Monthly Archives: October 2014

F.E.A.R.

I looked up the acronym F.E.A.R. and found some pretty interesting interpretations online. I again realized that interpretation is based in perspective. Here are some of the online acronyms:

Forget Everything and Run
Face Everything and Rejoice
Finding Excuses and Reasons
Fear Expressed Allows Relief
Frantic Effort to Avoid Reality
Face Everything and Respond

Based on the opposite interpretations these statements illustrate, fear, or rather our reaction to it, can either motivate us or stop us in our tracks. And so it goes with end-of-life conversations. Many people we’ve come in contact with express fear of just starting end-of-life discussions with people they love (or with people to whom they provide healthcare services). Others fear having to make decisions for a loved one who can no longer speak for themselves. Some fear that just talking about death will cause it to happen to someone they love, or that someone they love will give up their fight.

I once approached a woman with a very serious, life-limiting illness about what kind of care she wanted. She was obviously near death yet no one in her circle had any idea if, or how far, she would want to pursue treatment or surgical intervention. The physical changes in her body were blatantly evident of impending death (probably within 24-48 hours). Those in her circle recognized that she would likely not live “very much longer” but no one was prepared to make decisions or even ask her the questions that needed to be answered at this moment.

This was not the time to ask her about her values and beliefs, to abstractly discuss options, or to define the possible outcomes of aggressive treatment versus “doing nothing”. This was a time for pointed, direct questions. So, I checked my own fear at the door and asked her what needed to be asked. Did she want to go back to the hospital? Her answer was “No.” It was likely a surgeon would need to perform extensive, invasive procedures to try to save her life (if she lived through the surgery). What would she tell a surgeon if the only option was amputation? This time, her response was an emphatic “NO!” Does she want to be kept comfortable with her pain managed, even if she becomes unconscious? “Yes, I want to be comfortable. Knock me out.”

What was my own fear in advance of this situation? Would I upset her circle of family and friends who were at bedside in her home to the point they would ask me to leave the home? Would I ask the right questions in the right order? Would she respond or shut down, giving us no insight on how to proceed?

My fears were unfounded. Her family and friends were relieved that I was the one asking those questions. They were too emotionally invested to utter the questions that so desperately needed answers. The order of questions seemed to flow from me as if guided by another Realm. She responded concisely, clearly articulating her beliefs and values in very simple responses. We were able to put a hospice plan in place quickly. Her pain was managed; she was made comfortable. She died peacefully with her best friend at her side 19 hours later.

With death that close, we were all forced to “Face Everything and Respond.” That experience might suggest that the previous responses were to “Forget Everything and Run.”

My husband and I are ridiculously hooked on the show “Breaking Bad”. We were binge watching it recently and one of the scenes talks about fear. In that scene, one man advises another about how to face his fear: “Get up, get out in the real world and you kick that (expletive) as hard as you can right in the teeth.” I think we have a responsibility to ourselves and those we love to do just that, especially with the general fear of talking about death and making our wishes known. Forcing acknowledgement of fear and taking action to face it takes courage. The courage comes from wanting to make things easier (or more comfortable) for someone else. It’s not rocket science but it is difficult. Continuing to run from fear only gives it more power over us and robs us of our freedom of choice.

Caring Choices offers a tool to help individuals and families face the fear of conversation. It becomes easier than you might imagine to talk about death, especially if you start conversations when you’re healthy. You can take your time examining values and beliefs, people and places and understanding definitions and resources long before you’re faced to make decisions about complex care. Contact Caring Choices and let us help you “Face Everything and Respond.”

Given a Gift

Many forms of “gifts” exist in today’s world. To spare you the usual comma laden list of my ideas on the subject allow me to give you all the “gift” of exploring the topic on your own.

This freedom of choice is, after all, what this life is all about … is it not? Can anyone who is not given a choice in something wear that solely as matter of fact? Or do they become immediately enrolled in to the ever inclusive club of the “deprived.”

As far as gifts go, from my experience at least, the value of the thing given changes over time on almost a yearly basis. At one point in my life little plastic dinosaurs would have been the Holy Grail of all gifts! As the years go by the item desired and values placed on them changed for me.

Today I would have to say, if asked, that time would be the greatest gift of all. And yet still this very afternoon I was in a cozy little state of recline in my living room napping as only a “felt like” 159-yr-old man could. And the subject matter of my dream was mostly about how I was in a position of grave peril of unknown nature and was reminded by that oh so elusive “inner voice” to use the “gift” I had been given to free myself of this danger. What exactly that gift was remains a mystery. While I lay refreshed and pondering this it occurred to me that possibly that Gift I had been so gently reminded to use was in fact the time I still have.

This may not be such a far-fetched conclusion after all when you consider one fact alone. My fingers are burning as I type this from the 3 hours of guitar playing I did yesterday at the first gig I have performed at in over 5 ½ years. While rehearsing for that day, I realized how deeply music and my guitar playing were rooted in my soul. For one reason or another I had taken that gift away from myself. I used work, overtime, fatigue, illness, stress, chores, occasional interruptions, and daily responsibilities (oops, that’s a comma-laden list!) to justify not picking up the most valued gift I have ever been given. That gift is the ability to express my deepest spirit through sound and music.

Not only do I now realize I had taken this gift away from myself, but I’ve come to understand that I had also taken it away from others. I have often found meaning in my dreams and created many songs, poems and lyrics derived directly from them. Today was a special gift for me. The gift of realizing I have time.

Caring Choices would welcome the honor of sharing time with those who are also in the process of exploring the vast array of gifts they have been given. We understand the choices of why and how to bestow care of these gifts upon those we love. The decisions are not easy, and all too often must be made on an individual basis. But the conversations leading up to them can be a gift shared by many.

Informed, Not Terrified

This past week, I read an article in The New York Times about women and heart attacks. Amid all the information about the differences between women and men with heart attack symptoms, survival rates, and treatments, one particular line stood out to me: “It’s good to be informed, not terrified.” And I thought, what a great statement! This line has a place in the work that Caring Choices is doing.

When we talk to people about having personal conversations and making healthcare choices with their family and friends, many have that deer-in-the-headlights look. They’re terrified to start these conversations for a variety of reasons:

Some fear that somehow just talking about death will bring it about.
Many are afraid their loved ones will become irreparably sad or depressed.
Several “just don’t want to go there.”
Others are concerned that too much information will make them fret and worry, and take away their focus on just living/enjoying their lives.

Since no one has a crystal ball to help us anticipate which disease(s) will befall us or to know when a trauma/accident will occur, it behooves us to begin thinking now about the “what if” scenarios that accompany illness, accidents and simply getting older. Not that we can consider EVERY possible outcome of aging, disease, or crisis; but having information about disease trajectories of which we may be at higher risk, or the common maladies of advanced age, need not terrify us.

Nearly every day, I encounter an elder person who says:

“I didn’t expect to live this long/be in a nursing home.”
“I don’t want to be a burden to my family.”

Or, I encounter a family member (usually an adult child) who says:

“I just can’t take care of Mom at home anymore.”
“I wish I knew what Dad wanted us to do.”

These comments illustrate the importance of having conversations before we reach ripe old ages, before chronic diseases reach end-stage, and before a trauma occurs. Having information does not provoke the occurrence of health problems. Sharing information does not necessarily produce sadness, depression or fear. But we’ve seen that NOT having conversations and making decisions does promote chaos, guilt, fear, confusion and, sometimes, dissension. Which scenario would you like your family to be in when you reach your end-of-life stage: informed, cooperative, emotionally-supportive advocates or uninformed, quarrelsome, emotionally-conflicted adversaries?

Caring Choices endorses having all the information you need to make decisions and have conversations without being terrified. Sometimes that means you and your family need someone who can help you begin the conversation and mediate stalling factors. We can help. You can talk about this.