Only Silent Tears
Categories: Being a Caregiver
By Carol P. Bray
In the 2012 publication of THE Challenge!, I chronicled my husband Bill’s life in a story called “No More Ants at Our Picnic!” after he suffered an anoxic brain injury. I wrote about the difficulties we had navigating hospital and insurance systems, dealing with the invasion of our personal space while he needed home care, and his journey to recovery.
One year later, I wrote “How To Avoid (or lessen) the Silent Scream,” an article about my job as Bill’s caregiver and how I managed to take care of myself while taking care of him – an important reminder for all caregivers. I am writing again with a final story.
Following years of inpatient and outpatient therapy, Bill regained almost all his abilities; he still had difficulty with balance, for which he had to use a walker. Over the next 10 years, Bill had numerous hospital admissions for various medical problems indirectly associated with his brain injury. Each time, he had to go to rehab to regain his walking. Bill and I spent 372 days in hospitals. I was always with him, and we formed a special bond during these occasions. Each time Bill was hospitalized, he worked hard to improve his condition so that he could return home. He was always successful, which is why his death on March 14, 2019 was devastating! He died the day before our 44th wedding anniversary.
Bill’s brain injury was not the primary cause of his death, but it was a significant factor as the problems he had with his kidneys, lungs, and heart were linked to his limited mobility issues.
At the time of his death, Bill was in the ICU of a local hospital where he had been transferred from the rehabilitation hospital after a medical episode. Upon his arrival, he was immediately intubated and placed in intensive care. In the weeks before his rehab admission, Bill’s overall condition had deteriorated. His eating, drinking, walking, and strength were poor, and his cognition was not good. We had home health care aides as well as occupational and physical therapists in our home. When he did not progress and his doctors could not diagnose his problems, he began rehabilitation.
After five days in the ICU, Bill was taken off the ventilator. While still critical, he continued to improve and was doing well the day he died. The possibility of his death in the hospital was never discussed, so to say his death was a shock is an understatement. We knew his recovery would be long and difficult, but death was unexpected. I had promised I would take him home that day and had made arrangements to do so. I was sad that I broke that promise. He had never failed to get home before, and I did not think this time would be different. Yet, there I was – a survivor, a widow, and no longer a caregiver.
Bill’s death brought feelings that both surprised and saddened me. I was not as upset as I thought I should have been. Perhaps this was because I believed Bill’s death was a conscious choice he made as he was tired of the fight he had fought for so many years. The limitations he experienced due to his medical issues were numerous. I think he was tired of the struggle and knew his road to recovery would be long and difficult. I also think he wanted me to be free from his daily care, to enjoy life, and to do things I could not do with him.
I felt relieved that Bill was safe and free from needing assistance every day. I realized I had all this time and freedom that I had not had in years. However, when I finally had the time and space I had so often desired, I realized I didn’t really want it. I hated being alone and still do, especially at night, watching our favorite TV shows and doing things by myself. For the first few weeks, I could not read obituaries in the newspapers and did not like going places alone. I worried about my own health and the fact that there would be no one with me should I have a problem. Fortunately, these feelings have subsided. I have family and friends living nearby who help fill the void and help me feel safe. I wonder if my feelings are similar to those of other caregivers. I believe they are normal, but difficult to talk about.
There are no more “Ants at Our Picnic” or “Silent Screams” – only silent tears. I miss my husband, his humor, and his many kindnesses to myself and others. We did everything together. At times, being a caregiver was a burden, a great responsibility, and sometimes drained my energy and spoiled my joy; it also brought me great happiness because I was caring for someone I loved. While I was always the one who received the accolades for my dedication and service, Bill was the one who should have been given the praise and glory. He was one of a kind. He never once complained, yet he was the one who lost the most.
In 2009, Bill’s life was changed forever. In 2019, so was mine!
I am reminded of the song “The Dance” by Garth Brooks:
“Looking back on the memory of the dance we shared
beneath the stars above
For a moment the world was right
How could I have known you’d ever say goodbye
And now I’m glad I didn’t know
The way it all would go
Our lives are better left to chance
I could have missed the pain
But I’d have had to miss the dance.”
Bill was a Vietnam veteran, United States Air Force. He was buried, with full military honors, at Arlington National Cemetery on February 5, 2020.
Bill is pictured above with his wife, Carol, his children, and daughter in law.
This article originally appeared in Volume 14, Issue 1 of THE Challenge! published in 2020.