Caregiving Challenge: Prying the Hands Off the Wheelchair

By Peter Rosenberger, CP Guest Contributor Friday, March 14, 2014

One of the more challenging aspects of helping a caregiver is "prying the hands off the wheelchair." So wrapped up in the needs of their loved one, I've seen (and been one of) countless numbers of caregivers who valiantly but vainly try and contain that which cannot be contained. The thinking is often: "If I don't stay glued to the situation, it will spin out of control." "If someone else tries to help, they will make mistakes that I have to clean up."

Sometimes it's simply a way of life that becomes too familiar to stop.

Regardless of whatever we caregivers fear, help begins with removing (often painfully and slowly) ourselves from the imaginary rule of our loved one's condition. The only thing we can control is our own thoughts, words, and deeds. Once our minds grasp that truth, we find that we begin to respond rather than react.

While speaking at a telephone "town hall" forum once, a man stated he wasn't comfortable allowing others to help with his ailing wife. "I handle all of her medications, and I take care of her exclusively," he stated.

Understanding his answer and life all too well, I asked a simple question: "What is your plan for your wife should something happen to you?" The silence was deafening. Hurling himself nobly, but recklessly, into caring for his wife, he attempted to dominate the circumstances instead of providing leadership. He left no plan of care in the event of his own injury or death. Just because our loved ones are sick, disabled, or elderly doesn't guarantee that we will outlive them. This man lived with imaginary security and placed his chronically ill spouse in even greater jeopardy- believing in a control he did not posses. We caregivers are particularly susceptible to this illusion.

Whether wrapped in the nobility of caring for a suffering loved one or maybe just out of naked fear - the urge to wield control and power into the craziness of a chronic illness/disability is often overpowering and can have devastating results. From the moment one initiates a lifestyle based upon the myth of control, the clock is ticking towards failure. Since a long-term issue is by definition "unfixable," the illusion and reality will eventually collide. The results for the caregiver can be extreme rage, depression, or even abandonment.

There appears to be seven consistent warning signs that a caregiver's battle with control is escalating:

1. Rage/Reactive behavior
2. Excessive weight gain
3. Lack of regular doctor visits (for the caregiver)
4. Hyper activity/difficult speaking calmly
5. Evasive
6. Isolated
7. Struggles to speak in first person singular

Any of these are indicators; most of the time it's a combination of all of them. When these signs are present, it's time for immediate help for that caregiver. Maybe it starts with a family physician or a pastor - but regardless of how it begins, the path needs to lead to professional mental health practitioners. When these seven things are fully evident, the patient's wellbeing (and even life) is in danger. It's just that simple. The caregiver is no longer functioning in a healthy manner, thereby jeopardizing the patient.

Gently helping caregivers pry their hands off the wheelchair and directing those hands to a healthy lifestyle is the first step towards recovery and balance. It will not be easy - many caregivers thrive on crisis. A little work, along with a great deal of grace and compassion, however, will help that caregiver inch closer towards accepting their limitations - without guilt.

Caregivers want to be productive and responsible. It is a traumatic thing to preside over the decline of a loved one, and we often push ourselves to inhuman extremes to fight back. Along the way, however, we often become confused by the "enemy" and we fight our loved ones, and ultimately against ourselves, as we rage against our powerlessness to change horrific circumstances. Accepting reality is neither capitulating nor surrendering - but rather a sign of a healthy outlook. In the moment of acceptance, serenity gains a foothold.

A settled and peaceful caregiver makes a great caregiver. Instead of attending our loved ones with clenched fist and tight jaw, we find that we can care for them from a calmer "heart space." In doing so, we may discover our lighter hearts may even allow laughter - even while we often have tears on our cheeks.

Peter W. Rosenberger is the president of Standing With Hope, a non-profit prosthetic limb outreach to amputees overseas. His newest book, Wear Comfortable Shoes- Surviving and Thriving as a Caregiver, draws upon lessons learned from serving as the sole caregiver for his wife for twenty-seven years through a medical catastrophe that includes 78 operations, multiple amputations, 60 doctors, 12 hospitals, and $9 Million in medical bills. His weekly radio show for caregivers is on Nashville's WLAC -1510 ( Clear Channel).