The death of your beloved spouse can shatter your entire world. There will be undeniable grief and sorrow as you mourn the love of your life. You might even begin to wonder how you’ll go on without them. For seniors who have possibly shared so many decades of their life with their significant other, it can be particularly difficult to move forward.
It’s important to realize that you are not alone. An estimated 800,000 people are widowed each year in the United States alone. Regardless of what some well-meaning people might tell you, there is not a “right” or “wrong” way to deal with the death of your beloved spouse. There is no specific amount of time you “should” take to grieve. The process is different for everyone.
Luckily, there are some time-tested words of wisdom that can help you cope in the weeks, months and years that follow the loss of your loved one:
First and foremost, give yourself time to grieve. During this process, you will undoubtedly need some support. Even for those with a solid support system and strong resilience, there is an unbelievable amount of grief that occurs when we lose our lifelong partner.
There will be some immediate needs that you will need to take care of, such as funeral planning and managing your household’s finances. It is common to feel overwhelmed by these sudden tasks – especially if your spouse typically handled most of the finances. Again, give yourself permission to reach out for help if you need it. Chances are, there might be a loving family member or a trusted friend who is willing to take on a few extra responsibilities to support you in this process.
Many people decide to move after the death of a spouse. This should not be a decision that is taken lightly, but instead should be made only after you’ve taken some time to really consider what is best for you. If you do eventually decide to move, you will want to properly handle and preserve any family heirlooms as items are either packed away into storage or donated. Not only do you want to protect the item, you also don’t want anything to get damaged in the process.
Regardless of whether or not you decide to move, you might also want to consider turning one of your beloved heirlooms into a memento. Choose an item that has special meaning to both yourself and your spouse, possibly something that reminds you of a happy memory or a certain aspect of his or her personality. Consider keeping the item and turning it into a keepsake that you can cherish for years to come.
As you work through your grief, you may look for other significant ways to remember your spouse. One excellent way to memorialize your loved one while also helping others is to start a nonprofit. As doing so can be complicated for those who aren’t familiar with the process, ZenBusiness offers step-by-step guidance on how to form your nonprofit. Especially if your loved one passed as a result of a specific medical condition or if there was a cause they were particularly involved in during their lifetime, a nonprofit can be a great way to raise awareness and funds while helping others in the process.
You don’t ever really get over the death of a spouse. But with patience and time, you will eventually get through it. Although the person you loved might be gone from this world in a physical form, they will always live on in your heart – and in your memories of your good times together.
As far as my life-defining experiences are concerned, caregiving ranks right up at the top, along with the illness and death of my father, and with parenting.
After living through difficult caregiving situations, I think it’s safe to say that most people do not want to burden their children. However, from what I observed when I worked as an Assessor at the Area Agency on Aging and what I experienced as a caregiver, I discovered that in the attempt to not be burdensome, parents become exactly that. Ironic, isn’t it?
It is my theory that young people think they don’t need to give caregiving much thought; current caregivers are too darn busy; and past caregivers want to put it all behind them.
In my opinion, the primary reason for this is the lack of communication about the topic. Talking with your children, and even grandchildren, about lifestyle choices and end-of-life care is extremely important.
But because we as a society generally practice avoidance and denial about the topic of caregiving, we delay our response until there are rapidly escalating needs or episodes of crisis with which to deal. Discussion and planning are not usually done “ahead of time”, but as an evolutionary process.
If you look back through my blog posts over the years you will find that I revisit this topic with frequency, as I do likewise with friends and acquaintances who are either embroiled in in caregiving or on the precipice of a cliff and ready to fall off.
A number of my friends contributed caregiver stories for my book What to Do about Mama? One of those was “Patricia” (See Patricia’s Story in What to Do about Mama? pp. 118-120).
Patricia had a sudden onset of cancer during the COVID pandemic. If you want to follow the complete story, go to the Newsletters tab above and sign up—either through my email address or one of the two videos. For the past six months I have been documenting Patricia’s experience with cancer and I will be glad to send you the back editions.
Another friend who contributed a story was Katie. She had two starkly different caregiving situations, one for her mother, the other her mother-in-law. (See Katie’s Story pp 122-126). Together, Katie, Judene, and I, along with our spouses who worked together in the steel making business, were friends. We have witnessed first-hand how life can change dramatically in an instant when a surgeon makes a mistake. Most notable is Katie’s personal experience when, at the age of 64, she suddenly became a poster child for the fragility of life, and she found herself in need of fulltime caregiving. (See Katie’s Update in What to Do about Mama? pp. 308-319.)
This friend, by the way, is one of those individuals who downsized her home and “got organized” proactively—and is now glad that she did. (See Patricia’s Update in What to Do about Mama? pp. 294-296).
“Judene’s ” had an extreme experience as a long-distance caregiving. (See Judene’s Story, What to Do about Mama? pp. 118-120). She also contributed an update where she expressed:
The problems and difficulties of caregiving tend to be repeated to some degree. It’s like anything else that is unpleasant that happens to you or a loved one. You don’t dig in to learn about what avenues are out there to assist you until you have a need for them. And we tend not to trouble our children or friends with unpleasant things, so they don’t have an opportunity to learn from our experiences, such as caregiving. Also, until faced with the problems directly, we often don’t learn even if someone tries to share their experiences. My husband and I have taken steps to prepare for our future; we have long-term health-care coverage. But I acknowledge there are additional things we should do, such as clean out the house; designate recipients of items; pre-plan our funerals; and make sure our will is in order. I guess we avoid said things because it’s just too much of a downer.
What to Do about Mama? pp. 288-289
And it is at this point I begin to feel like I’m beating a dead horse. I agree with Judene’s assessment about avoidance. She and her husband live in a beautiful home high on a hill with a long steep driveway and a yard that requires a lot of care and upkeep. Her husband cannot imagine not living in their home, nor do they believe in hiring anyone to clear the snow from their drive and to do the landscaping. A couple of years ago he participated in a senior triathlon and is proud of his physical condition—as well he should be. But as inevitable, he is now experiencing respiratory problems—and I am concerned that life is coming at them fast.
The following article, Caring and Grieving in the Shadow of COVID September 9, 2021, by Annika Vera brought me to tears. It also made me think of my friend Patricia.
I find myself crying these days at the smallest provocation. It wasn’t always like that. So I was drawn by a letter written to Barbara Karnes by a woman wondering why she doesn’t cry.
The reader’s letter listed a lot of tragic life events she had suffered. She was puzzled by the fact that none of these events caused her to cry in the way that people normally do and was wondering if this is an indicator of emotional strength or is just the ability to shut feelings out. She asks herself, “How am I able to not hurt because of these life events. Is it emotional strength?
Barbara Karnes acknowledged that this woman has experienced a great deal of death in her life—more than most. She could not, of course, explain why, but did offer up her thoughts.
Some people are criers and others, not so much.
The showing and expressing of emotions is individual, and so is grief.
The emotions of grief come out in some way—some cry, some show anger, some depression, some “tough it up” and move forward, some get physically sick.
Look at your reactions, expressions, and emotions and try to determine in what way you express grief: take on projects, work harder, run harder, keep busy so you don’t think or feel, sleep more or less, anger quickly, experience frustration, feel unsettled or aimless.
It isn’t how many tears we shed that shows our grief; no tears doesn’t mean we don’t care or don’t feel; we all experience and express grief in our own individual way—a way that works for us.
The article caused me to reflect on my own history of crying, a subject I broached throughout the writing of my memoir, An Imperfect and Unremarkable Grandma, in 2015. At that time, I was dealing with the disappointment of my daughter moving away with her husband and my three grandchildren. They had lived nearby for ten years, ever since the birth of grandchild #1. Looking back, I realize that writing was my way of working through the emotions of my lifetime.
One morning in late November during my sixth-grade year, I got up to go to school and discovered that my father was sick in bed and unable to go to work. I felt concerned because this was very unusual. Daddy’s conditioned worsened and he was hospitalized with a medical crisis. The doctor told my mother that our father might die. While Mom drove us home that night, with my older brother in the front seat and me alone in the back, she told us that Daddy had leukemia. Mom tempered the information by saying that he might have another four years to live. We were instructed not to tell anyone, including Dad. This is the way cancer was handled during those times.
(Actually, in those days all sorts of issues were kept hidden away “in the closet.”) It became “our secret,” and was never discussed. Mom did not even tell her very best friends. It was at this point – just as I was about to turn eleven years of age – that my childhood came abruptly to an end. Although I was chronologically still a child, I now felt an oppressive weight upon my shoulders. My girlhood was interrupted. I dealt with my emotions by getting into the bathtub and running the water so that I could cry and not be heard. In this way, I taught myself not to shed tears. I became numbed, and except on a few rare occasions, I did not weep readily for at least a half-dozen years.
An Unremarkable and Imperfect Grandma
The ability to cry again developed gradually over the years. But it was about the time that my children were launching into adulthood that the crying began to accelerate.
First when my son enlisted in the Air Force. (I spend months of agonizing only to have the doctor deny his admission at the last moment.)
After the beginning of the New Year, in 1992, the crying began. I would often tear up, especially when my son played, I’m Leaving on a Jet Plane by Peter, Paul and Mary on the stereo.
An Unremarkable and Imperfect Grandma
Next when my daughter went away to college.
When my oldest daughter left home to start college, the crying commenced. I frequently wandered into her room in the middle of the night to quietly weep. It felt so empty without her.
An Unremarkable and Imperfect Grandma
Even when my niece was married on October 21, 2001. (Of course, I had also been crying daily for weeks beforehand while reading the plethora of reports about 9-11.)
The couple performed a waltz to music from the movie Legends of the Fall. Their dancing was so graceful and beautiful in this “Old South” setting that I was moved to tears. My daughter took one look at me and said, “You didn’t cry at my wedding.” I enlightened her with the following explanation: “I was unemployed and on antidepressants at your wedding
An Unremarkable and Imperfect Grandma
When my younger daughter and her husband put down their dog.
Then one morning my son-in-law woke up to find that their dog had truly lost control of his physical abilities. The vet was called to come to their house to put their beloved pet to “sleep” surrounded by the family that loved him. When my daughter phoned me to tell me what they were doing, I got off the phone crying. I am not a “dog person” by any stretch of the imagination. “Tell me what to do,” I sobbed to my husband, “I don’t understand why I’m feeling like this.”
An Unremarkable and Imperfect Grandma
These days I find myself crying at every provocation, big or small. I can’t get through the mere telling of a tale without struggling with tears. I remember that my husband’s grandmother used to do the same thing. I can’t figure it out, and frankly, it’s embarrassing. But then there is a pandemic going on, so maybe I should just cut myself some slack.
I would suggest to the woman who wrote to Barbara Karnes: Don’t fret about it. Just allow your emotions to evolve.
Grief. It makes some people uncomfortable. According to the In the June 23, 2021, Advocate for Mom and Dad article: How To Help Somebody You Love Through Grief by Kate Romeo, when people don’t know how to deal with an uncomfortable situation, they often just don’t. Instead, they may shy away from the opportunity and simply let the other grieve alone in silence. This is not heathy—not for the person who is grieving, nor for the person who is avoiding their own discomfort. To help someone you love through grief, Romeo recommends the following:
Understand the Grieving Process. Acknowledge that everyone deserves to process their grief in a healthy way.
Think About What To Say To a Grieving Loved One. Be prepared to acknowledge the individual by listening to the bereaved one talk about their loved one’s passing—or even sit in silence with them while they process their emotions. Don’t be afraid to express your concerns and emotions, as well.
Offer Some Help and Support Them. Demonstrate your continued support by helping out during the difficult times when their functioning may be limited.
Watch For Signs of Depression. Be on the alert for difficulty functioning with daily life, a proclivity to focus on death, and even evidence of hallucinations.
Death and dying is one of the most difficult passages we travel with our loved ones. There may be a lot of “self-help” books out there, but no “instructions,” per se. When you discuss the topic with other people, it becomes apparent that the differences in how people perceive end-of-life issues are vast. Everyone has his or her own values and beliefs (based on their unique life experiences), and emotions can run quite high.
From Jenna’s Story: However, toward the end it was my siblings and I who supported my mother’s physical health and my father’s emotional health, as his anticipatory grief was larger than I think even he realized.
In addition, I found that being able to talk about my mother was so very important. Oftentimes, when someone dies, no one wants to mention the person’s name to the close family members who are grieving. Even to this day—three years later—this still happens. But, I find that being able to share stories about her makes me feel better.
From Amelia’s Story: People feel uncomfortable saying anything, so no one really expresses what they want or don’t want. Maybe they worry about hurting feelings; maybe it’s too emotionally painful to make difficult decisions. People think it won’t happen or want to pretend it won’t happen. They adopt the approach, “Since I don’t know what to say, I won’t say anything.”
From Ellen’s Story: When my mother passed away, I felt lost. It was like losing a child. I felt unneeded—like I had lost a lot of my importance and purpose in life. Caregiving took up a large percent of my day, and suddenly having so much time on my hands was a difficult adjustment for me. I went through years of depression after losing my mother, who was also my best friend. Over the years, our mother-child roles had reversed so much.
From June’s Update: I sat vigil for most of the twenty-four hours. My husband, daughter, and son were with me for most of the time. I sent them home around eight p.m. All the clinical signs of impending death were there, but she didn’t want to let go. She was unresponsive, but at one point, when my family was with me, I attempted to do mouth care with a sponge/stick. From under the sheet, up came her fist, which she shook at me. We looked at one another and laughed. She was still mad at me. That was so Mom. Around five a.m., I had this strong feeling that she did not want me there. It was so clear. I packed up, alerted the nurses, and drove home. I had just fallen asleep when the nursing home called me to say that she passed. I did not feel any guilt. I knew that was what she wanted. Surprisingly, I have moved on with great peace.
What to Do about Mama? pp. 224, 279, 280-281, 277, 282, 286
Why? Because her advice is the anthesis of what I would do—and actually have done. It’s against my nature. I’m a minimalist—the kind of person who is always paring down, cleaning out, and organizing.
I used to teach in a prison and there was a video I would show to my class with the coolest down-to earth counselor who had a way of explaining things in a way that just “hit it on the head”. The video featured this little girl who was like a “little mother”—always cleaning up. The counselor explained the child’s behavior by pointing out this was her way of trying to exert some control in her life. It was a coping mechanism to counter the uncontrollable situations in her environment.
For me, this counselor’s explanation was an “AHA” moment. It brought some light to my own behaviors.
Barbara Karnes received a letter asking for “guidance to family members who have lost a loved one regarding how to manage the process of cleaning out the residence of the person who passed away.”
The approach I have personally taken—one which I have often recommended—is to do it ahead of time. I have addressed this issue in my book, What to Do about Mama? by saying “I will not leave my children the burden of my messes.” (p. 332).
As my mother-in-law would say: “There’s always mañana.” She left the daunting task of downsizing and distributing her belongings to her children—a process that happened several times as her circumstances changed.”
As with everything, I suppose, there are different ways to look at the chore of having to allocate and dispose of your parents’ belongings. Depending on how they confronted that task, you will most likely have to deal with it, at least to some degree. That process can be formidable to be sure, but it can also be meaningful and healing from a nostalgic point of view. In light of my own caregiving experience, I am determined not to leave my children the remnants of my life in a state of disarray. I have always appreciated that my mother did not do that to my brother and me, and I was never happy about the fact that my mother-in-law did exactly that. So, downsizing became the first project on the top of my list. David and I went through all our storage areas and closets, paring our belongings down to whatever we truly needed or wanted. Next, I made a detailed inventory of our belongings. An appraiser came over one evening and gave us a verbal appraisal of many items on the list. Then, I distributed the inventory to our children so they could express what they were interested in having someday. It was like pulling teeth to get them to do it. I found it impossible to make hard-and-fast decisions but did manage to come up with a system that I think will make it easier for our children to distribute, donate, and dispose of our belongings. “
Barbara Karnes recommendations, are quite different:
First, if you don’t have to clean out belongings, don’t for awhile, wait even months if necessary. There can be great comfort seeing and holding something they treasured or used. In the early days of grief, their belongings can bring comfort and will help you.
Second, don’t make any major life decisions, like selling the house, moving in with family, spending large sums of money, or investments for at least a year. That year will give you time to think with your mind not your emotions.
Now, some people can’t wait months, even weeks, let alone a year. Decisions have to be made right away. If that is the case think of what you can keep, even if the material items aren’t needed but have sentimental memories—-keep them for awhile, you will know when you can let go of them. Err on the side of keeping.
Adult children often rush in and organize us elderly, thinking they know best. This is a reminder to you adult children to be gentle, try to put yourself in your loved one’s situation and ask how you would feel and what would you want if it was you living this life challenge of releasing a lifetime of memories and often independence.
There are companies you can hire that will help you downsize, relocate, organize the “house item releasing.” These people are sensitive to the emotional needs and experience of having to part with possessions accumulated over a lifetime–or not.
When moving in the time of grief, letting go of material items is like letting go of the memories those items hold. It is an added burden to an already emotional assault on our idea of living.
I live in a condominium community which—though not specifically a 55+ community—is largely a 55+ community. In the year of the pandemic, our neighborhood has found itself in a state of transition, with some of the residents leaving to progress up the ladder of senior living options, and others passing away. One gentleman sold his home, downsized, and moved to a nearby assisted living facility—a difficult relocation during the coronavirus. Though admittedly of advanced age, I was still surprised when I saw his obituary in the paper only a few weeks later. Now I wonder:
Dying Well. These words are, I suppose, a good example of an oxymoron. It’s something I think about with frequency these days—mainly because of the reports about those dying of the Coronavirus—which seems to me to be: Dying Unwell. And then there’s the recognition that more of my peers are dying these days—including those that are my counterparts in our family. In this case, I’m referring to my grandchildren’s “other” grandmothers. Two of them died of cancer, but—from my perspective—only one of them “died well”. The other? Not so much so.
Why? The first family confronted the topic of death head on. This counterpart grandmother was in the driver’s seat of her death as I suspect she was in life. The second family denied and avoided the topic of death. It appeared to me that this counterpart grandmother did not experience death on her own terms.
I am a strong believer in talking about life’s uncomfortable situations. I adopted that standard from the time that I realized how destructive it was to live a life of unspoken secrets—the life I’d lived since the approximate age of ten, when I first learned that my father had been diagnosed with a terminal illness and was only expected to live another four years.
As children, we are formed by the people, places, and events in our surroundings that are consigned to our formative environment without choice. The circumstances surrounding my father’s illness and death were not only heartbreaking—they impacted my ability to cope effectively. I was ill-equipped.
Development depends on the interaction between internal and external forces. Honesty and openness are good policy; duplicity fosters insecurity. Nothing was open or honest in how my father’s illness was handled. And then he died.
My life took a new direction late in 1958 when one morning I got up to go to school and discovered that my father was sick in bed and unable to go to work. I felt concerned because this was very unusual. His condition worsened and he was soon hospitalized with a medical crisis. The doctor told my mother that our father might die.
That evening, while my Mom drove my older brother and me home from the hospital, she told us that my father had a blood cancer and that he might have another four years to live. We were instructed not to tell anyone, including Dad. This is the way cancer was handled during those times. It became “our secret,” and was never discussed.
It was at this point—just as I was about to turn eleven years of age—that my childhood came abruptly to an end. Although I was chronologically still a child, I now felt an oppressive weight upon my shoulders. Girlhood was interrupted.
During my father’s last health crisis, he traveled to the Mayo Clinic for treatment. According to the policy of that institution, he was told of his diagnosis honestly for the first time. He contracted pneumonia and died there, never having returned home. We never got to say, “I’m sorry” or “I love you” or even “Goodbye.”
Grief is agonizing, and childhood grief is among the most excruciating forms. It deprived me of the opportunity to give love to my father and to be loved by him in return. I was alone in my grief; there was no one with whom to share the sorrow. During the time of my father’s illness, his death, and the years beyond, my mother was just not capable of attending to her own grief and to the emotional needs of her children as well.
Childhood trauma and the corresponding “loss” of childhood were the extreme hazards of my formative years; they required extraordinary coping skills that I had not yet developed. Without the benefit of an understanding and compassionate parent figure, I was vulnerable and needy. As a child left on my own to manage —how could I have remained emotionally healthy? My recovery was arduous, exhausting, and difficult to accomplish. It was grueling because there was so much, it was so intense, and it lasted so long. It was life-altering on a permanent basis.
If I were to choose what life experience defined me most, I would have to say it would be the unresolved grief due the death of my father. As a wounded child—I was forever changed.
I was at a caregiving conference many years ago, and attended a hospice workshop. A comment was made about the support systems available to children to help them through the trauma and grief of losing a parent. Upon hearing that comment, I found myself suddenly in tears, and thought, “Oh…if they would only have had something like that when I was a kid!”
It’s pointless to debate which types of grief are the worst—the hardest to bear. Grief hurts far beyond ordinary words—it is profound sadness; it takes your breath away because it aches so much. The child’s loss of a parent is one of the most difficult forms of bereavement, and childhood grief is among the most damaging. It confronts the child with the difficult task of adaptation. It requires the guidance of a capable parent figure, someone from whom to draw strength, someone to receive and relieve the child’s distress.
The death of a parent is life-altering on a permanent basis; it is a severe emotional wound and engenders a longing of incomparable amount, intensity, and longevity. The pain of my father’s death was exacerbated by the fact that it was verboten for us to talk to him about it or even to our mother for that matter—ever.
It has now been nearly sixty years, and yet the pain of it never goes entirely away. Although acute mourning subsides, we remain forever changed. I was literally formed by the conditions and context of how my father died.
Eventually, bottling up became so profoundly painful, that I did a 360 degree turn and became blatantly honest—a characteristic that set a whole new set of complications into motion. Any attempt to hold back and to be more prudent with my remarks just creates anxiety. For me, the consequences are better than the alternatives. This is why I cannot just ignore problems and move on; I have to actively deal with them before I can put them away.
Honesty. Openness. Love. Memory. Communication. I believed this was the route to strength and growth. I believe that the journey would have been less difficult if that approach had been used from the onset. I think the following NPR TED Radio program “Dying Well” bears this out.
On this program, Jason Rosenthall shares the story of his wife Amy’s death from Ovarian Cancer.
Amy wrote an essay about her life, her husband, and her impending death. She said, “My husband is a great guy, and he’s available.” Although she wanted to spend more time together with Jason and their children, she wanted to liberate them to move on in life without her. She did that by saying, “You may want to marry my husband,” with the hope that if the right woman would read it, find Jason, and another love story would begin. Amy wrapped it all up on Valentine’s Day.
On the TED Talk, Jason tells his Story of Grief:
Our love grew up until last day. I have memories that haunt me, such as when I carried Amy’s lifeless body downstairs and through the house to the gurney waiting to take her to be cremated. I will never get that out of my head.
He admits that milestones are always difficult to get through, such as his son’s college graduation, and his own birthday. “There’s always something to remind me of our life together.”
I could not stand to be alone with these feelings and images. I want to take the taboo out of it; to talk about it and not be afraid of it. Thanks to Amy, he learned how to talk about dying without fear, to make plans while there is still time, and to plan for a good death. He says its better to have these conversations while healthy, and that being able to talk death openly was liberating.
Your tribute to your father is touching. Although I do not follow any particular rituals in the mourning of my father, something I have done for nearly 60 years, I find that every milestone crossed is accompanied by the thought: I wish he could have known ______, or experienced _______, or that we could have shared _____. His death, and the circumstances surrounding his death were formative to who I grew to be as a person. The pain of losing him never goes away completely, and I know by now that it never will.
Cherish your memories and be thankful you have them.
In Jewish tradition, we tend to commemorate the dates (on the Hebrew calendar) of our loved ones’ deaths, rather than their birthdays. Same goes for historic figures like our Jewish sages of the many centuries.
Generally, as somebody who deeply appreciates and respects his people’s traditions, I tend to think of them as frameworks for expression of human experiences. I don’t believe that they were designed by or mandated by God, but I do believe that they reflect and are the culmination of many, many centuries of Jewish wisdom.
But the truth is that I often find our traditions to be… lacking? No, not quite lacking… insufficient? At least – insufficient for me. The practice of reciting the mourner’s kaddish on a daily basis during the first year of mourning for a parent was –…
I will admit to the fact that I have pretty strong feelings about life and death issues.
I hold to the belief that quality of life supersedes quantity of life.
Although I understand the practical reasons that nursing home residents and older people in general are the top priority for COVID vaccinations, I struggle with the concept that young people—with most of their life ahead of them—must wait for someone like me—with most of my life behind me—to get vaccinated.
When the hospice spiritual advisor asked my mother-in-law if she had ever considered stopping treatment, she said no, that her goal was to live to one hundred and that she didn’t want to miss anything. To be honest, the thought that ran through my mind was, “Is there no end in sight?”
I thought my daughter-in-law’s mother exhibited profound courage and strength when she decided not to treat her stage four cancer after an unexpected diagnosis.
I support the perspective expressed by Ezekiel Emanuel in his article “Why I Hope to Die ant 75,” which appeared in the September 2009 edition of The Atlantic. (Emanuel was recently named to President Biden’s COVID-19 Advisory Board.)
“It is Emanuel’s contention that―whereas death may deprive us of experiences and milestones; of time spent with our spouse, children, and grandchildren; indeed, of all the things we value—living too long is also a loss. It renders us disabled, or at least faltering and declining. It robs us of our creativity and ability to contribute to society and the world.
Even if we manage not to become burdens to our children, our shadowing them until their old age is also a shortfall. It transforms how people experience us, relate to us, and remember us—no longer as vibrant and engaged—but feeble, ineffectual, and pitiable. It is indeed such memories that are the ultimate tragedy.
Americans might live longer than their parents, but they are likely to be more incapacitated, both physically and mentally. Although we are growing older, our older years are not of high quality. Health care has not slowed the aging process so much as it has slowed the dying process.
So, yes, I am in agreement with Emanuel. I want to die with respect and without aggressive care—no ventilators, feeding tubes, dialysis, surgery, antibiotics, or any other medication—other than palliative care; in other words: no life-sustaining interventions. A do-not-resuscitate order and a complete advance directive have been written and recorded (even if I am conscious but not mentally competent). I do not want my “consumption” to outweigh my ‘contribution.’”
What to Do about Mama? pp. 300-301
I also admit, ITS’ COMPLICATED.
Hidden Brain
This becomes abundantly clear in The Caregiver Space article, “The Ventilator: Life, Death and the Choices We Make at the End”, November 19, 2020, and its accompanying Hidden Brain Podcast.
In the Podcast John Rinka tells his wife’s story. Stephanie was a nurse with a strong opinion about quality and quantity of life (much like mine). Together they had ongoing conversations about end-of-life issues, and Stephanie was always unequivocal—she wouldn’t want to be kept alive if her quality of life was gone. But then Stephania became a victim of ALS and the Rinka family discovered that choices prefered when we’re healthy may no longer make sense to us when confronting death.
As John Rinka shares:
Seemly rational choices you make when you are happy can change when you are facing death.
“I can’t live that way” becomes “I want to see tomorrow.”
When there is no more hope, every day just gets worse.
She could have lived peacefully with dignity but brought misery upon herself and her family.
We were overwhelmed with daily challenges and the progressive decline.
The feeding tube was a big decision but when Stephanie chose the ventilator I was floored; this was not the way she ever wanted to live.
Their son Jason shares with us as well:
It was like having two moms. One, the rational mom and experienced nurse; the other, the mom who wanted to live until tomorrow.
The mistake is in thinking you know the choices you would make in the moment.
She wasn’t thinking rationally–but only, “I’ll have tomorrow.”
I don’t want to go through that—I don’t want to be a burden to my family. But the reality becomes: “Are you ready to leave this?”
Most poignantly, John sums is up by saying: “I would relive any of those days before the ventilator, but there’s not one day you could pay me enough money to relive after the ventilator.
We all have more than one version of ourselves, each with different desires. Fear, confusion, and love make easy decisions difficult.
Another interesting perspective is expressed in the January 21, 2021, Barbara Karnes article: The Scar In Your Heart: Grief In End of Life Care
Karnes received a comment from a hospice nurse who said: “The JOY of hospice was mine for years. I could easily see the beauty in almost any end-of-life situation. Then, my dad died on our service in 2015. I continued to work for hospice for the next three years but after my dad died I couldn’t see ANY beauty in end of life. I completely walked away in 2018. I don’t know how to “get it back.”
Barbara Karnes responded that when someone in a professional role is facing a loved one’s end of life, they are confronted with entirely different perspective. The dying is personal and therefore has a different impact. Entering a patient’s home after the death of a loved one touches and rubs the professional’s grief wound.
Caring for people at end of life has its own unique challenges. Hospice, Palliative Care and Home Health agencies need to deeply support their staff or they will suffer from compassion fatigue.
Grief in Children Rea L. Ginsberg, LCSW-C, ACSW, BCD- Guest Blogger
The above post struck me to my core–and this is why:
Nearly sixty years. It never goes away. It formed who I became. In the late 50’s and early 60’s my father’s lymphoma was a “secret” that only his wife and children knew. After informing her 11 and 15 year old children that their father had a fatal illness, our mother rarely spoke to us about it—except, for an example, in retort to my question, “Can we have another baby?” “You know your father is going to die!” Bottling up became so profoundly painful, that both my brother and I became outspoken adults. For me, that doesn’t always have good results, but it is better than the alternative. The writing of my book, “What to Do about Mama?” and my blog of the same name, have brought my formative years into even greater focus. This article has made me wonder how I made it through adulthood without more “pathological developmental distortion or arrest.” Also see my blog post for more on the topic of grief: Different Perspectives on Grief
Here are some excerpts that really hit home:
It seems senseless to debate which types of grief are the worst. Which are the hardest to bear. Every form hurts so very far beyond normal limits, beyond ordinary words. Profound sadness. It takes our breath away. It aches that much. Every form requires extraordinary coping skills. Every form holds its hazards. However, this childhood form does appear to be among the very worst.
Only in childhood can death deprive an individual of so much opportunity to love and be loved and face him with so difficult a task of adaptation….The death of a parent engenders a longing of incomparable amount, intensity, and longevity.”
The child’s loss of a parent is one of the most difficult forms of bereavement.
Recovery is arduous, exhausting, and hard to accomplish. The death of a parent is life-altering on a permanent basis. It is a severe emotional wound. It is traumatic.
“Although we know that, after such a loss, acute mourning will subside, we also know that a part of us shall remain inconsolable and never find a substitute. No matter what we believe may fill the gap…we will nevertheless remain changed forever…”
From their many experiences with children, child psychotherapists tend to agree that the child’s mourning process never does entirely end, nor should it. The mental representation of the lost loved one, the memories and an accompanying degree of longing, remain with the child through childhood and adulthood – throughout his lifetime.
The child is indeed bereaved, but he himself is in need of a caregiver.
This troublesome outlook for the child can be mitigated by the understanding and compassionate presence of the other parent or another adult. Even an older sibling can soften the hardship. Someone must be there to receive and relieve the child’s distress. The child cannot be left alone to cope with loss and still remain healthy – both in mind and in body. Sorrow must be shared. Every person needs to know he is not alone with grief. The child is especially vulnerable and needy in this respect.
Children draw great strength from their caregivers. The child needs the love and gentle guidance of a perceptive, patient, and capable caregiver.
We know from those studies that children were least traumatized when the primary caregiver – usually but not always the mother – remained close, loving, calming, and comforting. Children’s reactions to loss depend mainly on the reactions of the primary caregiver.
The interaction between internal and external forces decides between the possibility of normal developmental progress and the incidence of pathological developmental distortion or arrest.”
If the child’s caregiver is the other parent, we have come full circle, returning to the bereaved caregiver. Grief is not optional. The caregiver must attend to his own grief and to the grief of his child. Perhaps, in some important sense, parent and child comfort, soothe, and reassure each other. They support one another. The feeling of deep sorrow is shared. The process and progress of the caregiver’s bereavement is then highly significant not only for himself but also for his child. The child’s mastery of his situation depends substantially on the caregiver. It is a large responsibility. Honesty and openness are virtually always good policy with children. The subject of death will carefully follow this pathway – when the caregiver is strong enough and wise enough to pursue it. He will know intuitively how to listen well and respond to the child’s expressions of grief.
No hurry to heal. No pressure to “snap out of it.” Honesty and openness. Love. Memory. A firm, soothing hand to hold. Talking. It takes only one human being who cares. That is the route to strength and growth.
This column, “God Squad” by Rabbi Marc Gellman examines the moral issues of being honest about terminal illness. Personally, I tend to look at life in terms of “gray areas” rather than black and white. But Rabbi Gellman was clear in his statements:
The fundamental moral belief about illness is that knowledge conveyed by a doctor belongs to the patient and to no one else.
As long as therapy is possible, patients ought to take advantage of any clinically proven therapy, however, when therapy is no longer possible it is the patient’s right–and it’s also the right thing to do –to let the end come when it comes. (See my June 29 post “My Counterpart: a Go-To Granny)
To choose NOT to tell someone they are dying is a paternalistic attitude that is not morally justifiable or spiritually sound. To be deprived of this knowledge is to be deprived of the ability to say goodbye to life and those we love.
I feel that this article will be very reassuring to people who are struggling, or have struggled, with the issue of death and dying. It was also very validating to me, since my life was so profoundly impacted secret-keeping, when my father was lied to about his terminal illness during the late 50’s and early 60’s. (See my August 14 post “Different Perspectives on Grief).
You may want to revisit some of my other older posts about this difficult topic:
“Three abstractions: love, time, and death. Love, we all long for it; time, we all want more of it; and death, we fear”- from the movie; Collateral Beauty
What to Do about Mama? 