CARE FOR THE CAREGIVER: The Guilt of Unilateral Decisions by Peter Rosenberger

MICHAEL GOMEZ

Sitting across the table from a man caring for his wife who suffers from Parkinson’s disease, I couldn’t help but see the weariness in his eyes on his face.

When a mutual friend asked me to meet with him, the comment was simply, “He’s worn out, and I think you could be of help to him.”

“Worn Out” seemed to be an understatement.

Stirring his coffee, this retired physician reflected, “I miss playing golf with my friends.”

Listening for a little while longer, I recalled what I have come to call the three “I’s” that plague every caregiver:  The loss of independence, the isolation, and the loss of identity.  Immediately identifying the first two, I asked him,” Do you have the resources to hire someone part time?”

 

 

The predictable response came quickly, “She’s not comfortable with having someone come into our home.”

Noticing the avoidance of speaking in first person singular, I simply replied, “I didn’t ask what she was comfortable doing.”

The loss of identity, where the wants and needs of a loved one consumes a caregiver, remains one of the most challenging components when it comes to helping a caregiver.  From such phrases as, “We just got home from the hospital…” or “He’s having a bad day…” or “Our days are filled with …”—speaking in first person singular all but fades away.

I understand feeling that loss of identity—perhaps on levels that few others will.  Serving as a caregiver for my wife for nearly three decades (our entire marriage), I’ve never really known any other lifestyle as an adult.  Daily teetering close to edge of collapsing emotionally, physically, and/or financially wears on a soul, and it is a challenge facing sixty-five million Americans caring for loved ones.

Looking at this husband in torment, I gently, but firmly stated, “You’re not violating your marriage by making unilateral decisions.”  Adding, as he lifted his eyes, “Sometimes the ones we love can’t see past their fear, their illness, or their pain. As caregivers, we have to think of the good of the ‘unit’ not just the sick/disabled person. That means we have to make decisions that will protect the health and well being of the caregiver—even if it means going against the wants of the person receiving care.”

A person in pain, on heavy medication, suffering from dementia, or dealing with a severe disability or illness can’t always see beyond their immediate need.  Their cries for relief often overpower the gentle whisper of wisdom that cautions us to take a break.  The guilt of making unilateral decisions, particularly for spouses and children caring for elderly parents, can be crushing.

• We’re mobile, they’re not.
• They’re in pain, we’re not.
• They cling—we feel suffocated.

 

These and other dynamics play out daily (often hourly) in the relationships of caregivers and their charges.   In spite of the conflicting feelings, caregivers must get fresh air and allow themselves to step back and make hard decisions for the good of the patient and themselves—and they often have to do that while feeling horribly alone and scared.

Looking across the table at the coffee shop, I saw familiar feelings cascade over my new friend’s face.  A smart man, a capable man, a loving husband and father, and a weary and lonely caregiver—I knew his turmoil well and my heart broke for him.  Unlike someone who is warm and well-fed trying to relate to someone who is hungry and cold, we caregivers recognize and relate to each other because we live it.

I asked him point blank, “How would you like to resume your Tuesday golf outings with your buddies, have lunch at the club, play another round in the afternoon—and then come home to find your wife bathed, dressed, the house clean, and dinner prepared?”

As the tears filled his eyes, he simply said, “I can’t imagine how wonderful that would be.”

“You are one phone call away from prying your hands off the wheelchair, and putting them on the golf club—make the call.”

To his credit, he phoned the service I recommended, and they worked a wonderful schedule of help coming to the house.  His problem was not financial—it was guilt and conflicting emotions.

The best way to help a caregiver is to see and acknowledge the internal conflict those feelings create—and gently walk them through learning to make better choices to not only help themselves, but ultimately help those they are giving treasure, sweat, and even blood to help.

It’s often hard to know what it looks like to help a high-functioning “multi-tasker” who seems capable of managing chaos, but don’t be intimidated by their skill sets.  Those abilities come from years of practice and repetitive behavior.  When I sit down at the piano, it looks like my fingers have a life of their own, but in reality listeners hear the culmination of decades of practice and instruction.  Caregivers repeat many of the same tasks over and over, while simultaneously learning from a teacher far more demanding than even the strictest of my piano professors—fear.

Fear drives so much of the desire we caregivers feel to wield control in an uncontrollable situation.  When the wheels seem to be coming off, many of us panic and attempt to be superhuman.  When presiding over a loved one’s decline and suffering, it won’t be tidy, and it will likely not get better.  Yet how many of us recklessly hurl ourselves at set of circumstances without regards to insuring sustainability?  This is precisely why I coined the term “Delta Doctrine” when seeking to help myself and fellow caregivers.

Flying out of Atlanta one day on Delta ( Duh, Everything Leaves Through Atlanta), the flight attendant gave the best advice I’ve ever heard for caregivers.  “In the event of loss of cabin pressure, these masks will drop—put yours on first before helping someone else.”

When we are charged with caring for the safety of a loved one, it’s counter-intuitive to look to our own needs first—but it’s difficult (if not impossible) to care for someone while gasping for air yourself.  Flight attendants give this message every day, and they wouldn’t give it—if it wasn’t needed.  Notice they don’t tell us how to drink water, open the bag of peanuts (which can be deceptively difficult I might add), or other basic things assumed as common knowledge.

Somewhere along the way, airlines grasped a picture of human behavior when in crisis mode that required instruction:  “A passenger who puts their mask on first is a safer passenger and is more capable of helping others.” A caregiver breathing safely (physically, emotionally, financially, professionally) is an effective caregiver—regardless of how challenging the circumstances.

Healthy caregivers make better caregivers.  Our vulnerable loved ones’ worlds are so fragile—and we serve as the critical team player.  Yet we often make the most horrendous decisions based upon misplaced guilt, justifiable compassion, obligation, and even love.  In high stress moments (which is daily for most caregivers), emotions must be pushed aside for reason.  It is simply unsustainable for one person to enmesh his/her life into the life of another who is suffering.  There will be a collapse; it’s only a matter of time.

In addition, simply because our loved is sick or disabled doesn’t guarantee we will outlive them.  Yet, how many caregivers structure their lives in that manner?  Think of all the caregivers not seeing their own doctor regularly (72% are reported as failing to maintain regular visits with their personal physician).  Think of all the caregivers who don’t have life insurance.  Think of all the caregivers who jeopardize their jobs by not having adequate communication with supervisors and healthy professional plan.  The list goes on of caregivers who fail to “…put their mask on first.”

What my friend at the coffee shop came to understand is that he is loving his wife better by ensuring that he is in a healthy place.  This keeps him engaged, supportive, and, to be blunt, helps him stay alive longer.  Getting him back on the golf course helps him live.

Decades ago, I learned how to be a patient advocate with doctors, hospitals, and insurance companies—a skill that is not as complicated as one might think.  Advocacy, however, is only one component of serving as a caregiver. When the crisis du jour of caring for a vulnerable loved one hits, I daily remind myself ( and ask others to remind me) to “put my mask on first.”  Fear and panic never seem to take a holiday, so the battle is not in negotiating with America’s health care system, it’s in navigating the complex landmines of fear that lie in the heart.

With the help of others who walk this journey, we can face that fear and make those tough unilateral decisions with the confidence that we care for them best—when we are doing so from a healthy, calm, and sustainable place.

 

ABOUT PETER ROSENBERGER

Compiling a lifetime of experience to offer a lifeline of help, Peter Rosenberger draws upon his three decades as the sole caregiver for his wife through a medical nightmare that has escalated to 78 operations, multiple amputations, treatment by 60+ physicians in 12 hospitals, 7 insurance companies, an $9 million in medical bills.  In addition to lengthy media and speaking credits, his third book, HOPE FOR THE CAREGIVER will be released 9/16/2014 and he hosts a weekly radio show for caregivers on Nashville's 1510 WLAC.