Moratorium

Taking a Time Out

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.

Barb Matthews


Surviving the Unimaginable: How to Cope with the Death of a Spouse

Photo courtesy of Unsplash by Ben White

Guest Post by Michael Longsdon info@elderfreedom.net

The death of your beloved spouse can shatter your entire world. There will be undeniable grief and sorrow as you mourn the love of your life. You might even begin to wonder how you’ll go on without them. For seniors who have possibly shared so many decades of their life with their significant other, it can be particularly difficult to move forward.

It’s important to realize that you are not alone. An estimated 800,000 people are widowed each year in the United States alone. Regardless of what some well-meaning people might tell you, there is not a “right” or “wrong” way to deal with the death of your beloved spouse. There is no specific amount of time you “should” take to grieve. The process is different for everyone.

Luckily, there are some time-tested words of wisdom that can help you cope in the weeks, months and years that follow the loss of your loved one:

First and foremost, give yourself time to grieve. During this process, you will undoubtedly need some support. Even for those with a solid support system and strong resilience, there is an unbelievable amount of grief that occurs when we lose our lifelong partner.

There will be some immediate needs that you will need to take care of, such as funeral planning and managing your household’s finances. It is common to feel overwhelmed by these sudden tasks – especially if your spouse typically handled most of the finances. Again, give yourself permission to reach out for help if you need it. Chances are, there might be a loving family member or a trusted friend who is willing to take on a few extra responsibilities to support you in this process.

Many people decide to move after the death of a spouse. This should not be a decision that is taken lightly, but instead should be made only after you’ve taken some time to really consider what is best for you. If you do eventually decide to move, you will want to properly handle and preserve any family heirlooms as items are either packed away into storage or donated. Not only do you want to protect the item, you also don’t want anything to get damaged in the process.

Regardless of whether or not you decide to move, you might also want to consider turning one of your beloved heirlooms into a memento. Choose an item that has special meaning to both yourself and your spouse, possibly something that reminds you of a happy memory or a certain aspect of his or her personality. Consider keeping the item and turning it into a keepsake that you can cherish for years to come.

As you work through your grief, you may look for other significant ways to remember your spouse. One excellent way to memorialize your loved one while also helping others is to start a nonprofit. As doing so can be complicated for those who aren’t familiar with the process, ZenBusiness offers step-by-step guidance on how to form your nonprofit. Especially if your loved one passed as a result of a specific medical condition or if there was a cause they were particularly involved in during their lifetime, a nonprofit can be a great way to raise awareness and funds while helping others in the process.

You don’t ever really get over the death of a spouse. But with patience and time, you will eventually get through it. Although the person you loved might be gone from this world in a physical form, they will always live on in your heart – and in your memories of your good times together.


Cancer and Chemotherapy during COVID

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.


Plan. Don’t Procrastinate!

Image result for elder care choices clip art

Caregiving.  It is not something that people want to talk about, or even to think about.  Let’s face it.  In many ways, caregiving is a bummer.  Why?  Because it is all about loss:  loss of physical and cognitive abilities; loss of independence; and ultimately, the loss of life.   But all of that loss is not exclusive to the care receiver.  Caregivers experience a loss of their lives—not by dying—but by losing the freedoms of their lives as they lived it previous to caregiving. 

In my condominium community, a number of our elderly residents have recently sold their homes and moved to senior care facilities.  Not because they wanted to, but because they were pressured by their children to do so.  We neighbors were surprised to see one gentleman’s obituary in the paper a matter of only a few weeks later. 

I am not quick to blame the children, who were doing what they thought best to assure the safety of their parents who’s independent living had become basically unacceptable.  But did it have to be this way?  No.  The parents could have remained in the driver’s seat of their lives if they had been proactive and planned ahead in preparing for their future needs. 

Why does it take a crisis moment to move folks into action?  It’s because people are in a vicious cycle of procrastination and denial. Caregiving education is something that is often ignored because:  pre-caregivers think they don’t need it yet; current caregivers who feel they are too busy; and post-caregivers just want to leave it all behind.  I’ve even known caregiving “experts”, who should know better, to fall prey to procrastination.  Sometimes they, too, wait for the crisis moment before springing into action. 

So, if you want to call your own shots, be proactive—plan and prepare ahead.  I have, and this is what I have accomplished:    

  • Downsized my home
  • Downsized and organized my belongings (It was like pulling teeth, but I even got the kids to express what they would one day like.)
  • Made a notebook of the information they would one day need to lay their hands on easily:  financial, legal, property maintenance, and medical  
  • Completed a conversation starter kit “The Conversation Project” so that the children would have a clear picture of what my wishes are for end-of-life care.

It is my plan to stay in my home and age in place with in-home care.  My daughter lives nearby, but if my needs are great there’s an agency called Elder’s Choice that provides a live-in caregiver 24/7 and that is the model I would prefer.  But there are many other choices available, too—it’s a matter of being flexible (not stubborn) and developing a care plan that works for you and your family—one that does not leave your children with excessive burden for your care. 

So, educate yourself early on.  The following article takes a succinct look at the following elder care options:  Aging in Place; New Home; In-home Care; Living with Family; Independent Living Community; Assisted Living Facility; Continuing Care Retirement Community; Skilled Nursing Facilities; and Care Homes.

July 18, 2021

Elder Care Options: Which Is Best For Your Loved One?

Nine Elder Care Options – Silverts.com


Podcast: PositiveAging Sourcebook

To listen to the podcast, click on the the following link:

https://www.retirementlivingsourcebook.com/videos/live-interactive-discussion-on-the-expectations-realities-of-caregiving


Guide to Caring for a Loved One with Alzheimer’s

Guide to Caring for a Loved One with Alzheimer’s by Sharon Wagner sharon@seniorfriendly.info

Image via Pexels

Alzheimer’s is a devastating diagnosis that millions of families cope with every year. If you have a loved one with this illness, this guide from What To Do About Mama? will offer you some support.

What is Alzheimer’s Disease?

Alzheimer’s disease is a progressive brain disorder that makes up about 60% to 70% of the cases of senile dementia. Alzheimer’s disease affects about 6.2 million Americans aged 65 and older. It can be your grandparent, your cousin, your sibling or even your parent who faces the diagnosis. Eventually, those with Alzheimer’s require around-the-clock care, and for many families, that means taking the loved one into their own home.

Signs of Alzheimer’s disease vary depending on which stage the person is in. As a degenerative brain disorder, symptoms become more severe with time. Here, we’ve separated the stages into three basic tiers: mild, moderate, and severe Alzheimer’s disease.

  • With mild Alzheimer’s disease, a person may seem healthy but they begin to show signs of the disorder. Mild Alzheimer’s is characterized by memory loss, poor judgment, consistently getting lost, taking longer to do simple tasks, needing things repeated, losing things, mood disorders, and aggression.
  • As the disorder progresses it becomes moderate Alzheimer’s disease. Signs of this stage include increased memory loss and confusion, cognitive difficulties, disorganized thoughts, difficulty coping with things that are new, hallucinations, paranoia, impulsiveness, restlessness, and increased anxiety and aggression. During this stage, the Alzheimer’s patient needs more intensive supervision and care from those around them, but they can typically stay in their homes.
  • Severe Alzheimer’s disease makes a person completely dependent on others. They need supervision around the clock and access to emergency medical care. Symptoms include a complete loss of communication ability, seizures, skin infections, loss of bowel and bladder control, trouble swallowing, increased sleeping, weight loss, and grunting.

Caregiving for a Person with Alzheimer’s

As Alzheimer’s disease progresses, the patient requires supervision and assistance for their safety and wellbeing. In the illness’s latest stage, this often means moving the loved one into a skilled nursing facility with a staff that can provide the care they need 24 hours a day. Unfortunately, this care doesn’t come cheaply, with a current average cost of over $7,700 each month. To help cover this expense, many families sell a senior’s home and put the proceeds toward their care. You can get an idea of what your loved one’s home will sell for by looking at its sale price, the size of the mortgage on it, and the taxes and fees for its sale so you can budget for care accordingly.

There is some good news: while those in the severe stage of Alzheimer’s may need to be admitted to an assisted living facility, typically those in the earlier stages can continue living at home as long as a family member or loved one can provide support. There are an estimated 16 million American adults who act as family caregivers for someone with Alzheimer’s disease or other dementia every year. If you find yourself in the position of being one of these millions, it’s important to prepare the home you share for their safety as the disease worsens.

  • As mobility becomes an issue, handling steps and stairs becomes more and more difficult for the Alzheimer’s patient. Be sure to keep all their necessities on the first floor and cover inclines with a safety ramp they can safely navigate.
  • The bathroom is the most dangerous room in the house. Place toiletries and things they will need in immediate reach, and make sure they’re clearly labeled. Put locks on cabinets and drawers that hold hazardous items like cleaning products or razors. Install grab bars next to the toilet and tub, and consider installing a shower bench to make bathing easier.
  • The Alzheimer’s patient needs their own space where they can seek privacy and rest. Set up a comfortable room, preferably with direct access to a private bathroom. Place things they like in the room whether it be photos of loved ones, safe crafts to do, or a television. Remove possibly harmful decor and items, especially things that can shatter if broken. Avoid low furniture they can trip over such as coffee tables and ottomans.

***

Alzheimer’s is a degenerative brain disorder that affects millions of seniors. As the disease worsens, patients need constant supervision for their wellbeing. While severe Alzheimer’s may necessitate an assisted living facility, during the earlier stages people can generally stay in the comfort of their home with the help of a caregiver. Caregivers provide supervision, security, and emotional support during this difficult time.


A Sense of Purpose

Has COVID-19 had an impact on your sense of purpose?  In her March 15, 2021, article A Reason To Get Out Of Bed, Barbara Karnes discusses this issue in terms of how purpose impacts end-of-life.

  A Reason To Get Out Of Bed – BK Books

Barbara reports that when she awoke the other morning, she began to think:  Why not just stay in bed all day? Why do I NEED to get out of bed? What do I NEED to do?  It was then that she realized that because of COVID, her sense of purpose had vastly diminished.  Something that Barbara already knew, something she had learned through her profession, was that having purpose is needed to move forward into living. 

This, too, is my experience.  When the time came that my mother-in-law could no longer live alone and the choice was made for her to move into our home, she was in very poor condition due to advanced COPD, falls and fractures, as well as a number of other serious disorders.  We didn’t expect her to live much beyond two more years. 

What we hadn’t considered was the strong sense of purpose that still burned within her.  She got up each morning insisting to get dressed first thing.  She set goals—one of which we helped her meet—which was to see her last grandchild graduate from college. (This meant procuring a special oxygen system to enable her to flying to Colorado for graduation.) 

The woman not only had goals, she verbalized them vociferously. 

“My goal is to live to one hundred.” “It’s all in your attitude.” “I don’t want to miss anything. “I just keep plodding along.”

What to Do about Mama? pp. 30-31

In my book, “What to Do about Mama?”  others reported similar stories about the longevity of seniors living life with a purpose. 

I recall an assessment I administered with a woman well over ninety. She said that her son was a widower and remarked that I reminded her of her deceased daughter-in-law. Later in the assessment, she asked me, “Are you married?” Afterward, when I was walking to my car, I burst out laughing when it suddenly dawned on me that she was exploring my status of availability for her son. I think it was important for her to know he was taken care of before she was ready to depart this earth.

And here is another reason one senior is motivated, just like the Energizer Bunny, to keep going and going and going . . . Her mother hadn’t “planned” to live past eighty-five. But once Patricia’s siblings began to compile a family history, she expressed the desire to see the work completed. It gave her satisfaction that her children, who hadn’t always gotten along, were cooperating on the project.

Peter told us that because the Germans had shot at him with “88s” during the war, it was his goal to live to be eighty-eight years old. He and one other man in his platoon had been the only two that were not wounded or killed by the German artillery.

What to Do about Mama? pp. 227, 306

In her article: Barbara Karnes concludes that “The year of 2020 changed everyone’s sense of purpose, made everyone question their reason for getting out of bed each morning.  The pandemic did end a way of life we were living. It stopped our routines, our habits of daily living and forced us to reexamine how we are living our lives, what is important to us, how do we just survive.” 

So true.  I find that I am filling my days with “busy-ness”—various projects, some that I like, some not so much so.  Why? 

Unlike some people, such as the healthcare workers who are pushing their purpose to the limits, there are others who have been stopped in their tracks—forced to shelter, to disconnect, to stop what we were doing.  We ask ourselves, “Why am I doing this?” But as Barbara Karnes suggests, maybe it would be preferable to rethink our question and ask, “What can I do while this is happening.”   In that way, we may be able to better-establish our sense of purpose and our reason to get out of bed in the morning. 

Don’t ask: Why am I doing this?
Do ask: What can I do when this is happening?


Death: it’s impact on grief

Dying Well.  These words are, I suppose, a good example of an oxymoron.  It’s something I think about with frequency these days—mainly because of the reports about those dying of the Coronavirus—which seems to me to be: Dying Unwell.  And then there’s the recognition that more of my peers are dying these days—including those that are my counterparts in our family.  In this case, I’m referring to my grandchildren’s “other” grandmothers.  Two of them died of cancer, but—from my perspective—only one of them “died well”.  The other? Not so much so. 

Why?  The first family confronted the topic of death head on.  This counterpart grandmother was in the driver’s seat of her death as I suspect she was in life.  The second family denied and avoided the topic of death.  It appeared to me that this counterpart grandmother did not experience death on her own terms. 

I am a strong believer in talking about life’s uncomfortable situations.  I adopted that standard from the time that I realized how destructive it was to live a life of unspoken secrets—the life I’d lived since the approximate age of ten, when I first learned that my father had been diagnosed with a terminal illness and was only expected to live another four years.    

As children, we are formed by the people, places, and events in our surroundings that are consigned to our formative environment without choice. The circumstances surrounding my father’s illness and death were not only heartbreaking—they impacted my ability to cope effectively. I was ill-equipped.

Development depends on the interaction between internal and external forces. Honesty and openness are good policy; duplicity fosters insecurity. Nothing was open or honest in how my father’s illness was handled. And then he died.

My life took a new direction late in 1958 when one morning 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. His condition worsened and he was soon hospitalized with a medical crisis. The doctor told my mother that our father might die.

That evening, while my Mom drove my older brother and me home from the hospital, she told us that my father had a blood cancer and 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. It became “our secret,” and was never discussed.

 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. Girlhood was interrupted.

During my father’s last health crisis, he traveled to the Mayo Clinic for treatment.  According to the policy of that institution, he was told of his diagnosis honestly for the first time.  He contracted pneumonia and died there, never having returned home.  We never got to say, “I’m sorry” or “I love you” or even “Goodbye.”

Grief is agonizing, and childhood grief is among the most excruciating forms. It deprived me of the opportunity to give love to my father and to be loved by him in return. I was alone in my grief; there was no one with whom to share the sorrow. During the time of my father’s illness, his death, and the years beyond, my mother was just not capable of attending to her own grief and to the emotional needs of her children as well. 

Childhood trauma and the corresponding “loss” of childhood were the extreme hazards of my formative years; they required extraordinary coping skills that I had not yet developed. Without the benefit of an understanding and compassionate parent figure, I was vulnerable and needy. As a child left on my own to manage —how could I have remained emotionally healthy? My recovery was arduous, exhausting, and difficult to accomplish. It was grueling because there was so much, it was so intense, and it lasted so long. It was life-altering on a permanent basis.

If I were to choose what life experience defined me most, I would have to say it would be the unresolved grief due the death of my father.  As a wounded child—I was forever changed.

I was at a caregiving conference many years ago, and attended a hospice workshop. A comment was made about the support systems available to children to help them through the trauma and grief of losing a parent. Upon hearing that comment, I found myself suddenly in tears, and thought, “Oh…if they would only have had something like that when I was a kid!”

It’s pointless to debate which types of grief are the worst—the hardest to bear. Grief hurts far beyond ordinary words—it is profound sadness; it takes your breath away because it aches so much. The child’s loss of a parent is one of the most difficult forms of bereavement, and childhood grief is among the most damaging. It confronts the child with the difficult task of adaptation. It requires the guidance of a capable parent figure, someone from whom to draw strength, someone to receive and relieve the child’s distress.

The death of a parent is life-altering on a permanent basis; it is a severe emotional wound and engenders a longing of incomparable amount, intensity, and longevity. The pain of my father’s death was exacerbated by the fact that it was verboten for us to talk to him about it or even to our mother for that matter—ever.

It has now been nearly sixty years, and yet the pain of it never goes entirely away.  Although acute mourning subsides, we remain forever changed. I was literally formed by the conditions and context of how my father died.

Eventually, bottling up became so profoundly painful, that I did a 360 degree turn and became blatantly honest—a characteristic that set a whole new set of complications into motion. Any attempt to hold back and to be more prudent with my remarks just creates anxiety. For me, the consequences are better than the alternatives.  This is why I cannot just ignore problems and move on; I have to actively deal with them before I can put them away.

Honesty. Openness. Love. Memory. Communication.  I believed this was the route to strength and growth.  I believe that the journey would have been less difficult if that approach had been used from the onset.  I think the following NPR TED Radio program “Dying Well” bears this out. 

On this program, Jason Rosenthall shares the story of his wife Amy’s death from Ovarian Cancer. 

Amy wrote an essay about her life, her husband, and her impending death.  She said, “My husband is a great guy, and he’s available.”  Although she wanted to spend more time together with Jason and their children, she wanted to liberate them to move on in life without her.  She did that by saying, “You may want to marry my husband,” with the hope that if the right woman would read it, find Jason, and another love story would begin. Amy wrapped it all up on Valentine’s Day. 

On the TED Talk, Jason tells his Story of Grief:

Our love grew up until last day.  I have memories that haunt me, such as when I carried Amy’s lifeless body downstairs and through the house to the gurney waiting to take her to be cremated.  I will never get that out of my head. 

He admits that milestones are always difficult to get through, such as his son’s college graduation, and his own birthday.  “There’s always something to remind me of our life together.” 

I could not stand to be alone with these feelings and images. I want to take the taboo out of it; to talk about it and not be afraid of it. Thanks to Amy, he learned how to talk about dying without fear, to make plans while there is still time, and to plan for a good death. He says its better to have these conversations while healthy, and that being able to talk death openly was liberating.

Dying Well : TED Radio Hour : NPR


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.)

    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.