Denial

I think one thing we seem to do in the United States is deny that we or our loved ones are aging. We feel young at heart and do everything we can to look, act and feel young. So if a loved one looks ill I might try to focus on the positive and act like they look ok or that things will be better soon. Also most people don’t get a clear prognosis even from doctors because some people do bounce back and live longer than expected. So that time to accept that someone is dying and provide some support is in the frantic last few days of life, when things are chaotic. We don’t want it to be the time to say goodbye so we act like it isn’t the time. Most people are only in hospice a few short days before they die. We are in fighting mode up until the very end many times.

Mary

Joan comments:  Thank you for raising this very important topic, Mary.  Our denial of this reality stems from love – we don’t want even to imagine that our loved one will die.  We suffer from “magical thinking” – we think by not mentioning the word “death” we somehow keep it from entering the sickroom.  So everyone dances around the topic, the doctors, family, and friends. If the sick person can’t talk about what they see coming towards them, they are tragically lonely.  Moreover, they can’t do the important end-of-life work that can be done if death comes slowly rather than suddenly. If this is the case for your loved one, and you want to change things, consider enlisting the help of someone trained in opening and facilitating these difficult conversations.  A palliative care chaplain might be the best place to start.

Gifts of Life from Death

My nephew Jason was seriously injured in a skiing accident a number of years ago, which resulted in chronic pain and numerous back surgeries. He was prescribed pain medication, which, as we now know, has precipitated a national health care crisis. Still, we thought he could handle it and wean himself from the pills. One night the dreaded phone call came from my brother-in-law that Jason had overdosed and was rushed to the hospital. I immediately got on a plane and, when we arrived at the hospital, we found him on life support--his tall lean body still intact; his brain, dead.

As we stood around his bed trying to take it all in, we learned two things. First, that it was too late and there was nothing the doctors could do, and, second, that Jason was a registered organ donor. It was therefore critical that he continue to receive life support to keep his organs alive and healthy until those awaiting transplants could be contacted.

So, the hospital became our home. An interdisciplinary team of specialists was flown in, some to take over and coordinate medical procedures and some, as it turned out, to support the family. These support staff let us know they were available 24 hours a day for any question or need we had. They mediated between the nurses and us and communicated information and updates on procedures. They sat with us, offered refreshments, provided resources and prepared us for what was to come. Additionally, at our request, they arranged for an off-duty chaplain to meet with us in Jason’s room. We were given free rein to visit Jason in his tiny room--even if medical staff had to be cleared out--as well as access to a private room for when we wanted to be alone.

Then, after three days of waiting, it was time. We accepted locks of Jason’s hair, inked handprints and the fleece blankets that had covered him. Though surgeons were standing by, we were given ample time to be with Jason for the last time and allowed to follow as they wheeled him to the OR. As a family we had prepared a page-long description of Jason, describing as best we could his interests, values, talents, wittiness and aspirations. We were told that this tribute was read aloud in the OR to the doctors and nurses, who together observed a moment of silence before beginning surgery.

Perhaps there is something about sorrow that sensitizes us to compassion and acts of kindness. When I reflect on my nephew’s unexpected death and the heartbreak that we experienced, I think also of the competent, sensitive and caring individuals who recognized and honored his life and brought dignity to his death.

We were notified some days later that the transplants had been successful, that Jason’s organs had, in fact, given others another chance at life.

Susan

Joan comments: Nothing makes up for the death of a beloved, but how wonderful that out of this terrible time a number of other lives were greatly improved. And what a fine transplant team to take the time to offer his generous donation the respect it deserved. Thank you for sharing this lovely story, Susan. May it serve to inspire others to become registered organ donors and by so doing, imitate Jason. In most places it is easy to become a registered organ donor – in my state they just put a notice on my driver’s license. I have seen how lives can be transformed by the gift of another’s organs, and as a registered organ donor I hope when I die parts of my body will be of service to others. Dear Reader, are you a registered organ donor? Sign up today!

Reduced to a Dollar Sign

The fatal illness and death of my husband is one of the most difficult times in my life and I would not wish his experience on my worst enemy. He had not been feeling normal for few months, started seeing an internist and all the tests came back normal. Couple months went by and he came inside the house saying he just felt funny not himself. I thought he might be having a stroke so we take him to local hospital where he is immediately put into an exam room being placed on bed. He immediately has a grand mal seizure, never having one before. X-rays are doing done, bloodwork and CT scan. ER doctor informs us, his family, he had at least 3 brain tumors and what hospital did we want to be transferred to. I told him the one his internist was affiliated with. He called that hospital and that internist happened to be there. By time we arrived at that hospital’s ER, his internist had a neurologist, radiation oncologist, chemo oncologist ready to examine him. He had stage 4 non-small-cell cancer that had spread through his body. He opted to do chemo and radiation. He was given at the most 3 months. We just been told this awful news and his family inquires about his will, life insurance and their inheritance. Not only are both of us trying to process his diagnosis but now this!!! Our marriage was the second for each of us. Not a day went by that someone didn’t mention him getting his affairs in order. The last 3 months of his life were miserable. He told me he had been reduced to a dollar sign. My heart was breaking for him and myself. I knew more hell would come after his death for me but he would be out of it. Hospice was called in the day before he died. I wish someone had prepared me for the dying process. My husband literally hemorrhages to death. He would sit up in the bed vomiting blood everywhere and lay back down. We clean him then he would do it again raising his arms reaching for something or someone with a look of horror on his face, which will never leave my mind. That last day and half he didn’t want anyone touching him. Can you explain that to me? This man had never verbally said “I love you” to me until a few hours before he died. His actions spoke for him. And I was right, things worsened for me immediately. Most of his family didn’t even acknowledge I had suffered a great loss - my husband, lover, protector, best friend and my rock!! Could write so much more but it wouldn’t change anything. Going through that traumatic experience broke me and I will never be the same. All this happened over ten years ago and I love and miss him just as much as the day he left this earth.

Anonymous

Joan comments: It is hard to even begin to imagine how dreadful this must have been for your husband and for you. Anyone who reads your story must be filled with compassion for what you both experienced. Is there a grief support group in your area? Or a caring therapist you can locate? The hospice which was called in the day before he died might be able to help you identify appropriate resources. Or, your internist could help you find the right group and/or person. Talking with another or others about your trauma might help you better metabolize what you went through. Sometimes, over time, suffering can prove to be a source of deep inner wisdom and strength if you are able to access the right assistance. Please consider seeing what help you can find.

Clouds and Rainbows

I was on a plane when he died.

I remember sitting in a window seat, looking at the clouds through the window and thinking that something was different. In the distance I saw a long row of clouds. It reminded me of an aisle runner at a wedding. I almost expected to see someone walking on it. And, as the plane was landing, at every point of light, I saw rainbows.

My mother’s father was my champion. He taught me. He connected me. He understood me. He loved me, and I knew it.

When I looked up and saw that my cousin was my transport from the airport, I knew my champion was gone, and the feeling that flooded my soul most was guilt. I still feel like I let him down, because I didn’t get to see him, or sing to him, or kiss his forehead before he left.

I was on a plane when my grandfather died. So, he visits me in the rainbows.

Angela

Joan comments: So often when someone we love dies we feel guilty - we think we have not done enough to show them our love.  But if he visits you in the rainbows, Angela, clearly he knows how much you loved him.  That truly is enough.  Thank you for sharing.

Letting Go

My father was in a coma for three days before he died, and he had been unwell for many years before that. A coma is a strange place of limbo, where one is still alive, but unable to respond. We knew that he didn’t have long to live, so we were in a suspended state of keeping a vigil around the clock at his bedside.

What I hadn’t reckoned on was that my immediate family wouldn’t be the only ones who wanted to say goodbye to him. This was an unexpected challenge, as I found that I wanted the experience to go a certain way. In fact my first response was to protect him from being “disturbed”, as he had been sick for such a long time that this had become kind of second nature. As the visitors started to pour into his hospital room, I quickly realized a couple of things. First, everyone says goodbye in his or her own way. One of our closest family friends was unable to go into the room to see my father, as she didn’t think she could bear to see him that way. Instead, she brought gorgeous homemade food for my mother and me as we sat vigil, her offerings carried in a handmade basket with linen napkins and fresh flowers. Another friend came and sat holding his hand for an hour or more. No spoken words, just calm comfort and a gentle loving touch. Others came and perched awkwardly, as it can be so hard to find something to say at such a time.

The other big revelation was that it wasn’t up to me to try to control how people said goodbye or whether or not they should be allowed to parade through. After all, I wasn’t the only one who loved him and I wasn’t the only one who wanted to say goodbye. He had many, many, many relationships separate from me, and I realized that each person had a right to bid him farewell. Initially I bristled when one family came and sang for him for quite a long time, as it seemed that they had kind of co-opted his dying. But I soon understood that this was something that they wanted and needed to do. They had “sung out” other loved ones and this was the way that they felt best about helping someone to cross over. Others came and said Christian prayers. This alarmed me at first, as my father was not a practicing Christian. Again, I realized that this was what they needed to do and it was not up to me to interfere.

Dying is about letting go on so many levels-- releasing the one we love, as well as letting go of the sense that we can control any of it.

Anonymous

Joan comments: Huge learnings, Anonymous. Letting go of the father you dearly loved, letting go of controlling how others behave, letting go of keeping them away while your father was dying. Clearly this was enormously challenging for you, and understandably so. It does seem that a person’s wife and daughter should be “in charge” while that person is dying, keeping non-family members in line, so to speak. Your story speaks not only of your own growth and strength but also of the urgent need others have to say “Farewell” in the way that works for them. My guess is if you had tried to stop them, there probably would have been a ruckus in your father’s hospital room and hard feelings between them and you for a long time after. As it happened, you let others come and do their thing and then leave, thus maintaining the basic peace in your father’s room. A wise and compassionate choice on your part for all concerned, and a useful lesson for us all. Thanks for sharing.

The Doorbell

One year my neighbor down the street got cancer. For a while he stayed at home, on chemo, and got sicker and sicker. I brought him a meal every day, and stayed to talk with him when I dropped off the food. Over several months we got quite close. He didn’t have any kids, and his wife of many years had died, so he liked my company. Finally he went to a local nursing home, and I went there several times a week to be beaten by him at checkers. (He was an incredible player, and whomped me no matter how hard I tried.) After we played he usually talked some more. One day he told me some extremely personal things about his life. The next day when I went back, he was in a coma. I held his hand for a while and left. That night, at 4 in the morning, the doorbell of the house where I was living rang so loudly that I jumped out of bed. But then I remembered — the house where I was living didn’t have a doorbell, people just knocked. So I knew I had only heard the doorbell in a dream. I wondered, was the doorbell a message from my friend? I went back to sleep, and when I woke up the next morning I called the nursing home. When I asked how he was, the nurse said, “I’m sorry, he died last night.” When I asked when it was that he had died, she said, “Four this morning.” Somehow he had rung a doorbell that didn’t exist!

Mary P.

Joan comments: People often seem to get messages from someone they know well when they die. This certainly sounds like such a case. One interesting thing is it sounds like your friend did what is called a “life review” the day before he went into his final coma. People frequently need to tell someone their secrets when death is near. Thanks for sharing.

How I Hid While My Grandmother Died

Watching my Grandmother lose her battle to cancer made me feel helpless. We knew her passing was near, and while many of my family members sat with her, held her hand, talked to her, said their tearful good byes - I busied myself.

I created posters for her memorial, I organized photographs, I did anything I could at the hospice home to distract myself from what was happening. It was hard to reconcile what I was seeing - a woman who was once feisty, independent, full of humor and wouldn't stand for any BS - fighting hard at the end of her life, and losing. I flew thousands of miles to be with her, and I waited in the next room as she passed. I let my fear dictate the experience.

Reading Joan's book gave me a sense of peace and comfort about that day, something I had pushed out of my mind for a decade. It was cathartic to remember and work through those emotions, the fear and sadness of losing her. Of watching my mom lose her mother.

I don't know if I will ever ready to be with someone at their life's end, but when it happens again I will be less fearful. I will avoid less and experience more.

Lindsey P.

Joan comments: Every human being simply has to relate to your story, Lindsey. When someone we love is dying it is dreadful to come face-to-face with that terrible reality. Don’t dump on yourself for having such a human reaction. In the future (because you will almost certainly face this situation again, perhaps many times), I hope you will have the inner strength to quietly go into the room with your dying loved one, take a seat, perhaps hold their hand, and simply BE. The gift of your loving presence is invaluable. Thank you for your honesty and sharing.

A Gift of Serenity

Recently a Canadian friend shared the experience of her husband's passing.

Faced with incurable illness and near total dependency, and after consulting two physicians, he decided to exercise his option to choose the date of his death. His firm intention and courage proved to be a loving, generous gift to his wife who was able to comfort and embrace him to the end. The serenity with which she told her story struck me as being in sharp contrast to the anger and anxiety that beset her a year ago as her efforts to look after him collided with his frustration and denial. Ultimately, they were able to face the truth together, and that made all the difference.

Anne

Joan comments: Anne, as you know, your story touches on a very difficult subject: people’s decisions about whether or not to end their lives in the face of incurable suffering.  This topic has been raised by audience members in question-and-answer sessions after nearly every public talk I have offered. 

An individual’s decision is surrounded by religious, social, and sometimes legal rulings.  Although we hear many compelling arguments on both sides of the issue, we rarely hear reports a year later from family members of how they feel after the sick person has chosen to die.  Thank you for sharing this report. 

If any other members of the Soul Support Community (you’re a member if you’re reading this post) would like to share their feelings if they have had a similar experience, we would be most interested to hear from you.

When, if ever, and how might I, an untrained layperson, raise the question of death with someone with a potentially fatal illness who does not initially raise the question with me?

Thank you for offering this unique and desperately needed space! There is a need for places in which we can freely discuss issues that seem to be so generally unwelcome, even among friends and family. I'm just off a wonderful conference call (this past Tuesday) with Compassion and Choices staff about tools that are available to those seeking to have some control over their own dying process and been thinking, once again, about raising these issues with others. I would welcome your guidance. One specific question is when and how (if ever) to raise the issue of death with someone with serious, potentially fatal, cancer who does not initially raise the issue with me. In a recent conversation with someone close to me who is undergoing various treatments -- someone who has been understandably wary about the treatments and their escalating intensity -- I've offered to discuss the option of refusing treatment. I've explained only (in response to the question that followed) that I personally am not out to live as long as I can and that I am open to refusing treatment when the time comes. My offer has been received with genuine gratitude and the discussion will be had (if necessary) when and if the time comes. In this instance, and others, I would like to be as useful and compassionate as possible. I recently found myself on the phone supporting someone I didn't really know, who sat (feeling hopeless and at sea) at the bedside of a dying close friend in San Francisco. I could have used some guidance in how best to help that generous soul. Lacking your experience and training, and aware that most people seem to fear death and don't even like talking about it, I'm wary about venturing into this area unless I'm specifically invited to do so. Most people close to me know that I'm a believer in the right to die, but very few of my relatives and friends invite frank, open, fearless, and useful discussion about death. Are you comfortable offering guidelines to an untrained layperson, like me, about when and how one might engage people? Or whether there are resources and people I might send someone who would like to talk but (correctly) sees me as a novice? And whether you can offer some guidelines to people who are seeking to support those who are sitting with the dying? I read your extraordinary book some months ago. It is by far the best resource I've yet seen and extremely helpful, but I am wondering whether someone who lacks your sophistication and experience can be useful - and, if so, how. Thank you for offering this amazing space and for wrestling with my questions.

EP

Joan comments: EP, Thanks for this posting. Your concern for others’ well-being is obvious and praiseworthy. I’m not quite clear as to whether you are asking about discussing death – which comes to us all – or about discussing ways gravely ill people could hasten or cause their deaths. So let me respond to these questions separately.

One: If you are sitting with someone you believe may have a fatal illness, and want to offer them space to talk, if they wish, about their feelings about that possible reality, the first thing to do is remember it is up to them, not you, to talk about this only if they want to. So you want to offer an inviting and accepting space, but never attempt to force the issue.

Begin by going inside yourself and finding a place of peace. If you are tense or anxious or pushing or wanting to “teach” or “instruct,” try another time when you can come from a place of peace.

Once you are in a state of inner peace, you might say something like, “Do you feel like talking about how you’re doing, or would you rather talk about something else?” Listen closely to their reply, and if they choose something else, respect that choice and follow their lead. If they seem eager to talk about how they’re doing, again, respect their choice and follow their lead.

If you listen from a place of inner peace and acceptance, it may happen that they will say something which opens into a conversation about death. Or, it may not happen. If the opening comes, accept it both externally and internally, so that you are not clenching or anxious. Say as little as possible so that they can say what they need to say. Remember, you are not in charge, they are.

Two: If you as a layperson are sitting with someone whom you think might want to shorten their remaining life, this is not an appropriate place for you to enter unless you are explicitly and sincerely asked to comment. This is a place for expert advice, and only when requested. A good palliative care team is comfortable in talking about death and helping patients make difficult choices about treatment. At Peace: Choosing a Good Death After a Long Life by Samuel Harrington, MD is a helpful read for family, friends, some patients, and probably you!

Your desire to help is a gift to the world. As hard as it can be sometimes, see if you can remember to let the dying person set the direction and pace of your interaction. Dying is something none of us can control, no matter how much we yearn to do so. Your loving and supportive presence will always be a blessing.

A Comforting Connection

A woman I had known for a long time as a rather distant friend happened to live in a community to which I moved some years ago. She was about 15 years my senior. I didn't expect to see much of her, but we became regular bridge partners and thence, close friends. Despite some problems with joints and muscles, she seemed in good health, and so I was surprised and upset to learn last summer that she had suddenly died. I was also upset because nobody I knew could tell me the cause of her death. Considering her age, I have no excuse to be surprised at her death, but she wasn't "sick," the last I knew. 

I am finding the best way I can deal with this is to try to focus on gratitude for the several years that our lives really overlapped. Today, as it happens, I have received a bunch of compliments on a shirt I am wearing, which actually belonged to the decedent's mother (!) who died around 2000. The shirt was given to me as my (then distant) friend was in the process of trying to settle her own mother's estate. The fact of wearing it at the same bridge club where the mother probably played 30-40 years ago creates a sense of connection that is not entirely illusory -- because a lot of people at that club do remember my deceased bridge partner, if not her mother.

Mimi

Joan comments: We humans have a huge need for something tangible to hold on to, especially in matters of the heart. Your understanding of the grace of the special shirt falls squarely in that reality. And it is good news that you have found gratitude as a valuable way to help you cope with your understandable feeling of being upset. These two approaches – having a special “thing” to hold on to and turning to gratitude for what you were given while she was alive are two excellent resources. Thank you for sharing.