Wednesday, November 3, 2010

The Willing Caregiver

I imagine the world as a vast, boundless frontier weathered by our swirling human emotions and complicated energies--hurricanes of intense heartbreak and tornadoes of joyous, unbridled celebrations, with every weather pattern in between. Sunshine and rain included.

If I could gather this world, foolishly believing that I could sweep my arms and hands through the unsuspecting air to collect a smaller, more-contained version of reality, I know with absolute sureness that what I would be left with is a typical day's worth of experiences in the emergency department. It is a microcosm of something similar to big life.

So many patients, so many illnesses, so many human interactions. So many words of comfort. So many experiences bombarding us daily. And try as we might to protect ourselves, building brick-by-brick our fortress of emotional barriers, ultimately, we cannot help but let some of our patients weave their very own threads into our personal life blankets.

I walked into Room 20 to treat my next patient, a woman in her mid-seventies. Because of a life-long battle with diabetes and its resulting circulatory problems, she was now permanently wheelchair-bound. She sat upright in her cot, in a hospital gown, without any blankets covering her. At the base of her right thigh, poking out from her gown, was a puckered-up cork of skin, where her leg had healed from an above-knee amputation. On her left-side, her leg extended just slightly lower, below knee-level, where, again, the rest of her leg had been amputated secondary to gangrene several years prior.

She was petite and frail. Despite a high fever and feeling ill, she sported a recently washed-and-set hairdo. She also wore some light makeup and dark lipstick, appearing well-cared for. The smell of her room, however, suggested otherwise--it permeated with the familiar stench of a Depend diaper that was overdue to be changed, most likely saturated with stale urine.

In her room's corner, sitting quietly and patiently, was her only child. A son, probably in his late-forties to early-fifties. He appeared fidgety at times, but was very attentive to both myself and his mother. He was, as it turned out, his mother's only living relative.

And her primary caregiver.

"Hello," I said to both of them, extending my hand to shake first the patient's and then her son's. "I understand you're here because you don't feel well, Mrs. Smith. Is that right?"

"Yes," she answered, slightly nodding her head as she spoke in a high-pitched, whispery voice, "I think I probably have a urine infection." She was probably spot-on, since that can be one of the most common causes of illness and fever in an elderly woman. She went on to explain the burning she experienced with recent urinations and her need for wearing Depend diapers because of the resulting incontinence.

"Have you had a urine infection before?" I asked her.

"A few months ago, yes, but otherwise I've been lucky, knock on wood," she answered, lightly knocking her closed fist against her imagined wooden temple. She then went on to explain to me that her right stump had healed beautifully from her recent surgery and had little reason to suspect that this might be the problem.

After reviewing the rest of her history and performing a stable physical exam, I ordered the patient's tests. And sure enough, she had a UTI, just like she suspected. With the help of some Tylenol, we were able to break her fever and by the time her blood results returned stable, she had been cleaned up and was feeling much better, with an IV dose of antibiotic finishing its run into her left arm's receptive vein.

I explained the results to her and her son, who, despite his mother's good response, had remained quietly sitting in the corner. He was edged forward on his seat, however, as if eager to say something.

"Sir," I said, "you look like you have something to say."

"Well," he said, glancing between his mother and myself, "do you think it's my fault that Mom got the urinary infection? I'm still learning how to help care for her."

"Michael," the patient answered quickly, "of course not. These things happen."

I liked her answer, but his question opened a floodgate of mine. "Why would you ask that, Michael?" I asked him, intrigued.

As it turns out, Michael, this patient's successful, independent son, had sold his out-of-town condo, sacrificed a current relationship, and moved back to our region and into his mother's home, all to take care of his mother after her second amputation.

"Do you have a medical background, Michael?" I asked him, amazed at his devotion. He nodded "no" to my question. "Have you ever been a caregiver before?" I continued, fully understanding just how much weight now sat on his shoulders.

The patient chimed in. "I told him to stay put, but he wouldn't hear of it. I feel bad he's halted his life to help me with mine."

"Mom, I wouldn't have it any other way. You talked me out of returning after your first surgery," he spoke shyly, pausing to nod at her left leg, "but there was no way I was going to stay away after this recent amputation. Unfortunately, I think your urine infection is from me not cleaning you well enough."

Now, imagine being a grown child, with no previous caregiver experience or medical background, halting the life that you've created only to move in with your sick parent. Your parent of the opposite sex, no less. Assuming care that included bathing responsibilities, bathroom runs, feedings, cleanings, appointment dates, and on and on and on.

And on. This was role reversal at its most intimate level.

Michael became an official caregiver. A frightening word for some, a privileged word for others. Regardless, it is a word that many people rightfully now use to describe themselves. Whether it be a sick child, a parent, a spouse, a partner, a grandparent, a relative, a neighbor, or a friend, there are currently 49 million people in our country who provide care in either a professional or personal sense.

Suddenly, I looked at this son in a new light. With no obvious agenda, he was doing what he felt was the right thing for his needing parent. And with his new responsibilities, he was going to be facing a whole new world of emotional weather.

Without any warning, my memories transported me back to when my father, my six siblings, and myself committed ourselves to providing 100% of Mom's home care during her last few months of battling leukemia. Although filled with much learning and many surprises, I think I can say that we all became extremely appreciative of the effort involved in taking total and complete care of a loved one. We were grateful for the experience, though none moreso than Mom, whose beauty and bravery during her last few days only magnified under our personal and steady care.

The patient spoke again, bringing me back to the present. "Michael," she said half-heartedly, "I wish you would have just agreed to put me in a nursing home like I wanted you to do."

"Mom," he responded emphatically, "I won't hear of it. At least not now. If things get too complicated, then we'll talk about it again. But wouldn't you rather be home, still? Seriously?" The patient took her time answering. "Yes," she finally admitted, "yes, I would rather remain home. But not if it means you are going to stop living your own life."

"I'm fine with it, Mom. I would never have moved back if I wasn't. And quite honestly, there is no where I would rather be right now than here, helping you the best I can."

Their smiles reflected off one another while another brick crumbled and fell from my fortified emotional barrier.

I finished the patient's treatment with a case management consult to ensure that Michael and his mother would benefit from several available resources, including home nursing visits. Walking out the door, I wished them both luck. But before leaving, I had to ask. "Michael, did you help your mother with her makeup, hair and clothes today?"

They both laughed. "Yes, he did," the patient answered. "How do you think he did?" Now it was my turn to laugh with the patient and good son. "I think he did a darn good job," I answered, "you look very nice, maam." I turned to Michael. "Well done, buddy." And I'm sure he knew I wasn't talking about how his mother looked that day.

Now, if only he would learn how to change a Depend diaper...

As always, big thanks for reading. And especially for bearing with me through a few weeks of barren writing. Much happening, but all good. I dedicate this post to all of you who have intimate knowledge of the sacrifices and hardwork necessary to be a great caregiver. See you back in a few days...


911RN said...

Great post....worth the wait:) I have worked in long term care, home heath, MD offices, acute care and ER. My mother and her sisters were all willing, shared caregivers for both of my grandparents before they passed.

Caregivers are perhaps, the most under appreciated sector of our population! Their contributions to their loved ones and for the whole of health care with such self sacrifice should not be taken for granted.

I try to make sure to always tell caregivers what a great job they are doing (if they ARE and most DO). I also try to ask about THEM. So much attention is always given to the "patient" that the caregiver's needs are never addressed. A simple, "How are YOU doing with all this?" can go a long way and often opens up needed dialog for caregivers to assist them in their care of their loved one. Validates their contribution and sacrifice. Even if they are OK-they are always happy someone bothered to ask!

Thanks for sharing- great son!

type1medic said...

Welcome back! Wonderful post. On the ambulance I get to see these people in their homes all the time and the sacrfices they make to ensure their family member is cared for is amazing. I had one call that was the wife helping the husband and he did everything! We get there because he couldn't get him off the bathroom floor. she was maybe 100 lbs. soaking wet and he was a tall husky man. She apologized over and over for calling us be she just couldn't move him. See he had fallen and was dealing with the effects of A stroke that left him well less then able to do things by himself. She cried and we helped. I looked at her and said anytime you need us to help please call this is what we are hear for. some might say this is a waste of EMS but no not to me and my partner she truely needed us and we weren't doing anything but eating anyways. It was my pleasure.

Sucheta said...

Amazing post!
I am a medical student in India and have been following your blog for quite some time now.
your posts are very insightful and heartfelt.
Keep up the good work! I look forward to your updates :)

Cal said...

I haven't been in the role of caregiver, but having met people who had to take this job full-time to care for a loved one, I could glimpse how hard a task it is, emotionally exhausting above all. One was in a very similar situation to what you describe in this post (male child caring for the mother) and it looked just incredible taxing.

Katie said...

Glad to see you back in the blogging world. Your eloquence, compassion, and thoughtful stories have been missed.

<>< Katie

Rositta said...

Wonderful post Jim. I too was a willing caregiver for my Mom and miss her terribly. I did have some help with a few hours of respite homecare a week which helped. I was also not alone, I have a wonderful husband who helped a lot. I am always worrying about who will take care of me when I get old. I only have one son and he lives thousands of miles away. I can't imagine him giving up his life and career to take care of me. Glad your back...ciao

Wren said...

What a sweet story. It's comforting to read about someone doing the good and right thing for his elderly mother. So many elders are left alone to get along as best they can or stuck in nursing homes and forgotten. Thanks for sharing this story with us, Dr. Jim. :o)

WarmSocks said...

Well written. You do a fabulous job of looking at various aspects of how families handle deal with the health problems life throws their way.

Welcome back. I missed your writing.

Sandra said...

Full time caregivers don't get anywhere near the kudos they deserve, so thank you for giving them recognition here!

I was honored to be able to be a part time caregiver for my aunt in her last few months and I live in awe of those who are able to do so full time.

I dread the possible day when I will need a caregiver because I never got to have children and my husband is much older than I am. Its very scary and that woman is very lucky to have such a devoted son.

Marie said...

What a wonderful man. His mother is lucky to have him.

I have four children and grow more debilitated each day from MS. My daughters are helpful and compassionate. My sons act like they don't know me.

I don't know whether they are afraid they will get "stuck" taking care of me. Or maybe it is too painful to acknowledge that I, their only surviving parent, am vulnerable when I have always been the strong one. What ever the reason, they won't talk about it and it has broken my heart.

While I am sorry this poor lady is so sick, I am happy for her that she has the comfort of her son.

Have Myelin? said...

You brought back a lot of memories.

Welcome back.

Leslie said...

A great post as always!

Count me among those that missed you and are glad to see a new post!

Smalltown RN said...

Wonderful post as always Doc. Your description of life and memories caused me to have flash back of the care I provided for my sister and mother in their last months.

Micheal reminds of the boy/man in the story "Love you forever" I don't know if you are familiar with that story, but it is almost parallel to the story you share with us about Micheal and his mother.

There is something extremely special when a child recognizes all the sacrafices their parents have made for them through the years and then are given an opportunity to pay it back in their own way. Not that pay back is ever expected. But isn't it wonderful that he wants to do that for his mother. She must have been a darn good mom to instill such emotions in her son.

Thank you for sharing Doc.

Anonymous said...

This entry really touched me. I was a full-time caregiver for my my mom starting at the age of 22 (after her brain surgery). I stayed with her until I was 25 when she decided there was no more need of surgeries. During those years she underwent, double bypass, angioplasty to repair the large arteries supplying blood to both of her legs, and many more proceedures. During those 3 years, she taught me so very much. I'm grateful to have been given the chance to truly get to know my mother. She is a wonderful woman. It was through taking care of her that so many of the heartbreaks of adolescence were healed. And so, she was able to know me as the young woman I'd grown into. Nearly, ten years later she is now an active, joyful grandmother. Having the opportunity to share in her recovery was one of the best blessing I've ever received. As a side-effect, my choice to step up and be there for her taught me how to be a better daughter, mother to my young children (ages 4 & 7), and friend to those who love me. I wouldn't trade my experience and lessons for anything.

Felicity said...
This comment has been removed by the author.
Anonymous said...

Great post (and another reader who missed you).

This rehab and hospice trained RN just has one tiny point of dignity: in adults, the incontinence garments are BRIEFS, not diapers.

Just a little word that can help adults feel less infantalized by incontinence.


Pattie, RN

coulrophobic agnostic said...

Wow, his girlfriend/boyfriend must have been a real bitch to dump him because of his sick mother. I seriously can't imagine telling someone I care about, "Sorry, your elderly mother is too much of an inconvenience."

What a nice young man.

Karen said...

What a nice story. I'm not sure I could do myself what he did - putting his life on hold and moving to another city to care for his mother. I'd say they are both lucky.

Carole, RN said...

Although this blog was written some time ago, I only recently read it through a Twitter post by KevinMD, and am compelled to comment. Kudos to you, doc, for your excellent communication skills. Had it not been for your probing comments after noticing the son's uneasiness, this lady might not have gotten the resources that would be so helpful to both her and the son. It's so easy in health care to constantly be in a hurry, and rushed by others to the point that our patients suffer. Thoughtful communication skills are vital if we are to give patients the quality care they deserve. Thank you for your piquant post.