May 9, 2015: Caregiver

As we approach the opening date of our new healthcare clinic, I am reminded of what has inspired me to take the leap of faith in joining this great venture.

Although my area is finance, what I do and what motivates me is much deeper.

A Midlands Business Journal article from years ago hangs on my office wall. It articulates some bits behind this motivation. Back in 1996 I was named as one of the 'Ten Outstanding Young Omahans'. The MBJ individually interviewed and ran an article on each honoree. I was asked by the reporter how I became interested in healthcare with my background in accounting.

I told the reporter the story of my grandpa who had a stroke when I was in high school. I had spent months accompanying my grandma to the hospital, 45 miles away, as a support to her as she cared for her recovering husband. While my grandpa was painfully learning how to walk and talk again, I observed from the sidelines of the rehab room. When he would rest, I would wander the hospital halls and cafeteria, waiting until it was time for us to leave.

My grandparents pre-stroke

I saw many things through my sixteen-year-old eyes during those trips to the hospital. From new babies leaving with their joyful parents to elderly people dying alone in shared hospital rooms. Caregivers were shuffling across the halls and life was happening all around me; from beginning of life to continuation of life to end of life.

Although my natural talents did not lie in biology or nursing, I knew I wanted to work in healthcare. And throughout my accounting and consulting career, I always have.

We speak a lot about the importance of the 'caregiver' as we work to open Think Whole Person Healthcare. The nature of our business is caring for the health of the people we serve. Unfortunately this many times means dealing with illness and aging. Caregivers are those who unselfishly help others most in need of physical and emotional support.

I have always admired these caregivers. I watched my mom and her family tirelessly care for her dying parents. Doctors and physical therapists worked patiently with my broken grandpa as my grandma stayed by his side. My neighbor died at home after a valiant battle against cancer. His young wife fought the battle and then was just as determined that his final days were filled with dignity and surrounded with love.

Always seeing myself as the just the observer, I have never gleaned this caregiving title as relating to the smaller acts. I now see life and the world a bit differently. The care given can come in many forms and at different levels. The magnitude is known only to the recipient.

A smile of understanding when nothing seems to be going right. A ride to an appointment on a rainy day when the arthritic knees feel bad. A trusted hug while waiting for a potentially negative test result. None of these acts can be underestimated.

As Think recruits the best of the best, I enjoy these interactions and am moved by examples of empathy and care.  These stories have reminded of my own caregiving experience as a young girl. Although I had long forgotten about Mrs. Shea, I now think of her often.

I believe the world to be a carefully knitted plan of people and interactions that ultimately all connect together. I now see how my many months of caring for Mrs. Shea have a direct impact on my choices and feelings today.

The story starts in Remsen, Iowa, in 1979. I was twelve years old and in the 7th grade. My talented mom not only held a job at the telephone company, but she did upholstery and wood refinishing work for our local furniture store. Mary Lou and Francie Muller were the proprietors of that store.

One day I came home from school to hear the familiar voice of Mary Lou talking to my mom in our kitchen.  But their conversation was not around material weight or varnish color. They were talking about me. Surprised at the subject of conversation, I silently waited in the laundry room before announcing my presence.

"Mary Lou, is your mom well enough to be without a nurse? Is Sandy checking in on her enough?"

The discussion centered around Mary Lou's mother, Mrs. Mary Shea, who lived a block away from our house. She was a quiet elderly lady who would wave to me when I walked by her home on my way to school. I had never formally met her, but my parents would exchange pleasantries on our way to church. I would silently listen and smile in the background.

"Mom is good in health, just frail from the heart attack. She just wants to stay at home so badly. After finding her after this last scare, I want someone to check on her daily and sit with her at night. I told Mom this was the only way I would allow her back home so quickly. She has agreed."

My mom and Mary Lou went on to finalize the details of this proposed job for me including the daily rate of pay. The directive was for me to give daily feedback on how her mom was doing living at home alone.

After Mary Lou's exit and me acting as though I had heard nothing, my mom explained this 'great job opportunity'. I was very hesitant. I had never been in the Shea house and barely knew the elderly lady living in it. I was handed a key to her front door with an expectation to unlock the door the next morning and check on the lady who would be sleeping in her bed. In my twelve year old mind, I felt that I was being asked to check to see if this stranger was alive. And my assumption really wasn't far from the truth.

Never telling my parents 'no', I very hesitantly started my job as Mrs. Shea's caregiver.

The instruction I was given was to go into her locked home each morning before school, walk into her bedroom, and  make sure she was 'okay'. When I asked for clarification on 'okay', my mom told me to listen to make sure she was breathing.

Quiet as a church mouse and scared to death, I unlocked Mrs. Shea's front door my first morning on the job. Tiptoeing into the house, the only noises were a big wall clock and the creaks in the floor boards as I searched to find the bedroom. Frightened of the possibility of a dead body, I crept through the open bedroom door. On a large bed with an elevated head board, laid a small frail woman. She was very old, but breathing heavily and very alive. In complete relief, I ran out the door.

My next task was to sit with Mrs. Shea for two hours after school each night. I was to watch and make sure she was eating and taking her medicine. If I saw her struggling at these tasks or with her walking, I was to report back to Mary Lou immediately.

Not knowing what to say since there no formal introduction, I knocked on the door with key in pocket if needed. Eventually Mrs. Shea answered the door. More relief came over me when she acknowledged my presence, not requiring me to explain myself. I walked into a house that smelled of heated up tomato soup. The little lady didn't appear pleased with an outsider in her house, apparently against her wishes, but tolerated me.

I silently watched her eat her soup and then count out her pills into the oversized plastic pill box. She exaggerated her motions as though to point out that she could take care of herself. Obviously she knew I was instructed to 'report back' and wanted to be clear what those words needed to be.

Appearing very frail and not wanting help cleaning her dinner dishes, which comprised of the soup bowl and small plate for cookie, Mrs. Shea asked me to accompany her to the living room.

Hard of hearing, the little lady cranked the TV volume to it's highest level. We watched Lawrence Welk with no words spoken. I just sat on the sofa as we both stared at the TV together. When it became dark, Mrs. Shea informed me that she was ready for bed and that I "should go now".

This routine continued. With each morning visit, I was less apprehensive. Mrs. Shea's breathing became less labored and her strength increased. With each evening visit, she began talking with me, more comfortable with my intrusion into her house on her daughter's directive.

She began inviting me to eat meals with her that expanded beyond canned soup and packaged cookies. Mrs. Shea began cooking again. The TV volume never decreased with Lawrence Welk, but our conversations expanded. She began telling me the stories behind the framed pictures that filled her living room.

Days turned into weeks, which turned into months. I loved my job and enjoyed reporting back good news to Mary Lou as the time elapsed.

Spring took us outside before the Lawrence Welk Show one summer night. I vividly remember Mrs. Shea sitting on her front porch as I trimmed back the rose bushes and clipped hydrangeas for the kitchen vase. As she pointed out the flowering bulbs she wanted in her arrangement, she shared with me news I wasn't expecting.

"Sandy, I don't think I will be needing you any more. I talked to Mary Lou and because of your great work and God's blessings, my health is good enough not to require supervision."

The look of devastation on my face must have been apparent. My twelve year old heart and mind couldn't wrap themselves around a life without taking care of Mrs. Shea.

Reading my reaction she quickly told me "But you can visit any time. I really appreciate all of your help as I got back on my feet. Mary Lou made an excellent choice."

I never got over my hurt feelings. Mrs. Shea and I would wave to each other when I walked by her house on my way to school. She would sent me notes and candy bars on Halloween and Christmas. I struggled with not having a daily presence in her life and missed our time watching Lawrence Welk and counting pills together for her daily pill box.

It really has taken me until now to fully reconcile my feelings with Mrs. Shea's desires. In a world of 're-do's, I would have handled my post-job interactions with Mrs. Shea differently. Hindsight is always better when looking at life decisions through the eyes of a seasoned adult rather than a sensitive pre-adolescent.

My colleagues and I have been reflecting on Atul Gawande's great work in "Being Mortal", a book about end of life and the desires of humans on living their lives based on their wishes. The book has brought me full circle in understanding my caregiving to Mrs. Shea to the impact of my role today.

I now understand Mrs. Shea's strong desire to live life independently in her house. This was important to her in closing out her life with greatest happiness. And I played a role in this wish. She ultimately desired full independence. I now know that I fulfilled my job and was a step in Mrs. Shea's ultimate happiness in her final years.

My elderly neighbor lived independently in her home until 1986, seven years after my short stint as her caregiver. Her daughter moved to Arizona about the same time as Mrs. Shea's move to the nursing home. Mary Shea died peacefully at the age of 97 in 1987.

As Gawande so eloquently expresses in his book, the Mrs. Shea's of this world want to be treated like a person, not a patient. Our job as caretakers, whether in the clinic or outside, is to help people in living. Those people with health issues are too often plagued with loneliness and helplessness. Helping them in having a life and life style that gives them happiness is the ultimate job as the caregiver.

In the end, the most beautiful characteristic embodied in humans is the intrinsic human need to find a cause beyond ourselves. I will close my blog post today with a favorite excerpt from "Being Mortal". I find Gawande's words poignant as they apply to both those giving care and those receiving it.

"As our time winds down, we all seek comfort in simple pleasures - companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the rewards of accumulating, and more interested in the rewards of simply being. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile." ~ Atual Gawande

A picture of a young Mary Shea
(I enjoyed researching via Internet and finding these treasures)