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.
Such a young woman with so much on her plate. When her mother had brain surgery to remove a tumor in May 2020—
- She thought that was the most difficult thing that could happen during the pandemic.
- She thought once her mother recovered, her caregiving role would end.
- She thought she would go back to her life as a “normal” 20-year-old woman.
Three weeks before her 21st birthday, less than two months after her mother’s surgery—
- Her mother was diagnosed with breast cancer.
- (“My role as caregiver had only just begun.”)
- The COVID-19 pandemic—a another layer of stress and anxiety on top of the “cancer stuff.”
- I was now living with an immunocompromised person
- From July 2020 to March 2021, we were isolated—no work, school, family, or friends.
- We only saw doctors and nurses at the hospital.
- The fear of COVID was so intense that it almost became a distraction from the cancer.
- Her focus changed from curing an illness to not contracting a virus.
- Cancer brought uncertainty about life and death—
- Contracting COVID ascertained the outcome would be bad.
- Chemotherapy was a game of “Will they let me in with her not?”
- Often she would be left to wait outside the glass doors for hours.
- Every day she watched as the drugs made her mother sicker and sicker.
- Then the cycle would repeat.
- But another tragedy began to unfold.
- Her grandfather had cancer, too and was declining quickly.
- He was overseas so they were unable to visit.
- Watching him die over a video call—a surreal nightmare.
- He passed away without our seeing him one last time.
- Being a caregiver to someone very ill—helpless.
- Watching a loved in another country pass away over a video call—powerless.
- We have very little control of our lives, but…
- I got through the last many months of hell.
- I continue to wake up to whatever the next day brings.
- The strength comes when you think you can’t go on, but you do.
- Although we are weak, sick, and grieving—we are at the same time—stronger.
A few days before Christmas, Katie had brain surgery—but tragically, she was one of the 2%. The surgeon punctured a blood vessel in her brain, and she did, indeed, suffer a stroke. The following day she had additional surgery—a portion of her skull was removed to relieve the mounting pressure on her brain. Katie survives. She has a tracheotomy and a feeding tube.
A number of weeks later her husband, Sam, told us that it had all sounded so positive. Of course they knew there was a risk of unsuccessful surgery and DYING, but they had just not considered the risk of unsuccessful surgery and LIVING.
Katie was in a coma for several weeks. The doctor recommended that she go to a rehabilitation facility that specialized in stroke and coma therapy. The insurance company denied this course of treatment and she was sent to an acute care facility instead.
When we visited, we would talk to Katie and ask her to squeeze our hand if she could hear and understand us. Often we felt a light squeeze—but we did not know for sure what that meant. During one visit I read the following nurse’s note entered into the journal: “I put a washcloth in the Katie’s hand and told her to wash her face, which she did.” Shortly afterward, Sam arrived and I pointed him to the journal. This was the first real indication that Katie’s mind was able to receive and to process. When Sam read it, he just broke down. His relief was palatable.
Katie began to gradually emerge from her coma. The strangest and most difficult adjustment for family and friends was that Katie, normally vivacious well-beyond the average, now had no expression at all, but a totally flat affect. Her one means of communication, and her only means of expression, was her right arm (much like the story of Christy Brown portrayed by Daniel Day-Lewis in the 1989 movie: My Left Foot.)
Katie received some physical therapy at the facility, but was not able to reach benchmarks. She was then sent to a rehabilitation facility where the cycle repeats itself: Katie emerges slowly; she is unable to meet benchmarks; insurance is discontinued. The next step is to a sub-acute rehabilitation facility—a nursing home.
On December 19, 2012, Katie went to work and spent a busy day with patients at the doctor’s office where she worked. On December 20th, her life changed forever. In May 2013 she turned 65. She resides in a nursing home. With the use of only one of her limbs, she is bedbound, or more accurately…
There’s a TV in the weight room at the gym where I go to attempt to stave off old age. Sometimes I catch the Steve Harvey Show, and have, on a couple of occasions, seen two cute and charming little old ladies who have been best friends for nearly 100 years. At those times I have commented to whomever is around, “I don’t want to live to be 100, but when I see these two ladies I reserve the right to change my mind.”
In The Atlantic article “Why I Hope to Die at 75,” Ezekiel Emanuel (Director of the Clinical Bioethics Department at the U.S. National Institutes of Health, Department Head of Medical Ethics & Health Policy at the University of Pennsylvania, and former advisor on health policy for the Obama Administration) makes a similar remark: “Seventy-five years is all I want to live. I retain the right to change my mind and offer a vigorous and reasoned defense of living as long as possible.”
Emanuel might also say that I am “making a valiant effort to cheat death and prolong life as long as possible”—that I am one of the cultural types he labels, “the American immortal.” But actually, he would be wrong. What I am actually trying to accomplish is maintaining the best physical abilities and quality of life that I can for whatever years remain in my life.
For you see, although I find Emanuel’s chosen age of 75 to be somewhat arbitrary (which he acknowledges) I do, overall, agree with what he has to say. What follows in a synopsis of some of his remarks, which I will illustrate with my own life experiences, as well as previous blog posts. Unfortunately, the older I get the more death-related life experiences I have to relate.
To see the full article, click on:
Why I Hope to Die at 75: An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly.
Ezekiel J. Emanuel is 57 years old, and has the year 2032 as his target date to “check out” because—“Seventy-five. That’s how long I want to live: 75 years.” Now I’ve got to tell you, Ezekiel, that age is making me a little squeamish because it gives me just 9 more years. I don’t think I will have done or seen all that I want to in that amount of time. But it does give me some leverage to say to my husband, “Look Don. We really need to get on the stick and start seeing the world!” (He’s always putting his retirement and our travel off for later.)
But, Emanuel is sure of his position, despite his assertion that : death is a loss; it deprives us of experiences and milestones, of time spent with our spouse and children; and, in short, of all the things we value. But he also sees as simple truths:
- Living too long is also a loss.
- It renders many of us either disabled, or at least faltering and declining.
- It robs us of our creativity and ability to contribute to work, society, and the world.
- It transforms how people experience us, relate to us, and remember us (as no longer vibrant and engaged but feeble, ineffectual, and even pathetic).
My husband and I were his mother’s caregivers for seven years, four of them in our home. This is, indeed, the process of decline we observed on a daily basis. She used to say, “I want to live to 100. I don’t want to miss anything.” One of the thought that crossed my mind at those times was that I do not want my grandchildren to remember me that way.
Emanuel states that by the time he reaches 75, he will have lived a complete life having: loved and been loved; seen his children grown and succeeding; seen the grandchildren launched; pursued life’s projects and made contributions. If he dies after these accomplishments and before he has too many mental or physical limitations, his death will not be a tragedy.
In 1994, my father-in-law passed away suddenly in his sleep one night. He had even played tennis the previous morning. Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at 8:00 in the morning, but shocked when she nudged him and he did not respond. Yes, it was a shock, but he died in a way that many of us would “like to go.” Although there was a profound sense of loss, his death was not a tragedy.
On the other hand, my father died in 1963 at the age of 48 after four years of a “secret” illness. He left a young wife and two teenage children behind. He was forever deprived of the ability to say goodbye to life and those he loved. To me, this was a tragedy.
For further information about my life-altering experience, see:
Different Perspectives on Grief
Missing Childhood: The Overlooked Caregivers
People cope with death in many different ways – The Patriot-News
It is important to note, however, that Emanuel is clear:
- He actively opposes legalizing euthanasia and physician-assisted suicide.
- He believes that the focus should be on giving all terminally ill people a good, compassionate death.
- He will limit the amount of health care he will consent to after 75.
I followed with interest (and posted in this blog) the case of Barbara Mancini. I believe it fits well with Emanuel’s discussion about terminal illness. Mancini is a Pennsylvania nurse who was accused of helping her 93-year-old father commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die. Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.
Emanuel states that although Americans may live longer than their parents, they are likely to be more incapacitated, both physically and mentally. In other words, we are growing older, but our older years are not of high quality. Over the past 50 years, health care hasn’t slowed the aging process so much as it has slowed the dying process.
I have a dear friend who was diagnosed with a brain aneurism when she was 64. Because she feared having a stroke, she elected to have brain surgery. She suffered a traumatic brain injury during surgery resulting in a stroke, additional surgery to relieve the pressure on her brain, 6 weeks in a coma, and the inability to use 3 of her 4 limbs. A once vital, vivacious woman, she now lives in a nursing home, a shell of her former self.
But even if half of people 80 and older live with functional limitations, and a third of people 85 and older with Alzheimer’s disease, that still leaves many elderly folks who have escaped physical and mental disability—who are functioning quite well. Emanuel contends, however, that even if we aren’t demented, our mental functioning deteriorates as we grow older. As we move slower with age, we also think slower, and lose our creativity—backing this concept up with the following chart:
Emanuel recognizes that there is more to life than being totally physically fit, productive, and creative, and that many people want to use their life experiences to mentor successive generations. But, he argues that when parents live to 75, children have had the joys of a rich relationship with their parents, but still have enough time for their own lives, out of their parents’ shadows. He feels that living too long places significant burden upon our progeny, stating, “Of course, our children won’t admit it. They love us and fear the loss that will be created by our death. And a loss it will be. A huge loss. They don’t want to confront our mortality, and they certainly don’t want to wish for our death. But even if we manage not to become burdens to them, our shadowing them until their old age is also a loss. And leaving them—and our grandchildren—with memories framed not by our vivacity but by our frailty is the ultimate tragedy.”
My daughter-in-law’s mother passed away last summer 5 months after a sudden diagnosis of colon cancer that had spread to her liver. She opted not to undergo treatment, which might have extended her life, but not have allowed her to live as she wanted. Because she was only 68, her decision was very difficult for her husband and children to accept. I truly admired her for the strength of her convictions and the courage of her choice in making what must have been an incredibly difficult decision.
See: My Counterpart: a Go-To Grammy
So, since Ezekiel Emanuel does not believe in assisted suicide, what does he say he will do, once he has lived to 75?
- “My approach to my health care will completely change. I won’t actively end my life. But I won’t try to prolong it, either. I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability.”
- “Obviously, a do-not-resuscitate order and a complete advance directive indicating no ventilators, dialysis, surgery, antibiotics, or any other medication—nothing except palliative care even if I am conscious but not mentally competent—have been written and recorded. In short, no life-sustaining interventions. I will die when whatever comes first takes me.”
Emanuel supports the following health care policies:
- He is against using life expectancy as a measure of the quality of health care (i.e. longer life does not translate to better care). He supports biomedical research and the need for more research on Alzheimer’s, the growing disabilities of old age, and chronic conditions—not on prolonging the dying process.
- I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging. Are we to embrace the “American immortal” or my “75 and no more” view?
In summary, Ezekiel Emanuel states: “But 75 defines a clear point in time: for me, 2032. It removes the fuzziness of trying to live as long as possible. Its specificity forces us to think about the end of our lives and engage with the deepest existential questions and ponder what we want to leave our children and grandchildren, our community, our fellow Americans, the world. The deadline also forces each of us to ask whether our consumption is worth our contribution.”
You may want to revisit some of my other older posts about this difficult topic: