Making Something Out Of Nothing

How hospice changes everything.

Photo by Kien Nguyen on Unsplash

This is the first time in many years that I’m not teaching summer school. When our kids were young, Mike would teach a summer class or two and I’d be in charge of chauffeuring people to swimming lessons, art camp, Sonic happy hour, or whatever else was on our daily schedule. Most of that activity was financed by the extra income provided by Mike’s summer work. But also, he enjoyed working with students so much that taking a three-month break didn’t sound even a little bit appealing.

As our kids got older and my chauffeur services were no longer required—or, at least, not as frequently—I started teaching a summer class as well. (Teenagers aren’t cheap. Neither are college students, or chronically ill partners.) But this year, for the first time in a very long while, I decided my free time was more valuable to me than the money I’d earn from picking up another class.

And what have I been doing with that time? A whole lot of nothing.

Actually, it just feels like nothing because I’m not teaching or providing full-time dementia care—the two full-time jobs I’d been juggling for years. What I’ve actually been doing is a thorough edit of my memoir manuscript, along with researching and sending queries to agents and small presses as I continue to look for a publisher. I’ve also been reading, drawing, and gardening. (All my backyard beds are weeded and blooming for the first time in ages.)

Some of those things actually require a good deal of work. None of them are things I had any time for while juggling the demands of two full-time jobs—one of which required providing dementia care for the partner who had once juggled the demands of teaching and parenting, just as I did.

Last week I had what’s called a “care coordination” meeting with Mike’s hospice team and two members of the memory care facility staff. Ordinarily this happens soon after someone is admitted to hospice (which, in Mike’s case, was three months ago), just to make sure everyone is one the same page. But, not surprisingly, various complications got in the way of finding a time when six or seven people who care for patients in fragile health could gather in the same room.

At the start of our meeting, we talked through the list of Mike’s meds—which, I had realized in the days leading up to this meeting, I no longer knew by heart. I confirmed with the memory care staff that Mike will be able to stay at the facility through the end of his life, unless I decide to move him elsewhere.

Then I asked the hospice doctor about the likelihood of Mike being removed from hospice at the end of his first six months, when Medicare requires a re-evaulation. Reading the look on her face, I quickly clarified that I wasn’t hoping for a miraculous recovery: I understand how Parkinson’s works. I don’t want Mike removed from hospice. But a friend whose father had Alzheimer’s wound up fighting to keep her team on board.

“I can’t say anything for certain, of course,” the doctor told me. “But Mike’s in the late stages of Parkinson’s dementia, so I can say that seems unlikely.”

Our meeting also gave me the chance to meet the hospice chaplain in person for the first time—I’d spoken with her by phone, but her visits with Mike hadn’t yet crossed paths with mine. She noted that he has a birthday coming up this month and asked me to share my favorite memory of a birthday celebration. Mike was never a fan of parties (or cake, for that matter), so I told her our celebrations tended to be pretty low-key. This year, the kids and I will likely visit him at the facility with some frosted sugar cookies—easy for him to eat, and one of his favorite things.

I’m always taken off guard when something personal pops up in a professional setting, so I was surprised by that question about birthday celebrations. I understand that this is literally the job of a hospice team, to make professional care feel less clinical and more personal, but I was similarly disconcerted when the hospice social worker asked what I’ve been doing to take care of myself. I hadn’t come into this meeting prepared to talk about me.

I explained my decision not to teach summer school this year, in favor of writing and reading and planting. Then I thought to mention that, after my last visit to my primary care doctor, all my bloodwork had come back completely normal for the first time in more than a year—so I must be doing something right. That news generated a little round of applause.

“I’m so glad to hear that. And I want to thank you for letting us help you make it happen,” the social worker said, as if I were the one doing something completely extraordinary.

In the last few months, I’ve learned that many people decline hospice care because they’re convinced that hospice teams are in the business of hastening death. I don’t even understand the logic behind that belief. Do people die after going on hospice? Yes. Because they’re terminally ill when they go on hospice.

I know a far greater number of people who’ve told me that hospice was their saving grace in a difficult time. I also know the team who helped care for my dad at the end of his life was a godsend for my mom. She was a part of that generation of women who were trained to be in charge of nothing, so she found herself completely at loose ends when she suddenly had to take charge of everything.

For myself, I can say that hospice has been the best thing to happen on this slow, terrible journey. Not only do I feel less alone in making decisions about Mike’s care, the way he receives that care has shifted a bit as well: questions first go to the hospice nurse, who then gets in touch with the hospice doctor. When the nurse calls me, she explains both what’s going on with Mike and how the doctor would like to manage it. That means every problem comes to my attention with a potential solution in place.

I always have the option of asking the team to reconsider (and I have, a couple of times), but I’m usually comfortable trusting their expertise. They’re the people who spend their professional lives working in the valley of the shadow, after all.

Now, when my phone rings with a call from the facility, my stomach doesn’t flip. I already know they aren’t calling about an emergency that requires an immediate trip to the ER. Thanks to the hospice team, there will be no more of those.

Instead, we’re all focused on caring for Mike in the ways that will bring him as much comfort as we’re able to provide. There isn’t much else to be done. I don’t think I’ll ever stop wishing there was more I could do for him, but even so, I’ll keep showing up to do what I can.

That’s something.