Thursday, November 19, 2009

Opportunity to give care reveals character

Over the course of the last several years, I have learned a lot about people. I have learned that when we as human beings are faced with crisis, hardships, illness, death, some of us will falter and others of us will thrive. I am just an attorney and journalist. I am not a scientist. But I get that there must be something in the make-up of human beings that allows only some of us to be able to give of ourselves.

The opportunity to provide care to another human being does not create character - it reveals character. If a person lacks character then God help those in his life. The lack of character does not make these "bad" people - it merely means that these people are functionally unable to put their needs aside in order to help others --- at least without feeling tremendously put upon.

The last nearly three years have given me the opportunity to care for my elderly dad who has battled Stage 4 cancer and numerous chemotherapy complications.

It has not always been easy for me. But the time with my mom and dad has been a blessing from God that I cherish every single day. On a bad day, I think that I "sacrificed" my own autonomy in order to provide my dad with the resources and selfless attention that has allowed him to live. But in reality, I willingly and happily put aside my own life in order to make certain that my dad is comfortable.

My efforts have often been met with resistance from hospital administrators, hospitalists, family members and, most recently, a person I called my best friend for the last 14 years (I will call him "Fred" for simplicity's sake).

For reasons known only to the Illinois family, my former friend Fred subjected his elderly mom and dad to rely on Carle Clinic Association in Champaign, Illinois for medical care. Chicago, Indianapolis, St. Louis are all driving distance. Geez, I am in North Carolina and my physicians are in Chicago!

Several years ago, Fred's grandmother died at a Carle Clinic affiliated nursing home from . . . wait for it, wait for it . . . infected bed sores! What? In the 21st Century? Infected bed sores are actually considered a "never event" by Federal Government and Medicare -- meaning that Medicare will not reimburse a medical facility for an event (such as bed sores) that should "never happen."

I would never have let the memory of any family member (especially an elderly and vulnerable family member) be forsaken by an act of medical negligence. Just ask risk management at Duke University Hospital or the Joint Commission! I would have demanded that the policies be corrected to ensure no other vulnerable patient die.

I was horrified. Fred's family moved on.

I have absolutely never accepted negligence from Duke University Hospital. And when hospitalists have neglected and caused harm to my dad, I have spoken with first Duke Risk Management and then the Joint Commission (accrediting agency for medical facilities) and the North Carolina Board of Medicine. If I am going to care-give and help keep a man alive then I have the ethical obligation to make certain that he receives proper medical care and that his quality of life is high.

I was surprised when Fred's family effectively shrugged their shoulders at the apparent negligence of Carle Clinic when the grandmother died. But Fred's brother (James) and sister-in-law (Bianca) are attorneys with the law firm that represents Carle Clinic physicians. Wow. Priorities. Enough said.

Okay, so give Carle Clinic a pass on the grandmother. But I would be darned if either of my parents would be subjected to the incompetence, arrogance and negligence of Carle Clinic physicians or facilities.

Fred's father suffered miserably after a brain bleed that was treated at Carle Clinic. Ultimately, Fred's father (a brilliant and kind man) died at (I believe) another Carle Clinic facility.

Fred's father died about a year ago (November 2008) and the circumstances surrounding the death are too painful and raw for me to even discuss. Suffice it to say, I would expect that the entire family went through a horrible experience.

At the same time Fred's dad was passing through the end of his life, my dad was struggling at Duke University Hospital to survive an infection that DUH (God help me) missed during an August 2008 hospitalization. During the period of time, I called Fred to make sure his mom was okay and that Fred was okay. I knew the doctors were caring for Fred's dad. But often no one cares for the care-givers. It literally broke my heart to have what I thought was a dear friend suffering miles away.

Within days of Fred's father's passing, Fred had his mom at an assisted living facility signing documents to move in. I warned Fred that it seemed awful soon for his mom to move. But I did appreciate that the memories in the family home may be too raw.

For the last year, I have asked about Fred's mom and listened to him complain about her "neediness" and his difficulty dealing with her. What? Excuse me - her husband just suffered terribly and then died a horrific death. Fred constantly expressed disappointment that he did not have enough time for himself. What?

Now, mind you, Fred has 2 brothers and a sister-in-law who, by all empirical evidence, have been absolutely useless in helping Fred deal with the apparent burden of caring for elderly parents. All of these adults live in the same town as the parents!

I moved from Chicago to care for my dad and my brother is on the next plane from the San Francisco suburbs if mom or dad need him. No questions asked. I never understood why Fred, Jim and Bianca were so inept at care-giving. I also never understood why the bulk of the care-giving rested on Fred's shoulders.

Sure Jim and Bianca are married and have kids and a house. So what? IMHO,
the lack of caring demonstrated by Jim and Bianca reveals more than a simple lack of character - it reveals a selfishness that implicitly tells their children that the family home is not a place for comfort safe landing.

In contrast to Fred's family, when my mom and dad moved my widowed maternal grandmother from Florida to our family home in North Carolina, I was about 10 years old. My parents' selflessness let me know that I would always be loved, protected and cared-for. I knew by my parents' actions that our family home (and more specifically my parents) would always be a safe landing for me. That is a priceless gift for a child.

Then it struck me. Like a bolt of lightening. Fred, Jim and Bianca lacked the character to care for the elderly, frail parents.

And the painful realization . . .

About a week ago I spoke with Fred on the telephone. I called Fred to ask about his mom and how the care-giving was going. As usual, I was being the supportive friend for a fellow care-giver. I tried to change the subject when Fred complained about his mom annoying him and needing him. As I often tried to comfort a fellow care-giver, I reminded Fred that his mom was having a horrible year both with her personal health and adjusting to the loss of her husband. Fred did not accept that as a possibility.

During that telephone conversation, I mentioned to Fred that I received a response from my Northwestern University oncologist's office after I sent his office a detailed explanation that effectively told this incredible physician that I knew more about breast cancer than him. (It was the same kind of argument that I carefully made when I was initially diagnosed with cancer - I was just waiting for someone to realize the initial diagnosis was a big mistake. Ha ha, silly medical error. That would have been okay.)

Anyway, I get the handwritten note back from the oncologist's office that the physician is "not comfortable" with my plan to just wait a year or two before following up on a suspicious mammogram. The note further stated that they would "compromise" and allow me to wait until after knee surgery. Ahhh, a compromise. My argument must have been at least slightly viable.

The Northwestern oncologist's note made me feel more than a little dopey. I had cared for dad and his cancer for so long. Dad was diagnosed a couple weeks after I finished initial treatments for my cancer. And I am much better at caring for my dad than myself.

No sooner had I mentioned to Fred that I was trying to convince my medical oncologist of anything then Fred "jumped" on me. As I have been used to over the many years of our friendship, Fred yelled at me, insulted me and then hung up on me.

After I had a few hours to reflect, I called Fred back and told him that I was giving him an opportunity to apologize. Instead of understanding that my life is maybe just a tad stressful enough without the new stress of having to leave my dad (who relies on me everyday) to return to Chicago for elective knee surgery and a breast biopsy, Fred reminded me that he has stress o-plenty in his life. Really? Do we really need or want to compare levels of stress?

What Fred failed to understand is that I never get time for myself. No ball-games, no separate apartment from my sick dad and aging mom. No precious "me time." Everyday I care for my dad. And the guilt associated with my planning a trip to Chicago for what could technically be considered a selfish elective knee surgery is palpable.

I then mentioned to Fred that I had observed he never asked about my dad's health or well being. Not ever. I reminded Fred that I always care about his parents and ask about them. I told Fred that it "sorta" hurt my feelings that he never asked about my dad.

Fred said to me . . . "That is your problem. I don't care. I am under a lot of stress" BONG!!! Friendship and game over.

The opportunity to give care and support to another reveals character. And, it also reveals lack of character.

I will miss Fred's company but I am ashamed of how he has treated his aging family. His mom is left alone. I keep her in my prayers and hope that she finds some comfort in her life.

My family would say that Fred never cared about me during times of struggle and illness. That was probably true but I never needed or expected Fred to show compassion for me. I was just his friend. And frankly I have met very few people in my life that stick by you in times of struggle. It's all about character!

I could not forgive Fred for telling me that he did not care about my dad's well-being. I could have remained his friend though - if for no other reason than I understand the struggles of care-giving. The deal breaker was that when I finally got it - Fred did not have the character to give care and comfort to his own elderly parents. Certainly Fred (and Jim and Bianca) would never selflessly care about fellow unrelated human beings when caring for their own elderly family was a hassle.

Care-giving is not for sissies. It is tough. But it is sometimes a necessary part of life. And for those of us with the character to give of ourselves selflessly, the opportunity to hold a hand or just sit and comfort is affirmation of the power of God and the sanctity of life.

For those of us who are willing, able and loving care-givers for others - pat yourselves on the back. And keep others in your life only to the extent that the presence of these people does not become toxic to your ability to stay focused on care-giving!


  1. Good thought, I enjoyed reading...I never thought of being a caregiver the way you did...but you are right. I have a 27 year old handicap daughter..I have cared for her since birth...24-7...I don't feel I am missing out on anything...sure there are things I would love to do and can't...but I don't regreat any. I also am a care giver to my VietNam Vet, hubby...My grandma lived with me from age 90 till her death at mother lived with me for five years till her death...Guess caregiving is inside my blood..can one be born a 'caregiver'? I will say...some people are not emotionally able to give care..I don't know it is their fault...I do feel love plays a big role in caregiving...but you have to love yourself also...

  2. Aletta:

    I appreciate your contribution to the blog. Many people understand what we caregivers do. It is not about sacrificing, being a martyr or a saint. It is about actually gaining strength by helping another live the best life they can. It is about wanting to make sure that those we love get the best possible medical care and quality of life possible!

    (I once had a doctor tell me to just put my dad in a nursing home because, as the doctor said to me, "you have a life too." That doctor did not get it!!)

    You are so right - caregivers must love themselves and take care of themselves. Sneak away for a bubble bath or grab a quick manicure!

    But most important, I want caregivers to feel empowered. I want you and other caregivers to get that you are among a special type of human being. You have a gift from God. You have a special type of character and inner strength. You are not a martyr. You are sacrificing nothing. You are an angel on Earth for those in your life. God bless you.

    Give thanks today for you incredible family and ask God to continue to bless you with the strength of character to do His work for your family.

    You are a beautiful and loving person.

    ps. Do something special for yourself everyday - especially today! HAPPY THANKSGIVING.