I was talking with Richard and Bill on their The Healing Power of Grief Radio Show yesterday about how and when to talk about dying and death. We Americans don’t talk about dying and approaching death when we NEED to talk about it (doctors hesitate to tell patients they can’t be fixed, families hesitate to talk with a loved one about the possibility of dying and approaching death).
If we can’t talk about dying when it is paramount to do so how can we expect people to talk about dying and death, to make plans for their own death, BEFORE they need to? We are such a death denying society. We believe other people die, but not me or anyone close to me.
YET, and I purposely put yet in capitals, we are all going to die someday. Our bodies are programmed to die. It is how we are made. We are born, we experience, and then we die. Nothing lives forever. From the time we came into being the physical body was made to die. There is a process to the body dying, that has not changed EVER. How we as individuals and societies deal with the body dying has changed over the eons and will continue to change.
Basic dying 101: there are only two ways to die, gradual or fast. Fast is a heart attack, accident, suicide. A person is alive one minute and dead the next (or within days and hours. Covid seems to be fitting into that category).
Gradual death has a process to it. It doesn’t just happen. The process is the same for both old age and disease, but with old age the timeline is different. In this article I'm going to talk about the dying process and timeline from the disease perspective, from when the disease begins robbing the body of its ability to function and eventually the body dies.
The dying process basically has stages to it that begin months before actual death occurs. We can address the stages as months, weeks, and days/hours.
Looking at a few guidelines you can determine if a person has entered the dying process. Important to note: just because a person has a life threatening illness does not mean they have entered the dying process.
Months before death changes begin in eating, sleeping and social interactions. Weeks before death changes occur to alertness, ability to interact, breathing, and eyes are generally partially open while sleeping. Days to hours further changes in breathing, body coloring, and blood pressure occur. The person is now non responsive. (All of this is more detailed in my booklet, Gone From My Sight.)
In the days to hours before death, even an unplanned-for death, the signs of the process for days and hours kicks in and you see the process unfolding.
Now, back to why I started this blog: if we would educate ourselves before we need the information, before someone we care about is dying, before we are faced with a life threatening illness, or before someone we care about dies a fast death we will have “tools” to guide and support us through one of the most challenging experiences of our lives ——the dying and eventual death of someone we care about and even our own dying.
Knowledge reduces fear. Knowledge allows us to approach an experience with information. Knowledge supports us, keeps us from, or at least reduces, our floundering.
Contrary to superstitions many of us carry, knowledge does not make something happen sooner and lack of knowledge does not keep something from happening. However, knowledge does make an experience just a tad gentler to live through.
Something More... about We Are Born, We Experience, and Then We Die
In my book, The Final Act of Living, Reflections of A Hospice Nurse, you will not only read about experiences I have had in my 40 plus years caring for the dying. There is a chapter that goes over advance directives.
10 comments
barbara
Hi Karen, about your questions of your gentleman’s sudden decline. Dementia doesn’t play by any rules so his sudden dip into actually dying could be dementia disease unfolding. I don’t know his medical history so I can’t say if there is other physical issues at play here. There generally comes a point where a person with dementia just forgets how to swallow, starts choking, and or just holds food in their mouth. The body then begins shutting down more quickly and death comes soon thereafter. Talk with your hospice nurse about what is happening and how you can keep him comfortable. My blessings are with all of you. Barbara
Hi Karen, about your questions of your gentleman’s sudden decline. Dementia doesn’t play by any rules so his sudden dip into actually dying could be dementia disease unfolding. I don’t know his medical history so I can’t say if there is other physical issues at play here. There generally comes a point where a person with dementia just forgets how to swallow, starts choking, and or just holds food in their mouth. The body then begins shutting down more quickly and death comes soon thereafter. Talk with your hospice nurse about what is happening and how you can keep him comfortable. My blessings are with all of you. Barbara
Karen Rowley
Hello,
I am care giving for a 94 year old dementia male patient who enrolled in Hospice 2-2-21.
He is a healthy man, never complains, is a joy to care for. His health has deteriorated, seemingly, almost overnight, from talking and feeding himself to a state of incoherance.
In the past 24 hours he has become non responsive and can no longer swallow.
I wonder if dementia causes an inability to swallow,did he forget how,? Or, is it physical?
He has never been a big sips taker, usually tiny sips is all. No food or liquid in the past 28 hours, I wonder how long he can survive.
Hello,
I am care giving for a 94 year old dementia male patient who enrolled in Hospice 2-2-21.
He is a healthy man, never complains, is a joy to care for. His health has deteriorated, seemingly, almost overnight, from talking and feeding himself to a state of incoherance.
In the past 24 hours he has become non responsive and can no longer swallow.
I wonder if dementia causes an inability to swallow,did he forget how,? Or, is it physical?
He has never been a big sips taker, usually tiny sips is all. No food or liquid in the past 28 hours, I wonder how long he can survive.
barbara
Hi Claudia, about your question of your parents lifting their arms in the air in the days before death; those arm movements are very common. There is a restlessness, picking of the air, arms up and moving about in the weeks to days before death. What does it mean? I’m not sure it is purposeful or has actual meaning as it does when we lift our arms in greeting, or to wave. Most of the movements as we approach death are random, without actual purpose. I do believe the person is in a distant dream, experiencing everything vaguely and that movements can be a reflection of what their dream is. Which brings us full circle to your question was their meaning to the arm movements. Probably not.
My blessings to you. Barbara
Hi Claudia, about your question of your parents lifting their arms in the air in the days before death; those arm movements are very common. There is a restlessness, picking of the air, arms up and moving about in the weeks to days before death. What does it mean? I’m not sure it is purposeful or has actual meaning as it does when we lift our arms in greeting, or to wave. Most of the movements as we approach death are random, without actual purpose. I do believe the person is in a distant dream, experiencing everything vaguely and that movements can be a reflection of what their dream is. Which brings us full circle to your question was their meaning to the arm movements. Probably not.
My blessings to you. Barbara
claudia haddon
I was given a copy of your “Gone from our sight” qs my brother died in hospice from pancreatic cancer. It was a comfort to hear the reality of the process and the grief that overwhelms us initially.
I am so determined to understand and use the knowledge I gain from your words to have a better death with fear and anxiety lessened.
If you could address one question Ihave I would be so grateful. At both of my parents death, each of them lifted their arms repeatedly during the days before death – outstretched and uplifted. I have always wondered if this was a spirtual act or if the body was attempting to breath more easily.
Thank you so much for the kowledge I have gained
I was given a copy of your “Gone from our sight” qs my brother died in hospice from pancreatic cancer. It was a comfort to hear the reality of the process and the grief that overwhelms us initially.
I am so determined to understand and use the knowledge I gain from your words to have a better death with fear and anxiety lessened.
If you could address one question Ihave I would be so grateful. At both of my parents death, each of them lifted their arms repeatedly during the days before death – outstretched and uplifted. I have always wondered if this was a spirtual act or if the body was attempting to breath more easily.
Thank you so much for the kowledge I have gained
barbara
Hi Shelly, you have a great idea. Taking that idea a step further let’s make a Life Skills course be mandatory in high school—off the top of my head I’m thinking budgeting, financial management, cleaning, communication, time management and advanced directives. I’m sure there are more areas if I gave it more thought. Blessings! Barbara
Hi Shelly, you have a great idea. Taking that idea a step further let’s make a Life Skills course be mandatory in high school—off the top of my head I’m thinking budgeting, financial management, cleaning, communication, time management and advanced directives. I’m sure there are more areas if I gave it more thought. Blessings! Barbara
barbara
Hi Eileen, thank your sharing your father’s final experience. Knowledge can make any experience go a bit more smoothly. I’m impressed your father read the materials also. My blessings to you. Barbara
Hi Eileen, thank your sharing your father’s final experience. Knowledge can make any experience go a bit more smoothly. I’m impressed your father read the materials also. My blessings to you. Barbara
Boyd Smith
I became a Pastor of Prayer & Care ten years ago. Somehow I came across your booklets and ordered them. It opened my eyes on how to view death and dying. I have watched many of my members as their bodies gave away to death and your books were spot on. I provided these to families as a way to minister to them. Thanks for writing them!
I became a Pastor of Prayer & Care ten years ago. Somehow I came across your booklets and ordered them. It opened my eyes on how to view death and dying. I have watched many of my members as their bodies gave away to death and your books were spot on. I provided these to families as a way to minister to them. Thanks for writing them!
Eileen
Thank you Barbara for illuminating what people think of as a dark topic with knowledge, kindness, and candor. Your materials about death and dying gave our family the tools to prepare ourselves for my Dad’s home death. He too read your books and it helped him understand the changes his body was going through over the last years of his life. A healthy 95 year old, his slow death was not from disease but general decrepitude. He understood the pregnancy metaphor and would quip, “I’m ready to move on, when is this labor going to start?” When he finally did begin his death labor he knew what was happening to him he was relaxed and joked, “ah good, it’s about time. See you on the flip side.” Because we all understood the slow death process we could support my Dad and one another in this profound final act of his life.
With deepest respect and gratitude,
Eileen
Thank you Barbara for illuminating what people think of as a dark topic with knowledge, kindness, and candor. Your materials about death and dying gave our family the tools to prepare ourselves for my Dad’s home death. He too read your books and it helped him understand the changes his body was going through over the last years of his life. A healthy 95 year old, his slow death was not from disease but general decrepitude. He understood the pregnancy metaphor and would quip, “I’m ready to move on, when is this labor going to start?” When he finally did begin his death labor he knew what was happening to him he was relaxed and joked, “ah good, it’s about time. See you on the flip side.” Because we all understood the slow death process we could support my Dad and one another in this profound final act of his life.
With deepest respect and gratitude,
Eileen
Agnes Goshe
Another timely discussion! In hindsight, I found it to be true that “In the days to hours before death, even an unplanned-for death, the signs of the process for days and hours kicks in and you see the process unfolding”…after a loved on suicided.
Another timely discussion! In hindsight, I found it to be true that “In the days to hours before death, even an unplanned-for death, the signs of the process for days and hours kicks in and you see the process unfolding”…after a loved on suicided.
Shelly C.
Barbara, this was awesome. I was told in 2016 that I was dying. As a result, I hurriedly put together a living will and advanced directives. It was appropriate for the time, but then I got better, so I revised them to be more appropriate for the longer term. Somewhere during this process I began thinking about how little we talked about death and dying and communicating what we would want that to look like when we did in fact die. I realized how little any of us knew or thought about all of this, let alone talked about it. I came to the conclusion that when our children, now suddenly adults, graduating from high school and were receiving their diplomas, that they should be required to think about what they might want to have happen if they became ill or injured to the point that they couldn’t speak for themselves and to fill out the appropriate paperwork before they could receive their diplomas.
I know that that sounds rather rash, but it would get the conversation started, and it would require families consider truths, even if they didn’t talk about it together, as some wouldn’t, but it might begin to turn the tide in how we treat the concept of death. The graduate would of course have to understand that they could change what they wanted at any point, and that the real point of the matter was to get them to start thinking about it.
And for those people that think I’ve fallen and bumped my head, and what a wildly inappropriate concept this might be, consider that your child is in a car accident and is on life support. Do you know what they would want you to do? Personally, without having had that conversation with my child, I could never had peace in my heart no matter what decision I made. If I had them take my child off of life support, I would live in constant agony and guilt that maybe I gave up on them sooner than they would have wanted me to. If I left them on life support and they somehow miraculously (I use this word very loosely here) survived but required constant care, and couldn’t communicate, and drooled down themselves, etc… I would always wonder, knowing that I would personally NEVER want to live that way, should I have just my child peacefully pass on.
And please, understand, I’m in no passing judgment on anyone for any decisions they have made! I’m merely looking for a way for our country to learn how to talk about dying in a real and meaningful way, and by the way, our children can be phenomenal teachers for us adults sometimes. They will very often handle things much better than we may. They have fewer conceived notions about things than we adults do.
I just remember when I had to try to have this conversation with my family 5 years ago, I very much felt like I was driving a train wreck. But now, the conversation has been had. I’m VERY open about what I want and that I expect it to be respected and my wishes be followed. Has the rest of my family addressed this issue for themselves? Not that I’m aware of… It’s not talked about… Wouldn’t it be amazing if we could teach a generation to start doing what we ourselves seem to be to afraid do. I’m not saying that my idea is the right one, but it’s at least an idea… Can we talk about it?
Barbara, this was awesome. I was told in 2016 that I was dying. As a result, I hurriedly put together a living will and advanced directives. It was appropriate for the time, but then I got better, so I revised them to be more appropriate for the longer term. Somewhere during this process I began thinking about how little we talked about death and dying and communicating what we would want that to look like when we did in fact die. I realized how little any of us knew or thought about all of this, let alone talked about it. I came to the conclusion that when our children, now suddenly adults, graduating from high school and were receiving their diplomas, that they should be required to think about what they might want to have happen if they became ill or injured to the point that they couldn’t speak for themselves and to fill out the appropriate paperwork before they could receive their diplomas.
I know that that sounds rather rash, but it would get the conversation started, and it would require families consider truths, even if they didn’t talk about it together, as some wouldn’t, but it might begin to turn the tide in how we treat the concept of death. The graduate would of course have to understand that they could change what they wanted at any point, and that the real point of the matter was to get them to start thinking about it.
And for those people that think I’ve fallen and bumped my head, and what a wildly inappropriate concept this might be, consider that your child is in a car accident and is on life support. Do you know what they would want you to do? Personally, without having had that conversation with my child, I could never had peace in my heart no matter what decision I made. If I had them take my child off of life support, I would live in constant agony and guilt that maybe I gave up on them sooner than they would have wanted me to. If I left them on life support and they somehow miraculously (I use this word very loosely here) survived but required constant care, and couldn’t communicate, and drooled down themselves, etc… I would always wonder, knowing that I would personally NEVER want to live that way, should I have just my child peacefully pass on.
And please, understand, I’m in no passing judgment on anyone for any decisions they have made! I’m merely looking for a way for our country to learn how to talk about dying in a real and meaningful way, and by the way, our children can be phenomenal teachers for us adults sometimes. They will very often handle things much better than we may. They have fewer conceived notions about things than we adults do.
I just remember when I had to try to have this conversation with my family 5 years ago, I very much felt like I was driving a train wreck. But now, the conversation has been had. I’m VERY open about what I want and that I expect it to be respected and my wishes be followed. Has the rest of my family addressed this issue for themselves? Not that I’m aware of… It’s not talked about… Wouldn’t it be amazing if we could teach a generation to start doing what we ourselves seem to be to afraid do. I’m not saying that my idea is the right one, but it’s at least an idea… Can we talk about it?