In 2013 the first edition of What to Do about Mama? was published by Sunbury Press. My idea to write a book about caregiving was initiated by my experience as a caregiver for my mother-in-law. After my caregiving role ended, I remember thinking, “I could write a book!” I think many of us have a thought like that one time or another. But in this case, I did—along with my co-author and some three dozen other caregivers. In all honesty, my thought was that others might benefit from the real-life information we had to share.
And maybe it has. My daughter-in-law was pleased to tell me that her aunt is reading the book (the second edition published in 2019), “loves it,” and “wishes she had read it before she was a caregiver.” That is a typical response to caregiving books. Why? Because most people avoid thinking or talking about caregiving as a means of denying the day will come. I will think about it “when I need it” becomes “dealing with it in the crisis moment.”
This is a topic I have addressed—a lot—along with some other What to Do about Mama? ‘s main themes, such as family relationships and shared responsibility; the emotional impact of caregiving; and avoiding the burden of caregiving by planning and preparing ahead. (Check out the Index of Blog Posts on the menu bar.)
Caregiving had a profound influence on my life. It impacted my health, my relationships, and my outlook on the future. If you subdivide the population into young, middle-aged, and old, my peers—family, friends, neighbors, and acquaintances—fall into the latter group, whether admitted or not. Sure, there are many subgroups based on attitudes and physical condition, but still, we fall into the category of “old.”
I say this because reports of illness and death are more frequent.
I say this because I know that no matter how much effort we make to stay young, fit, and sound, we cannot change the inevitable.
I say this because of the number of times I look at my peers and feel the urge to shout, “Watch out!” as if they are ready to step in front of an oncoming unseen car. Even those who are health care professionals and social workers. Because avoidance and denial are common to all of us.
By now you may be wondering why I have chosen to write about this topic. It is because I want to tell you that I am initiating a moratorium from this What to Do about Mama? WordPress blog, as well as the on the monthly What to Do about Mama? newsletter.
My husband, who worked in the steel industry for 48 years, retired in September. Although I love to write, it is, for me, a painstakingly slow process keeping me at the computer for many hours. That was fine when he was working, and even better during COVID’s pre-vaccination days. But now, I need to free myself from the tether. I’m leaving my options open so that I will have the ability to communicate via these channels again when so moved to do so. But it certainly won’t be on a regular basis.
There are still a couple of initiatives in the works. One is a What to Do about Mama? audiobook. The other is a collaborative book project I have been working on for the past five years with a former student. Although it was initially accepted for publishing, there are legal ramifications that need to be worked out that put that eventuality into question. Although not a book about caregiving, I will let my followers know if the project comes to fruition.
Here you will hear the chitchat of two (Millenial?) friends as they share their thoughts about a wide variety of topics, such as perfectionism and sobriety. The podcast I chose was BURNOUT, and although they largely spoke in general life terms, the conversation touched on and applied to the specific topic of CAREGIVING.
Jenn is an elementary school teacher whose entire nuclear family–both the spouses and their two young children–are overcoming a bout with coronavirus. Jenn noted that they now have SUPER ANTIBODIES. Jenn expressed that their COVID experience was like a “mini 2020” because of their return to quarantine status.
Joji is a nurse who had just experienced an overwhelming week, which consisted of work (an unusual 5-day shift) in conjunction with a week of caregiving (a responsibility she and her siblings share on a rotating basis). By Friday she felt like she was hitting a wall, noting that it felt like a train was barreling down on her that could not be stopped.
Respite care helps caregivers avoid burnout by taking time away from the senior-care environment. It helps prevent the depression that develops when caregivers do not make time for a well-rounded personal life. Again, respite care falls within the realm of family responsibilities and provides another good opportunity for friends or volunteers to help. But if these resources are not available to you, paid services are accessible in-home through independent caregivers and home-health agencies, or out-of-home at assisted-living or nursing-home facilities, adult day centers, and family respite-care homes.
What to Do about Mama? p. 184
These experiences led Jenn and Joji to talk about burnout and how to cope. They touched upon the following:
Signals of burnout:
Losing patience and being bothered by the “little things”.
Turning to alcohol, rationalizing that you “deserve” it, then feeling worse afterwards.
Self care as a ways to deal with burnout:
Use positive self-talk that does not assign an emotion to your feelings.
Acknowledging that you are burned out and taking time to “pause”
Learning to let go and not expecting yourself to be “perfect”
Establishing basic healthy habits (such as eating right, exercising and getting enough sleep)
Relationships and asking for help:
AT HOME From your spouse and children (it’s a good way for them to learn independence) From your siblings (as in sharing the responsibilities of caregiving)
AT WORK From your Boss and Co-workers. Remember you are a TEAM
Most importantly:
“I learned how to say, ‘NO,’ in addition to knowing when to say, ‘Yes.’”
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.
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 –…
Jigsaw Puzzles. Not everyone enjoys them—but I do. I especially love doing puzzles with my grandchildren. “Puzzling” was a frequent activity when they were young–the times before they got too scheduled to while away the hours with Grandma, and before I was in competition with screen time.
Puzzles provided a chance for the kids to focus quietly. I could observe the working of their minds–how they use their understanding of the pictures to place their pieces into the puzzle. It was an opportunity to engage them in thoughtful conversation. Initially they worked by trial and error, but as they matured they used color, shape and those clues from the picture to put the parts into the whole. But still, they manifested their mischievousness when they squirreled away a piece so they could be the one who “finished” the puzzle—always the one that I was specifically looking for, I might add.
During a visit with my brother in 2018, we went to the movies to see The Puzzle. When Agnes asked Robert, her newfound competitive-puzzler-partner, what he loved about doing puzzles he replied: “Life is messy, there’s nothing we can do to control anything. When you complete a puzzle, you know that you have made all the right choices.” Oh yes, I thought, now I get it.
So my interest was piqued when The Caregiver Space featured a recent article entitled “On the consolatory pleasure of jigsaws when the world is in bits,” by Melanie McGrath, which appeared the January 20, 2021, Psyche Newsletter.
When the call came to say my mother had died, I was working on a jigsaw of Joan Miró’s painting The Tilled Field (1923-24). Like many others, I turned to jigsaws at the start of the pandemic as a way to manage stress, and symbolically reimpose order on a chaotic world. We take our consolations where we can and, as I continued with the puzzle in the days after mum’s death, its tactile qualities, the spicy smell of ink and card, and the small satisfactions of placing each piece where it belonged, grounded me when the world was in bits – both outside and within.
Since her diagnosis of dementia 15 years ago, my mother, too, had been disintegrating, as it were, piece by piece. At each of my fortnightly visits, some further part of her seemed to have newly dropped away, leaving gaps so raw and cruel that I sometimes had to remind myself to focus on what remained. COVID-19 put a stop to my visiting the nursing home where she spent the final decade of her life. We tried FaceTime ‘get togethers’ but my mother was blind as well as in late-stage dementia, so these felt like one-way affairs – mum’s eyes half-closed, her face unresponsive, her body giving every impression of lifelessness. At the time of her death, I hadn’t seen her for four months, and her image had begun to fade in my mind.
“On the consolatory pleasure of jigsaws when the world is in bits” by Melanie McGrath
The day after we saw the movie, I got out a jigsaw puzzle to do with my brother. (Evidence suggests that jigsaws help older people retain visuospatial memory.) However, this experience made evident how my brother’s brilliant mind was beginning to yield to the effects of his recently diagnosed dementia.
Since COVID-19 I have been unable to do puzzles with my grandchildren or to visit my brother–at least not for the time being. As I sit at the dining room table doing a COVID Puzzle, like Melanie McGrath I think,
“When bereavement leaves us in pieces, how do we put ourselves back together?”
COPING with COVID: A View of our Post-COVID World?
Caregiving is timeless and the related topics of conversation are timeless, too. I thought I’d revisit some of my blogs from 2014-15. They are, after all, they still relevant today. Stay tuned!
On September 10, 2020 The Caregiver Space discussed an article that appeared in the Guardian. Would you want a robot to be your relative’s carer? The point of the article was that people need human relationships involving empathy and attachment and that robots do not satisfy that need in caregiving situations. Read more in the Guardian.
My reply? Well, of course not! But that doesn’t mean I wouldn’t use a robot as an assistive device—just like a cane, walker, or Emergency Response System.
End of life. While we all know that it’s coming—someday—it is something we tend to ignore, until the moment it gets right up in our face and we can deny it no longer.
Snubbing death has become a real challenge in the midst of the pandemic.
I learned to deny death early on in life. Because of that, there is still within me the lasting impact of unresolved childhood grief. The death of my father, with all its surrounding circumstances, probably had the greatest formative impact on who I grew up to be.
“Daddy went away, never to return home. No last phone call. No last touch.”
An Unremarkable and Imperfect Grandma (Life Stories and Life Lessons) p. 95
So as a young adult I made a purposeful change to be candid and straightforward. This is the person I became; it does not always serve me well.
I am now in my seventh decade and find myself confronted by loss with increasing frequency. The thought of losing those who I love without the opportunity to see them again or even to say goodbye has intensified from fear to terror due to the coronavirus.
I encourage all of you to rethink your attitudes about end-of-life care and death before you find yourself in the situation where there is no going back.
11 Inspiring Quotes to Help You Rethink End of Life Care by Easy Living, August 31, 2020
This excerpt refers to quote NINE below: Because the extent of his illness had been kept from him, so many other opportunities were lost. I am quite sure there was much more that he would have liked to say to help guide me into adult life. As it was, he didn’t even have the chance to say, “Goodbye.”
An Unremarkable and Imperfect Grandma (Life Stories and Life Lessons) p. 111
ONE: At the end of your life, you will never regret not having passed one more test, not winning one more verdict or not closing one more deal. You will regret time not spent with a husband, a friend, a child, or a parent—Barbara Bush No matter what your life stage there is benefit from thinking with an end-of-life mindset.
TWO: In the end, it’s not the years in your life that count. It’s the life in your years—Abraham Lincoln “Quality of life” is vital to end of life care.
THREE: It’s not what you have at the end of life, it’s what you leave behind that matters—Stedman Graham What legacy will you leave behind? How will you be remembered? What values did you impart? What impact did you have on others?
FOUR: Our worst fear isn’t the end of life but the end of memories—Tom Rachman How will we be remembered? Make memories loved ones will cherish.
FIVE: I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end—Gilda Radner Life does not always go the way we want. Unpredictability is both the struggle and the beauty.
SIX: In the beginning of life, when we are infants, we need others to survive. And at the end of life, we need others to survive. But here’s the secret, in between, we need others as well—Morrie Schwartz We neglect to consider all the ways we need others throughout life and all the ways we are needed, even as we near the end of life.
SEVEN: Culturally, now, we’re really tight around death, and as a result I think people miss out on a lot of the beautiful aspects of the end of life process that can be very helpful for the grieving process, that can be a really beautiful part of transition of life that we don’t get to experience because it’s not in the conversation—Chrysta Bell When we avoid talking about end of life, we deny ourselves the opportunity to be involved in our end of life care. Confront what is happening. Talking about your feelings and making your preferences known benefits both you and those around you.
EIGHT: Have a conversation with your family about your end-of-life wishes while you are healthy. No one wants to have that discussion… but if you do, you’ll be giving your loved ones a tremendous gift, since they won’t have to guess what your wishes would have been, and it takes the onus of responsibility off of them—Jodi Picoult Or: “End of life decisions should not be made at the end of life.” Give your family the gift by planning ahead and sharing your wishes for end of life care. If you wait until the crisis is upon you, it may be too late for you to express your wishes.
NINE: Having the choice at the end of my life has become incredibly important. It has given me a sense of peace during a time that otherwise would be dominated by fear, uncertainty, and pain—Brittany Maynard Choice is vital in end of life care. A sense of choice through advance care planning helps reduce fear and uncertainty and gives peace.
TEN: You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die—Cicely Saunders In trying to deny or hide from death, too many miss out on the palliative care available for better living during the process of dying.
ELEVEN: The end of life deserves as much beauty, care, and respect as the beginning—Anonymous In summary of end of life care.
This excerpt refers to Quote TEN above. A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.
“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? 