Friday, February 8, 2019

To Care Or Not

I dedicate this to each of you who have cared for or are currently caring for an ill parent or family member. 

Recently, due to the stress that several of my dearest friends have been experiencing in caring for their elderly parents, I am even more appreciative and respectful of my privilege in caring for elderly patients who have attentive and loving adult children who accompany them to our ER.

Although this may seem like it should be the standard, you would be surprised at just how many elderly patients present to our emergency department alone. At times, it is heart-breaking to hear their shared stories of being the lone survivor of their family, of being estranged from their children, or of having geographical factors contribute to their aloneness in presenting to me for care. So when an adult child is present, I make it a point to not only introduce myself to them, but also to thank them for being available for their parent. Including them in providing more history and in discussions about testing and treatment plans for their parent benefits not only their parent, but also myself and my team. I am grateful for their presence and input.

A few months back, however, I had both the pleasure and discomfort of witnessing two vastly different situations in how adult children interacted with their parents.

The first interaction came early in my day shift. I had just rounded the corner of one of our busier hallways near our noisy triage area to find a favorite aide leading a family from our waiting room down the hallway toward their assigned room. The family consisted of two middle-aged adults, a teen-aged boy, and an elderly woman who relied on a walker to ambulate. As the tech led this family, it became clear to me that the elderly woman was struggling, lagging behind the others. Noticing this, I stepped forward as the aide simultaneously stepped back to help this woman continue forward with less struggle. 

The woman, who was wearing a simple purple dress with white walking shoes, with messed shoulder-length grey hair, was quite appreciative for our efforts. She paused to look with her wrinkled face first at the aide, and then to me on her other side, rewarding me with a warm, generous smile. Even tired, she had a gleam in her eyes that conveyed her gratitude.

Sadly, the members of her family didn't want to be bothered. Asking the aide for their mother's room number, they continued down the hallway at their own rushed pace, walking into the opened door of Room 31, which was about 50 yards away. The aide and I glanced at one another, with a look of bewilderment, before continuing onward in guiding this patient. By the time we got to Room 31, the patient's family had already turned on the TV, both adults sitting in provided maroon chairs and the teen-age kid sitting on the edge of the bed. 

Ugh. The aide and I continued to lead the patient into the room. Together, after asking the teen-ager to get off the bed, the aide and I eased the patient onto a stepping stool before hoisting her into the bed. We sat the back up for her to be more comfortable. All the while, the three family members, who I learned later to be her son, her daughter, and grandson, focused all their attention onto a sporting event on the TV. 

You get the picture, right? Clearly, this was not to be another love story I would bear witness to and write about between an adult child and his parent (visit A Love Story). I am not naive enough to believe that all parents are perfect, and that some may have made mistakes or caused pain to a child--I am simply stating that as an outsider, this is a hard scenario for me to witness. 

I left the room as the aide was changing this patient into a gown. Later, she found me.

"Can you believe that family? I would never ignore my mother that way. They were so annoyed to be here and didn't even say a word to her!" The family bordered on making Lauren angry, and that wasn't a good thing. 

As I was not this patient's treating physician, I shared the story with my partner, who was treating the patient. His experience was disheartening. It seemed the family was completely uninvested in their mother's care, opting to ignore her while they watched TV before visiting the cafeteria to eat, returning only to act annoyed that they still had to wait for her results. After it was decided that this patient would be admitted, the family, instead of waiting for their mother's room number and assignment, left. Their mother would be transported to her admission room without any supportive family accompanying her.

Later in the shift, thankfully, I was privileged to witness an outpouring of love between a parent and her grown children during a visit.

Margie, my 72 year-old patient, was a beautiful spirit trapped in a failing body. Her short brown-dyed hair, her worried face, her clear eyes with underlying dark circles, her protruding cheekbones, and her thin frail body sat upright in her cot, covered in several warm blankets in attempts to help her chills and aches. Despite her fragility, she greeted me in sassy way.

"Well, hello there. Are you going to be my doctor today?" she asked as I entered her room

"I am, ma'am," I said, extending my hand to her. Her hand, cool and boney, felt fragile in my grip.

"Good then," she said, "let's get busy and figure out what is wrong with me."

Immediately, I liked Ms. Margie. She had a coy yet innocent way about her.

In the corner of her room sat her three adult children, two women and a man. All three were attractive and had their mother's clear eyes. They appeared nervous, of course, and I sensed that their mother's reason for being here was going to be a serious one.  I walked over to them and introduced myself to each of them, shaking their hands and learning their names. As customary, I thanked them for being in the ER with their mother.

"You do know how much you are loved, right Ms. Margie?" I said, starting the conversation. "You have not one, not two, but three children with you tonight. How wonderful and blessed are you. I don't see this much support too often."

"I am a lucky lady," she said pensively. At that, one of the daughter's spoke up. "No, Dr. Jim, we're the lucky ones." I liked these children as much as I liked their mother.

As I interviewed Ms. Margie, it was refreshing to see how all three kids were involved in her life and knowledgeable about her symptoms. It seemed all three of them, each with their own family to attend to, took turns spending an unselfish amount of time with her. Several years prior, her husband and their father had passed. Ms. Margie, with her fierce independent streak, insisted on remaining at her home and the kids did everything possible to continue making her comfortable.

As I gathered information from Ms. Margie and her kids about her symptoms, I felt my concern for her well-being exponentially increase. She smoked although "I've really been trying to quit, Dr. Jim." She had several months of significant weight loss with increasing fatigue and weakness and, despite her children's urging, refused to see a doctor until several weeks prior to her visit with me. Finally, with her continued deterioration, she agreed to her children's requests to come to the ER for some workup.

Her workup was heart-breaking. Initially, her chest x-ray revealed a pretty large mass in her lung. While Ms. Margie was over in the radiology department getting both a CT of her chest and brain for further investigation of this mass, I stopped into her room to visit with her kids.

"Are you all doing okay?" I asked, opening up a chance for them to express their concerns.

And they did. "Is it cancer?" I answered that I was very suspicious of this, yes. "Is Mom going to die?" I told them that we had several bridges to cross to figure out exactly what it was and what we could do about their mother's results. "Should we share any bad results with Mom?" Yes, I said. I told them that most patients inherently have a feeling when something isn't right, and their mother was one of those patients who would not want any of the results sugar-coated.

They continued to ask questions, all rooted from a very deep, endless well of love for their mother.

Finally, one of the daughter's broke down and started crying. I walked over to her and gave her a hug. "I'm so sorry," I said, "but I think your mother, no matter what her results, is going to have the best support ever from you three." My compliment was sincere--Ms. Margie was blessed, no matter her results, to have these three children accompany her on this journey.

Unfortunately, Ms. Margie's results were devastating.  Lung cancer--a huge mass residing in the right middle lobe. Brain metastasis--multiple lesions sprinkled throughout. Bone metastasis--"cystic lesions" consistent with cancer in her vertebrae.

Damn it all.

I went into the room and sat on the edge of her bed, explaining Ms. Margie's results to her while her three children crowded around her, holding her hands and stroking her hair. Though brave faces were attempted, tears fell plentiful and freely. Mine included. We admitted Ms. Margie to the hospital to have a variety of consultations and begin her journey of fighting cancer.

Despite such different situations involving adult children accompanying their ill parent to the ER, the depth of emotions I felt, whether good or bad, ran deep. I felt such despair over what I witnessed regarding the mother with her walker being ignored by her family. I felt such despair for Ms. Margie and her kids, too. The difference, though, was that this despair for Ms. Margie was minimized by the amount of hope, by the infinite love, and by the sincere compassion that her children provided unabashedly to her. The power of their presence and investment in her well-being was magnificent.

Ms. Margie was transported to her admission room with her three caring kids beside her.

I get it. Some parents failed their children. And some didn't. And the ripples from these relationships travel far. I understand that some of these relationships have a reason to be strained and forced. With all of these factors, though, I'm a pretty damn privileged guy when I get to bear witness to the unselfishness and unabashed love an adult child has for their ill parent.

I love my job...

As always, big thanks for reading. Have a great weekend. To my dear friends and each of you who are involved and invested in your parent's care, my hat is off to you. Big kudos for your unselfishness and love. Please feel free to share your thoughts or experiences. 

Also, big thanks for the amazing support I received upon my return essay. It feels good to be back.

8 comments:

jimbo26 said...

Thank you Jim , for everything you do . ( One wet handkerchief in my hand ) .

Winston said...

Wow this is so touching ... I can relate to this on so many levels... great job I really enjoy your writings! Winston

Katie Axelson said...

Wow!

Though the individuals "coming to me for care" are in a vastly different setting, I too often find myself gently probing to see if there's anyone else in this grandma or grandpa's life who can help them in the ways that we do. I've never seen that level of disrespect but I do hear the heartbreaking stories of "They live in a different state" or "They don't have time or patience to help me." In my world, the greater age of the individual, the simpler the solution. If they aren't getting the support they need in the simple solutions, I can only imagine the lack of support in the more difficult solutions.

I get it. I AM the grandchild too far away to help in most situations. But I'm also the only one still allowed to touch their technology... which means sometimes things stay broken until I come to town. Or other times I get phone calls of "Katie, the guy's here working on the computer. You talk to him." Then the technician started to explain that they need to reset their email password and I'm the rescue email. I actually already knew what was going on: it was a perceived problem with their email I'd been notified of the night before (rescue email for the win) and had resolved it but because of a hectic work schedule hadn't had a chance to call and tell them and walk them through what was a really simple error.

"Don't reset the password. I know what it is," I told him. That stopped him in his tracks. I'm sure he consults grandchildren over the phone in different states all the time and they rarely actually know or care what's going on. I get it. Grandma didn't even know I was the rescue email. She just saw the "K" it had to be me. I gave him the password (the same password my grandparents had set last time I was there), he put it in, and everything worked. "You're the best grandchild I've ever met," he said. Don't worry, I remind them of that regularly. Especially when my siblings and cousins are around. Or there are gift-giving occasions in the near future.

Katie

Unknown said...

Great article. We just lost my mother to cancer last September and I wasn't able to be there til the end due to geography. Such a hard thing for a family to go through and so important for family to support each other during these trying moments.

-Jim

Donna Ecclestone said...

A great read - the reference to Ms Margie reminded me of certain special family members. ❤️

Unknown said...

❤️

Unknown said...

Family dynamics are complicated at best. What one family unit considers dysfunctional is considered normal within another family unit. My relationship with my mother (who recently passed at 82) was tenuous. However, I stepped up to plate (put aside my personal issues) and was her primary caregiver for the last 6 months of her life. Driving one hour away (many times twice a day) to care for her. It wasn't easy to say the least. Surprisingly, we had a nice time together! Sadly, it took her knowing she was dying to become a kinder person (death seems to have this effect on people). To me, end of life care should be an expression of dignity and grace for the one passing: regardless of ones education, socioeconomic standing or personal relationships, however poor. I'm happy in knowing I achieved this for my mother... I know because she told me so. RIP Mom. I love and miss you.

Melissa H said...

This story touches my soul. Love you Jim xoxo