Personal Stories –
As human beings we learn and teach through stories. You are invited to share your personal story about looking ahead or looking back in relationship to end-of-life. You never know who may be helped as they navigate their own journey by hearing about yours.
You are invited to send your story and photos to me at joanna@Sustainable-Aging.com. You may ask me to simply witness your story myself or let me know that you are willing to share it on this web page. Please be sure to have the permission of those in your story to tell it and/or have changed names to protect anonymity. Thank you for your generosity.
by Hilary Cooke
Somewhere I came across the observation, “You are what you were when.” The idea is that people come from a certain place and time. It shapes ones values and, to some extent, orders ones actions.
We also know that in conversation what people say and what people hear can be two very different things. Expressions of love, forgiveness and remorse can be misinterpreted because the past defines our present.
So it was with my Dad; he from Brooklyn and the Great Depression and I from the suburbs and comfort. It was in this context of parallel lives and with his failing health that it was time to have The Conversation.
He got it started. “Son, I love you.” What an ice breaker! With his wisdom The Conversation took off. We talked about his life, career and family, his values and where his life was headed. There was no surprise that his vision for dying was framed entirely by his strong sense of faith.
The Conversation is the gift of clarity. Getting it started is the hard part. I am eternally grateful that Dad got it going. We found out that our lives were not so different and that we truly loved each other. I had never felt so close to him.
My Mother’s Gift to Us
On August 1st, my kids and I were packing to visit my mother – their grandmother – for a long awaited week at the beach in Eastern Long Island. Just before we left, we received a call that Mom had taken ill and we ought to wait to see when we should come down from Vermont. Mom died on August 15th.
What happened between August 1st and August 15th was an example of trust, faith and love. It has inspired me to pursue, on a professional basis, the clarity that advance care planning provides for the patient, physicians and medical staff and a loving family.
Mom had completed a meticulous advance directive that provided all of us with a clear guide to her end-of-life wishes. She also confirmed in conversations with all of her children that she had completed an advance directive and that it reflected her wishes and choices.
What a gift it was to have this clarity! Her wishes and choices were carried out without confusion or equivocation…and that is what matters most.
Mom, you had a remarkable life that was filled with love and offered great joy. Your choices and wishes at the end of you life were a continuation of you deep sense of faith and integrity. We miss you every day.
by Lisa M. Holabird, R.N.
I was very fortunate to have assisted John on his journey home. I was working at an assisted living facility where John had lived for 3 years. Well into his 90’s when we met, he was full of pep and vigor. He was an artist, enjoyed classical music, reading, and spending time on his computer. John termed himself a” curmudgeon”. He had an ornery spirit and thrived on stimulating conversation as well as controversy. The later was upsetting at times to those he lived with. None the less, John was “one of the family”.
As time went along, John’s medical condition began to change. He was often short of breath despite using oxygen. He had a cough that just wouldn’t go away, fatigued easily and he “just didn’t feel like himself”. With some prompting, his doctor ordered a chest x-ray and some basic lab work to follow up on his symptoms. The results of these tests revealed that John’s lungs were filling up with fluid, and his kidneys were failing. When I spoke with John’s doctor about these findings, he indicated, ”there was nothing more he could do, John was dying”.
John had “a sense” that he was not well and he wanted to discuss the test results, his options, and end-of-life care, if this was his time. Knowing this, and John as I did, I asked the doctor to have a conversation with John and his daughter to discuss the recent changes and John’s fate. We owed this to him. Within a few days we were sitting with the doctor at his office, and to my amazement we had a beautiful conversation about death and dying, given the struggle the doctor had with how much to say. He learned that John wanted to honestly hear, from him, what might lie ahead was so that he could have some control in planning for his end of life choices and care. John appreciated the information and soon after decided that he would stop taking his daily medications, with the exception of pain medication. Shortly after this time, he decided that he would stop eating and drinking.
John and the care director had a conversation about how he would like to leave the facility once he died and if he had any special wishes. In long-term care we often hid death from others so close to their own time . Did he want the other resident’s to know when he died? Did he want the residents to gather? Did he want any music to be played? John was clear in stating that he “wanted it all”.
During his remaining time, John and his daughter discussed past hurts, laughed and cried together, played board games and shared memories. John became more alive in ways that I had not seen before. He openly invited residents in to visit him – to share memories and say farewell.
On the day John died, his body was moved to the front living room, with his face showing, fresh daffodils on the coverlet. The residents had gathered as he’d requested, and his song was played on the piano by a fellow resident. As John’s body left the building, friends yelled out “So long John. We will miss you.” There was something very real, peaceful, and personal, that happened to all of us.
She said, “I’m ready to go and no one is listening to me!”
by Martha Johnson
I was lying in a bed in the rehab hospital in Ludlow, Massachusetts, having fractured my shoulder in a fall, several days before. My “roommate” was an older woman, probably 85, a retired nurse, hospitalized for a condition about which I did not inquire.
Each day, the nurse would encourage her to eat, with little success. And each day the physical therapist would come by to encourage her to come to her session, with little success. Each day, members of her family would come by to visit, chit chat, and presumably encourage.
As I watched this scenario, I strongly felt some things were not being said. One day, when my roommate and I were alone, I felt called to launch, tentatively and gently, into unknown and uncomfortable territory for me. “Gloria,” I broached, “it seems to me as if you have had enough. Are you wanting to let go?” There was a huge sigh. . “Yes,” she said, “I’m ready to go. And no one is listening to me!”
Here was a conversation needing to be had, with doctors, and with family. Ironically, what was blaring from the TV, at the top of the news on a daily basis during those very days, were the contorted criticisms of Obama’s new health care plan which was proposing coverage for doctors who spent time talking about end-of-life planning. What I had just experienced as a vital medical conversation, was being labeled a “death panel.”
I took it upon myself, again with trepidation, to speak individually to the husband, the son, and the doctor to report on my efforts, hoping it would encourage them to open the conversation themselves. All were appreciative of the information. I do not know what they did with it. Nevertheless, the health care protocols of “fix, no matter what” prevailed; my “roommate” was shortly transferred to the hospital for more tests, and presumably more treatments.
Two months later, I saw Gloria’s husband at the senior center and asked after her. He said she had gotten her wish and had passed on. I didn’t ask what she had to go through before her wish had been granted.
This incident occurred in August of 2009. I am 5 years older now, 74, single, with no children, and starting to think about my own end-of-life planning process. As I reflect on this unforgettable moment in my life, my question is: How can I create the plans and directives, and achieve concurrence from the right people, that will make peace possible at the end of my days?
I WILL NOT spend the last days and hours of my life, having to gather and spend my diminishing energies to fight with my family, my health providers, nor the system/culture, for the quality of life I want and deserve!! Nor do I want them fighting with each other about my care if I am not capable of speaking for myself. PERIOD. FULL STOP.
My Father’s Passing
(permission given to share this letter anonymously )
I truly thank you all for the well-wishes after my Dad’s passing. Your thoughts and prayers have meant a lot to me. After hearing from some of you, I felt compelled to write a few thoughts I’ve had about Dad and the end of his life.
I’m finding myself strangely affected by his death. I didn’t expect to be this upset by his passing. Some very wise people said that would probably be the case even though he could be a very difficult man to deal with, especially within the last year or two of his life. I admit it…spending time with him was not something I looked forward to. But I did it because he was my dad. Now, I’m glad I did. I don’t have any regrets.
Looking back, for all those times he was a serious pain-in-the-ass (and there were LOTS of them), there were just as many times when he was incredibly loving, appreciative and thankful for what we (i.e. me, J,and V ) did for him, particularly in the last couple years. We never, ever doubted his love for us. He wasn’t shy in telling people what great kids he had…or that he loved us…or that he was proud of us. I don’t know many kids who can say that about their Dad.
I want to make sure that people understand that Dad’s decision to end his life was not irrational, spontaneous, or impulsive. This was a planned, calculated, deliberate event that he had in the works for a long time. It wasn’t because he was depressed. It wasn’t because he was “mentally ill”. He was just sick and tired of being sick and tired. Walking 20 feet to get to the bathroom without being exhausted was a major struggle. He was almost 85 and he could see what the rest of his life was going to be like. His mind was still as sharp as ever (…just ask him, he’d tell ya!), but physically, he was struggling. His body was failing. Believe me, it wasn’t for lack of trying to find out why. We had seen specialists for every organ in the body (and I mean EVERY organ!), but the doctors couldn’t find what was wrong with him. He knew there was something wrong, but when all the research and doctors visits couldn’t find out what was going on, he decided that was enough.
Given his failing health, long ago, he decided that he wanted to be in charge of when, where and how his life would end. He made it very clear that there was no way he was going into, as he called it, an “institution”. So he planned and plotted…and implemented. Yes, his plan had some flaws and didn’t go exactly as he wanted. He suffered before he went into hospice. No one should have to go through what he went through. I don’t wish that on anyone. But the bottom line is that he did it, and he did it his way on his terms. To me, only someone with tremendous courage would even think about, and could actually execute, a plan like he did on his own. And for that, I have nothing but the utmost respect for him. I’m proud of him.
Maybe someday we’ll live in a country where normal, clear-thinking adults can dictate the terms of their own death. J. said hundreds of times that, when it comes to the end of life, we treat pets far better than we treat humans. Maybe someday that will change.
Since we’re not going to have a service for Dad (he didn’t want one), if you want to honor him in some way, I would really appreciate it if you could contribute to www.finalexitnetwork.org
Love to you all!
Reflections On “The 5 Wishes”
5 months after completion
by Dianne Suller
It seemed overwhelming—copies of the document—an article from the NY Times about different case scenarios and a sample of some one’s document from another aging group.
I just decided to start some where and know it wasn’t going to be perfect. I would type it out and sculpt it down to fit me. There were good ideas I wanted and much that seemed way too complicated.
Part of me dug my heels in and just wanted to get an ice cream cone…(it was August) I had been in John’s “aging group” till it ended in April and continued it with a small group of women meeting at my house over the summer. One woman said she wanted support getting started on hers. She was so sidetracked I was motivated to do mine—in some ways to help her. So I plunged in and learned a lot. Giving my health care agent power to carry out my wishes made me feel powerful, intelligent, and responsible.
Although I know I love my children—it showed me how important they are to my life and how deeply I need to be clear as possible and reduce confusion for them after I’m gone. The daughter that I have named as my health care proxy a long time ago—became the 1st person to be my agent. I was now spelling out the details and in discussion from the group realized that all this might be too much for her. She knows me better than any one but might be too emotional to make decisions about with holding treatment etc. I had a wonderful drawing closer to my sister who is a nurse and we decided to be the agents for each other. She has also had hospice training—and is in a very unusual situation with a man she is dating. I loved being able to share this document with her and motivate her to work on her own. I see myself in the role as helper to others as I do what is best for me. So my sister is 1st, my beloved daughter, 2nd and my dear friend who knows me so well 3rd in the line up—but I hope( if they are all able) to work together at the time of my passing—they can support each other. Completing this document has enriched my relationship with all of them.
Medical treatment I want or don’t want was a bit spooky for me. It was becoming more real what inevitable death could look/feel/taste like. Two physicians would have to agree that I am close to death and not expected to recover. Life support, in what situations did I not want it. Hard to spell out. I might have pushed through this part but I did it for now. I can change this.
Wish 3 & Wish 4
Comfort and How I wish to be treated were much nicer to think about and write down.
What was the best was the last one,
What I want my loved ones to know!
Asking that all my family and loved ones make peace with each other before my death, if they can—was a wonderful thing to request. A great reason for my life—in being here. And asking for that at a time like this—seems to give it much more meaning….I know I would try harder if some one I loved asked this of me on their “death bed”
I also loved the opportunity to ask forgiveness and offer it.
I’ve agonized about leaving my animals with care instructions but even simplified that in saying I’d like them to be cared for the way I would. I may not have animals when I die—but I had to keep remembering this is not carved in a tombstone—it’s a work in progress.
It was nice to briefly state what I’d like to be remembered by but it is up to my children if they want a memorial service or what to do w/my ashes. They are the ones left to deal—I know I won’t care after death. I’ve donated my body for medical research—no costs for my children. But if they refuse my body for some reason, then I’d like to be cremated. I’ve named a place that does it reasonably. I have my life insurance divided equally between them after any expenses related to my death. All these documents are in my files in a big green plastic envelope—easy to see—and I’ve showed it to all of them.
The most beautiful experience of this whole process was sitting down with my daughter while she read the document. I held her and cried when she cried. I answered questions and went into detail when necessary. She was able to express her grief in a way I could comfort while I am still physically here. When we were done – it was quiet a long time, she got up and said—well, I’m glad I finally did that, maybe I won’t have to cry all those tears when you actually do die. She felt lighter and closer to me than ever before. She had the document in e-mail for 2 mos, agreed to be the agent…but just couldn’t bring herself to even open it until I could sit next to her and read along. Very deep sharing conversations—this daughter is a very special being….born in my bedroom and the most defining moment of my life. I could intently focus on my love for her that I transcended the pain of labor and channeled the most amazing life force through my body—she came out cooing like a dove…and chirping like a dolphin.
With an entrance like that, who can be afraid of death if she is with me?