Kaylen chose and worked with a hospice care for her father, who passed away from cancer in 2011.
Hospice Care: A Source of Support During an Incredibly Difficult Time
people found Kaylen's experience helpful.
My father was diagnosed with cancer in April 2011 after routine bloodwork indicated that his liver enzyme levels were quickly rising. A CT scan revealed a grapefruit-sized tumor on his liver, and a subsequent biopsy confirmed malignancy.
The tumor was too large to meet transplant criteria, so doctors focused on shrinking it with chemoablation. The initial procedure made a minimal impact on the size of the tumor, and my father was scheduled for a second one. However, an impromptu CT scan the day of the second procedure indicated that he was no longer a candidate for chemoablation or any other procedures due to the size and placement of the fast-growing tumor.
My father was gravely injured before I was born while working in an oil field and was given only a 33 percent chance of living after a bull plug shattered his skull. Doctors removed one-third of his temporal lobe, affecting his short-term memory and cognition. They said he would never walk or talk again, but by the time that I grew to know who my father was, he was making a living driving a truck cross-country and supported our family financially. What the doctors said he couldn't do, he did. He changed their knowledge of what a human being was capable of, and the only indicators of what he went through were a deep vertical scar on the left side of his head and the inability to remember names or understand complex issues.
When he was diagnosed, I became his advocate, asking questions, researching and explaining to my father what was happening in a way he could understand. The day his second procedure — our last shot at a transplant — was declined, he didn't understand why he had his surgical cap and gown on but wasn't going into surgery. He asked me point-blank if he was going to die. I looked at him and really saw him for the first time — his scars, his weathered face, his determination. I saw his pride for his daughter and granddaughter, his strength, and his weaknesses. I saw a man who proved everyone wrong, who lived when they said he wouldn't, who gave everything he had for his family. And it was my job to tell him that this was the end of the road.
After an appointment with the local oncologist, his bloodwork revealed that he was not a candidate for systemic chemotherapy, either. There truly was nothing that could be done, and we soon sought palliative care through hospice.
After just seven months, my father passed away peacefully and pain-free in our home in November 2011.
Problems and Issues Encountered
We began hospice care as soon as it was confirmed that no further medical treatment was available. At the time, my father was still relatively independent, although his long-term brain injury caused confusion and the inability to understand many of the medical issues that surrounded us. He was stubborn, to say the least, and didn't quite understand why hospice was involved or what its purpose was.
The hospice team members were caring, friendly, and got to know my father, even in the short time they were with us. They helped explain to my father why he needed a shower chair without insinuating that he no longer had the ability to shower on his own, and they provided us with nutritional shakes for when his appetite decreased. They worked with us to meet his needs at that time while still allowing my father to maintain his dignity and independence for as long as possible.
As his health began to decline, we faced different challenges. My father began sleeping heavily for long periods of time, and his confusion increased as the ammonia began to build up in his bloodstream. Still, he tried to keep hold of his independence and ability to do things on his own for as long as possible, which often resulted in stressful situations for everyone involved.
He was ill enough to no longer be able to do the things he wanted to do, such as make coffee or wash dishes, but he was aware enough to realize that his body was changing and he was extremely frustrated by it. The hospice team continued to provide support and spent time talking with him about the changes that were happening and helping him to accept his new normal.
The first stages of death came quickly, almost as if he decided he was done when he realized his body and mind just weren't working right anymore. He laid down on a Friday afternoon and passed away the following Tuesday evening. Even though this time was short, it was the most challenging for me. This was a man who had once changed my diapers, whose strong shoulders glistened with sweat when he mowed my lawn, whose large, callused hands cradled my daughter's small ones while they played together. Now he was helpless, with dry, cracked lips and sunken cheeks. Although my heart was deeply broken, there was a beauty in my responsibilities now. It was a terrible and great weight on my shoulders to give him a death with dignity — a death with peace. It was a death that, as the strongest, bravest man I had ever known, he deserved. It was my burden — and my honor.
The hospice team helped me keep him comfortable with medications and helped me change his position when he wasn't breathing well. On the evening of his passing, we were attempting to elevate him in a way that would allow him to breathe better when the hospice nurse looked at me suddenly and let me know that he was "trying to go." We comforted him, and unsure of how long the process would continue, I left the room to call our family.
When I returned a few moments later, the hospice nurse informed me that he hadn't been breathing for around four minutes. She helped my 6-year-old daughter — his beloved granddaughter — sing to him as he left this world and transitioned into the next. We could not have planned a more beautiful and peaceful way for him to pass.
What Would I Do Differently If I Could?
The only real change I would want to make would be simply to spend more time with my father throughout each stage of his passing. I was his sole caretaker as well as the sole caretaker of my daughter and a work-at-home mother. It was a hectic time, and I only wish I could have slowed down long enough to just sit with him.
Advice for Others
My heart goes out to others facing this situation, and the best advice I can give is to accept that death is a natural part of life, even when it seems too soon. Your loved one is experiencing many emotions about his or her upcoming death, and denial and frustration on your part can make things more difficult.
It's okay when your loved one no longer has an appetite or stops caring about things that used to matter. Support your loved one through each change, and allow hospice to support you both. Hospice can be a tremendous resource for caretakers, from helping with supplies to arranging for a sitter so you can have some time to yourself and recharge your batteries.
You only get one chance to ease your loved one out of this life. There aren't any do-overs. Focusing on your own fears, how upset you are, or how angry you are can rob your loved one of the death he or she deserves. Instead, focus on the comfort and reassurance of your loved one. You can give this person a good death. You just have to be strong enough to do it.