by Guest Blogger Terry L. Wise, J.D.
I smoothed the mentholated cream over his cheeks and delicately swept the razor across his face at well-rehearsed angles. My fingers twirled through his hair, foaming the shampoo before carefully rinsing it off his skeletal frame. I patted him dry, lifted him back into his wheelchair, and rolled him over to the clothing laid out on our bed. I buttoned the last button of his freshly pressed white shirt, adjusted his tie, and patted dry the beads of sweat that had already formed across his forehead.
We were ready for the dinner he couldn’t drive us to, the meal he couldn’t eat without choking, the table where we could no longer laugh at each other’s jokes or exchange tender sentiments. But this was our second wedding anniversary, I was 31 years-old, and we were going out to celebrate the blessing of another year together.
Three weeks before our wedding, my husband, Peter, and I sat across from The Messenger, listening to the sounds that would unhinge our lives from the rest of the world. “Lou Gehrig’s Disease” passed through the doctor’s lips like a stream of black smoke, as we were introduced to the company of our new, unwanted stalker. It had begun with a slight slur in Peter’s speech. Over the next four years, random paralysis would invade each part of his body, depriving him of the ability to speak and confiscating one liberty at a time, leaving his mind unaffected.
“My husband is dying and telling you about it won’t change a thing.”
It wasn’t long before I began to cement the conventional mindset of a family caregiver. The disease was incurable, degenerative, and devastating. Nothing I could say, nothing anyone else could say, was going to provide me with hope or alleviate any portion of that reality—or so I thought.
I was young. I was strong. My hands worked, so I could shave him. My mouth worked, so I could speak for him. My legs worked, so I could bring him the things he needed. His dignity needed to be preserved. As long as I was still standing, any notion of asking for outside help had been inexcusable to me.
There was just this one lingering problem. Time was fostering an inverse relationship between our needs. As Peter’s condition required more of me, my strength and stamina were steadily declining. I had been treating fatigue like a nuisance, not an obstacle, until the day my therapist turned the light on with a simply worded statement.
“Oh Terry, just because you can physically do these things does not mean that you can do them psychologically.”
I knew I had become desensitized to many of the adjustments I had unconsciously made during the slow progression of Peter’s illness, but I had never considered the intricate link between my physical and emotional capacities. His disease had been progressing, taking my will to live right along with it.
I saw a therapist for a brief period of time during the last year of Peter’s life. Despite my hopeless belief that talking wouldn’t accomplish anything, I began to elaborate upon my care-giving responsibilities. Peter’s speech was unintelligible and I had become his full-time interpreter. He could no longer eat without assistance or constant choking. He could no longer walk, drive, or bathe himself. I was sleep deprived from being on call and turning him throughout the night. I was managing the medical bills and every other task associated with our daily lives. Peter required my full-time care.
However, much like other caregivers for loved ones with long-term illnesses, I was unable to justify doing anything less. After all, he was the one who was dying, not me. He was the one who couldn’t move, not me. I was trying to spare him any further indignities and invasions of privacy. Moreover, he had grown accustomed to my doing everything for him.
Fortunately, my therapist was able to help me understand that the emotional consequences could be just as damaging as the physical toll. I realized that Peter and I had both become guilty of creating unreasonable expectations of me. As I began to recognize some of my human limitations, I was able to enlist the help of others for some of his care.
Unfortunately, not talking to others and not seeking that advice sooner almost cost me my life. After my husband’s death, and what seemed like several lifetimes later, I swallowed 200 Percosets and 60 doses of Morphine. Surviving that near-fatal suicide attempt still remains a medical mystery.
Yet, what has become unquestionably clear are what the causes of my severe depression were, as well as what steps I could have taken to prevent myself from spiraling into a suicidal despair. Many of these are discussed at length in my book, Waking Up: Climbing Through the Darkness, which details the process of my recovery from clinical depression. Reaching out to others, coupled with returning to psychotherapy, helped me realize that although I couldn’t control Peter’s illness, I could have controlled its impact.
I now travel to hundreds of cities as a public speaker. Whether it is through writing or talking, I learned the dual benefits of sharing personal experiences with others. That is, I have not only been able to help myself, but I have been able to help others who can learn from my story.
The role of a caregiver is most often laden with grief, alienation, and exhaustion. It is critical to find avenues that will alleviate some of the emotional and physical burdens. Seeking help, whether it is from a therapist, family member, friend, or support organizations, yields limitless opportunities for comfort and strength. Reaching out will enable you to live, rather than die, with your loved one.
Terry L. Wise
Author & Public Speaker
Waking Up: Climbing Through the Darkness (2012)