For two and a half years, I have wondered how the “H” word would enter Mitzi’s world. Back in early February, I had my answer.
The 4 of us sat in the Neurologist’s office while he explained how there really were no options at this point. Mitzi, her husband, her sister, and I listened as, yet again, he offered no hope for this inhumane predator of a disease that robs its prey of most everything before it finishes its horrid, consuming march across the mind. I have always felt bad for this doctor because it must be so crippling to have a patient who doesn’t fit “the norm” and to have nothing worthwhile to even try.
Mitzi has been in a fairly rapid decline since the last week of December. Two infections back-to-back seemed to multiply the number of mounting items on the List Of Things She Can No Longer Do that we have to answer at every neuro check-in. And she was no longer eating much at all. She had lost nearly 20 pounds in 6 or 7 weeks. Her tiny frame couldn’t afford that as it was.
The Neurologist said that he could give her a nasal spray to help her appetite. He suggested we could ditch healthy menu options and go straight for ice cream and donuts; cram the calories.
“I wouldn’t recommend it, but a feeding tube would be an option…”
PAUSE
SILENCE
“Or, it could be time to get Hospice involved,” he said quietly, but matter-of-factly.
The “H” word hung like a dense fog in the air for a brief moment that seemed like minutes.
I broke the silence by quickly offering that one of Mitzi’s longtime friends is a Hospice nurse and she has been meeting with us regularly to keep tabs on her progression. Somehow, maybe the fact that we had lunch with Karen every month would suffice instead of it actually, possibly being time to involve Hospice for real. We fumbled through the rest of the appointment and finally walked out towards the exit. At this point, her Neurologist, who rarely is very expressive, told her he wanted a hug and gave her one. We were all shocked, frankly.
Watching that moment, as I quickly snapped a picture, I knew what the implication of that hug meant. And it made my heart sink to my shoes.
Mitzi and I decided to go to one of her all-time favorite restaurants for lunch, even though neither of us wanted to eat. At lunch, I ordered a brownie à la mode before our salad. Calories over quality, right? We cried through the handful of bites we ate. She was very lucid through that lunch. She knew and had cemented in her mind that the doctor had used the “H” word.
Mitzi and I left the restaurant and walked to the beach. We sat in silence and watched the waves crash on the shore while sitting on a bench given in memory of someone. I finally got up the nerve to ask quietly if she remembered being at the Neurologist’s office earlier. She said she did. I asked how she felt about what he said. “It is what it is,” she said. “It’s not going to get better.” I was amazed at how the day’s experience stuck in the same mind that could hardly remember how to use a straw in the restaurant.
I’ve always been very candid with Mitzi. In appreciation of that, she’s returned the favor. There is nothing about this disease she has shied away from sharing with me. I hesitated and then took a breath and asked, “Are you scared?”
“I know where I am going and that gives me peace,” she said.
We sat for a few more moments before I made a joke or two and snapped a picture of us laughing. I took her home. No decisions were made that day. But the “H” word had been let out of the box it has been kept in this whole time during the progression of her disease. And now it was out there. So it couldn’t be ignored, but needed the gift of time to help process and absorb the gravity of this 7 letter word that carries so much weight…
