Pandemics and Puzzles

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

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.

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.

Caregiver Characteristics

Your Guide to Avoiding Burnout & Surviving Grief

The January 14, 2021, CaregiverDave article “6 Best Qualities You Need To Become a Good Caregiver” lists and discusses the top half-dozen assets and abilities that they deem caregivers must have in order to perform their duties in an efficient manner.

6 Best Qualities You Need To Become a Good Caregiver (

  • Patience & Flexibility
  • Compassion & Empathy
  • Time Management Skills
  • Sound Communicator
  • Optimism & Enthusiasm
  • Physical Strength & Stamina

The article suggests that these tips will surely help you become a better caregiver, and that if you possess them you will never have to face caregiver stress and burnout. The article goes on to say that you will be able to do your job in an even more efficient manner if you avail yourself of services such as caregiver support groups and caregiver coaching.

Whereas I agree with the importance of the qualities and recommendations listed, I will point out that I am wary of using language and advice that indicates “must have” characteristics and “never have to face” situations.  In my opinion, such language sets caregivers up for a sense of failure when expectations are not fully met. 

Caregiving is not, nor will it ever be, easy.

In our book, What to Do about Mama?  we also address the issue of caregiver characteristics.  You will certainly find some commonalities between the two sources.  But we stress more the importance of recognizing your abilities, identifying your needs, and developing your strengths. 

“We think, too, that “inner strength” refers to the gifts we might have been born with. But they are also the ones that we have since developed, such as character and abilities. These qualities can all be looked at as “God-given,” if that makes self-acknowledgement easier.

Sometimes a person doesn’t know how well he or she can swim until a near-drowning situation. That’s an apropos analogy for caregiving. No one, least of all a caregiver, should ever underestimate the difficulty of the task at hand.

But if you look at caregiving as an opportunity to discover and apply the skills you may not even have known you had, it will seem much more manageable—and even positive. Look at the gifts and strengths you have, not only in character, but in other areas as well. Just because caregiving is new to you (or new in the case of caring for a senior) and particularly difficult, doesn’t mean your abilities don’t apply.

Recommendations We are addressing here the characteristics of a good caregiver, under the premise that if you are a caregiver, these are qualities you may well already embody. And, if indeed, you feel you are lacking in some of them, we recommend that you work on developing them. The following are attributes that not only facilitate performing your caregiving responsibilities but also can potentially enrich all your relationships.

What to Do about Mama? pp. 262-268

We go on to list and discuss the following caregiver characteristics:

  • Love, care, and compassion
  • Commitment to family
  • Problem-solving
  • Apply knowledge and skills
  • Strong work ethic
  • Understand and set personal limits
  • Effective communication
  • Empower and facilitate

The Beacon features What to Do about Mama?

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Check out “Advice for developing a caregiving plan” in the January 2021 issue of The Beacon Newspaper:

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The Aftermath of Caregiving

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