Where We Are Now

And planning for what comes next.

Photo by Oxana Melis on Unsplash

After Mike’s most recent hospitalization, I contacted the nursing director at his memory care facility and asked whether she thought it was time to have him evaluated for hospice care. Although his physical strength has more or less returned to where it was before, his cognition has not. That’s the usual way of things, for people with dementia, so I wasn’t surprised—but I did wonder whether it meant Mike qualified for additional support.

That email resulted in a surprisingly quick turn of events. I sent it on Monday; Mike was evaluated for and admitted to hospice before noon on Wednesday. Later that afternoon, I had a conversation with the evaluating nurse and agreed to discontinue two of Mike’s meds, on the hospice doctor’s recommendation. By the end of the week I’d also heard from his newly-assigned hospice nurse, who will visit and evaluate his condition at least once a week; the hospice chaplain; and a social worker.

I have very limited experience with hospice, so I didn’t know exactly what to expect—and this sudden flurry of activity was a little overwhelming for an introvert like me. But it made more sense when I met with the social worker and she explained that, per Medicare guidelines, many things need to happen within five calendar days of someone’s admission to a hospice service. In other words, a bunch of people needed to document that they’d done a bunch of things. Fast.

She also commended me for being proactive and having so much of Mike’s paperwork already done: his DNR, medical power of attorney, advance directive.

“Most people put off doing that stuff for as long as possible,” she said, “which, honestly, does no one any favors.”

I asked her whether I needed any additional documentation, but she shook her head.

“At this point, the only thing I’m missing is the name of the funeral home we’ll be working with. When that time comes,” she said.

She spoke those words as kindly as anyone could be expected to. She wasn’t officious and practical, as though this were just a piece of information she needed to complete a form. She asked whether I would find it helpful to see a list of funeral homes. She waited for my yes before finding that list in her binder and sliding it across the table.

It’s not as if I were surprised by this mention of the fact that Mike is going to die. I’m the one who initiated hospice care; I know what hospice does and the criteria that have to be met before someone is admitted. I also know Mike has an incurable, degenerative disease. I’ve been living with that knowledge for a long time.

And I’ve known, for quite a while, that I needed to contact a funeral home. Even my mom—a champion player of Stick Your Head In The Sand—took care of the funeral arrangements for my dad years before he died from a long illness. When the time came, all we had to do was choose a casket and a 30-minute time slot for his burial at the veterans cemetary. (Yes, even death keeps to a schedule in the military.)

Still, I felt like I’d been punched in the gut. It took me a minute to catch my breath. The social worker waited quietly while I did that.

“The main thing I want to avoid is a hard sell,” I said, when I could speak again. “I don’t want to end up stuck in a room with some guy who’s trying to convince me to buy a fancy casket as a symbol of my love. I don’t have it in me to deal with that.”

“And they will, because it’s a business.” She pointed out two options on the list in front of me, places that deal exclusively with cremation. That’s the option Mike wanted, the most direct and reasonable path to Point Z. She talked me through what I might say when I made the call.

“The other thing I’ll add is this,” she said. “Because this is, ultimately, a business transaction, it’s not something you want to be dealing with at the end of life. So I recommend getting this off your shoulders as soon as you feel like you can.”

Caring for Mike has been my top priority for the past 8 years. I’ve struggled in various ways with his move into memory care, knowing it was necessary while also wondering how, exactly, my role in his life has changed. I’m no longer doing most of the daily, hands-on work, and now there will be even more hands involved in his care. But I know having more people involved can only be a good thing.

And I’ll admit that, for the first time in many years, I don’t feel like I’m expected to make every decision on my own. That’s a huge relief. When the hospice doctor recommended a change in Mike’s meds, I was glad to know I’m not the only one asking questions like Are we seriously still worried about his cholesterol? We’ve also discontinued a medication Mike started when he was first diagnosed with dementia. The focus has shifted toward what will improve his daily life, not his long-term health.

But for me, it feels a little like when you go to beach and the sand shifts underfoot: just holding your ground means making adjustments when another wave comes in. I can try to stay where I am; I can tell myself We’re okay for now. Going on hospice doesn’t mean death is imminent. And that’s true. But it’s also true that, as Mike himself said while we talked through his living will, “We blew past okay a long time ago.”

The next phase of planning simply means doing what I have always done: anything I can to make sure Mike is taken care of. But it also means acknowledging that, more than likely, I’m the one who will be left standing when he’s gone.