Cancer and Chemotherapy during COVID

Posted: October 26, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships, Katie's Story, Topics of Current Interest | Tags: , , , , , , , , , , , , , , , , , , | Leave a comment

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. 

Caring and Grieving in the Shadow of COVID | The Caregiver Space

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.

Pandemics and Puzzles

Posted: January 31, 2021 | Author: | Filed under: Miscellaneous, Topics of Current Interest | Tags: , , , , , | Leave a comment
The youngest working on a 1000 piece puzzle with Grandma

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.

On the consolatory pleasure of jigsaws when the world is in bits | The Caregiver Space

On the consolatory pleasure of jigsaws when the world is in bits | Psyche Ideas

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?

It’s COMPLICATED–Attitudes about Dying

Posted: January 23, 2021 | Author: | Filed under: Emotional and Physical Challenges, Topics of Current Interest | Tags: , , , , , , , | Leave a comment

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.)

    http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

“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.

The Ventilator: Life, Death And The Choices We Make At The End | The Caregiver Space

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

The Scar In Your Heart: Grief In End of Life Care – BK Books

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.

The Aftermath of Caregiving

Posted: January 1, 2021 | Author: | Filed under: Aftermath of Caregiving | Tags: , , , , | Leave a comment

Mixed Emotions

Life after caregiving can be full of surprises.  What I mean is, our reactions and feelings can be so different from what we may have expected.  In the 2nd Edition of What to Do about Mama? I added a new chapter that spoke directly to the matter of life after caregiving. 

The Caregiver Space article, December 7, 2020, “Moving Forward After Caregiving Ends” by Harriet Hodgson, focuses on the same topic. 

For over 23 years, Harriet cared for three generations of family members in one form or another.  Saying caregiving was “woven into every thread” of her life, she explains why she, as a health and wellness author, changed the focus of her writing to books for family caregivers. 

Harriet also explains that she writes to learn and figure things out.  In her article she compiles a list showing her thought process after her beloved husband died, November 2020.  See:  Moving Forward After Caregiving Ends | The Caregiver Space

After completing her exercise, Harriet sums it up like this: “When caregiving ends, we need to give ourselves time to get our bearings. We need to give ourselves time to recover from shock. We need to give ourselves time to identify our feelings. We need to give ourselves time to plan a new life. We need to give ourselves time for renewal. Most importantly, we need to believe in ourselves.  Love will guide us and lead the way.”

Because I have often noted that when caregiving responsibilities end there is a common reaction of, “What now?” So, in preparation for writing a new chapter for the 2nd Edition of What to Do about Mama? I asked the following question of post-caregivers: “When your caregiving ended, what was your initial reaction; and what did you do to move on?”  Here are some of the responses: 

I found myself with a void to fill—a process that just started to evolve naturally. I began to look for things to do, and now I look back and am amazed that I was able to spend so much time with my dad. Amelia p. 276

Initially, after my mother passed away and my caregiving ended, I felt an overwhelming amount of emotion and logistics to sort through. Once that was settled, though, it was just one day at a time, going through the motions until eventually the motions didn’t feel like such an effort anymore.  It is fortunate, I suppose, that as a parent of young children, there is not much choice about moving on.  Jenna p. 280

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. Ellen p. 282

Due to therapy, I started writing on a daily basis, which is a major help. I am happy to have had productions of my work all over the world. My most recent work is about, you guessed it, caregiving! Jeanette p. 285

Surprisingly, I have moved on with great peace. I know that I did my best, given the circumstances. June p. 286

At first, I was relieved her suffering was over, and I had a lot less stress. That was short lived, though, as I quickly missed the intimacy of caring for her. I missed her terribly. I started a support group for brain cancer patients and caregivers. I named it after and dedicated it to my wife. Curt p. 287

When she passed, I felt guilt that maybe I hadn’t done enough; that I hadn’t given her enough hugs and reassurances; that I could have helped her more. Though I was relieved on one level, I had a lot more haunting thoughts going through my head over her death. Judene p. 288

Post-caregiving, I found the best help in hospice counseling. After Dad passed away, my husband and I had to recreate a social life. It’s certainly an adjustment to have so much free time.  It’s a version of empty nest syndrome, but this time with the added ingredient of grief. My advice? Get out and enjoy your new-found freedom. Marianne p. 290

My faith, great friends, and excellent hospice counselors brought me out after almost ten years of intense caregiving, with my mind and spirit intact. I have begun Life: Part II, with great thankfulness for God’s sustaining grace, past, present, and future. I fill my time now with friends, my children and grandchildren, volunteer work, and helping other people. I feel well-adjusted, whole, and happy. (So, there is life after caregiving, if you can survive it.) Katrina p. 290

When my caregiving ended, I sadly felt a sense of relief—despite the fact that I know I am now all alone. I like to think that now (in the afterlife) my mother or maybe my father or someone, just feels that this is Joanna’s time for Joanna. Who knows? I’m not questioning the how or the why. I’m just enjoying the journey! Joanna 292 & 294

What to Do about Mama? pp. 276-294

Difficult Conversations

Posted: December 13, 2020 | Author: | Filed under: Impact on Family Relationships | Tags: , , , , , , | Leave a comment
How to Handle Difficult Conversations

I read with interest the November 21, 2020, Caregiver Space article, “How to Have a Difficult Conversation,” by Adar Cohen (Edited by Lucy Foulkes).

See:  How to have a difficult conversation | The Caregiver Space

Family communications was a frequently addressed topic addressed in What to do About Mama? (Barbara G. Matthews and Barbara Trainin Blank).  It was difficult in my own caregiving experience, as well as in many of the other caregivers who made contributions to the book. 

“Good communication among all the significant parties is the best means to develop a successful caregiving plan. However, communication skills are developed over a lifetime. They don’t suddenly become “good,” especially when family members are dealing with the problems and stresses that arise from caregiving needs.”

What to Do about Mama? p. 152

The article suggests that avoiding difficult conversations only fosters more conflict, and that caregivers should aim for a shared understanding. A synopsis of the article follows, interspersed with relevant excerpts from What to Do about Mama?    

“It is optimal for everyone involved to get together to talk openly, to listen, to divide responsibility, to compromise, and to commit. And, in some families, this truly does happen. But a more frequent scenario is that as a need arises someone steps in to meet that need (often the one who has “always” provided support), and the others take a back seat or hands-off approach.”

What to Do about Mama? p. 154

When Mediators help people have difficult conversations, they aim for one of three outcomes:

  • A solution:  a grand bargain, a resounding win, a comprehensive solution expected to withstand the pressures of future challenges.
  • A plan:  more realistic; like a map for finding a solution; open-ended but with a path forward; establishes new boundaries, revised norms, and shared expectations.
  • An understanding:  the most realistic outcome, especially at the beginning, is to focus on reaching an understanding; a new awareness of the other person’s experience; a mutual appreciation for one another’s needs;  can lay a foundation for a plan, a solution and a new relationship.

“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety—or whether you place equal weight on both. Establish common goals. Divide responsibility based on the strengths and abilities each of you brings to the family.”

What to Do about Mama? p. 155

The following techniques from an expert mediator are guides to help you do this without the mediator. It is a way to create the conditions in which people feel heard and acknowledged.

  1. Prepare for the conversation: imagine you just finished having the best possible conversation where each of your concerns was addressed to your satisfaction.
  2. Dig out a gem:   What would you say to them in this moment? Your statement should be an authentic expression of how you’re feeling but should also have significant meaning and positive impact for the other person.
  3. Ask yourself if you’re ready:  Are you willing to risk make the statement?  Although making a gem statement can create temporary discomfort, benefits are lasting and profound.   
  4. Phone a friend and tell them the following four sentences:
    #1 The biggest emotion that I’m feeling toward the person I need to have a difficult conversation with is…
    #2 The biggest emotion that I expect the person is feeling toward me is…
    #3 The gem statement I will make to them is…
    #4 My hope for the conversation is…
  5. Start the conversation (in person, by phone, or by video) by stating your gem, immediately followed by: “I say this because I think if we both really try, we can work this out.”
  6. Listen and talk. Remember your purpose.  Try to achieve understanding, even if it falls short of a solution.  Remember that just as you need to be heard, your counterpart needs to be heard too.
    *Minimize arguments, foster empathy, describe your experiences and emotions, do not list your
    counterpart’s mistakes and faults.
    *Filter your grievances: Stick to your top three grievances so as not to tax your counterpart’s ability to
    absorb and respond to critique.
    *Look back at the fill-in-the-blank sentences you read to your friend and see if there’s anything more or different you’d like to share.
  7. Close the conversation. Ask one another to identify what has changed as a result of this conversation. Remember that your goal is to understand each other.

“What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions.”

What to Do about Mama? p. 16

I think it is important to note that despite all your best efforts, you cannot always orchestrate the outcomes you wish for.  You make your own choices–you cannot control those made by others.  In my own caregiving situation, we enlisted the support of a mediator, which helped to achieve current goals.

“If you do not want to handle the caregiving responsibility alone, and if the family cannot come together in agreement, you may need to seek professional intervention.”

What to Do about Mama? p. 158

However, sometimes you’re caught in a recurring family pattern that causes pain and drives you away from the people you have loved. Once again, you may come to the point where you have to make choices—even if they are disappointing.    

“What if family mediation is, once again, an unsuccessful endeavor? There could be healing someday if you and your siblings find your way to let go of grudges. But you may also have to learn to accept that sometimes relationships are broken beyond repair, and it’s just not your job to fix them. Whereas childhood relationships with brothers and sisters are involuntary, maintaining them in adulthood is not. We are entitled to choose ‘not’.” 194

What to Do about Mama? p. 194

Robots: A Good Idea for Caregiving?

Posted: September 13, 2020 | Author: | Filed under: Emotional and Physical Challenges, Miscellaneous, Topics of Current Interest | Tags: , , , | 1 Comment
Image result for robots clipart

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. 

What do you think?