You may contact Jaclyn by commenting below or emailing her at jklein@arborhospice.org.