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?”
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 & 294What to Do about Mama? pp. 276-294
I read with interest the November 21, 2020, Caregiver Space article, “How to Have a Difficult Conversation,” by Adar Cohen (Edited by Lucy Foulkes).
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.
- Prepare for the conversation: imagine you just finished having the best possible conversation where each of your concerns was addressed to your satisfaction.
- 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.
- 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.
- 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…
- 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.”
- 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.
- 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’.” 194What to Do about Mama? p. 194
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?