Monthly Archives: September 2013

Live Life

“Live life with kindness and empathy for the pain in the world.” As Nature is harsh, so can be the actions of people. Wise teachings from the beginning of time have directed our thoughts toward a gentle touch for those in need. Wars are fought over the distinction of meanings. As some say this is the way of the world.

Approaching 59 years of age, I often understand the fragile moment of each word spoken in anger, meanness, spite, jealousy, deception, frustration, and fear. The complication of action and reaction to these emotions shakes the essence of hope. Hope that love is stronger. Hope that there is someone who will reach out to us in our moment of need, to allow us to be at peace when all thunderous storms of reality and chaos have befallen us. We reel from the actions and words of man or force of nature.

As my father approached his final days, we looked at each other for the last time in a hallway of an assisted living facility. He thanked me for bringing him a card and we parted with one final “See ya later”.

Later, of course, never came. When my Uncle Frank called me later that week and told me my Dad died I was still shocked even though I had known for years that this time was approaching. Throughout the past year our family was strained with his gradual mental and physical decline and worsening severity of the disease process. Now he was finally at peace. And I was thankful for the time we had taken advantage of long ago to discuss his wishes and plans for his final days. With everything already set up and planned out, the impact of the loss was more easily soothed with the connection of the love we had shared and time to grieve with those who knew him. There were no uneasy questions to ponder, no long, drawn out settlement concerns, and no emotionally charged debate over what “Dad would have wanted”. Uncle Frank and I knew exactly what Dad wanted. Despite the vacancy created by this loss in all of us, there was a feeling of love and joy of memory.

At Caring Choices, we encourage the hope for everyone to have such an experience. To know that no matter how difficult the loss is felt, there is no complicating avalanche of unresolved issues to now address. The “last Loving Act,” as I have heard this called, is to make sure your loved ones know how you wish to Live Life.

Worse Than Death

One of my occasional early Sunday morning indulgences is to lie in bed and watch old episodes of AMC’s Mad Men. The debauchery of many of that show’s characters never ceases to amaze me. This morning I caught an episode from Season 3 titled “The Arrangements”. Squeezed into this episode are a brilliant few minutes of dialogue between Betty Draper and her gruff, war veteran father. Betty’s dad invites her to join him at the kitchen table to discuss his arrangements (will, funeral, etc.). Betty is visibly uncomfortable. Noticing Betty’s discomfort, her father says something like “it’s all written down; we’ll never have to talk about it again.” Betty’s indignation flares and she accuses her dad of being ‘selfish and morbid’ for wanting to talk about this with her. She says “I’m your little girl” (albeit enormously pregnant with her third child) and follows that with a most damning statement: “I know it must be horrible to look at whatever it is you’re looking at, but can’t you just keep it to yourself”!

This particular episode is set in the spring of 1963 – an era when people did not speak about taboo topics like death, especially their own. In the five decades since 1963 in real life, death is still something most would rather people keep to themselves. People often ask me how I can be comfortable around death and work with people who are dying. I credit my parents with making me “comfortable” with death. I attended my first family funeral at age four. (A 16-year-old cousin was killed in a car accident.) Not long after that, one of my brother’s Little League teammates died. There were many family and friends-of-family funerals throughout my childhood and adolescence. Death was not something from which we hid. We heard about death in church sermons and Bible stories. Death was a natural part of life. And it was always possible that Mom’s health could take a downward turn at any point.

With reliable regularity, Mom would land in the hospital each winter with pneumonia. Several times, Dad would make peripheral comments about not knowing how long Mom would be “with us”; especially if she had more than one hospitalization a year (which she often did). Mom always came home, though, and life continued on its path. She never hid her disease and its ravages from us. (COPD is not easily camouflaged anyway.) Because she lived with her disease every day, so did we. Chronic illness was always a part of our lives and we learned from Mom how to manage it and support her.

The greater lesson she taught me through the progression of her disease was how to talk about what was happening and what would eventually happen. She talked about her death matter-of-factly, often saying she’d be happy to reach 70. One afternoon we were watching a medical documentary (she loved those!) about some awful affliction and Mom said that it would be “worse than death” to suffer as the person in the documentary had. I was, of course, shocked – how could anything be worse than death?!?

Mom was the most pragmatic person I’ve ever known. She learned through having COPD that she could not allow herself to be overcome by emotional outbursts because she wouldn’t be able to breathe. If she thought something, she said it. If she wanted to talk about something, we listened because we knew every sentence was uttered through labored breathing. So, on that particular day, I listened to Mom tell me about things that she considered would be “worse than death”:

Gasping for breath, as if suffocating
Drowning in COPD secretions
Having cancer in her eyes
Being hooked up to a ventilator and knowing we would have to “pull the plug”
No longer knowing who she was or who we were

Her list was longer although I don’t remember many others all these years later. We were able to have an open conversation – one that she needed to have, so that I could understand what she was facing and would know what to do. Unlike Betty Draper, I did not think Mom was being selfish or morbid. She was being practical. She was being proactive and preparing me for the duty of carrying out her wishes. She was being selfless in acknowledging her own mortality and sharing her quality-of-life values with me. She was giving me the benefit of her last loving act so that when the time came (and it did come), I would know what to do. I would not have to second guess decisions. I would not suffer with anxiety wondering if I was doing the “right” thing.

Was it easy to listen to Mom’s “worse than death” list? Was I comfortable with her talking about her own death? NO WAY. It was profoundly sad. It was beyond difficult. I didn’t want to think about life without my Mom. But Mom wanted (needed?) to have that conversation, like Betty’s dad wanted to have in the TV episode this morning. The important difference between me and “Betty” was that this daughter listened.

When people you love want/need to have these conversations, Caring Choices can help you listen.

“I have no idea”

His name was Chris. Thinking back, there was never anyone in my lifetime that had such influence on my decisions. During the professional period in our time together, when I would ask one of a million questions of him; he would often simply reply “I have no idea”. And the honesty in that somehow comforted me. Over the next year or so I exhausted myself on the objects of our conversation and set about with newfound strength and determination to resolve the challenges and overcome the obstacles my past had erected. Despite the circumstances surrounding our meeting (which some consider miraculous), I never knew the full impact our relationship would continue to have in my life.

“School” he suggested.” Impossible, I just knew. And even today I find it difficult to consider any form of continuing education without butterflies and nausea. He may have been able to push me into it…had his Cystic Fibrosis (CF) not intervened. Maybe had I been further along in my Nursing education, I might have realized when I visited him in his hospital room that day, that was the last I’d see him. I called later in the week to ask if he liked the music cassette I’d left for him. His wife’s request to not stop by again should have been my hint. But I didn’t know. Now it was I who “had no idea” I did not know that the person whom I now considered a close friend, that welcomed me to his home, invited me to his wedding, and sat at my supper table with his new wife was soon going to die. And I had really never thanked him, never asked him what I could do to repay him for the sacrifice he made for me (which I now very clearly see). During our sessions together he would often collapse to the floor in fits of coughing spells that would last for an uncomfortable length of time. He just gathered himself up into the chair and apologized. He gave time he didn’t have for himself, to me. He knew all along that his days were numbered. I had no idea.

Today with 21 years of nursing experience, it is hard for me to understand how I did not know. As a steel mill crane operator, I had no reason to research CF or understand its signs and symptoms. I had no idea of the tragic consequences of its life-clogging form. I never knew anyone who had it, and had never even heard of anyone who had it. CF really had no impact on me — until Chris. So it was as if I was blindsided by this when I called again the following week to see how Chris was doing and his wife told me he had died that day.

There had been no conversations between us to register some recognition of finality. Maybe he wanted it that way. But 22 years later I still look at his picture and wish I had really thanked him, wish I had been able to let him know how much he helped me and how much he gave me the courage to take the steps needed to get my degree in Nursing.

With Caring Choices, the conversations are encouraged to prevent anyone from ever having to experience a loss with “no idea” of the wishes and the love that exists in our lives together. We support and encourage the moments that seem too hard to initiate, we spotlight the “elephant” in the room that no one talks about but all see. And we question with love. We hope with kindness. And we do have an idea how you can be prepared for the inevitable end life itself brings.

“What Are You Prepared to Do?”

The title of today’s post comes from one of my favorite characters in the movie, “The Untouchables”. In the film, Sean Connery’s beat cop character Malone cajoles Kevin Costner’s Eliot Ness into deciding how far he is willing to go to “get Capone”. You can see the first time he’s asked this, Ness hesitates and carefully considers his response, which is to do whatever is within the law. We, the viewers, know what it will take to bring Capone down and it’s somewhat painful to watch Ness’ slow process to get there. The final time Malone asks Ness “what are you prepared to do”, he’s speaking with his dying breath, bloodied on his living room floor. Ness, now motivated by avenging his friend’s death, is prepared to do whatever it takes within or outside the law.

In advance care planning, “What are you prepared to do” is an important question for each of us to ask:

of ourselves in making choices about the healthcare we will receive and when comfort should prevail over cure,
in defining our own quality of life, and,
of our loved ones whom we expect (yes, expect) to make decisions for us if we are not able.

That last bullet point is very important. So often I have heard people say that their spouse and/or their children “know what I want” or they will “know what to do”. But when I delve deeper with more probing questions, I learn that expectations are held that spouses and/or children are not prepared to fulfill or of which they are not even aware.

There is a natural instinct to name the person(s) closest to us as our substitute decision maker(s). We choose someone we love and who loves us; someone who knows us as well as they know themselves. But we often do not have the detailed conversations that will prepare them for the actual act of making decisions for us. It is very clear from literature reviews and conversations that most of us do not want to be a “burden” for our loved ones. We tend to decide for them what would be burdensome. Without talking to those we love, we convince ourselves that making decisions about our healthcare, or placing us in a nursing facility, or opting for hospice care will be handled willingly when the time comes. We have expectations that we will be cared for in a manner consistent with our values and beliefs and definitions of quality.

So, as important as it is to choose someone to be our substitute decision maker when (not if) we are unable to speak for ourselves, it is equally important to ask that person(s): “What are you prepared to do …. for me?”

“When the Time Comes”

Many people have commented that having a conversation about care choices they want or don’t want may be too difficult or too emotional. They would rather just deal with things “when the time comes”. In my experience as a hospice nurse, I have had hundreds of these conversations with patients and their families when this unexpected/unwanted time came. These conversations – after a terminal diagnosis was learned, or they heard the phrase “nothing more we can do” – are the toughest conversations for people to have.

They often haven’t had the benefit of earlier care discussions or “what-if” conversations that might have aided them when I walk in the door for a hospice admission. At this moment in time, patients and families must grapple not only with declining physical and cognitive health, but also with changing roles, an impending death, anticipatory grief, emotional upheaval, and maybe even unresolved issues. Because hospice admissions occur most commonly across the U.S. within only a few weeks of death, patients and families are thrust into having these conversations.

In all the years that I have had these conversations with people, I have been blessed with the repeated gift of sharing the right words at the right time, as evidenced by some of the cards and notes I received from families who didn’t want to have these conversations but were nevertheless forced by circumstances to confront the situation. Here are some excerpts:

Thank you for your concern and compassion to our father. You helped so much in his journey.
We are forever grateful that you helped her pass from this life to Heaven with love and dignity.
It was extremely difficult to watch her “fade away”, but your presence and advice in caring for her was deeply appreciated.
We greatly appreciated the effort you made to locate our brother. Because of you, he was able to spend time with the family and attend the funeral.
She came to think of you as a friend and would look forward to your visits with her.
You called my sister that night to come right away. My brother and I came that night also. We are very thankful that we could all be with Mom during her final days. I had been worried that she would slip away without my having the chance to say goodbye. My sister, brother and I were able to help Dad with Mom and we were all able to say our goodbyes.
Dad was our hero. He showed us how to die with faith and courage. We thank you for the dignity you gave to his final hours.
We were and are deeply thankful for your prompt intervention; it made the difference between a night of suffering for my mother and anxiety for us, and that of calmness and rest.
We would have been lost without your honesty and guidance. The respect and compassion you showed Mom was something I hadn’t considered. My main concern was her comfort, and we got so much more.

My purpose in sharing these personal notes is to reinforce the importance of earlier conversations and planning for the kind of care you (or your loved ones) want “when the time comes”.

One card I received included scripture from Colossians 3:12, 14, which reads: “Put on a heart of compassion, kindness, humility, gentleness and patience. Beyond all these things put on love, which is the perfect bond of unity.” This is how we approach conversations through Caring Choices. Talking about death is difficult, but it is necessary to assure that we, and those we love, will have the kinds of experiences like the families who wrote the notes above.

@ 2013 Caring Choices