Monday, November 28, 2016

Writing: A Way to Cope With Caregiving and Loss

My husband was diagnosed with Stage IV cancer. Over the course of the 42months from diagnosis to death we experienced oncology care, palliative care, and hospice care. Over the years, we learned many different ways to cope with the emotions and challenges we faced along the way. One of the most valuable tools for us was writing.

Throughout my husbands illness we both kept a detailed journals of our personal emotions and experiences. I chose to journal not only as a way to record events but also as a way to let some of the emotion slowly seep out from behind the floodgates I built to maintain control. At times, my only release of the most emotional experience of my life was when I could privately spill my feelings onto the page. 

From these journal notes I wrote a series of essays sharing my private emotions with those who were helping patients and caregivers go through similar journeys. The writing of these personal reflections helped me organize my thoughts and communicate my feelings not only to my health care team, to the public, but even to my dying husband. As my chief editor he read and critiqued all my writing. I remember after he read the essay on “The Journey of a Million Losses” he turned to me and said, “Wow, now I understand why you have reacted to me the way you have.” That essay opened an important dialogue between us that never would have happened otherwise.

Admittedly there were times the hurt and exhaustion were too deep to write. In fact, the feelings were so private I feared writing them down. Embarrassed and guilty of the anger I sometimes felt, and exhausted from the emotion and energy required near the end, there were times I was unable to write my thoughts or feelings. However, when I pushed forward and wrote I found it very helpful. It was not only helpful at the time, but it has continued to be helpful now as I go back and read the narratives and analyze the experience.

In the months since my husband’s death I have found comfort in the review and organizing of both sets of our journals. I have found it therapeutic to let the tears flow as I write stories that I do not want to forget. I have also round it useful to share our notes with our children as we together remember and reconstruct those months.

Writing continues to be an important way for me to cope with my grief and reorganize my life. For those who have not tried it I encourage you to start slow and find a way to put your emotions on paper, let off some pressure, and try to understand your thoughts. It not only helps for now, it will help you as you some day want to go back to understand the events of the illness and journey in an effort to understand and honor the one you love.

Monday, November 21, 2016

Defining your wishes for your family: A gift of love

Depriving Death of Its Strangeness: Making Wishes Known

In the above video my husband David discusses how he wants to die. He developed an easy to remember acronym for what was important to him. Using the word HOPE he helped us understand that he wanted to die at HOME, surrounded by OTHERS, PAIN free, and EXCITED until the end. With these statements I understood his priorities.

As his surrogate decision maker I knew that he wanted above any other place to die at home. As his condition declined and his safety became an issue I was able to remind him that this choice meant he needed to listen carefully and comply with our safety precautions so he did not fall and break a hip and end up unable to be taken care of at home. His resistance to using his walker diminished as he understood his own goals were at stake if he took unnecessary challenges.

During his final hours I used his desire to be surrounded by others to initiate a "party" the night before he died. Our closest friends and family were able to be present and say their goodbyes and share stories with all of us. Even though he was unable to communicate, we knew he was enjoying having us all surrounding him, laughing and remembering, telling him we loved him.

His desire to be pain free, even if it meant sedation was very helpful as I administered narcotics very frequently during his final hours. He had been very clear with me that he wanted as little pain as possible, even if it meant he would be unable to communicate. As a result I never feared the narcotic dose I was advised to administer, and I feel good knowing his wish was honored.

Finally, his desire to be excited until the end kept our entire family involved in keeping him motivated and engaged in our lives for as long as possible. He lost consciousness 24 hours before he died but until this time he was laughing, teasing, playing games and interacting with us, even if only for short times. Those final memories are special for all of us and I know he was making the most of every moment he could for as long as possible.

Completing a document with your wishes is important and can be helpful. However, the most important part of this process is talking to your family about exactly what the means. What is quality of life for you? How much pain are you willing to be in for the sake of being able to communicate? Who do you want to surround you as you die? Where do you want to die? These are discussions that all families should have with one another, and certainly questions that surrogate decision makers need to have the answers for!

Take time this holiday as you gather together to discuss together your wishes!