Tag Archives: palliative care

Enneagram wisdom: “True strength comes from the courage to be vulnerable”

Taking pride in vulnerability does not mean always being scared or sad. It’s quite the opposite. It’s about being authentic in whatever situation you find yourself in life.

One of my new work cohorts encouraged me to take an Enneagram test to see where my personality fits on the spectrum of such things. I signed up on Truity and paid $19.99 to get the full results. The outcomes were interesting, with all my best qualities and flaws laid out in black and white.

Somewhere late in the PDF, which is replete with graphs and charts about personality and life traits, I noticed a quote highlighted in the headline of this article. “True strength comes from the courage to be vulnerable.” I sat there a minute and thought: “That’s exactly what I meant by calling my book “The Right Kind of Pride.”

The Right Kind of Pride is precisely that: the consistent action of taking pride in the willingness and courage to be vulnerable.

As for that book, I’m pretty sure that some people are scared or uncomfortable about reading a book about cancer survivorship. But it’s not JUST about that. The eighty-plus blogs I compiled speak to the the value of authenticity in all situations.

Here’s the basic fact: All of us must be survivors of one kind or another. Plus, none of us gets out of this world alive. All I can say is that when it comes to getting through the tough things in life, vulnerability is truly powerful.

Caregiving

Before our marriage in 1984.

Over eight years of caregiving that was the principal way that I found hope and support.

Originally, I oversaw my mother’s journey through lymphoma and pancreatic cancer, followed by a stroke and finally hospice. Her passage left me in charge of caregiving for my father Stewart Cudworth, a stroke victim from 2002. I would remain his caregiver through his passing in 2015 at 89 years of age.

That all began in 2005, the same year that my wife was diagnosed with Stage IIC ovarian cancer. Immediately I was graced by an offer of support from the preschool director and her team of teachers at the school where my late wife Linda taught. For the next eight years, those people and many others (thank God) were willing to help us through the ups and downs of cancer treatments, including surgeries and recovery, chemotherapy, prodigious drugs and side effects, and emotional challenges deeper than we’d ever imagined possible. We’d make it through one segment of treatment to remission only to have the cancer return. That progressed with rapidity like the sound of a ping-pong ball as it taps out from its original dropped height.

During all that time I blogged to our caregiving support group about the blessings and challenges we experienced, and things we learned along the way. Those blogs formed the bulk of the book I wrote titled The Right Kind of Pride. Then I wrote a prologue and epilogue, including A Goofball’s Guide to Grief. Because I am. A goofball.

Making the most of my hair before it all went away in my late 20s.

Personal journal

But I also kept a personal journal for thoughts that were not ready for public consumption at the time. I’d actually forgotten about those words until recently when I opened up a thick journal given to me by my mother-in-law for my July birthday in 2012.

I’d been thrown out of work earlier that year by an employer who fired me the day after they learned my wife had cancer. So I was freelancing and trying to cover everything from COBRA insurance costs to the daily costs of living. Fortunately, I was able to find bits and pieces of work to tide us through, all while dealing with the difficult fact that Linda’s health was decreasing in quality. She started having seizures in the fall of 2012, and then we discovered a brain tumor that required surgery, radiation and steroids to treat, and after that, things got really tough.

Calm realizations

At that point in February of 2013, I landed a new job and was trying to do my best at it. But the daily challenges of helping her through were significant. By February 11, it was even tough for her to get around. “Linda sleeping on the couch upstairs,” I wrote in the journal. “Chuck is on the Ottoman, leaning on my leg until a few minutes ago. Following me around all day. Linda improved a bit, for a while anyway. Big day tomorrow. Meeting Dr. Ferris and Dr. Dolan.”

We made it to the appointment with the medical oncologist Dr. Ferris. But things didn’t go all that well. She could barely stand to lie on the table, and the doctor pulled me aside and made a calm recommendation of palliative care going forward. I knew what that meant. And besides, Linda was too exhausted from gut swelling and fatigue to make the trip from Warrenville to Advocate Lutheran General to see the physician that treated her so well from the outset. I could barely get her home.

Constructive thoughts

I wrote in the journal on February 14, Valentine’s Day 2013, “Well, my objective with this journal is to focus on constructive thoughts rather than destructive, which so many other journals in this house seem to have been. In a constructive fashion, therefore, it is still important, most important, to acknowledge that Linda Mues Cudworth––or Linda Ann––is in the process of dying. She has been a most wonderful wife all these 28 years, and wants to continue if only she could. But her cancer is catching up with our dreams of going places together and doing things. We had both promised to get to Glacier this year––together, if her health would allow it. Now it seems more likely she will be gone, the earthly part of her that I so love anyway. Our relationship has gotten richer these past 8 years. Richer than money and wealth combined. Our mutual failings and weaknesses have fallen away. She has told me that she loves me and I believe her now. I have told her that I love her and she knows it now. Our wedding vows have been fulfilled; for richer or poorer, in sickness and in health, till death do us part.”

We made many trips to Decorah, Iowa over the years. One of the prettiest spots in the Midwest.

Reading those words again nine years after she passed away on March 26, 2013, gives me both sadness and satisfaction. We did the best we could all through those years. “Sunrises and sunsets still await,” I continued writing in the journal that February. “And spring as well. Hurts so much to know that she may not be with me. So soon. So sudden. Yet we have lived well together, the best we know how. I love you Linda. I always will. God Bless your kind and spirited heart. Forever.”

The promise of vulnerability

It would still be weeks before the end of her life came. But we opened our lives at that point, trying to bring our children and family, friends, and associates into the sphere of vulnerability. If you absorb nothing else from these words, please embrace the truth that “true strength comes from the courage to be vulnerable.” We lived that reality and I can promise you that while things don’t always happen or end how you’d like or expect, the courage to be vulnerable is one of the most valuable human traits of all. It expands all the good things that life has to give.

It’s fascinating to study yourself objectively through a test like Enneagram. It’s a valuable thing to learn what emotions and character traits drive you from within, and how that translates to life and relationships. And it’s the core of who we are that matters. Letting others see that in you can be a wonderfully empowering force in life.

Linda Cudworth passed away on March 26, 2013. While appreciating her life, I am grateful for the things life and love continues to bring.

The art of dying

Losing a loved one is one of the hardest things to experience in life. All signs may indicate that the end of a life is near, yet it is so hard to accept them.

Most typically, people experience the death of parents late in life. There are exceptions of course. Tragic accidents or fatal diseases intervene with the normal cycles of life. For those experiences, the principle need is to focus on coping strategies. Helping people when the shock of death comes too early is a profound challenge. Every single circumstance is different.

But there are some commonalities we all share when it comes to aging parents or grandparents. We know they are not going to live forever. We sometimes see the decline, yet focus on the good signs and hope the bad things hold off as long as they can.

Triggers

Often there is some incident that triggers the process toward actual death. It may be some shift in health such as a heart issue or surgery. Yet something as simple as a fall can undermine a person’s health.

Recently that happened to a close associate of mine. His mother fell in the middle of the night and her equally aged husband did not notice. What followed was a series of stays in different hospital facilities and nursing homes.

There is a harsh reality afoot with people very aged and in a severe state of decline. Hospitals are chartered to help people get better. They reserve the right to determine if that is happening. There are broad patterns that affect these decisions. People experienced with the dying come to recognize whether the trend is toward better health or whether the symptoms of an accident or illness are likely insurmountable.

The protocols of this decision-making can seem confusing to family members or those chartered with caregiving. The legality of prescribing certain medications, for example, is often determined by the prognosis issued by the presiding physician.

Free radicals

Then there are the more radical decisions to consider. Will a surgery help mom or dad survive longer, or is it just a desperate attempt to extend their life?

Meanwhile, the patient sometimes vacillates between wanting all that rigamarole and perhaps not putting up with the intrusions. This can seem like they are giving up, or losing hope. But in truth, some people come to grips with their situation faster than their caregivers.

Yet that’s not often the case with people suffering pain. Their decision-making abilities are directly affected by their pain tolerance. That’s where it gets difficult for the hospital or other facilities to make decisions that please the family. Either the patient gets so doped up from painkillers and can’t converse, or they grow agitated from lack of treatment and just want the pain to end. Even death becomes a desirable option.

Opponents

There are relationship issues to confront as well. A temperamental parent can be a daunting opponent when it comes to end-of-life decision-making. If there are unresolved or dysfunctional relationship issues between parent and child or siblings, the end-of-life process can become complex and tense. Blame gets tossed around. Insinuations made. Guilt enters the picture. No one can find peace or balance. The parent becomes Ground Zero for family conflict.

Usually, there’s one sibling or one person that does most of the steering through an end of life journey for a parent or grandparent. Yet that leadership role can generate friction too. It can happen that parents will play one sibling off the other in order to gain sympathy or hedge the bets. When those parallel decisions work against the medical advice of the presiding doctor and the presiding sibling, things can get really confusing. Or angry.

Palliative care versus hospice

Sometimes medical staff will seek out the primary decision-maker(s) for discussions about palliative care or even hospice. Palliative care is defined as follows: a multidisciplinary approach to specialised medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness—whatever the diagnosis. The goal of such therapy is to improve quality of life for both the patient and the family.

But quite frequently, palliative care has the goal of keeping the patient comfortable leading up to the actual process of death. When death is likely imminent due to any number of signs related to disease or debilitation, a transition to actual hospice care occurs.

Hospice removes most life-giving supports and acknowledges that the patient is indeed dying. This can be an extremely challenging decision for families to make. But there are good reasons why hospice is entered as a care strategy.

Experience

Having worked with both my parents and my wife in both palliative and hospice care situations, I can assure you that the differences are not so distinct or profound as they might seem. I am fairly convinced that the only reason the terms differ is to ease the transition for family members. The term palliative is designed to help them come to terms with the fact that their loved one is indeed dying. When the wise female physician pulled me aside the day my wife was unable to move from the table where she lay, and counseled me that palliative care was likely the next step, I knew what she was saying.

In my mother’s case, she had been directed home from the hospital because there was, n the doctor’s words, “nothing else we can do for her.” In plain and simple terms, a hospital is medically defined as the place where people go to “get better.” When it is determined by the hospital that a mission of that order is not likely to be fulfilled, families are often asked to move their loved ones to another facility, or to simply take the patient home. Hospitals do not like it when people die under their care. It does not look good on the record sheets.

My mother was consigned to palliative care following an attempt at chemotherapy to treat her pancreatic cancer. The treatment was too hard for her to take. It put her in the hospital for a few days. Then the doctor came by and told me that they were done treating her. She was able to get home and we hired caregivers. All our family visited during a three-day period and she was happily able to see nearly all her loved ones.

But then she had a stroke on a Sunday evening, and by Monday morning, the case was clear. Her ability to swallow had been destroyed. The decision to enter hospice care was defined by that condition. Within a week of entering hospice, she passed away peacefully at home. Her husband and immediate family were there with her. And while it was sad to know that she was gone, there was great closure and peace that came from that.

Hospital business

Hospitals try to avoid keeping patients until they die. It’s simply bad for business. And hospitals are a business. That does not mean hospitals can necessarily avoid death in their patients. Plenty of people die in their hospital beds. Death is simply unavoidable when the human body and mind have had enough trouble dealing with pressure and failure.

Life comes to an end in one of three ways; natural, unnatural or somewhat assisted. A natural death is what we all seem to desire. That’s when people pass away of so-called natural causes. That would be heart failure in many cases, or other organs. There are many ways to die.

An unnatural death is typically the product of overtreatment. That would be too many surgeries in many cases, and not enough energy to recover. From what I’ve read, that process and occurrence is an all-too-frequent occurrence in the American health care system.

Perspectives 

I’ve watched my own family members anguish over the merits of yet another surgery for my father-in-law. Deep down I knew it was fruitless. But the patriarch of a family is not something people give away easily. Never mind that he’d already skirted death when he collapsed face first into a pile of sawdust while sawing wood in his own backyard. His wife woke him up that day. But from there, it turned into a series of heart operations, kidney problems, weight loss and finally death in the hospital. None of that was an easy choice for the family to make. It was deemed necessary as long as he was alive, to keep him alive. But whether it was absolutely necessary to keep him alive was the question everyone avoided.

Almost all families face that type of decision sooner or later. No one said dying is easy. But we tend to make it much harder than it should be.

Prayers for dad

My father passed away in a hospital bed six months ago.  He had fallen in the middle of the night and broken his hip. His caregiver called emergency for the umpteenth time and they carted my dad off to the hospital.

Everyone knows that a broken hip is a tough injury for any elderly person to sustain. My father already had an injured arm from a previous accident. But mostly he’d had a long time dealing with the effects of a stroke suffered back in 2003. He outlived my mother by ten years and we kept him in his own home with caregivers. The diagnosis to do surgery was his decision.

The diagnosis to do surgery for the broken hip was his decision. I let him make it because even though I was an executor of his estate with Power of Attorney for health care, he was still lucid and capable of deciding for himself whether to live with a repaired hip or die from the effects of the injury.

He lived another four days and saw all four of his sons during that week. Then he passed away quietly in that hospital bed. I arrived on a Saturday afternoon to a room with quiet music playing. His blanched figure with open mouth lay on the hospital bed. I kissed his forehead as I had done many times in fifteen years of taking care of him. Then I knelt and said a prayer next to him even though he was not necessarily a praying man.

I thanked him for his love over the years even though he lost his ability to say it. I said thanks to what I know of God for believing in my ability to take care of my father. It was tough as hell, and definitely worth it.

He was dead, but his memory just as surely came alive in the days that followed. There was nothing medically I could have done to change that outcome. There seldom really is. Death comes because it is meant to be. It gave me peace to know that he no longer had to live without his voice, and his golf clubs, and that wandering spirit squelched by his confinement to a wheelchair all those years. He dealt with it pretty well, and like an SOB at times.

The art of dying

But he dealt with it. And it was our job now to deal with his passing. It all took so long and happened so fast. That’s how death works, after all. And sometimes you should not fight it. That is the art of dying.

There’ll come a time when all your hopes are fading
When things that seemed so very plain
Become an awful pain
Searching for the truth among the lying
And answered when you’ve learned the art of dying

––George Harrison, The Art of Dying