Monthly Archives: February 2014

Conspiracy of Silence

One of my favorite quotes from Dr. Martin Luther King, Jr. is: “In the end, we will remember not the words of our enemies, but the silence of our friends.” Although Dr. King’s intention with these words was probably to call to action supporters of the Civil Rights Movement, I believe these words can inspire meaningful conversations in planning for the end of one’s life.

I have had the privilege of witnessing the beginnings of some very personal conversations between hospice patients and their families. I had personal talks with my mom and my uncle during their home care and hospice experiences. I sat with my husband and his mother when they spoke about hospice care (when we traveled to Arizona for what would be our last visit with her). In all of these conversations, though, I believe there may have been things left unsaid. Perhaps we spoke peripherally about the disease and focused only on cures and possibilities of treatment. Maybe we could only muster small talk on superficial topics like the weather or last night’s sporting event. Regardless of our intent when we started talking, we likely created conspiracies of silence.

A conspiracy of silence can occur when someone we love is diagnosed with a terminal illness or is in the late stages of a chronic illness (i.e., dying). The silence may arise for several reasons:

We don’t want to talk about death because we think death will occur if we mention the word.
We don’t want to “give up” or “lose hope”.
We don’t want the patient (our friend, our spouse, our child, etc.) to “give up” or “lose hope”.
We are uncomfortable with death.
We believe we must only focus on hope and cure (to encourage the patient; to bolster ourselves).
We are afraid of [fill in the blank].

And so, we don’t talk about the diagnosis in concrete terms (“You have cancer.” “I am dying.”). We choose to ignore the physical changes that are obviously apparent. We fail to acknowledge that we are each in need of meaningful conversation. We don’t give voice to things which left unsaid will be regretted. We don’t reminisce over shared memories. We don’t apologize, ask for forgiveness, or forgive. We don’t say “thank you” or “I’m so glad we are friends” or “Life won’t be the same without you.”

All of these things we don’t do create this conspiracy of silence that isolates the patient to face their reality alone: they are dying and there’s no one to talk to about their feelings and fears, about their life’s meaning and impact, about how much they love and have been loved by family and friends.

Yes, it can be difficult to approach someone who is dying, especially someone we love.

Yes, it can be challenging to start a candid discussion that acknowledges a cure may not be forthcoming.

Yes, it is heartbreaking to recognize that death may be closer than anyone wants to believe.

But, how much more difficult or heartbreaking must it be, as the person dying, to have no one acknowledge that fact: You are dying.

Consider your responses to these questions the next time someone you love receives a terminal diagnosis:

Would you want people to tell you how much you have meant to them?
Would it be difficult to continue pretending that you will be cured, when you know in your heart that no cure will come?
Would you want someone to give you the chance to express whatever you’re thinking and feeling before you can no longer do so?
Would you want to say “I love you” or “I’m sorry” or “I’m proud of you” before you close your eyes for the last time?

Caring Choices can help break the conspiracy of silence (or prevent it from happening). It’s never too early to talk with your loved ones – but it will eventually be too late.

Tragic Comedy

Maya Angelou once said, “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.”

Today, as I filled out my Five Wishes form from Aging with Dignity, I was awash with emotion. A literal ocean of wave after wave of memories eroded the shoreline of my nerve as it ultimately became clear to me how the sand of time filters out the bottom of the funnel of our life. As in an hourglass, perhaps we are given a measured volume of sand with which we base our entire life on hoping it lasts longer than we can ever imagine. And yet each day the grains seep as seconds pass and we are no more aware of the remaining volume above as we are of the limit of the universe.

My point to all this is that while it took less than 45 minutes for me to read over the form’s questions and fill in the lines and spaces, my entire lifetime washed over me. All of the comic tragedy of life rose and fell like a tide in an eddy. I was once more an infant, then a child, a boy and a fool, a student and a laborer, a vagrant, a lover and a liar, a cheat and a friend, a Samaritan, a brother, an enemy, a parent, a husband, a nurse and a teacher. My thoughts pounded against the surf of time as voices echoed and visions in mind’s eye faded across the expanse of my life. I have seen death, as many of us do, and I have lost hope as many of us will. And through all the laughter, playfulness, successes, tears, pain, failures, losses and accomplishments, I have witnessed the truth in Ms. Angelou’s words. The ways people made me feel have tremendously impacted my life.

In our lives, we are each exposed to the love and hate/comedy and tragedy of reality. Strength of heart is free for those of us who chose to exercise it, with a kind word, a smile, a helping hand, and even a nod of recognition. Each individual act builds the endurance to face the fear and challenges of life.

Caring Choices knows that every one of us has experienced the vastness of this sea of emotion and harbor of love. We hope to allow you the opportunity to plan for when the hourglass empties and the last grains of time funnel down to what can be a most important and loving moment of each life. Preparing for the impact of our death on those who carry on may very well be the difference between a comic or tragic effect. Will there be laughter and love or anger and dissension?

Waging War and Planning for Peace

You’ve no doubt noticed that American culture uses militaristic terms to rally us to support an idea or a program. Our politicians over the decades have waged war on countless non-military fronts: War on Drugs, War on Poverty, and War on Terror. On the healthcare front, health professionals, disease-related organizations, and individuals want us to “battle” cancer and “fight” heart disease (among others). In a book I’m reading, I recently came across the phrase “war on cancer”.

For each of us, the “battle” is and will be different. Some of us will wage war against chronic physical illnesses. Some will “fight” depression or other mental illnesses. We “combat” addictions and the demons that accompany them. [I wonder if this militaristic approach to illness exists in cultures outside our own.] I remember asking my uncle how much “fight” he had left in him when he was deciding whether or not to go through a double-leg amputation. Each of us faces a personal war against an enemy that will eventually claim us all. For all of this war-waging, battling and fighting, we cannot outlast our ultimate “enemy”: DEATH. I often read obituaries that report a loved one had “fought the good fight” or had a “valiant battle against ‘X’”. There seems to be no “giving up” when embroiled in a War on Death.

Yet, many of us want, even expect, a peaceful death. Nearly 90% of Americans say they want to die in their own home, surrounded by family and friends, and free of pain. At some point amid all the combat, each of us will determine that we are ready to lay down our weapons and opt for peace.

And what might that peace look like? Energy and resources expended in war can be re-focused on people and things we love rather than symptoms and side effects. Peace might mean sleeping in our own bed free of tubes, wires and beeping machines. It might mean no more painful road trips to treatments that make us too sick to enjoy time or a meal with our family. It might mean that our children will not be forced to make the ultimate decisions about how or when we die. It might also mean that we have given ourselves time: to get all of our affairs in order, to help our family carry out our final wishes, and, to play with grandchildren, snuggle with pets, hold hands with spouses, share love, reminisce, and say goodbyes.

In most all military wars, leaders plan their exit strategy well before the battle begins. We could “as good leaders” do the same. Long before we decide to stop fighting, we could make our plan for peace. Early conversations about our plans for war and peace can help make the transition between the two more gentle for us, for those providing our care, and for our loved ones. Deciding what kind of war we want to wage and how long we will (can) wage it can help ready us and our family for the peace that will follow.

Caring Choices can help you make plans for peace when the battle ends. Peace for yourself. Peace for your family.

Safety & Comfort

Throughout my life there has always been an ongoing focus on safety and comfort. Lately I have found that using humor to engage this topic has not really increased the likelihood of receptive dialog. Undaunted by this today, I am going to share the real reason that there has always been a need to fulfill those goals.

Selfish as it sounds, I want to be safe and comfortable. Don’t you? How we go about that depends on a multitude of factors. Initially, if we are born within a secure family group that is not too fraught with turmoil, or have parents/ guardians who have basic resources and intelligence we are more apt to have the trifecta of survival: Food, Clothing and Shelter. Unfortunately, all over the world, many regions are devastated by war, barren of resources, or so impoverished that even the basics are a daily challenge. Yet, the need for safety and comfort remain. To be safe from danger/ harm and free of pain/abuse seems like pretty basic needs to me. Food, clothing and shelter accommodate the environment for safety and comfort. And just for the record, comfort does not need to be “feeling good”. Comfort can mean simply to not have pain. And being “safe” does not always mean being free of responsibility. Many people have put themselves through unimaginable danger and pain so we may have an opportunity for safety and comfort. Any account of history will prove that all over the world being Free may not necessarily mean “not imprisoned”. Lack of options can be a prison for many.

Why do I say all of this? For the very reason I seek safety and comfort, I have always believed (and more recently have become increasingly convinced of the sincerity of this belief) that we are all intended to not only seek safe and comfortable environments for ourselves, but to assist in helping others achieve this as well. Perhaps this is why since an early age I could not feel comfortable in any role which interfered with someone’s safety or comfort. In my youth there were many times my own lack of strength caused emotional, physical and psychological suffering. Of this truth, I am forever bound. But from that reality has emerged a sense of empathy for all of the situations presented today. My hope now is to educate and support the continued efforts for the safety and comfort of all those whom I can reach.

Caring Choices may be for many the first extension of options for the continued desire to have a safe and comfortable life to the very last breath.