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.