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Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness
When someone you love receives a terminal diagnosis, the whole family is suddenly faced with a prolonged crisis. While medical advances have given us the gift of extending life, meaning that a loved one could survive months or even years before dying, it has also changed the way we grieve. Published in collaboration with Harvard Health Publications, Saying Goodbye guides you through this complex journey, offering hope and healing for those who may be "living with death" for an extended period of time.
368 pages, Paperback
First published November 11, 2010
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August 6, 2016
What if we did not pretend that death did not exist? What if we did not spend most of our lives ignoring the 800 pound gorilla in the corner of the room? What if we had some idea of the reality we face when someone in our lives is being taken from us, slowly and with agony, filling our days with exhaustion and our nights with anxiety and pain?
Saying Goodbye calls out 'the new death' for what it is: an extended and harrowing phase in most of our lives, where someone we love needs us to help them through diagnoses, treatment and eventual death from a terminal illness. People no longer die as often from sudden onset events (like heart attacks or strokes) -- although these conditions still occur. In contemporary times, we are likely to end our lives battling cancer, Alzheimer's, MS or some other longer term and debilitating condition. During this time, our health, our finances and our sanity will be leached from us. And it will affect the entire family or circle of friends who are providing support.
Are you ready?
If you are at the beginning stages with a loved one who has a terminal diagnoses, now is an excellent time to read this...or a book like it. You will need to begin to learn how to talk to medical professionals, accountants, attorneys, funeral directors, physical and occupational therapists, nutritionists, bankers and administrators in assisted living or skilled nursing facilities. If you are like me, you know next to nothing about any of this and would be advised to do some planning.
I am reading this book further into the process and feel that I would have been better off finding the time to read this kind of material earlier on. Much of what I found in the book does resonate with the experience my family has been through. I agree with the precepts given concerning organization and frankness about what is happening.
As is typical, the book attempts to break the prolonged grieving period into 'stages' of crisis, unity, acceptance, etc. Stories from people who have real life experience with terminal illness and it's effects on care givers provide illustrations for each of the stages. Also, as typical, some of the scenarios rang more true to me than others. One woman talked about losing her older sister in a car accident and how deeply this wounded her. She spoke of the way she forged on with her career and her everyday life, but also of how she cried daily for two years. Her friends and colleagues were unaware because she was able to masque this so thoroughly. -- Other scenarios are more rarefied and less applicable (to my situation). One woman related how her she and her son healed from the loss of her husband through the purchase of a second vacation home in Vermont. -- Again, my main complaint about most of these 'coping with' books is that they are often told through the point of view of 5-percenters (perhaps not 1 percenters) who do lot live with the financial limitations most of us face.
Two pieces of advice I would give to anyone in this situation are:
1. Learn to compartmentalize.
2. Keep an eye on your emotional crutch.
I did not see either of these issues addressed in this book (or others I have read)
On compartmentalization: You will become forced to separate your various lives during this awful time. You play many roles for many people and these roles will clash -- often several times a day-- sometimes several times within the hour.
Yesterday I woke up, for example, and got myself ready for work and my daughter ready for school. I talked to my husband, who needed to work from home because of our ongoing schedule conflicts. I often need to be two or three places simultaneously and all of these places seem important. Long term terminal illness will turn everyone's schedule upside down and it makes working life (especially careers) nearly impossible.
I took my daughter to school and then ran over to the pharmacy to pick up my dad's morphine prescription. I squeezed in a grocery store run because I knew I would have no time for that later in the day. I dropped off the groceries and headed off to a job site for work. As I was driving I listened to the classical music station. (Music is a huge trigger for me and I have leaned more toward the classics during this time. It is melodic neutral space for me.) Unfortunately, they were doing Pops and the overture to My Fair Lady was playing. "On the Street Where You Live" came on and immediately reduced me to tears. This is my dad's favorite song from that show. I found myself on the freeway in tears. Again. I missed my exit. I found the job site and pulled out the extra under eye concealer I have learned to carry with me at all times in my bag. I never know when I am going to break down and it is good to have my cover in place.
I worked and got home in time to pick up my daughter, ask her about her day, make sure she got her homework done etc. I made dinner for us and some extra for my parents. I fed us quickly and left my husband to clean up. Off to my parents. Time to talk to the accountant, who was making an evening 'home visit' to set us straight about the financials once dad passes away. Then it is time to help my mom shower. She can barely walk...hardly stand, actually. Her body is emaciated. She feels as frail as a bird. I seem to tower over her now and I can lift her almost as easily as I still lift my 9 year old from time to time. I examine her body for signs of bed sores. By now it is nearing 8:00 pm and I am tired. I wonder where my humanity has gone...it is now hard to remember a time when I was not exhausted every day, anxious and depressed, helpless in the face of problems with no solution. I am now not much more than a list-maker...a runner of errands...a maker of phone calls. These lists never get completely checked off. The errands never cease. The phone calls lead to more phone calls...more paper work...more confusion.
I drive home in a daze -- just in time to kiss my daughter good night. She is reading in her room with my husband. I join them for the last few minutes and read a couple more pages of "Saying Goodbye". Then I go downstairs and prepare for the next day. By ten I am falling asleep in front of another old movie. My patient husband taps away next to me on his phone as I slide into oblivion.
As I fall asleep I remember where my humanity is. I understand that it is here and now. How much more human do we get than this? We live and then we die. But before we do, we need to take care of one another as best we can. My conflicting roles, at the present, are the most important part of my practice of life. It is an honor to be called upon, just a few times in a life, to be one of those persons who will become a helper. My parents are trusting me with this crucial role. My child is trusting me with it too. My humanity is wrapped up in my acceptance of this chance to show love. --It is enough to make me get up the next morning and get through another day. But one of the toughest parts of this is to reconcile everyone's needs (along with my own).
On the topic of emotional crutches: we all have them. This type of lifestyle (care giving) will drive many of us to over eat, others will begin to hit the bottle a bit too hard, or head out for 'retail therapy' after leaving one of the many depressing places on our weekly rounds. It is important to give yourself a break during this time. However, keep one eye on yourself and calibrate the damage you are doing to your own health and well being (both physical and psychological). Be prepared to address this once the worst of the crisis is past.
My crutches are television and music. Most nights I can be found hiding behind headphones, alone in my living room...or else staring glassily at a monitor. My drug of choice is retro TV from the late 50s, the 60s and the 70s. I prefer the grainy reception of ME TV (we do not have cable) to the slicker modern fare. When I see Robert Conrad or Martin Milner or William Shatner or Roy Thinnes or Rod Serling or anyone else from my parent's hey day, I find a celluloid replacement for the loss I am going to experience. I have no film footage of my own father from his younger days. The closest thing I have are these surrogates from his generation. The programs bring me back to my own childhood. Sometimes, if the lighting is dim and I close out the rest of the room -- staring right into the screen--I feel like I am in 1973 again. It is a miniature time travel. And I have to learn to wean myself from it eventually.
In closing, I think that each of us will experience death's arrival in the room in a very personal manner. No book can truly reflect our individual understanding of drawn out grief followed by inevitable loss. However, many literary people seek solace in reading almost reflexively. The information contained in this book -- and in many others-- can assist you in making a plan and dealing with your issues. It can be a basic palette onto which you paint your own version of saying goodbye.
Saying Goodbye calls out 'the new death' for what it is: an extended and harrowing phase in most of our lives, where someone we love needs us to help them through diagnoses, treatment and eventual death from a terminal illness. People no longer die as often from sudden onset events (like heart attacks or strokes) -- although these conditions still occur. In contemporary times, we are likely to end our lives battling cancer, Alzheimer's, MS or some other longer term and debilitating condition. During this time, our health, our finances and our sanity will be leached from us. And it will affect the entire family or circle of friends who are providing support.
Are you ready?
If you are at the beginning stages with a loved one who has a terminal diagnoses, now is an excellent time to read this...or a book like it. You will need to begin to learn how to talk to medical professionals, accountants, attorneys, funeral directors, physical and occupational therapists, nutritionists, bankers and administrators in assisted living or skilled nursing facilities. If you are like me, you know next to nothing about any of this and would be advised to do some planning.
I am reading this book further into the process and feel that I would have been better off finding the time to read this kind of material earlier on. Much of what I found in the book does resonate with the experience my family has been through. I agree with the precepts given concerning organization and frankness about what is happening.
As is typical, the book attempts to break the prolonged grieving period into 'stages' of crisis, unity, acceptance, etc. Stories from people who have real life experience with terminal illness and it's effects on care givers provide illustrations for each of the stages. Also, as typical, some of the scenarios rang more true to me than others. One woman talked about losing her older sister in a car accident and how deeply this wounded her. She spoke of the way she forged on with her career and her everyday life, but also of how she cried daily for two years. Her friends and colleagues were unaware because she was able to masque this so thoroughly. -- Other scenarios are more rarefied and less applicable (to my situation). One woman related how her she and her son healed from the loss of her husband through the purchase of a second vacation home in Vermont. -- Again, my main complaint about most of these 'coping with' books is that they are often told through the point of view of 5-percenters (perhaps not 1 percenters) who do lot live with the financial limitations most of us face.
Two pieces of advice I would give to anyone in this situation are:
1. Learn to compartmentalize.
2. Keep an eye on your emotional crutch.
I did not see either of these issues addressed in this book (or others I have read)
On compartmentalization: You will become forced to separate your various lives during this awful time. You play many roles for many people and these roles will clash -- often several times a day-- sometimes several times within the hour.
Yesterday I woke up, for example, and got myself ready for work and my daughter ready for school. I talked to my husband, who needed to work from home because of our ongoing schedule conflicts. I often need to be two or three places simultaneously and all of these places seem important. Long term terminal illness will turn everyone's schedule upside down and it makes working life (especially careers) nearly impossible.
I took my daughter to school and then ran over to the pharmacy to pick up my dad's morphine prescription. I squeezed in a grocery store run because I knew I would have no time for that later in the day. I dropped off the groceries and headed off to a job site for work. As I was driving I listened to the classical music station. (Music is a huge trigger for me and I have leaned more toward the classics during this time. It is melodic neutral space for me.) Unfortunately, they were doing Pops and the overture to My Fair Lady was playing. "On the Street Where You Live" came on and immediately reduced me to tears. This is my dad's favorite song from that show. I found myself on the freeway in tears. Again. I missed my exit. I found the job site and pulled out the extra under eye concealer I have learned to carry with me at all times in my bag. I never know when I am going to break down and it is good to have my cover in place.
I worked and got home in time to pick up my daughter, ask her about her day, make sure she got her homework done etc. I made dinner for us and some extra for my parents. I fed us quickly and left my husband to clean up. Off to my parents. Time to talk to the accountant, who was making an evening 'home visit' to set us straight about the financials once dad passes away. Then it is time to help my mom shower. She can barely walk...hardly stand, actually. Her body is emaciated. She feels as frail as a bird. I seem to tower over her now and I can lift her almost as easily as I still lift my 9 year old from time to time. I examine her body for signs of bed sores. By now it is nearing 8:00 pm and I am tired. I wonder where my humanity has gone...it is now hard to remember a time when I was not exhausted every day, anxious and depressed, helpless in the face of problems with no solution. I am now not much more than a list-maker...a runner of errands...a maker of phone calls. These lists never get completely checked off. The errands never cease. The phone calls lead to more phone calls...more paper work...more confusion.
I drive home in a daze -- just in time to kiss my daughter good night. She is reading in her room with my husband. I join them for the last few minutes and read a couple more pages of "Saying Goodbye". Then I go downstairs and prepare for the next day. By ten I am falling asleep in front of another old movie. My patient husband taps away next to me on his phone as I slide into oblivion.
As I fall asleep I remember where my humanity is. I understand that it is here and now. How much more human do we get than this? We live and then we die. But before we do, we need to take care of one another as best we can. My conflicting roles, at the present, are the most important part of my practice of life. It is an honor to be called upon, just a few times in a life, to be one of those persons who will become a helper. My parents are trusting me with this crucial role. My child is trusting me with it too. My humanity is wrapped up in my acceptance of this chance to show love. --It is enough to make me get up the next morning and get through another day. But one of the toughest parts of this is to reconcile everyone's needs (along with my own).
On the topic of emotional crutches: we all have them. This type of lifestyle (care giving) will drive many of us to over eat, others will begin to hit the bottle a bit too hard, or head out for 'retail therapy' after leaving one of the many depressing places on our weekly rounds. It is important to give yourself a break during this time. However, keep one eye on yourself and calibrate the damage you are doing to your own health and well being (both physical and psychological). Be prepared to address this once the worst of the crisis is past.
My crutches are television and music. Most nights I can be found hiding behind headphones, alone in my living room...or else staring glassily at a monitor. My drug of choice is retro TV from the late 50s, the 60s and the 70s. I prefer the grainy reception of ME TV (we do not have cable) to the slicker modern fare. When I see Robert Conrad or Martin Milner or William Shatner or Roy Thinnes or Rod Serling or anyone else from my parent's hey day, I find a celluloid replacement for the loss I am going to experience. I have no film footage of my own father from his younger days. The closest thing I have are these surrogates from his generation. The programs bring me back to my own childhood. Sometimes, if the lighting is dim and I close out the rest of the room -- staring right into the screen--I feel like I am in 1973 again. It is a miniature time travel. And I have to learn to wean myself from it eventually.
In closing, I think that each of us will experience death's arrival in the room in a very personal manner. No book can truly reflect our individual understanding of drawn out grief followed by inevitable loss. However, many literary people seek solace in reading almost reflexively. The information contained in this book -- and in many others-- can assist you in making a plan and dealing with your issues. It can be a basic palette onto which you paint your own version of saying goodbye.
November 3, 2025
This focussed a lot on family dynamics and relationships and logistics. It was more situational for people with much longer timeframes than my mum has. I wanted some more help about the emotional experience of being with a loved one as they die. Maybe looking for answers to this in a book is peak type-a get a gold star for grief stuff that I should speak to a therapist about. If the person dying has been terminal for a number of years this is probably a helpful resource.
January 6, 2024
The book offers a comprehensive guide on coping with a loved one's terminal illness, addressing both practical and emotional aspects. For example, it covers topics such as communicating with doctors, managing legal affairs, dealing with the complexities of extended grief, and planning for love's one's departure.
What I appreciate most about the book is chapter 18, "Celebrating a life". It teaches valuable lessons about balancing the sense of loss with celebrating the life of loved ones. This approach mirrors the inspiration my friend discovered in Mexico's Day of the Dead celebration and kindly shared with me. I especially like this quote from the book:
Additionally, the book enlightens on "carrying the grief," a notion I first met in Megan Devine's "It's OK That You're Not OK". Although the authors do not directly use this term, they offer a perspective that resonates with its essence:
Finally, the book dedicates considerable attention to managing changes in family dynamics, with a specific focus on extended family relationships. This aspect is particularly relevant for readers who have strong connections with their extended family, though it may be less applicable for those without such ties.
What I appreciate most about the book is chapter 18, "Celebrating a life". It teaches valuable lessons about balancing the sense of loss with celebrating the life of loved ones. This approach mirrors the inspiration my friend discovered in Mexico's Day of the Dead celebration and kindly shared with me. I especially like this quote from the book:
Part of celebrating a life is to recognize the ways in which it lives on: how our loved one has influenced us, and what parts of their personality live on in us.
Additionally, the book enlightens on "carrying the grief," a notion I first met in Megan Devine's "It's OK That You're Not OK". Although the authors do not directly use this term, they offer a perspective that resonates with its essence:
Grief, after all, is a crisis of identity as much as it is a crisis of attachment and separation. We are defined in part by our attachments. Who are we, therefore, as individuals and as a family, without this family member?
Finally, the book dedicates considerable attention to managing changes in family dynamics, with a specific focus on extended family relationships. This aspect is particularly relevant for readers who have strong connections with their extended family, though it may be less applicable for those without such ties.
February 24, 2019
Practical advice.
November 21, 2021
This was good although it felt pretty instinctual. I really like that is is open about the cast range of experiences and approaches to a terminal illness.
May 19, 2022
This was a thorough guide to the grieving process and the stories covered many scenerios and possibilities. It provided lots of useful information.
August 29, 2023
Offers practical advice although to me seems instinctual. I appreciated the stories and different ways that it showed different reactions and different ways family members grieved .
September 24, 2012
I recommended this book to several other people facing the illness of a family member. Even though I didn't actually finish the book as hubby died so I've moved on to Widow to Widow, I may go back at some time in the future and finish it just to have the information for next time or for a friend.
April 10, 2016
Helpful
I found the suggestions and the experiences of the people in this book very helpful. I have abetted understanding of the process I will be going through with my dad's cancer and how it affects the whole family. Really good suggestions regarding the things we should address I our lives to prepare for the next phase.
I found the suggestions and the experiences of the people in this book very helpful. I have abetted understanding of the process I will be going through with my dad's cancer and how it affects the whole family. Really good suggestions regarding the things we should address I our lives to prepare for the next phase.
April 25, 2017
Not a book you want to have to read, but if you need to, its definitely very helpful
August 15, 2020
Genuinely useful guidance.
Displaying 1 - 11 of 11 reviews