Dying at 30. That shakes me to the core.
Another one of my high school classmates is slipping away as I type this.
She has battled leukemia for over three years. But its not the leukemia taking her life, its an infection (e. coli) that gained entrance via a bedsore, and due to her compromised immune status and all the underlying issues, it spread rapidly and caused septic shock. Now the infection is in her brain and will soon spread to her lungs and heart. All aggressive treatment has been stopped and they are “making her comfortable”.
I know what all of that means. I know what is going on right now. I’m a hospice nurse.
Although I am 1500 miles away, I can feel the pain of the community. My best friend from childhood, lets call her Pooh, went to see Qui in the hospital yesterday. Again, I flipped into nurse mode as I prepped her before she went in, what she might see, what she might not see, why Qui may not be getting tube feedings or fluid, why she may be talking funny.
A year ago, I was doing the same thing, only it was my family doing the hospice dance.
My paternal grandfather had a series of unfortunate health events last year. It was one catastrophe after another. At 80 years old, he insisted on living alone and living 5 hours away from his kids. Yes, he had some family nearby, but not the sort that would religiously check on him.
A fall caused a brain bleed and required brain surgery early in the spring. He came up here for rehab and stayed until late summer. Then he insisted on returning to his home, and living alone.
He had a massive stroke in October. Brought on by a completely unnecessary medical procedure. Luckily, my aunt was staying with him at the time, or who knows when someone would have found him.
They attempted to rehab him from the stroke, but it was futile.
I was the one visiting the day the doc came and suggested hospice. I called my dad, he called his siblings. I was there for that meeting.
It is no fun being on the flip side of the hospice coin. Suddenly, the doctor is giving you the speech that you have given to so many others. Words like “comfort” and “end of life”. Suddenly, its real. You will lose a family member.
I have always thought that hospice was a gift. You get a chance to say your goodbyes. You can have “closure” and say all the things you wanted to say before someone passes. Whereas in sudden death, all of that is left unsaid. Its not always like that. In my grandfather’s case, he wasn’t exactly coherent most of the time. He couldn’t reply to questions, he couldn’t carry on a conversation, and he was extremely confused.
He made it difficult. He lingered for six weeks. And in those six weeks I think I aged about five years. As the family hospice nurse, I was expected to know everything: “can we feed him?”, “can we give him this medication instead?”, “why is he making that face?”, and the worst one “why hasn’t he passed yet?”
He couldn’t eat because the stroke affected his swallowing ability. Everything he ate dumped directly into his lungs. But he was confused and thought we were torturing him. He told family from out of town that we were starving him. Then we figured out that he didn’t want to “eat”, but just wanted a “taste”.
He pushed my dad and uncle away and doted on my aunt. That was much like his entire life with his children, but seeing it at end of life was difficult. I have seen it plenty of times in my patients, but in your own family, broke my heart.
Family I had never met before came in from all over Texas. I heard stories about my grandfather and grandma, saw pictures. One second cousin told me that my grandpa was her inspiration to go to college and make a better life for herself. So many mixed emotions for me.
Working all day with my own patients, trying to juggle texts and phone calls from my family during the day regarding my grandfather, and visiting him at night just took its toll. I stopped visiting my grandfather so much.
I had said what I needed to say to him prior to a trip I took with Sunshine for her birthday to Disney. I was at peace. I figured if he passed while I was away, I would be ok with it. He didn’t, but after I had made my peace, I visited less frequently.
I saw him the day before he passed away. By this point, he was sleeping 20 hours per day, essentially a light coma. He would talk about my grandma being present (she passed in 2004) and smelling her perfume. At times he thought that I was her and talked about her beauty. Again, I have seen this many times in patients, but experiencing it from your family is amazing.
When it was time, he declined rapidly. We received a call from the nursing home that he had an “event”, and he was found with labored breathing during morning rounds. They felt like this was it. Using my experience, I did a quick assessment and confirmed their suspicions. We called his hospice nurse (of course I wasn’t assigned to him). And everyone who could, made it to his room. We shared stories about his life.
My head was on his chest when he passed away.
I gave the eulogy at the funeral.
I know what Qui’s family is going through. I know it too well. Just sitting there by her bedside, watching each breath, counting respirations. Looking for any sign that she is slipping away. The odd sense of anxiety, wishing that it would be over, but not wanting her to go. I call it the “death watch”.
Qui kept a CaringBridge website to update her MANY friends and family during her battle. Her last personal entry brought me to tears when she wrote that she knows that she is dying. I have always wondered how a person can deal with that kind of news. I worked with terminally ill patients for years, yet I have never asked that kind of question directly. How can someone process that they will no longer be living?
Facebook is humming, Qui took full advantage of technology to talk about leukemia and bone marrow donation. She will leave a legacy behind. So many people learned about cancer, leukemia, bone marrow transplantation because of her. She will live on.