After my husband’s last hospitalization three years ago, before he died, I knew we never had discussed how he wanted to die, because, like every member of his family and mine, he wanted to avoid talking about it.
He had known for a very long time that he had a “constellation of very serious medical issues, but refused to discuss his death. I had brought it up different times, by asking if he wanted to visit any people or places that he particularly liked, and he said he didn’t. I had mentioned that I wasn’t frightened of dying because I have a spiritual side, but since he didn’t, I wanted him to know that he could discuss anything and everything with me, even if he was frightened. He always shook his head, as if even the act of saying “No,” was a commitment he didn’t want to make.
And, later, when our adult son and I were grieving his death and our loss, as we sheltered in place due to COVID, I promised myself and our son that I would handle things differently. We had been traumatized by his last horrific hospitalization, but we also were sad that we were left alone to honor him and celebrate his life without his input at all, although we ended up creating a lovely little service, and I wrote about his death here, and on a Parkinson’s site, in which I had made friends.
Three years have passed, and our son and I finally are doing so much better, but I hadn’t honored my promise about planning my death, because I hadn’t felt strong enough to do so. Then, two weeks ago, out of the blue, I developed a kidney stone, and totally freaked out. Honestly, an operation for a kidney stone, even a large one that wouldn’t pass on its own, doesn’t compare to anything that was wrong with my husband, including congestive heart failure, stage 4 kidney disease, lumbar spinal stenosis, atrial fibrillation, high blood pressure, Parkinson’s and so much more.
But when the horrific pain appeared at 4:00 on a Saturday morning, and I stayed in the bathtub for four hours because we didn’t have pain medication, and I initially thought it was just another stomach ache that I had started seeing a GI doctor about, I immediately started thinking about my death.
At some point, I realized it was just a kidney stone (I’d had one a few years earlier), my son and I called the EMTS because I was in horrific pain, and we went to the ER.
When we got there, I immediately was processed. But, I didn’t realize that since my vitals were okay when I entered, I would be put at the bottom of the triage list, despite the fact that my pain was epic!
Suffice it to say that after no one provided pain medication that worked for an hour and 20 minutes, and I was screaming as loud as I could while I pushed the nurses’ button so many times, I later realized I could have damaged my finger and my voice at the same time.
A week later, when I finally was able to meet with my late husband’s urologist (whom he’d known for 30 plus years), I learned that the 10 mm kidney stone, which had stopped blocking my ureter so the pain had disappeared, was sitting in the middle of my left kidney, hadn’t budged and wouldn’t.
So, after the urologist told me my options, I researched them, and two days later chose the Thulium fiber laser lithotripsy surgery, after which, he would insert a stent into the ureter. Fortunately, there was a cancellation and my surgery was scheduled 10 days later, during which time, I found religion and mightily prayed that the stone wouldn’t move before the surgery, while I berated myself for not having done what I’d promised about developing my death wish plan ...if there was a terrible unforeseen problem.
What shocked me was that I was more concerned about dying during this kidney stone surgery (which isn’t usually life-threatening) than I had been about a melanoma surgery I’d had six years earlier, which also wasn’t life threatening, although it was much more serious. And, to make a long story shorter, my dwelling on death had to do with my late husband’s last hospitalization, in which I had to fight to bring him home to die, and from which he slipped into a coma within a day.
So in the intervening days between the kidney stone discovery and the surgery, I did all the things my husband hadn’t done in preparation for his death. I met with his probate attorney and signed a new Will, a new Power of Attorney for healthcare and finances (a simple version of which, you can do yourself although it probably varies by state), and some additional documents (which I had set into motion a few weeks earlier, and none of which would be ready in time for my surgery, but it was a first step.) I called my husband’s personal financial adviser at our bank. I talked with our son, and told him what I was doing, although, like his father, he didn’t want to discuss it.
I talked with my social worker, and asked him if he knew of any way to craft a more personal document outlining my death plans. And, he recommended Five Wishes, which I forgot to buy, but had a sample and could incorporate some of their recommendations into my Advanced Directive (the sample is from my home state, which is CA).
On the night before my surgery, I wrote the final page, in which I clarified once again that I don’t want to die in the hospital. If something happened to me in surgery, from which I couldn’t recover and regain all of my faculties, I wanted to die in a hospice. I wrote that I didn’t want any unnecessary tests, or procedures done. I didn’t want to be kept alive with an incubator or force-fed. I stated which mortuary I wanted to use, and said that our son didn’t have to witness my cremation, but I wanted my ashes and my husband’s buried together in a place of my choosing or his. Finally, I had the Advance Directive witnessed by two strangers in the hospital cafeteria because I was running late the day of my surgery, and needed it to finished, and scanned into my chart before surgery.
It isn’t the document I plan on using in the future. It was rushed, and completely unlike my style of writing. It wasn’t thoughtful or spiritual. Its foundation was fear, not love. I wrote what I didn’t want, not what I do want. And, it didn’t include the most important element, which will be my last letter to our son.
At the time, I knew the document didn’t reflect who I am, who and what I love, and, or provide any insight into my life’s choices, and how I view death. But, I was relieved to have written it, just as a way of protecting myself if a tragedy had occured. And, I realize that this last act requires so much more of me, and what I wrote was only the first step in a very important process.
Before I went to bed, I realized that the Will I had signed with my attorney, didn’t include some important gifts, that have little monetary value. So, I wrote a list of the people who would appreciate being the recipients of my five accordions, three autoharps, electric guitar, keyboard, bowed psaltry, and two harmonicas, as well as all my craft books, which I know my son doesn’t want. It was the only time during the process that I smiled.