My mother retired a few years ago. For much of her adult life she was a psychologist specializing in grief and loss, death and dying. She wrote her dissertation on the impact a child’s death has on family dynamics. She used a case study method, doing in-depth interviews with surviving family members of various tragic events that happened. In one case, a house fire killed a child; in another, a baby died of SIDS.
They were heart-wrenching stories, and even as a child I could tell this was “heavy stuff.” Of course I couldn’t comprehend the magnitude of a parent’s love for his/her child until I had my own; but, I realized in reading the transcripts that grief is a multi-faceted emotion. And that loss is a process.
Having my mother work in this somewhat unusual profession was excellent training. I learned at an early age so much about sympathy, empathy, guilt, regret, and the discomfort our society feels about the subject of death. Despite the fact that it is the one thing that unites us all, the one common thread in all our lives, most people just don’t want to explore the subject of death. It makes people uncomfortable, makes them squirm, and almost universally makes people change the subject.
When you have had a death in the family, people don’t know what to say. In fact, it is likely many people won’t bring it up. Often, they worry that they will be reminding you of the tragedy, as if you have forgotten it. Anyone who has experienced a death of a loved one knows this isn’t true. The deceased person is never far from your mind, from your heart. And more often than not, you want to talk about that person. My mother taught me this. She taught me that people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.
I have said many times that growing up with my two parents was the best training for my string of illnesses through the years. While cancer has been the most serious, it has by no means been the only medical challenge I’ve had. But having a surgeon for a father and a psychologist for a mother was perfect.
I was able to digest complex medical information. When surgeons told me what needed to be done I could weigh my options methodically. I could weigh options of treatment and ask good questions to determine the best course of action for me. I could read pathology reports with ease. And then I could be insightful into my emotional response, being introspective and analytic
And being insightful and analytic about a life-threatening disease means confronting mortality. Often I hear stories of people dying without a will. In fact, often it’s only once people have children that they feel sufficiently motivated to create a will, because their love for their child (and making plans for a guardian) is the only thing that can make them confront this fear.
Often when I was in the midst of chemotherapy I wanted to have conversations about the “what ifs.”
What if they didn’t get it all.
What if the chemo doesn’t work.
What if the cancer comes back.
What if I get another (worse) kind of cancer from the chemo.
What if I die.
No one really wanted to talk about the last possibility even though it wasn’t outlandish. (Interestingly, people are very intrigued with my recurrence likelihood and mortality statistics… they view the numbers as easier to talk about in the aggregate rather than just discussing my own death).
I viewed talking about my death as responsible. I wanted to make sure Clarke understood that if I died, I wanted him to find another wife. I wanted him to be happy and loved. I wanted our children to have a mother to love them. Unsurprisingly, my greatest worries centered on my children.
I sat with a friend at coffee one day and voiced some of these concerns. With 5 children of her own, my friend is an amazing wife and mother in all respects. At first she was resistant to talk about my death with me. She didn’t want to entertain that notion. But I pressed the issue. And finally she looked me in the eye and said, “If you die, I promise I will watch over your children. I promise I will make sure they have the right person love them and raise them. I promise you that I will make sure that happens.” I think she figured it was the fastest way to shut me up. I think she figured she would agree to anything I was asking just so we could get off the subject. But at some point I think she realized that it was really important to me. I wasn’t going to let it go. And I wasn’t going to be able to get past it until I felt they would be safe and watched over. So she told me what I needed to hear. And I know she meant what she said.
Like a balloon slowly deflating, I felt my body go lax. Finally, I could let it go. She had promised me she would do for me what I wanted. I could trust her, and I could move my worry to something else. She did more for me by making this promise than she will ever know.
Here is one of the things I’ve learned from my mother: When someone you love is talking about death, don’t change the subject. Don’t trivialize their worries. Don’t say, “Let’s not talk about that now.” If they want to talk about it, it means it’s important to them, it’s weighing on them.
Focus on the fact that while we don’t need to sit around thinking about death all the time, there unfortunately might be times in our lives when we might not be able to think of anything else. If you haven’t experienced that, I applaud you. But sooner or later, you or someone you love will.
Link to Twitter
I can’t believe the timing of this post. Jody Schoger and I were just talking about people needing a safe place to talk about death and dying. I’ve just started re-building the community online at Virtual Hospice (www.virtualhospice.ca) and was pondering with Jody about how to let people know that coming to the Discussion Forums to talk about death doesn’t precipitate it happening.
Sure we are witnessing increasing survival rates and more people living with cancer than ever before. But I’m confidant that everyone who has been diagnosed with cancer considers their own mortality or the death of their loved one.
I swear you must have heard our conversation by osmosis. Thank you for posting this incredible blog. I look forward to reading the ensuing comments.
Colleen
Yes…
With having gone through multiple deaths in a short time, it seemed I was surrounded by death. I needed to talk about that but people didn’t know how to respond — it’s uncomfortable and awkward.
You’re right… sometimes I (we) just need to talk it out and know someone is listening. In some of my trainings I tell the participants, “listen to the feeling beyond the words”.
Thank you for this.
i have discovered that it is easier to find people who do not want to talk about death, hear about your pain, especially if the death occurred a year or more ago. we have a friend in stage 4 colon cancer; she is doing well, has a great attitude but the statistics are against her. she does not talk about it much but her husband, who is my husband’s best friend, did want to talk about it last fall when we were visiting. and no one wants to hear how i feel about my Joysie’s death, except for the LymphomaAngels group. every day is different; some days it is ok not to talk about it but many days i do want to talk about it. my husband will listen as much as i need him to but i have found that i get the most relief and comfort talking to my therapist.
death is inevitable, something that very much needs to be shared.
thank you for this sharing.
This topic has been weighing heavy on me lately and you’re right, there doesn’t seem to be anyone who’ll be willing to talk or even listen. Glad to know I’m not alone. Stage 4 breast cancer does that to you, it did to me. Thanks for this
James died less than a year ago and even people who came to his memorial didn’t want to acknowledge his death. Since then, the same people have been quick to put it behind them, as though they might get some of “it” on them, and I understand.
Yesterday I called a friend who’s prostate cancer has spread to his bones and liver. I’m glad I called when I did because he had no one to talk with about his impending death. I’m not sure I gave him any words of wisdom, but he told me he felt better, and I think it was because I was a safe place for him to vocalize his feelings.
Thanks for writing this post, Lisa.
For anyone who’s afraid of calling a friend who is dying, I hope they’ll
Thank you! This very thing is weighing on me this week as my mom’s 95th birthday would have been this Sunday. I have been very fortunate with the friends that I have IRL and online. Many people reached out to me when she died and many more have been supportive and listened when I needed to talk. I think most people worry that they won’t know what to say. The words are not important, listening is. And if the person isn’t talking as I sometimes am not, just the physical presence is enough. Doing the simple things together can release many built up emotions. I can remember having a long talk with a friend after baking lasagna with her. I hadn’t realized how much I needed to talk. She just listened.
I would like to also add that I had many conversations with my mother about death, particularly after my dad died. She planned her funeral completely, even choosing her casket. Doing so saved us from having to make decisions as we were grieving and her wishes were carried out.
It’s so true that people are reluctant to speak about death, all aspects of it in fact. Even when you know death is imminent as was the case with my mother recently, people even in the family avoided talking about it. Now that she’s gone, it’s still hard for some to talk about her. After my cancer diagnosis no one ever said anything to me about the possibility of me dying, but you can bet it was on my mind and sometimes still is. Anyway, that’s one reason I chose to include the topic of loss on my blog too. Opening up and talking about death is healthy in my opinion. We don’t need to be afraid to do so. In fact, sometimes talking about death can help you enjoy living that much more.
Lisa,
I really appreciated this post. All of yours are significant, but this one especially. I had a similar experience this last spring, and as I was facing life-threatening surgery, no one wanted to discuss with me what I wanted to talk about: my possible death. It tore me up because it was all I could think about, but not express.
It was too morbid for them all, but with a four-year-old, I had to push it. One dear friend, like yours, finally understood my perspective. I asked her to help me pack my son’s suitcase for when we’d travel to the hospital: I needed her to see how I viewed his things and what was important to him. Although my husband was capable, she needed to see from the mommy side what his world was like, and that somehow, I wanted that world to remain whatever happened to me.
She was great: she could see I loved matching socks and hats to his outfits. She saw little details that I had to make known even if they were insignificant. And like your friend, she promised to look over him no matter what happened. She also sat down and let me discuss funeral arrangements, right down to the food. She didn’t tell me I was a control freak, she knew I needed to feel like I could express myself.
The amazing thing was similar to your experience: once I did, and got it off my chest, I could finally rest. I went into the hospital scared but confident that I did all I could for my son. I seriously believe it helped me recover quickly, because that strain of remaining upbeat yet mute had worn me out.
Good friends like that are priceless. I hope your post helps more people to see that the suffering person’s needs trump comfort, and they should let their friends express even the ugliness they feel. The benefits of “Thinking positive” are exaggerated if one can’t let go of the negative first. Thanks for your posting.
I was just talking about this topic to a friend the other day….how people talk, often publicly, about the most intimate details of their lives, but not about death. Once you have “looked into the abyss” of cancer, this is always in the back – or forefront – of one’s mind. How could it NOT be?
Since I have a rare and greatly underfunded and under-researched form of uterine cancer, I find myself having to explain all the time that there is not a lot of hope. I immediately see them shut down. They do not want to hear this. But I need to talk about it.
After my mother’s death, a hospice worker called and asked me what had been most helpful for me during her final days and after her death. I still remember telling her that it was when people just let me talk, whether they were uncomfortable with the topic or not. Listening to me was the best thing anyone could have done then, and now too.
Thanks for opening this dialogue, Lisa.
This has exactly been my experience helping friends & family through major illness. So beautifully put. Sharing.
You have such a gift with words that even a topic like death is comforting to read about. I too have wanted to talk about my death and my wishes but it has been impossible. I do worry that it would be mayhem, if I passed away. I don’t want my children to have to go through that. They are all so used to me doing what I do, that if something did happen, I know they would be lost.
So I try best to stay healthy and keep going, for me, for them. Life without my parents has never been the same for me. I think of them often and I do bring them up in conversation to, as you said, carry on their legacy. I don’t want anyone to forget them as long as I’m around, they will be thought of and remembered. That’s something else I fear after I am gone. Who will carry on for the ones I carry on for?
It is a difficult topic for some to talk about and deal with. I’ve come to terms with my mortality. I don’t like thinking that I will gone before I’m ready. I do accept the possibility that i could happen. I watched it happen with my parents. All I can do, is to try to keep things in order while I’m here and maybe make a list or two.
I appreciate your post today and the opportunity to think out loud about something I think of privately. You made that possible and I thank you.
Thank you so much for this post and the opportunity for me and others to comment. I have metastatic prostate cancer and nine months ago was given a year to eighteen months to live. So I’m half way there, my disease is progressing, but I’m hopeful I will have longer.
Talking about one’s death is very difficult for most, but I find it easier to talk about mine than others do. Unfortunately, I’ve heard so many stories of people wo died without ever talking about it.
When I realized I was going to die prematurely, I thought I would find many people out on the Intenet talking about it. I wanted to know what it was like, what they thought about, how they coped with it. Sadly, there was very little out there, so I decided to fill the gap as much as I could do personally. I started a blog at http://dyingdigitally.com where I talk about what it’s like to be dying and what goes through my mind. I intend to keep writing right up to the end with my last post being a sort of Final Lecture. Just as it is good therapy to talk about it, I find it very satisfying to write and share, so it is both therapy and education. I have many followers in the hospice and palliative care community who follow me because they really want to know what it’s like for the people they care for. The many others who follow me who are dying or are caring for someone who is dying, provide me with wonderful feedback on how good it is to hear someone talk about death.
So thank you for contributing to such an important dialogue and thanks also to your followers who have commented so eloquently. All of us are helping to shine a light.
Doug
your a great mother ,, having the courage to talk about death is such a hard thing to do and you are brave .. !!!and a great wife !
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