My self-care plan

In January 2021, after a couple of years of increasingly serious health challenges, my mom went on hospice. She was ninety-four years old, her heart was getting weaker and she had other health issues. I was still working, and I spent much of my after-work time at my mom’s. I was already a bit worn out, and I knew the most challenging times were ahead.

I worked at a cancer support center and continually encouraged people to take care of themselves, especially those in the care-giver role. I decided to take my own advice.

One self-care plan for me is to have something to look forward to, something exciting to plan for and anticipate.

Several years earlier, I had been to Paris, and I wanted to see more of France, but I don’t speak French, so I booked a land tour of France with Overseas Adventure Travel (O.A.T.) for March 2022. It was more than a year away, and I bought insurance so I could postpone if need be, but once it was booked, the trip dangled in front of me like a sparking gem.

I began to read books set in France, particularly books related to World War II and the actions of the French government and the resistance movement. I love history and especially enjoy reading historical fiction.

My mom’s care became more consuming as the weeks and months went on, and my dream of traveling in France helped sustain me.

My mom died in June, and grief replaced dreaming; France settled somewhere in the recesses of my brain.

And then one day last November, I remembered my trip to France. I called OAT and asked where I was in the process. Yes, I had booked the trip; I still needed to do some administrative tasks and book my flights. Once those were completed, I began again to dream of France.

Since I was going to Europe, I decided to add a week at the beginning of my trip to visit friends in Ireland. It was great to see them again after five years, and we had a wonderful time. Then I was on to France.

On the way from the Charles De Gaulle Airport to Fontainebleau (the first stop on my tour) I noticed trees along the highway which had things that seemed to be huge nests in them. I asked the tour guide, and he said they were mistletoe.

He explained that mistletoe is a parasite and if left untreated, it kills the trees.

I had never given any thought to where mistletoe grows or that it might be harmful. This is going to be an adventure of learning, I thought—beyond my expectations or hopes or dreams.

Sure enough, there were surprises almost every day. We traveled for three weeks, from Fontainebleau to Normandy in the north, south to Carcassonne, and north to Paris—the mistletoe in the trees along the highways serving as a reminder to let go of my expectations and be open.

Looking back

In the way of the digital world, this popped up in my computer, seemingly out of nowhere. It may have been the first post on my blog nine years ago! Since this is the weekend before Lent, I thought I would repost it:

Last year on the Sunday before Lent, we heard the prophet Isaiah proclaim that God is “doing something new.” Those words caught my attention. God was definitely doing something new in my life at the time.

My best friend Jim was living with me, and he was dying from brain cancer. As he and I looked ahead to Lent, we talked about what new God was doing. We were fairly certain Jim would die before Easter, and he was looking at Lent as his final journey to Jerusalem; he was on his way home to God.

I was walking by Jim’s side, and every day brought something new—new symptoms, new issues and new ways to know my inadequacies. I had no prior medical experience, and nothing in my life to that point prepared me for caring for someone with end-stage brain cancer. Every day I learned something new.

Every day also brought little joys as we learned to let go and trust God. Family and friends helped us in many ways—shopping, cooking, doing laundry and working in the garden to name a few. I had a deep appreciation for people who responded without hesitation to my calls for help and who gave selflessly. Their generosity touched me and affirmed my faith. 

Jim lived until the Tuesday of Holy Week and died at home and at peace. Since Jim’s death, I have continued to be aware that God is doing something new in my life. My old life is gone, and I am creating a new life.

I want to hold onto the lessons I learned during Jim’s illness and let them guide me into the next chapter of my life. I want to be open to whatever new God is doing in my life.

Thinking of love

Late last year, someone I had known in college, but hadn’t seen in more than twenty years, messaged me. We got together for coffee, and he updated on people I had known in college.

“I always thought of him as the one who got away,” I said when we got around to this one guy I had really liked but was too scared to do anything about.

I do think of him as the one who got away, but I could not believe I had actually said it out loud. Vulnerability is not my strong suit, so this verbal admission surprised me.

Later that same week, I heard a radio show about regret, and I recalled that conversation. I regret that I let my fears determine my future.

I started to think of other times when I had closed the door on the possibility of relationship. I remembered a man I had met at the end of my summer semester in Spain. He was an architect in Algericas, and I was about to leave the country. I said I would write when I got home, but I didn’t. To what end?

Similarly, the guy in upstate New York I had met on a weekend trip to Ithaca. He wrote me beautiful love letters and even drove the 200 miles to see me several times. But I was not going to move to New York, and he had no desire to move to Pennsylvania, so what was the point of pursuing a relationship?

Geographically undesirable, I thought both times.

Looking back, I can see that pragmatism was the coverup for my fear.

Last week, I watched the movie Frozen (not for the first time, but the first time in several years).

My mom died last June, and throughout the final months of her life, I had advised my sisters (and told myself) to let it go when people said things that were critical of the care we were giving my mom.

I must have said let it go hundreds of times in those last six months of my mom’s life.

After my mom died and people continued to express their opinions about what we should have or could have done to extend my mom’s life (even though she was 95 years old and had major health issues), I suggested to my sisters that we get Elsa t-shirts that said let it go.

I decided to watch Frozen again if for no other reason than to see Elsa letting go.

The line that caught my attention this time, though, was only an act of true love will thaw a frozen heart.

I wondered if my heart is frozen. Had all those times when I had said “no” to the possibility of love frozen my heart? Had shutting down on potential closed me to opportunity?

What can I learn from my past decisions and regrets?  How do I move past fear to freedom? How do I let go and become open to love?

Making plans

My childhood was somewhat chaotic, and I learned early on that planning something did not necessarily mean it would happen. There were too many moving parts and too many things that were beyond my mother’s control. My takeaway was, don’t bother to plan because whatever I plan is unlikely to happen.

I took that belief into adulthood, and it wasn’t until my mid-thirties that I planned my first vacation—a windjammer cruise in Maine. I made the initial deposit in January, for a trip that was to happen in August, and then I waited for whatever was going to go wrong to go wrong.

Everything went according to plan, though, until the day my friend and I were driving north on I-95 and an overturned truck somewhere in Connecticut closed the expressway for five hours. Fortunately, I had planned an extra day, so we still had plenty of time to get to Maine, board the Schooner J & E Riggin and have a wonderful week of sailing along the coast.

Schooner J&E Riggin

My childhood belief was shattered by that trip. It turned out I could plan a vacation and it would happen.

Since then, I have planned and taken many trips. Sometimes there are hitches (like the time I miscalculated the twenty-four-hour clock conversion and almost missed my plane to Poland), but I take the attitude that everything that happens is part of the adventure (like the time I missed a connection in Heathrow and was invited to stay for afternoon prayer in the chapel).

Fast forward to the year I was to turn sixty and began to plan how I would celebrate that milestone birthday. I decided on two things—a return trip to Poland and a thirty-day silent retreat (something I had wanted to do for about fifteen years but having the time and money had not coincided).

I spent a few months of that year exploring options, and then, about four months before my birthday, my best friend was diagnosed with a very aggressive form of a non-curable brain cancer. Suddenly, my plans seemed inconsequential and were set aside.

Jim and I celebrated my sixtieth birthday at a friend’s condo overlooking the Jersey Shore, and when the dolphins appeared mid-afternoon, Jim said, “They are singing happy birthday to you.” It was the last birthday I celebrated with him.

Ten years have passed, and I have still not returned to Poland nor gone on a thirty-day retreat; I have done other travel but neither of those.

Now I am looking forward to turning seventy in the fall and thinking how I will celebrate this milestone. I am planning to go to Europe for an extended time in 2022 and am enjoying the researching and planning, fully aware that there are many moving parts and things that are beyond my control.

Cancer and COVID have taught me to live life to the full. It is good to make plans—and to remember to let go of control and enjoy the adventure.

Turning the page

I was convicted the other day by Jake Owensby’s post about unity.

Full disclosure: I don’t watch the news or read a newspaper or listen to the news (other than if I happen to be in my car and it comes on). I am an ostrich when it comes current events. I know the headlines, but not much else.

Friends fill me in when something monumental happens, but for the most part, the divisiveness and aggression in our country burdens me, and I choose to opt out.

It all started when my friend Jim got brain cancer and there was no room in my psyche for what was happening in the world. All my energy went into taking care of Jim and holding onto my job. Jim watched the news and would brief me on what was happening, and I found that this system worked for me. I became a news dabbler.

After Jim died, I grieved, and my pain was enough; I did not need to hear about crime, war or political spats.

Then I just got used to living shallow when it came to the news. It all just seemed like “different day, same story” and I did not find it helpful to my mental health to tune in.

I don’t like being angry, and that is mainly how I feel when I hear the news. I am tired of how little progress we make as a society.

For example, in the 1960’s and 1970’s many women campaigned to change language that excluded them. It was common for “men” to be used as the word for “people,” and men would say women were included in that word, which never made sense to me. By that argument, the word “women” should have been used because it does include “men.”

Over time, the use of “men” to mean everyone changed. In church, we went from saying “brothers” to “brothers and sisters” and from “brethren” to “people.”

But here we are, fifty years on, and “men” has been replaced by “guys” which is just another word for “men.”

There are no female guys, but I cannot tell you how many times restaurant servers have called me a guy. It infuriates me, and it infuriates me that women are complicit in it, that women exclude themselves by calling other women “guys.”

It is no mystery that we still have a gender wage gap and that women are excluded from many positions of leadership in our society. Words matter, and calling women “guys” reinforces the message that men are the top dogs.

And don’t get me started on racial injustice or the demeaning treatment of people who have disabilities or who are elderly or any number of issues I have cared about for the past fifty years.

So please forgive me if I am impatient, but my impatience does not excuse using words that tear down rather than build up. I will try harder to seek unity in what I say and do.

Don’t judge

“Don’t judge, Aunt Madeline,” my teenaged niece said to me. Although I don’t remember what her mother and I had been talking about or my exact response to her, I can imagine I claimed—perhaps somewhat defensively—that I was not judging. I do recall that my niece rolled her eyes in that knowing ways teens can have.

I admit that I can be judgmental, and even as I defended myself with my niece, I knew she was probably right.

This encounter was at least ten years ago, and her admonition has stayed with me and helped me to be more aware of when I am being judgmental.

Recently, I have found my niece’s phrase, Don’t judge, coming to my mind on a regular basis.

I am trying to honor my mother’s wishes about how she wants to live and die, and I feel judged by those who think I am not doing right by my mom. Don’t judge, I want to say to these well-intentioned people.

“Everyone has an opinion,” I said to a friend after hearing from yet another person offering suggestions about my mother’s situation.

The truth is that I agree that my mother’s situation is precarious, but she is ninety-four years old and she is not a threat to anyone. She wants to live and die in her own home—something I think most people can understand. Who wants to live in a nursing home? or to die in a hospital?

But sending elderly people to congregate settings has become such an accepted practice in our country that the idea of someone staying at home or living with family is considered unusual or even abnormal.

Yesterday, a home health worker told me I need to put my foot down and make my mother leave her home. “Stop harassing my daughter,” my mother said. “I am fine.” She knows what she wants.

I know how difficult it can be to take care of someone at home—I cared for my friend Jim at home when he had brain cancer. Everyday was a lesson in accepting the reality of our situation and letting go of expectations.

I felt judged then, too, by people who had lots of ideas of where I should take Jim for treatment and what kind of food I should be preparing for him and on and on.

I believe that people die the way they have lived. My mother has always been fiercely independent, and she has also always been suspicious of doctors, medicine and congregate settings. My dad, too, avoided doctors and when he had a major stroke, my mother did not call 911. Rather, we called hospice and kept my dad comfortable at home until he died three months later.

I have known several other people who died at home, including my friend Ted, and my neighbors Domenic, Margaret and Mary. A hundred years ago, most people died at home.

I am doing the best I can, so please don’t judge me.

What I learned from unexpected events

This week, Christians celebrate that God became human in the form of an infant child. The story is full of unexpected twists and turns—Mary becomes pregnant even though she is a virgin; Joseph stays true to his commitment to marry her because an angel appears to him in a dream; and Mary and Joseph trek to his hometown for a census, only to find no room for them at the inn.

It is easy to imagine the people in this story saying, “I didn’t expect that” or “I didn’t see that coming.”

“How was the past decade for you?” someone asked on a radio show this week.

My first reaction was “Ugh!” The past decade was a tough one for me—full of unexpected twists and turns. Many times, I said, “I didn’t expect that” or “I didn’t see that coming.”

If someone had asked me at the end of 2009 to predict what the next decade would bring, I would not have been able to guess most of what happened over the past ten years.

It started in December 2009, when my cousin died from pancreatic cancer. Her death rocked my world on several levels. She was near my age (too young to die) and she lived away from family (as did I). She was unwilling to talk about her illness and seemed to be in denial that she was about to die.

I grew up in a house where denial was a way of life. Years of therapy have helped me learn a different way, but my cousin’s death made me wonder if I would revert to the fallback position of denial if something catastrophic happened to me. I began to ask myself how I would react if I was diagnosed with cancer or another terminal illness.

Of course, we only know what we will do when we are faced with the situation, but my cousin’s death made me face my own mortality.

Over the next six years, five friends died from cancer and one (who was only twenty-six) died from a heart attack.

Plus, I moved back to my home state to be near my family.  

It was a decade of change and loss, and I am happy to put it behind me.

At the same time, I learned a lot during this decade.

I am not the same person I was ten years ago and much of that change happened because of the challenges I had to face.

I learned that I really would step up in a crisis, take someone into my home and help him to have the kind of death he wanted.

I learned to be more honest and realistic, to let go of unmet expectations and accept reality.

I learned to spend more time and energy on what really matters and give little time or energy to petty problems or contrived dramas. “Is it brain cancer?” I ask.

Unexpected events happen; how we respond to them is what makes the difference.  

Caring for an aging parent

My mother likes to quote her mother. Almost every conversation includes at least one, “As my mother used to say…” followed by some pithy comment from my grandmother.

These comments are all in Polish, the language my grandmother spoke, and my mother quotes her mother in Polish and then translates them into English. She gets great joy from repeating her mother’s words.

My grandmother was a farmer and her sayings are usually quite earthy.

Although my grandmother lived in two countries (Poland and the U.S.), in each place, her life was fairly limited. She lived in small, rural communities in both countries, and her life was ordered by the seasons. She seemed quite content with the boundaries of her life in northern Michigan.

I knew my grandmother, having spent time every summer with her on the farm. She was always kind to me, and I felt safe with her. I was fortunate to be present when she died at age ninety-six.

My mother is now ninety-three. I moved home six years ago, in large part, to be near her, and I check on her several times a week. She loves to play cards and we usually get in a few games every week.

My mother is fiercely independent. She also has unrealistic expectations of herself and her capabilities.

She still drives, even though her eye doctor, primary care physician and physical therapist have all told her to stop. She denies that her reflexes are diminished in any way—or her hearing or her eyesight. She becomes very defensive when someone suggests otherwise.

On the one hand, my mother wants to be left alone, to do as she pleases. But when she has a health scare, she wants help…until she is better. Then she denies she ever needed help. She was fine and we should have just left her alone.

It is a vicious circle.

When my father had a major stroke, my mother did not call 911. My father had been very clear that he did not want to go to the hospital nor be resuscitated. “If you walk in and think I am dead,” he used to say, “go out for another hour and then come back.” He dreaded hospitals and the thought of being kept alive by machines.

I have come to realize the great strength it took my mother to honor my father’s wishes. I am not that strong. When my mother is in distress, disoriented, or displaying other signs of serious illness, I cannot leave her, even though I know that is what she says she wants.

My aunt made the health care decisions for my grandmother, so my mother was spared the responsibility and the guilt. My grandmother died in hospital connected to machines. It is not what my mother wants, nor do I want it for her.

As anyone caring for an aging parent can probably appreciate, it is difficult to walk the fine line between supporting independence and ensuring safety.

I pray for wisdom.

Lessons in letting go

“By the time your thirty, you’re going to have arthritis in your knees,” my dad used to tell me when I went out in winter wearing what he considered to be a too-short skirt. “Yeah, yeah, yeah,” would be my response. I wore short skirts because they were in style, and thirty seemed so far away.

“Too cool to be cold,” was how I came to think of teenagers when I lived in Winnipeg and saw teens standing at the bus stop in winter with unzipped jackets, no scarves, hats or gloves. By then, I was in my thirties, and I wore a parka, hat, mittens and leg warmers. Then my dad said I looked like Nanuk of the North.

But I had moved beyond caring about style and cared more about warmth.

I was reminded of that shift in my thinking when I took my ninety-two-year-old mother to church last week. It was twenty degrees outside, and she wore a lightweight jacket. “You need a winter coat,” I said. “This is a winter coat,” she countered. “It has a flannel lining,” she said through chattering teeth.

At church, I pointed out the way people around us were dressed—most of them wearing down-filled parkas. She harrumphed.

When I picked my mother up on Thanksgiving, I got her winter coat out of the closet and helped her into it. No discussion.

I have come to realize my mother’s body thermostat is wonky, and maybe this is something that is true for young people and old people. In the summer, my mother sits in stifling heat and does not seem to notice. “I understand why people die from heat stroke,” I said to her one summer day when her house felt suffocating to me. She was not bothered in the least.When I was taking care of my friend Jim when he had brain cancer, I learned a lot about letting go. It seemed that every day, I was faced with some situation that reminded me that I had no control and needed to let go of my expectations or agenda.

In the midst of caregiving, when I was exhausted, letting go seemed easier. I did not have the energy to fight, so I gave in. “God has him,” I would remind myself when he did reckless things like come downstairs while I was out or try to walk without aid of his walker.

“God has her,” I now say about my mother when she goes to the basement or second floor of her house for no good reason. My mother is very unsteady on her feet but still drives (“I don’t fall when I am sitting down,” she explains). She is incorrigible.

Picking your battles, I think parents call it when trying to teach their children things that are in their children’s best interest.

Short skirts or winter coats—I have a much better understanding of my dad’s concern; I would like to apologize for being so headstrong.

 

 

 

Aware of emotions

One of the sessions I attended at the Center for Mind Body Medicine’s Cancer Caregivers training was called Mobilizing, Transforming and Celebrating Emotions. The presenter talked about the need to be aware of our emotions and to express them through movement, drawing, writing, etc. He talked about catharsis and coming into balance.

The presentation was followed by a small-group session where we were led through a guided reflection to help us become more aware of an emotion that was affecting us. We then expressed our awareness through a seven-minute writing exercise—a dialog with that emotion.

Anxiety was the emotion that presented itself to me both during the presentation and again during the guided reflection. The group leader suggested some questions to bring greater awareness of situations we experienced the emotion and ways it was impacting our lives.My dialog with anxiety went like this:

Me: Where do you come from? What do you want? What can I do to lessen your impact on me?

Anxiety: Lessen my impact? Who said you need to lessen my impact or that I want to move out of your life?

Me: I want you gone—or at least I want you to be less powerful and have less control in my life. I want to be at peace, not to have my stomach clench when I am asked a question or when an emotion arises. I want to be able to live in joy and not guilt, to be confident and not second-guess myself, to trust my experiences of affirmation. I want to be proud of my accomplishments and to believe in my capabilities.

I think—I believe—that I can only be free to what “new” God is doing in my life, to actually trust it and embrace it if my anxiety lessens.

Coming to this workshop, I can see how much my anxiety has lessened by what I share—and I can see how much anxiety I still have.Anxiety: Perhaps that is the secret—trust and celebrate every, single time you push against me; every time you move against your resistance and fear. Take it in, Jim used to tell you. So, I say it, too. Take it in. I am part of your ancient history. You are not that little girl any more. You can protect yourself. You know what you need to be safe and free. Do that.