Dear Barbara: I just listened to your interview on the Art of Manliness. As I go through life I find it useful to ask others what they have learned in any particular activity or endeavor. With the many contacts you have had with those finishing their time here, I wonder what lessons they may have shared with you? What would they have done differently, what would they tell us?
Actually I am writing a book about those various lessons I have learned from the people I have worked with over the years. So those lessons are in my mind right now.
Here are some thoughts: Most people, I am sorry to say, are so caught up in the process of getting treatment (and generally get very sick in that process) that they don’t feel well enough to have deep thoughts. They certainly don’t want to “jinx” their treatment by thinking about dying and eventual death. I’ve learned we spend so much time trying to stay alive that we stop enjoying the life we have. I see that as a great sadness that a person may not even know they are experiencing.
Families have their fears and concerns. They are more realistic on some level but generally play the game of “this is going to work” and miss their opportunity to do and say those things that are important.
If you asked a person on the day they were dying what they would have done differently I think they would tell you, if they could (and they can’t, it’s not like in the movies), that there should have been less treatment for this life threatening illness. They would say they would have done something they always wanted to do and didn’t instead. I don’t think they would have added another week or even a month to the life they were living with all its debilitation and side effects. Dying seems to come as a surprise. “I did all the treatment, suffered the side effects, gave up my activities, did everything the doctors said and I’m dying? How can that be? I wish I had eaten the dessert that no one said I should have.”
The dying process is such that it is in the months before death that a person is alert and thinking about the might have beens. As death draws closer into the weeks before death the withdrawal process has become almost complete. All thoughts are held within. I believe there is a lot of processing of one’s life occurring, but on the inside. “What have I done? Who have I touched?” Thoughts and considerations. Each person will have thoughts that apply to their individual life but the key word here is individual. We will look back on our own life's direction, accomplishments, and regrets. It seems to be more of an internal processing, an assessment. These are seldom shared.
As I reread this maybe no one is thinking any of these thoughts as they approach death. Maybe the above is what I have perceived and what I would think if it was happening to me. Maybe the most we can know and learn from another’s life choices is not what they say or don’t say but from what registers within us. Something to think about.
Something more about Death Draws Closer...
I wrote A Time To Live when my mother and step father were diagnosed with stage 4 lung cancer within months of each other. A Time To Live is for the person who is faced with a chronic or life threatening diagnosis. It offers suggestions on food, sleep, how to deal with affects of medications... and ideas of how to use this "gift of time" that they have in front of them.
6 comments
barbara
Hi Karen, you are so right about how caring for our loved ones, as they are dying, during this time of covid is inadequate. We are a people of touch, closeness, interactions and covid has taken our main life tool away from us. Many agencies and facilities are trying to think “outside the box” to address the needs of family separation but how do you substitute family love?
My blessings to you in your time of grief. Barbara
Hi Karen, you are so right about how caring for our loved ones, as they are dying, during this time of covid is inadequate. We are a people of touch, closeness, interactions and covid has taken our main life tool away from us. Many agencies and facilities are trying to think “outside the box” to address the needs of family separation but how do you substitute family love?
My blessings to you in your time of grief. Barbara
Karen Thorsell, RN
I am a retired Oncology RN, a previous Hospice RN and I just lost my father from Cancer who was on Hospice in the nursing home. Although the Hospice team tried to do everything. They could, with today’s covid rules at the nursing home, they were blocked from doing their job. My limited access as a family member was also isolating and disappointing. His comment to me was “I don’t know what to expect”. This was desperation on a very basic level. Even I as his daughter had difficulty meeting those needs thru a plexiglass-glass partition yelling at him since he was hard of hearing. There is something greatly wrong with this system! For us, our chance is gone, but he knew how much we loved him. I just wish for others it could be different, I don’t think covid and these restrictions are going away anytime soon. And there are many families and patients who must be lead to the expression of love. As simple as it sounds, it is not an easy topic for many. My father was a religious man, I felt that his spiritual needs were not met at that time. But I know in my heart that he knew the direction to go, but It could have been so much more meaningful for all of us.
I am a retired Oncology RN, a previous Hospice RN and I just lost my father from Cancer who was on Hospice in the nursing home. Although the Hospice team tried to do everything. They could, with today’s covid rules at the nursing home, they were blocked from doing their job. My limited access as a family member was also isolating and disappointing. His comment to me was “I don’t know what to expect”. This was desperation on a very basic level. Even I as his daughter had difficulty meeting those needs thru a plexiglass-glass partition yelling at him since he was hard of hearing. There is something greatly wrong with this system! For us, our chance is gone, but he knew how much we loved him. I just wish for others it could be different, I don’t think covid and these restrictions are going away anytime soon. And there are many families and patients who must be lead to the expression of love. As simple as it sounds, it is not an easy topic for many. My father was a religious man, I felt that his spiritual needs were not met at that time. But I know in my heart that he knew the direction to go, but It could have been so much more meaningful for all of us.
Dawn Malone
“Dying should not be an embarrassment…”
Boom. This.
Thank you, Alison, for writing that…
“Dying should not be an embarrassment…”
Boom. This.
Thank you, Alison, for writing that…
Sue
As a palliative provider, I have time to talk to patients about “what ifs” and goals of care. I often have conversations with families about choosing to spend the time to fight with those effects or not fighting and having quality time now. I went through it with my mother who had leukemia and she chose to fight for 2 years. I know personally, I would have given up way earlier than she had but we spent a significant amount of that time talking about the benefits of having a terminal illness, such as she was in my hospital the majority of the time, and she was “the sounding board” for many staff. Many patients and families tell me they want to stop and then doctors talk them out of this, and I have witnessed this with my own eyes. I had a family tell the oncologist that they wanted to stop and go home that day from the hospital. The oncologist responded, “Ok, let’s talk about that next week on your follow up visit.” After the oncologist left the room, the family asked, “What just happened?” Which, of course, was the oncologist wasn’t listening and wasn’t respecting their decision. Like I did with my mother, I do with my patients and that is discussing what good has come from having a terminal illness. By the end of the conversation, I usually see an “aha” moment and some satisfaction of the path ahead.
We have an expectation that we have to fight to keep our bodies alive. It’s so interesting how different the culture in the US is so different that other cultures around the world.
During this pandemic, I’m also seeing families make hospice decisions quicker because they are not sending loved ones to rehab and missing out on being with them because visitors aren’t allowed at rehab. It’s nice seeing families choosing to have the time with their loved ones.
As a palliative provider, I have time to talk to patients about “what ifs” and goals of care. I often have conversations with families about choosing to spend the time to fight with those effects or not fighting and having quality time now. I went through it with my mother who had leukemia and she chose to fight for 2 years. I know personally, I would have given up way earlier than she had but we spent a significant amount of that time talking about the benefits of having a terminal illness, such as she was in my hospital the majority of the time, and she was “the sounding board” for many staff. Many patients and families tell me they want to stop and then doctors talk them out of this, and I have witnessed this with my own eyes. I had a family tell the oncologist that they wanted to stop and go home that day from the hospital. The oncologist responded, “Ok, let’s talk about that next week on your follow up visit.” After the oncologist left the room, the family asked, “What just happened?” Which, of course, was the oncologist wasn’t listening and wasn’t respecting their decision. Like I did with my mother, I do with my patients and that is discussing what good has come from having a terminal illness. By the end of the conversation, I usually see an “aha” moment and some satisfaction of the path ahead.
We have an expectation that we have to fight to keep our bodies alive. It’s so interesting how different the culture in the US is so different that other cultures around the world.
During this pandemic, I’m also seeing families make hospice decisions quicker because they are not sending loved ones to rehab and missing out on being with them because visitors aren’t allowed at rehab. It’s nice seeing families choosing to have the time with their loved ones.
Alison Raborn
What surprises or shocks me is that people go back to a crazy and often heavy work schedule until they are not able to do so any longer. I realize there are bills to be paid, sense of identity within the workplace, etc. . . but when I ask directly I often get the answer that the illness is not “going to defeat me” and I will carry on as if everything is normal. And everyone thinks they are so strong, a hero. And when they are no longer able to work it is like a defeat in a battle or a “giving up.” I even had someone tell me they were sorry for not fighting hard enough to live. Dying should not be an embarrassment, feelings of guilt, or shame, but life is not perfect and you are right it is not Hollywood.
What surprises or shocks me is that people go back to a crazy and often heavy work schedule until they are not able to do so any longer. I realize there are bills to be paid, sense of identity within the workplace, etc. . . but when I ask directly I often get the answer that the illness is not “going to defeat me” and I will carry on as if everything is normal. And everyone thinks they are so strong, a hero. And when they are no longer able to work it is like a defeat in a battle or a “giving up.” I even had someone tell me they were sorry for not fighting hard enough to live. Dying should not be an embarrassment, feelings of guilt, or shame, but life is not perfect and you are right it is not Hollywood.
Marilee Donovan
Barbara
My husband died two weeks ago and though I have been a cancer nurse and a hospice nurse, I have never had a spouse die before. Thank you for you booklets. They were a godsend.
In reference to the current blog. I agree that with the emphasis on treatment, it is hard to have these deep conversations. All energy is focused on “it is going to work.” Mike was sure that he was going to live to be 100 even though the surgery was far more extensive than expected, he was allergic to chemotherapy, his tumors spread even in the radiation field while getting radiation and immunotherapy seemed to stimulate tumor growth. He even agreed to hospice with the expectation that he would be one of the 5% who survives and comes off hospice. As he continued to get weaker, we had several deep conversations about life and death. They were short but intense. And in one of these, he did say, “If I had known it was going to be like this, I wonder if I would have made different decisions about treatment.”
Barbara
My husband died two weeks ago and though I have been a cancer nurse and a hospice nurse, I have never had a spouse die before. Thank you for you booklets. They were a godsend.
In reference to the current blog. I agree that with the emphasis on treatment, it is hard to have these deep conversations. All energy is focused on “it is going to work.” Mike was sure that he was going to live to be 100 even though the surgery was far more extensive than expected, he was allergic to chemotherapy, his tumors spread even in the radiation field while getting radiation and immunotherapy seemed to stimulate tumor growth. He even agreed to hospice with the expectation that he would be one of the 5% who survives and comes off hospice. As he continued to get weaker, we had several deep conversations about life and death. They were short but intense. And in one of these, he did say, “If I had known it was going to be like this, I wonder if I would have made different decisions about treatment.”