Category Archives: caregiving

It’s time to appreciate the nurses literally and figuratively

During eight years of caregiving for a wife with ovarian cancer, there were many times when nurses served to help us get through the challenges of treatment, surgeries, chemotherapy and in the end, palliative care. I wrote the following essay about the value of nurses for the caregiving group that formed around us. Later it was published in The Right Kind of Pride, the book I wrote about our journey and for which this blog is named. 

With nurses doing so much work on the front lines and as first responders during the Coronavirus and Covid-19 epidemic, this bit of testimony is meant to encourage nurses everywhere, and to urge people to appreciate their training and work

Nurses, literally and figuratively

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Tuesday, December 20, 2011, 5:30 PM

Two days after my wife’s surgery I woke early to head west and pick up our dog to go home and check on the house. Stepping onto the elevator I encountered two tired-looking nurses leaning on the back wall.

“Shift over?” I asked. “Yes,” one of them breathed, trying not to look too relieved.

“Well, I admire your work,” I told them. “Patients can be a pain in the butt, I’m sure.”

“You said it, not me!” one of them replied as they headed out the elevator and down the hallway, exchanging knowing glances.

No easy gig

Nursing is no easy gig, of course. Nothing in the medical profession really is.

They see so much, both literally and figuratively. Nursing is the most intimate of all professions. Even more so than being a doctor, in some ways. From inserting catheters to administering shots to washing patients who can’t wash, nurses see humanity up close and personal.

There are also broader dimensions. Families in crisis. Human frailty laid bare. The human condition. On those dynamics rest hopes of healing. That is why medicine exists, and nurses carry it out to the best of their abilities.

Of course, nurses deal with varied results and varied perceptions of their profession. Not having worked in the medical field, I do not entirely know what the environment is like. But some nurses I’ve met speak of doctors that do not treat them well, or show respect. Maybe the pecking order at some hospitals is harsh. Yet the good hospitals seem to celebrate every role from orderly to surgeons. And there really are some great hospitals in the area where we live. We can be grateful for that. And this is no paid testimonial.

But I’ll reiterate: When we think about who provides a great amount of care and recovery in medicine, we should never forget to thank the nurses, both men, and women. There was Allan, and Silvia, Rafaela, and Kathy. the list goes on. All with attributes that add up to good care.

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Professional caregiving

Because nursing is basically professional caregiving, it is something to observe when you’ve been placed in the role of caregiver yourself.

The challenging part is that the tools have advanced but the needs have not changed. The records have gone digital. The ability to monitor patients is so sophisticated. Yet it is still the human responsibility of nurses to read those signs and pass them back along the chain for the doctors and surgeons to study. Front line. First responders. In tune. In touch. That’s the role of nurses.

It is a cosmopolitan profession. The nursing professionals in the four or five hospitals with which we have had experience are quite racially diverse. Hospitals seem to hire nurses to match the culture and backgrounds of their constituent populations. But not always.

Language is another important aspect of nursing. For example, at the network hospital where Linda had her surgery, the primary phone greeting is given in several Eastern European languages. Diversity is not some casual thing at a hospital. It really can mean life or death.

Communication

Style of communication is also important in nursing. Some nurses excel in this category, with a gift for compassion that is comforting and encouraging. Others are more business-like, and their attributes can be of tremendous value in many circumstances. Linda’s chemo nurse this time around was a focused woman whose competency and the organization was of great assurance. Success in chemotherapy treatment can depend on the nurse’s ability not only to administer the medicine but also to track and monitor patient response in real-time (daily response to treatment, blood counts and side effects and over the course of treatments (chemo tolerance and patient affect) these attenuations add up. Literally and figuratively.

Racing for life

Getting chemo really is like running a marathon; checking your vitals along the way, taking aid at the proper points and pacing your effort so you don’t falter. Chemo is a marathon.

But surgery is a sprint of sorts. Our surgeons fixed a hernia, did a colon resection and removed a 31mm cancer tumor in about 2.5 hours. That’s fast and brilliant work. You can worship athletes all you want. Medical doctors like these deserve real accolades.

It is the nurses however who are the trainers that get you back into shape after the taxing sprint of surgery or the exhausting marathon of chemo. With cancer sometimes you need both to be successful. Fast-twitch and slow twitch.

The range of human foible

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That and a sense of perspective and humor helps. I was really glad the people at the nursing station had a sense of humor when after the first night at the hospital I trundled out of Lin- da’s room at 5:00 a.m. to visit the bathroom down the hall. No one looks dignified at that hour, and I felt a little like a college freshman in a “walk of shame” down the dormitory hall after an all-nighter. But no one said a word. They see weirder things every day. Lucky for me, a bald man seldom has bad hair days.

Nurses see it all, of course, the whole range of human foible. Being able to encourage patients with an occasional jest about the difficulties of recovery can break the ice and open channels in working through pain or other humbling issues such as finding ways to go to the bathroom when it is far from easy and convenient for the patient. All this basic stuff,. They have to know when and how to be light about it, and when not.

Startups and bending over backward

Nurses are the professionals who get it all going for people again, over and over. Week after week. Year after year. Think of all the focus and dedication it takes to be a nurse for 5, 10 or 25 years. And people do it.

The nurse who checked Linda out of the hospital has been working in the same phase of nursing for 25 years. She was immensely practical and detail-oriented, dispensing instructions so that we would know how to care for the surgical wounds and tend to bathroom matters the right way. That nurse fit her job.

A young nurse named Rafaela checked on Linda regularly during her week in the hospital. She seemed to appear like magic from around the curtain whenever there was a need in the room. That nurse excelled in care.

The first night after surgery, Linda’s nurse was a soft-spoken woman who struck up a conversation starting with a compliment about the fact that I was staying overnight with my wife. Perhaps it is not so common for people to stay over. The new Planetree model for health care offers a more humanistic approach to medicine and facilities, especially hospitals. Hospitals now provide comfortable couches that convert into beds so that family or supportive friends can stay overnight with a patient.

I can tell you that’s a huge improvement from the night spent next to her bed back in 2007 when the only available place to sleep next to her was something like a Medieval torture device. The vinyl recliner on which I slept formed a pronounced hump approximately the curve of a mature dolphin in mid-jump. It was not the most comfortable night of sleep in my life, punctuated as well by beeps and whistles and the bustle of nurses hustling in and out for blood pressure checks and temperature readings. They were just doing their job, yet I felt like it was a torturous night of sleep deprivation in a black site somewhere in Eastern Europe. I exaggerate, but when you’re tired the mind works overtime.

To her everlasting credit, my mother-in-law, who had done overnight duty on the dolphin chair the previous evening tried giving me fair warning without scaring me off completely. But let us say that it was one of the 3 worst nights of sleep in my life. The top 2 were surviving a bad bout of the flu and one very long night in the late 1980s with a prostate infection that made my lower abdomen feel like I’d swallowed an angry serpent. I don’t really want to list a Top 10. The memories are too painful.

But the dolphin chair simply had to do in that instance. Such are the duties of caregivers at times. It’s like God wants to humble you into sympathy for the patient. So I thank God for Planetree now.

Patience and patients

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Still, as a caregiver, I lose patience in too many situations, grow irrationally embittered by circumstance or fall too quickly into self-pity or worse, anger or depression. What is the cure for those selfish emotions? Mostly, it’s gratitude. Step back and take a breath. Be a nurse to your own soul. Forgive your- self. Then get back to service.

Because it’s a miraculous little dynamic that when we fix our focus on serving others we wind up serving our own true best interests. That’s where we learn we are not alone in our challenges and our minds off our own problems.

People who through simple self-control and a modest demeanor exhibit such patience always amaze me. Admittedly I envy people like that, especially when failing to manage that level of self-control myself. Where do some people get such strength of character? Can it be learned? Are some people just natural caregivers?

Probably those questions cheapen the issue. It is, of course, a complex combination of things that makes people good caregivers, or nurses, or doctors. Or perhaps it is simplicity that makes it possible. Be content. Learn to give. Don’t make life harder than it needs to be.

When it comes to institutional compassion, that is a goal much harder to achieve in some respects. The hospital where Linda had her surgery communicates its compassionate values in many ways. If I recall correctly, one of the messages posted on the wall reads, “We welcome all to this place of healing.” There’s definitely room for a religious message in there, but not an exclusive one. As it turns out, our nation is actually formed on a similar, inclusive ambiguity. So uniquely Ameri- can. Yet people seem to miss the subtlety in that. Want to turn it into an ideology not in keeping with the Constitution which guarantees freedom of religion and freedom from religion.

We are all equal souls. Nurses probably know that better than most. There’s nothing special about any of our functions. We all poop and pee. We all have a heartbeat. Breathe. Think. Cry out in pain. Laugh. Worry. Hope. Heal if possible. All part of the process. Such is humanity.

You know that cynical phrase, “some people are more equal than others…” Well, a nurse cannot afford to think like that. People notice if that sort of thinking creeps in.

When it’s your wife or your husband, your son or daughter, a close friend or even co-worker, you want the hospital and doctors and nurses taking care of them to do their very best to help them get well. It simply cannot matter whether someone is one race or the other, speaks Russian instead of English, or has no money to pay for the care they need.

Grace and blessings

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I can tell you we have been the beneficiaries of such care, in ways that absolutely flabbergasted our ability to comprehend the many forces working behind the scenes to ensure our welfare. The least we can do in response to this grace and these blessings is what? Give back in any way we can. Pay attention to those taking care of us. Express our appreciation.

And guess what? Opportunities to reach outcome up more often than you might think. It is true that when you are in a position of most vulnerability, you are best able to share in the pain and challenges in other people’s lives.

Our nurse during Linda’s first night in recovery from surgery was so caring and attentive that conversation naturally flowed to the discussion of family and friends. It turns out our nurse was a single mom whose husband left her for another woman, leaving her to raise her two children alone. She was frustrated by how hard it was as a working mother–also attending graduate school–to meet someone, a man she could grow to love. She had nearly given up hope, she told us. Even the men on the Christian dating services turned out to be less than honorable.

It’s a story quite familiar to my wife who over the years has worked with dozens of families and single moms in her job as a preschool teacher. At one point after checking up on Linda, conversing while she worked, our nurse stopped and stood in the middle of the room, seeming to want to gather herself before moving on to other duties. We’d been talking about how she gave so much time to raise her kids, got them to rehearsals and practices and games. But how it was all worth it in the end because it keeps them busy even if it wears her out.

We talked of God and faith, too. She shared several of her favorite Bible passages with us. We told her we’d recently been in a bible course where we read the entire book in 90 days. “Oh, I don’t think I could do that,” she sighed.

“12 pages a day,” Linda assured her.

I admitted. “I didn’t keep up and had to hustle to finish.”

We encouraged her that all her work as a mom was worth it. That her children would turn out to be a blessing to her for her dedication. “Yes, I know,” she murmured. “But I have had to sacrifice a lot.”

Then she stood quietly in the middle of the room, seeming to contemplate her place in the universe. Standing in front of the privacy curtain and silhouetted by the light from the hallway behind her, our nurse stood and stared across the room, soaking up the relative stillness until she said quietly, “Well, God Bless you guys.”

It’s impossible to know the exact circumstances people face, or how they truly feel. Linda turned to me after our nurse had left and said, “She reminds me of so many single moms I’ve met, just “poured out” from having to do everything themselves. Wanting to be filled up spiritually.”

We met a veritable parade of nurses the following 5-6 days. All types of people and styles of care. Some were talkative. Others were focused and efficient. All played a brief yet important role in our lives. We can only hope that in some small way we give back to these people who daily give so much of themselves. Nurses literally and figuratively rule as far as we’re concerned.

From bitter to sweet memories on the 7th anniversary of my late wife’s passing

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Our early dating years.

Tomorrow marks seven years since my late wife Linda Cudworth died after eight years of survivorship through ovarian cancer. The diagnosis came as a shock, as did multiple episodes of recurrence. Each time we’d reel from the news, go back into treatment and compartmentalize the best we could by using the phrase, “It is what it is.”

Those last months during the winter and spring of 2013 were confusing because doctors treating her for seizures learned there was a tumor in her brain. I’ve never published photos of her during that last round of radiation treatment because while we made the best of it, snapping pics using my laptop Photo Booth and laughing as the absurdity of it all, it was a strange world we were about to enter, because ovarian cancer was not supposed to be able to pass through the blood-brain barrier. But it did.

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All dressed up and going somewhere.

We treated it with radiation and she started a regimen of steroids to contain the swelling and her personality became magnified. She lost native inhibitions about many things. On one hand, that was disorienting, as it ultimately became impossible for her to continue teaching at the preschool she loved. On the other hand, it proved to be liberating as she used those final bursts of steroid-fueled energy to buy a beautiful piece of art. She also stayed up late at night to research and buy a new car even though she abhorred going online. In sum she lived life to the fullest, however manic it might have been.

And that was bittersweet. Because when the steroids stopped, so did her energy. She passed away a few weeks later in the company of her husband and two children. Still, she never lost her sense of humor. After I’d arranged for palliative care in our home, we moved her from our master bedroom to the hospital bed in the living room where nurses and such could tend to her properly. The journey from bedroom to living room was awkward and difficult given her weakened state, but she looked up at me once she was tucked into the cover and smiled while saying, “I thought I wasn’t supposed to suffer.”

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On our honeymoon at Waterton-Glacier

Most of that was indignity, and my late wife was a person who believed and abided in dignity in all she did. It was part of her beauty as a person. She also respected propriety, which made it amusing to think back on the fact that I showed up a night early for our first date. “What are you doing here?” she asked. “Our date is tomorrow night!”

She agreed to go out for a short dinner before hosting her parent-teacher conferences at the high school where she taught special education. But before we parted that evening, I got a taste of her naturally biting humor in reminding me that I ought to call confirm a date.

We got to know each other a little that evening and followed up with a hike to Starved Rock State Park. Stopping on a high ledge for a picnic on a mild November day, she broke out a lunch of apple-walnut bread sandwiches, cheese and wine served from a leather-covered flask. That implement was a remnant of her high school hippie days.

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Enjoying our festive 4th of July traditions.

We dated four years and even survived a long-distance romance early on when I was transferred from Chicago to a marketing position in Philadelphia. She visited me on Thanksgiving that year despite her mother’s objections, and I moved back to the Midwest the following spring when the company decided to disband the entire marketing department due to misguidance by the Vice President.

That would be one of a few job upheavals experienced over the years, and we survived them all. Our children came along in our late 20s and early 30s. Soon our lives were immersed in preschool, elementary adventures, and all the way through high school performances in music and drama.

We also belonged to the highly conservative church synod in which she’d grown up. The pastor that married us at the time was, however, a grandly considerate and patently open-minded man that once gave a sermon titled, “Do-gooders and bleeding hearts : Jesus was the original liberal.”

Emmy in Garden

Our lives swirled with church activities as our children passed through Sunday School all the way to confirmation, where they roundly passed the tests despite having to choke down conservative ideology about evolution preached by the pastor that had long-since replaced our marriage counselor.

After 25 years we moved up the road to a more tolerant and progressive Lutheran church. It was gratifying to learn that our friends from the former church did not abandon us. In fact without their help and the guidance of one of Linda’s best friends, a woman named Linda Culley, we would not have had as much grace and good fortune in the face of the perpetual challenges served up by cancer survivorship.

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At 7 Mile Pinecrest

Now what I like to think about are the camping trips we took to the north woods while dating, and later, when we had small children, we’d spend a week each summer at a humble resort called 7 Mile Pinecrest thirteen miles east of Eagle River, Wisconsin.

Our children paddled around in the water and slipped off to Secret Places in the woods while their father fished in the early and late hours and went for runs half-naked in the pine woods north of the resort, swatting at deer flies the entire time.

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Linda and Evan reading together.

At the center of all that family joy and adventures was Linda, whipping up sandwiches and sitting with a glass of wine on the small beach overlooking the lake. That was the only time the Do Not Disturb sign seemed to rise on the Mom Flag.

And when we weren’t visiting or traveling or doing school activities, Linda was immersed in planning, purchasing and planting her garden every year. Her priorities were indeed God, Family, and Flowers.

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She was a really good person. That’s what so many friends have told me over the years. I was married to a really good person, and that makes me think of what a close friend told me when he first met her. “This is a good one, Cuddy. Don’t let her get away.”

It is bittersweet and sweet to think about all those years together. My daughter went through our stacks of photos to digitize the images and I’ve waited until today to open it up and pull some memories out to post with this blog. Holding people close to your heart is first and foremost the right kind of pride. I hope this writing inspires you to consider the importance of people in your lives.

And to realize as well that life does go on. She told our close friend Linda Culley that she knew, if she were to pass away from cancer, that I would meet someone again. And I have found love. But it does not mean the years with Linda Cudworth are forgotten. Far from it.

These memories can lift us up. Give us courage to go on. Cherish the life we had as well as the life we have. And that is the right kind of pride as well.

 

Six years on and beyond

Linda and Chris.jpgDuring eight years of cancer caregiving for my late wife Linda, who passed away six years ago this day on March 26, 2013, I grew to understand many things about other people. How some have such a heart for others. How giving they could be. How friends willingly took on chores too difficult to imagine. All of it done without judgment. These things came true in our lives.

There were also mysteries that were beyond explanation and should remain that way. During one period of time when I was out of work to take care of her needs, we sat together at our dining room table and added up the money needed to cover our bills. We’d already paid the $2000 COBRA monthly premium for health insurance. That was absolutely vital or we’d be broke in a minute from a running list of medical bills that came our way. These included chemotherapy treatments and surgeries that cost tens of thousands of dollars. In the days before the Affordable Care Act and protection from  pre-existing conditions, clinging to your health care was a life or death matter.

Somehow we made it week-to-week, month-to-month and year-to-year. But sometimes we just turned to prayer for help. So it was that we determined the need for $3500 to cover the rest of our bills. During periods when I had to be out of work to take care of her, I’d hustle up freelance work to cover our bills and more.

LInda and Chris.pngBut it was stressful. Sometimes we’d be pressed financially, and it was on one of those nights that we added up the bills, said our prayer and got her into bed to rest.

The next morning I came out to the kitchen to make her oatmeal and heard the front door mail slot creak open and shut. Whatever fell through the door made a solid thump on the floor. I walked out to check on the delivery because people were often bringing us food and other requests made through our caregiving website.

This package was different. The envelope was thick and bulging. I picked it up and opened the tab. Inside was a wad of money. $3700 worth.

I broke into quiet tears and stood there looking out the door. Whoever dropped off that envelope and collected that money was already gone. To this day I have inklings about who might have gathered that cash but in many respects prefer to leave it as a mystery. That’s what the folks who gave us the money apparently wanted. We used it wisely and gave a prayer of gratitude in response.

Yes, it’s been six years since my late wife passed away. But the kindness and grace of others that sustained us has never left my mind. I know it never left her mind either. In so many ways the support of others kept her alive during all those years in and out of remission after her initial diagnosis. We drew on that support for strength and hope during periods of both sickness and health. Our children felt that support, and in the ensuing years that remains an important part of our collective grieving process. Last year we held a memorial gathering in her honor. Rightfully so.

She and I met in 1981 and were married for twenty-eight years. Yet in many ways, we were also married to the world around us. It was that bond of vulnerability and hope that drew on the strength of others and became our main source of pride. The Right Kind of Pride. 

 

 

 

A legacy that is still alive

MuesPicnicRecently my son Evan drove west to California for a new venture in his career. On the way, he stopped by the South Rim of the Grand Canyon. Approaching the park, the snow was two feet deep, he informed us. He arrived in time to see the sun setting.

Back home, my daughter made note on her social media account that she misses nature. That can happen for all of us. But Emily has made a point of immersing herself in concern for nature. She’s learned the plight of bees and butterflies, and captures her instinctual love for these creatures in amazing photographs.

Their mother Linda Cudworth would have been 59 years old today. She would have loved to hear the enthusiasm of her son Evan as he sat on the canyon rim going Live on Facebook as his many connections shared the moment.

She would also have been appreciative of the fact that her daughter embraces those bees and butterflies with such verve and purpose. We all learned monarch ranching from Linda Cudworth during the summer months. In the years since she passed away from ovarian cancer in 2013, we’ve ranched a few monarchs of our own. One summer we released 50 of the insects back into the wild after raising them from eggs detected on the bottom of a milkweed leaf. They would eat their way through the caterpillar stage and emerge from a chrysalis into free-flying male or female butterflies. Symbolic, you might say, of so many transitions in life.

Tattoos 

My daughter has a tattoo of monarchs and bees on her shoulder. My son has a symbolic symbol of flowers on his chest. But the real legacy is the tattoo she impressed upon their hearts through her exceptional care as a mother.

In all those years of marriage, I observed her dedication to such things. She invited the neighbor kids over to catch bugs and to show them the secret faces of nodding spring wildflowers and summer lilies. Some of these beauties have been transplanted from the garden we started in Batavia two decades ago. I gathered up the lily bulbs and inserted their yellow and white forms into the soil behind the house now shared with my fiancee.

These symbolize the fact that life indeed goes on. My children and in-laws have shared many memories of Linda over the last four years. We keep that legacy alive. But I am also fortunate to have met a woman that is not threatened or jealous of that legacy. As a result, it never needs be denied.

Additional roles

I believe my children can feel that in their lives. I certainly hope they do. It has been difficult at times to know how much to insert myself into their lives. On one hand, it is important not to helicopter their thoughts or experiences. On the other hand, a father to children that have lost their mother has an additional role to play.

What we have all tried to do, and I include my wife-t0-be’s family in this, is honor the legacy of the life we’ve lived and find the honor of the legacy we’re creating together. This is the true cycle of life, where love is at the heart, and people gather around it to share in the hope and determination required to embrace this world.

The fact that my children are now drawing upon nature for inspiration is likewise an inspiration to me. It shows that those many walks in the forest preserves (or ‘forced preserves,’ as my son once thought we were saying) were for good reasons.

Ashes and prairies

Following my wife’s passing, my children and I took some of her ashes and distributed them in the heart of a massive prairie. The sun was setting and we all recalled how she loved the place for its open spaces and its prairie soul. I thought about those ashes as I biked through the prairie yesterday, and how strange it really is that we all come and go in our time.

That is reason enough to hold on to the legacies that matter in our lives. And to make new rejoicing in the fact that we are here, and alive, where the flicker of butterfly wings demand our attention yet so many people seem to deny their importance in favor of this virtual mess going on this world.

No fan of fools

I can say without hesitation that my late wife would have been disgusted by all that has transpired in the last four years. She was a keen fan of the former President, whom she simply called “Barack” with a touch of respect and love in her voice.

While she was a loving person, she did not suffer fools gladly. We all loved her biting sense of humor that emerged at often unexpected times. There was always a touch of leadership in such remarks. “Don’t be fooled by fools,” she’d often intimate. So you can imagine how disgusted she would have been at the election of Donald Trump as President. A part of me is honestly glad she does not have to abide the mortal offense.

Because her dedication to the needs of small children and the practicalities of public and private education were evident in her preschool teaching. I specifically recall her admiration for a mother from the Hindu faith that brought their child to the Christian preschool where she taught. “There are many paths to God,” the woman responded when asked if there were any concerns with the educational format.

Achieving

Likewise, my late wife’s training in special education revealed her deep concern for the humble and less fortunate in this world. Arrogance by principle she did not abide, nor false pride. She worked with high school students with learning disabilities that included profound degrees of autism. Yet she also guided one of her students through the challenges of high school to make it through college and earn a playing spot in the NBA.

Many a social evening were spent with our close friends who were also teachers. Few people outside the teaching profession can comprehend the many ways teachers go beyond their job descriptions to positively affect the lives of young people in public education. And while my late wife genuinely thought the athletic world a bit vain, she also volunteered to direct the Cheer Club at the high school.

False vanity

Her amused disregard for athletic vanity could have its humorous consequences. When I took up cycling, she made fun of my tight-fitting cycling “kits” and called me Lady Legs for the tradition of shaving my gams, as serious cyclists do. Heck, back when we were dating, and I held back from going out the night before a running race, she teased that I had Golden Leg Syndrome.

Yet I persisted in my pursuits despite this brand of teasing, because every couple uses the other for balance. It does not pay to be too co-dependent either. So we found our respective spaces in this life, and worked together to encourage that same self-confidence and hunger for growth in our children. I see that belief at work in them still, and pray that they can continue to find love in this world among people who support it. That is the legacy that is still alive.

 

One long breath

CrowdThere were more than 2000 people milling around the start line of the Thanksgiving Turkey Trot in our hometown. My racing instincts from long ago sent me out to a quiet street for a one-mile warmup jog. It had already been an eventful week getting my house ready to host 12 people for Thanksgiving. I was looking for a place, I suppose, to take a deep, long breath before doing the race.

Perhaps my mind was trying to take in a bit too much information at that moment. We had scheduled a Memorial Service for my father Stewart the night before Thanksgiving so that family could visit and join in celebrating my father’s life and grieve his passing.

Me with folksAll those years of caregiving for him were not quite over. There were still financial issues to manage, and the sale of his home to discuss. All that functions like a practical soliloquy that must be sung in order to gain closure.

But the emotional bank accounts remain open forever, and it is best to invest some time sharing memories with others, and learning how they view the life that has passed on. This is particularly true for a parent, as not everyone has the same perspective on what they mean, and how they should be honored.

As principal caregiver, my role kept me close to my father all those years after his stroke in 2002. He lived a full decade after my mother pass away in 2005. My job had been support for her initially, which quickly transitioned to full caregiver after her survivorship with lymphoma and pancreatic cancer came to a quick close in November 2005. That meant a full-time caregiver was necessary to join Stew in the home.

Stew and OlgaNot knowing what to expect after those quick changes, it struck me one day while walking into the home of my father that there were no real rules to this game. I was in charge of his life in consultation with my brothers. That meant there were always bills to pay and issues to discuss about his health and needs.

Sometimes that made it difficult to address much else in life. Stewart was not fond of making small talk when there were things bothering him. That list and how to address it could take quite a long time during my visits two or three times a week. He’d lost his ability to speech due to the stroke, which meant that we had to engage in a series of yes or no questions to ascertain his concerns. Early in the stroke recovery he’d quickly grow frustrated. His emotions were also hair-trigger thin at times, setting him off on a session of arm waving and barking “NO NO NO!” whenever I failed to get the questions right.

Stew and Evan and EmilyThere were many times I’d try to push the conversation toward something more pleasant such as memories of his that he might like to share. That was a tough gig too, because we could easily stall if I did not guess the name of the person involved in the story he wanted to relate. Even before his stroke we all had problems not knowing all the friends and family he thought we should know.

“Dad,” my brothers and I would say, “I never knew that person…” we’d reply, and he’d get frustrated and demand, “Yes you do!”

But we seldom really knew them. My father was a highly social man and had many acquaintances from golf and bowling and work and life in IMG_4900general that we, his sons, had never actually met. Or if we had, we did not remember them. Which was worse?

That meant it was a work in progress over the years moderating discussions with my father. It hurt me to hear that my brothers were frustrated with their visits. Stew would store up a memory bank full of things he wanted to share and try to communicate it all in one grand session rather than being patient and happy with a few satisfying stories.

There was a whole lot of life lost after my father had his stroke. He’d share photos and get bits of information out, often in beautifully abstract Stew and Evan and Emilyfashion. But my dad always was an impatient man in some respects, and one could go there with the best intentions to have a nice talk and come home hurt by the exchange.

His caregivers had the same problems. But we ultimately made it work for thirteen years. He lived in his own home until the very week he died. All three of his other sons made it for a visit by circumstance, and my father passed away on a Saturday afternoon.

All this was coursing through my head as I warmed up for the race. It felt like I’d been inhaling and dealing with the stress of trying to please him for so long. Now it was over, for the most part.

We held a nice memorial service with both laughter and tears.

And on Thursday morning I jogged up the quiet street away from the crowds. The air was clammy and grey. I felt tired and slow. And as I reached a spot near the river I stopped in my own tracks and began to cry. Tears fell down on the wet sidewalk and I told my father that I loved him.
Stew and Olga.jpgEarlier I sat in McDonalds before warming up. My cell phone had some photos sent to me by my daughter and son the night before. They were photos of my father holding each of them in his arms. Truly, those images felt like yesterday. I felt sad at the time that had passed yet thankful for those memories. He was a wonderful grandparent and a good dad.

That’s about all you can say. The rest is part of one long breath we take throughout this life. It seems we’re always holding our breath for what comes next. Which is why I encourage you to let out a little air. Breathe out and let the air come back into your soul a bit. Breathe in the essence and reality of the people around you. Because they want your attention. They love you. The demands of life can wait. They seriously can.

Then take one long breath and smile. It’s worth it.

 

Lost and found on the day after my father died

Stewart Cudworth, born January 26, 1926. Died, October 17, 2015.
Stewart Cudworth, foreground. Born January 26, 1926. Died, October 17, 2015.

As I climbed in the car this morning the song In My Life sung by John Lennon of the Beatles was playing on the radio. I’ve sung and played that song many times on guitar, and know the lyrics well. But never have they sounded so prescient as today.

There are places I’ll remember
All my life though some have changed
Some forever not for better
Some have gone and some remain
All these places have their moments
With lovers and friends I still can recall
Some are dead and some are living
In my life I’ve loved them all

Yesterday my father died at 3:00 in the afternoon. The call came from the hospital, a kindly doctor trying to ease me into the knowledge that my father had passed away. He was beginning to go through the medical aspects of how my father had been cared for during the week, but I already knew the details. So I stopped the doctor and told him, “Your entire staff was wonderful. You gave my father an extra week or so to live, and all his sons got to come and be with him.”

In fact, my youngest brother had just visited that morning. He was in town by chance for a collegiate volleyball tournament with his daughter. He was quite close with my dad in many ways, perhaps the main son in the family that has dispensed wth any felt difficulties over time, and it was appropriate that he was the last son to visit.

But of all these friends and lovers
There is no one compares with you
And these memories lose their meaning
When I think of love as something new
Though I know I’ll never lose affection
For people and things that went before
I know I’ll often stop and think about them
In my life I love you more

My father was a passionately curious and often insistent man, willing to challenge our perceptions on any front. I recall the evening I stated that I’d seen some ducks on the river ice that day. “They were huddled together for warmth,” I said casually.

“How do you know they’re huddled for warmth?” my father asked.

To which I responded with some sort of angry retort. But that was my father. He wanted us to know the world did not accept everything we assumed we knew.

That was a lesson to be learned over and again. But the need to understand his thinking became a quality fo life issue when he had a stroke in 2002. That was when I first began assuming responsibility for his care. At first, it was my job to support my mother in her decisions about how dad should live. He moved through several care facilities with good and bad experiences before finally returning home with a live-in caregiver in 2004.

Then my mother passed away in 2005, and the direct opportunity to care for my dad presented itself. At first it was enormously difficult, because my father lost his ability to speak with his stroke. There were still seizures, and his body was compromised with loss of function on the right side. He could grow angry and frustrated at times, and my caregiving skills were put to the test in those circumstances.

All those changes and challenges are compounded when there are emotional patterns at work. The father-son relationship we had was transformed over the years as a result of the need to work together. I became adept at asking questions in sequential fashion to ascertain what he was thinking. This was an ironic rehearsal and reversal of the challenges he had long put to us growing up. All those probing questions were his teaching style, but too often we took that as an exasperation

But as we worked together our relationship softened somewhat. The same thing ultimately happened for my brothers as well. So while we’ve ostensibly lost our father to this life, in many respects we also found him again.

Though I know I’ll never lose affection
For people and things that went before
I know I’ll often stop and think about them
In my life I love you more
In my life I love you more

Christopher Cudworth is author of the book The Right Kind of Pride; Character, Caregiving and Community. It is a chronicle of cancer survivorship, and available on Amazon.com. 

The garden zen and now

While walking the dog this morning a neighbor on the block who is a Master Gardener and works in the trade for a living was out trimming dead daisy heads off the profusion of plants in her front plot. “Did you have many visitors during the Garden Walk?” I asked. Her home was featured in a July tour of local gardens.

“Yes, but now the weeds are back. And I don’t really care. Summer’s over, as far as I’m concerned.”

She means the real growing season. For August marks the beginning of the dying season, as gardens go.

Not true out on the local restored prairies, but home in the land of prized perennials and annuals, it is indeed a period of mourning and acceptance among those who tend gardens. The lilies? All bloomed and leaning low. The spiderwort? It was a banner year for them, but their seeds have all shed except for the lone strange plant that cropped up in the front garden. I harvested those and will save them for a new spot come spring.

Zen growth

My garden is not the most carefully tended thing in the world. Keeping ahead of the weeds proved impossible at many points. I only won out late in July when a window of time allowed me to hack and yank enough to create some shape and beauty.

This latent response was insufficient for those who visit the home and care about such things. My daughter lectured on the bumper crop of maple trees. My companion lamented that gardens need more regular tending.

I am intensely aware of all that. But in defense of my approach this first three years of tending the garden myself, this is still a learning period. The first year was like the luxuriousness of an inheritance. The work of my late wife was everywhere. That was bittersweet. Then came the second year and my installation of another water feature along with a large expanse of additional woodland garden. I mulched deep piles of leaves and buried them under soil. This combination has produced good fodder for growth and recycled much of what otherwise would have gone into paper garbage bags to wind up who knows where.

This year I dug a sweeping curve of soil and made a ridge in which to transplant a fine line of nodding choral bells. At least that’s what I call them.

So my progress as a gardener has been measured in experimentation. Refinement, as a result, has had to wait.

It has also taken time to learn to identify the desirable plants in their early stages of growth. I moved some phlox around early in the season on a hunch and the results have been spectacular. Same with some coneflowers and other plants that I now know by heart. Many of the plants I now recognize. The lilies and the iris. The bergamot and sunflowers. Joe pye “weed” and many others.

Back of the mind

But I must not claim to have a zen relationship as yet with my gardens. The south section took off with weeds and creeping charlie and lurks like a bad thought in the back of my mind. I got out to lay garden cloth one morning and it rained on me during the process. Then obligations took over and the job never got finished.

Such is the life of a gardener in the learning phase. Many projects have gotten done. A nice new brick layout borders my fountain water feature.

There is still a party to be held in August. There will be new mums sprouting in my garden before then. August may be the end of gardening season, but it does not need to be the end of gardening. There is a zen component to keeping on with what you have. The official end of summer does not come until September 20 or so. That’s still seven weeks away.

There are still questions to be answered for the garden zen and now. I have yet to achieve that desired peace of a gardener in full flow. But it’s coming. Maybe next year. Or the next. It is a relationship that is both sustaining and challenging at once. It is the act of caregiving that gives back to the caregiver. The feeling may be fleeting and ephemeral when it comes. But the notion that all is right is worth pursuing for a lifetime.