Journal of Palliative Medicine 2014.17:1282-1283. Downloaded from online.liebertpub.com by Uc Davis Libraries University of California Davis on 01/08/15. For personal use only.
JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 11, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0662
Bittersweet Waiting: Blessings and Burdens Debra Parker Oliver, PhD, MSW
A
year ago I published a paper regarding my personal experience as a caregiver for my terminally ill husband and the conflicts and challenges that I face as a researcher, wife, and caregiver.1 It was meant to challenge health care providers to remember that cancer is a family disease and there are two patients that need care in this journey, the patient and their caregiver. I now would like to share some new lessons I have learned while experiencing the reoccurrence of my husband’s cancer and his decision to forego additional treatment. These lessons relate to the bittersweet emotions of anticipating the end of our life together. I continue to be reminded that my education, experience, and status provide both benefits and burdens in this process. My realism toward the inevitable progression of this silent invisible disease weighs heavily on my heart as we move through each day trying to live, rather than waiting for death to arrive. Despite the difficulty in knowing that our time together is limited, we are determined to focus on living as the cancer moves forward. With each accomplished bucket list item (visits with family, travel to the Arctic Circle, and more) comes not only the joy of the experience but also the heaviness of knowing this may indeed be the last of such experience. Celebrating our 18th anniversary on a Mediterranean cruise, I found my emotions in conflict between the joy of the celebration and the realism that this will most likely be our last anniversary and the final overseas cruise. Likewise, the fun of the Christmas holiday celebrations, the putting up of the tree, planning of festivities, and joint decisions about presents and plans, are offset with the anticipation that next year, I will be alone. At times the pain of the experience makes the enjoyment of it quite difficult; bittersweet. In my professional role as a researcher I have compared the similarities of the birthing and dying processes.2 The anticipation and yet frustration waiting for the birth of a child, the angst of not knowing exactly which day the life changing event will occur, and the fear of parenthood and its new responsibilities can, at times, blur the joy and excitement of the event. Similarly, the waiting period preceding the expected death of the person you love, not knowing when that event will occur, and the fear of the new and lonely role of widow that follows, overshadow the joy of living fully to the end. Anticipatory grief can influence the excitement of these experiences and lead to depression and sadness, when at the
same time you want otherwise to cherish every sacred moment together. Both as a hospice social worker and as a researcher I have witnessed caregivers and their loved ones forego opportunities for living, and focus instead on dying. They withdraw from the emotional turmoil and become fearful and depressed. I have observed some who become so paralyzed they are unable to plan for, let alone invest in, carving out some meaningful time with their loved one. Others choose to rally together and fight for each fleeting moment, praying for miracles and life prolonging cures. Their waiting is filled with clinic and hospital visits, managing the side effects of the toxic chemicals being pumped into veins to keep the cancer at bay. The blessing of my years in hospice has led my husband and me to make a different choice; we choose not to fight the cancer, but instead fight the bitter fear and emotional pain that accompanies it. The goal is to experience the sweet parts of living and find relief from a preoccupation with the dying. As I enter these thoughts on paper tears are streaming down my cheeks; please do not get the impression that I hold all the answers. I am, however, developing a toolbox of ways to cope and mitigate the bitter emotional turmoil. Ironically, my first published paper was on the need to redefine hope for the terminally ill.3 In rereading that paper I am reminded of valuable opportunities in redefining experiences for caregivers who need and struggle to find hope, if only for a short period. First, I have learned that it is important to quit the ‘‘never again’’ thinking, and, the ‘‘we will never get to do that’’ notion. Instead, I recommend trying to replace those thoughts with ‘‘How can I manage to do it again?’’ For instance, going through the Strait of Messina in May 2012 I remember fighting back tears of sorrow as I was convinced that this would be the last time David and I sailed the Mediterranean. And then, unexpectedly, we were blessed to do it again in October 2013. This wakeup call showed me that we cannot predict when the ‘‘last time’’ to do something will be. Additionally, I began to refocus my thoughts on how I might do this same thing when my husband is gone. Who might want to go with me? How would it be different without him? How can I find ways to enjoy this special experience on my own? At first it was hard and sad; however, by the end of the trip I realized that each and every time I go through that Strait, David will be with me in spirit and I will feel his arms around
Curtis W. and Ann H. Department of Family and Community Medicine, University of Missouri, Columbia, Missouri.
1282
Journal of Palliative Medicine 2014.17:1282-1283. Downloaded from online.liebertpub.com by Uc Davis Libraries University of California Davis on 01/08/15. For personal use only.
PERSONAL REFLECTION
me. I will see him and hear his voice, recalling each time his amazement. I also remind myself that I have five children and five grandchildren who would love to go on the high seas. Each time I sail it with them we will relive those memories, and David will be alive with us again. It will not be the same, but I will go again and experience it in new ways. Second, I have learned that it is important to find ways to focus on the excitement of real-time experiences. Should the sorrow creep into the moment, I try to move it to a designated time and safe space. I tell myself, ‘‘STOP!’’ and redirect my thinking. Later, when I am alone in a quiet safe space, I allow the sadness to happen, let down the walls and feel the pain, and then pick myself up again and move on. It sounds so easy, but it is not. For example, when I look at our newest (sixmonth-old) grandson and I find myself feeling sad that David may not see another Christmas or see our oldest grandson and two youngest daughters get married, it can be easy to become overwhelmed in grief. It is then I must tell myself to STOP and turn it around, remembering how blessed we are that he was present when the little one was born, when our oldest grandson graduated from high school, and when our youngest daughter graduated from college. Only then does pain begin to go away to be replaced by smiles that emerge from incredible memories. Third, with David’s insistence, I have made myself think about my life after he is gone. I have not lived alone or made a major decision or faced a major life event by myself in 20 years. While thinking about that is scary, it can have an element of excitement if redefined. Where and what I eat, what I watch on TV, how I spend my evenings, where I live, and what decisions I make all have been influenced by being married and in a partnership. Before our marriage, I used to love pot roast, and I enjoyed my favorite car, a Mustang, not to mention romantic movies (that David calls ‘‘chick flicks’’). These things I placed on a shelf as our life together went forward, and now perhaps I may take them down again. As I identify new ways to live, and envision it, plan for it, and even dare to share these thoughts with a close friend, I face my fears and find a slice of new hope. Initially, I could not imagine how I would even get out of bed knowing he was not there beside me. However, now as sad as I know it will be, I do have small things I am able to look forward to. Finally, I’ve had to give myself permission to laugh. Living with David, who is always finding humor and making light of current circumstances, provides relief during these tense times. While some people may find it uncomfortable, humor is part of our family fabric and needs to continue. We laugh about throwing his ashes in the bushes rather than hiking two and a half miles up his favorite mountain, especially when I am so out of shape. We laugh about anticipatory grief, getting me ready for him to die and him hanging on long beyond the time I have adjusted to his dying. The kids
1283
tease about what sacred items they want from his ‘‘shrine’’ of belongings on the fireplace mantel. These light fun moments allow the venting of stress and provide a means to work our way through the sadness and loss. Although everyone does it, dying and grieving is intense and emotional, and what better way to lift the intensity than to joke about it, relieving that tension, if only for a minute. How will I laugh when he is gone? I honestly don’t know. I may need a joke book, but I must continue to do it. His humor has given my life joy and it will be a huge dishonor to him if I don’t continue to laugh at myself and with others! Again, I am hopeful that I can count on our children and grandchildren to continue that legacy! May the teasing and jokes continue to be heard each and every time we are together! May we laugh all the way up that mountain as we spread his ashes, exhausted, across the beautiful lake waters. Bittersweet waiting. I celebrate the time to prepare, time to accomplish a bucket list, time to make memories and experience many wonderful blessings. Yet this time between life and death is offset by the burden of realizing it will come to an end, that the end will be difficult and demanding, and the pain of anticipating the biggest loss of my life inevitable. How is it possible to survive? Only through redefining each pain, openly discussing each fear, and giving myself permission to be open, honest, and share all feelings. I have realized I must accept that I am not in control and remember that I am not alone. I must turn it over to a higher power, and practice an attitude of gratitude. Hope for me lies in knowing that I had the opportunity to live more in our nearly 20 years together than most spouses have accomplished in twice that time. The memories and the love I have experienced will get me through, I know it will. Bittersweet waiting. References
1. Parker Oliver D: When worlds collide: When research becomes reality. J Palliat Med 2013;16:208–210. 2. Zweig S, Parker Oliver D: Returning from the total institution to a home enironment: A journey for birthing and dying. J Housing Elderly 2009;23:116–128. 3. Parker Oliver D: Redefining hope for the terminally ill. Am J Hosp Palliat Care 2002;19:115–120.
Address correspondence to: Debra Parker Oliver, PhD, MSW Curtis W. and Ann H. Department of Family and Community Medicine University of Missouri Medical Annex 306G Columbia, MO 65212 E-mail: [email protected]
JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 11, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0662
Bittersweet Waiting: Blessings and Burdens Debra Parker Oliver, PhD, MSW
A
year ago I published a paper regarding my personal experience as a caregiver for my terminally ill husband and the conflicts and challenges that I face as a researcher, wife, and caregiver.1 It was meant to challenge health care providers to remember that cancer is a family disease and there are two patients that need care in this journey, the patient and their caregiver. I now would like to share some new lessons I have learned while experiencing the reoccurrence of my husband’s cancer and his decision to forego additional treatment. These lessons relate to the bittersweet emotions of anticipating the end of our life together. I continue to be reminded that my education, experience, and status provide both benefits and burdens in this process. My realism toward the inevitable progression of this silent invisible disease weighs heavily on my heart as we move through each day trying to live, rather than waiting for death to arrive. Despite the difficulty in knowing that our time together is limited, we are determined to focus on living as the cancer moves forward. With each accomplished bucket list item (visits with family, travel to the Arctic Circle, and more) comes not only the joy of the experience but also the heaviness of knowing this may indeed be the last of such experience. Celebrating our 18th anniversary on a Mediterranean cruise, I found my emotions in conflict between the joy of the celebration and the realism that this will most likely be our last anniversary and the final overseas cruise. Likewise, the fun of the Christmas holiday celebrations, the putting up of the tree, planning of festivities, and joint decisions about presents and plans, are offset with the anticipation that next year, I will be alone. At times the pain of the experience makes the enjoyment of it quite difficult; bittersweet. In my professional role as a researcher I have compared the similarities of the birthing and dying processes.2 The anticipation and yet frustration waiting for the birth of a child, the angst of not knowing exactly which day the life changing event will occur, and the fear of parenthood and its new responsibilities can, at times, blur the joy and excitement of the event. Similarly, the waiting period preceding the expected death of the person you love, not knowing when that event will occur, and the fear of the new and lonely role of widow that follows, overshadow the joy of living fully to the end. Anticipatory grief can influence the excitement of these experiences and lead to depression and sadness, when at the
same time you want otherwise to cherish every sacred moment together. Both as a hospice social worker and as a researcher I have witnessed caregivers and their loved ones forego opportunities for living, and focus instead on dying. They withdraw from the emotional turmoil and become fearful and depressed. I have observed some who become so paralyzed they are unable to plan for, let alone invest in, carving out some meaningful time with their loved one. Others choose to rally together and fight for each fleeting moment, praying for miracles and life prolonging cures. Their waiting is filled with clinic and hospital visits, managing the side effects of the toxic chemicals being pumped into veins to keep the cancer at bay. The blessing of my years in hospice has led my husband and me to make a different choice; we choose not to fight the cancer, but instead fight the bitter fear and emotional pain that accompanies it. The goal is to experience the sweet parts of living and find relief from a preoccupation with the dying. As I enter these thoughts on paper tears are streaming down my cheeks; please do not get the impression that I hold all the answers. I am, however, developing a toolbox of ways to cope and mitigate the bitter emotional turmoil. Ironically, my first published paper was on the need to redefine hope for the terminally ill.3 In rereading that paper I am reminded of valuable opportunities in redefining experiences for caregivers who need and struggle to find hope, if only for a short period. First, I have learned that it is important to quit the ‘‘never again’’ thinking, and, the ‘‘we will never get to do that’’ notion. Instead, I recommend trying to replace those thoughts with ‘‘How can I manage to do it again?’’ For instance, going through the Strait of Messina in May 2012 I remember fighting back tears of sorrow as I was convinced that this would be the last time David and I sailed the Mediterranean. And then, unexpectedly, we were blessed to do it again in October 2013. This wakeup call showed me that we cannot predict when the ‘‘last time’’ to do something will be. Additionally, I began to refocus my thoughts on how I might do this same thing when my husband is gone. Who might want to go with me? How would it be different without him? How can I find ways to enjoy this special experience on my own? At first it was hard and sad; however, by the end of the trip I realized that each and every time I go through that Strait, David will be with me in spirit and I will feel his arms around
Curtis W. and Ann H. Department of Family and Community Medicine, University of Missouri, Columbia, Missouri.
1282
Journal of Palliative Medicine 2014.17:1282-1283. Downloaded from online.liebertpub.com by Uc Davis Libraries University of California Davis on 01/08/15. For personal use only.
PERSONAL REFLECTION
me. I will see him and hear his voice, recalling each time his amazement. I also remind myself that I have five children and five grandchildren who would love to go on the high seas. Each time I sail it with them we will relive those memories, and David will be alive with us again. It will not be the same, but I will go again and experience it in new ways. Second, I have learned that it is important to find ways to focus on the excitement of real-time experiences. Should the sorrow creep into the moment, I try to move it to a designated time and safe space. I tell myself, ‘‘STOP!’’ and redirect my thinking. Later, when I am alone in a quiet safe space, I allow the sadness to happen, let down the walls and feel the pain, and then pick myself up again and move on. It sounds so easy, but it is not. For example, when I look at our newest (sixmonth-old) grandson and I find myself feeling sad that David may not see another Christmas or see our oldest grandson and two youngest daughters get married, it can be easy to become overwhelmed in grief. It is then I must tell myself to STOP and turn it around, remembering how blessed we are that he was present when the little one was born, when our oldest grandson graduated from high school, and when our youngest daughter graduated from college. Only then does pain begin to go away to be replaced by smiles that emerge from incredible memories. Third, with David’s insistence, I have made myself think about my life after he is gone. I have not lived alone or made a major decision or faced a major life event by myself in 20 years. While thinking about that is scary, it can have an element of excitement if redefined. Where and what I eat, what I watch on TV, how I spend my evenings, where I live, and what decisions I make all have been influenced by being married and in a partnership. Before our marriage, I used to love pot roast, and I enjoyed my favorite car, a Mustang, not to mention romantic movies (that David calls ‘‘chick flicks’’). These things I placed on a shelf as our life together went forward, and now perhaps I may take them down again. As I identify new ways to live, and envision it, plan for it, and even dare to share these thoughts with a close friend, I face my fears and find a slice of new hope. Initially, I could not imagine how I would even get out of bed knowing he was not there beside me. However, now as sad as I know it will be, I do have small things I am able to look forward to. Finally, I’ve had to give myself permission to laugh. Living with David, who is always finding humor and making light of current circumstances, provides relief during these tense times. While some people may find it uncomfortable, humor is part of our family fabric and needs to continue. We laugh about throwing his ashes in the bushes rather than hiking two and a half miles up his favorite mountain, especially when I am so out of shape. We laugh about anticipatory grief, getting me ready for him to die and him hanging on long beyond the time I have adjusted to his dying. The kids
1283
tease about what sacred items they want from his ‘‘shrine’’ of belongings on the fireplace mantel. These light fun moments allow the venting of stress and provide a means to work our way through the sadness and loss. Although everyone does it, dying and grieving is intense and emotional, and what better way to lift the intensity than to joke about it, relieving that tension, if only for a minute. How will I laugh when he is gone? I honestly don’t know. I may need a joke book, but I must continue to do it. His humor has given my life joy and it will be a huge dishonor to him if I don’t continue to laugh at myself and with others! Again, I am hopeful that I can count on our children and grandchildren to continue that legacy! May the teasing and jokes continue to be heard each and every time we are together! May we laugh all the way up that mountain as we spread his ashes, exhausted, across the beautiful lake waters. Bittersweet waiting. I celebrate the time to prepare, time to accomplish a bucket list, time to make memories and experience many wonderful blessings. Yet this time between life and death is offset by the burden of realizing it will come to an end, that the end will be difficult and demanding, and the pain of anticipating the biggest loss of my life inevitable. How is it possible to survive? Only through redefining each pain, openly discussing each fear, and giving myself permission to be open, honest, and share all feelings. I have realized I must accept that I am not in control and remember that I am not alone. I must turn it over to a higher power, and practice an attitude of gratitude. Hope for me lies in knowing that I had the opportunity to live more in our nearly 20 years together than most spouses have accomplished in twice that time. The memories and the love I have experienced will get me through, I know it will. Bittersweet waiting. References
1. Parker Oliver D: When worlds collide: When research becomes reality. J Palliat Med 2013;16:208–210. 2. Zweig S, Parker Oliver D: Returning from the total institution to a home enironment: A journey for birthing and dying. J Housing Elderly 2009;23:116–128. 3. Parker Oliver D: Redefining hope for the terminally ill. Am J Hosp Palliat Care 2002;19:115–120.
Address correspondence to: Debra Parker Oliver, PhD, MSW Curtis W. and Ann H. Department of Family and Community Medicine University of Missouri Medical Annex 306G Columbia, MO 65212 E-mail: [email protected]
