The Language of Hospice

In the past week and a half, I’ve had a crash course in Hospice terminology and how to use it to get the care you—or, in this case, your mother—needs. Because they do not provide you with translations…you are in a foreign country where they all know what’s being said and you have no idea.

“She needs a safe plan,” they said a few weeks ago. “We don’t think she is safe. She can’t walk the halls. She needs someone there full time.” “Really,” I thought, “She seems strong enough to me—and she wants out of the hospital.” Translation—she’s been put on morphine, and when that hits your system, your brain is gone, wandering around making shapes from toast. But it takes a few days, so, when I call her, she sounds strong and mad that people are in her house, talking fast around her, and not asking her opinion on anything. “She’s deaf,” I keep telling them, “Not addled. And she wants to walk the halls.”

“She needs to spend down her money so she can get Medicaid,” they tell me. “About a thousand dollars.” “Okay,” I agree. “But how much can she have? And how much does she have? It’s her money, earned, really, years ago from making pincurls.” “Maybe she can buy a new coat,” one suggests. Translation—she can have 1,500 dollars for “funeral expenses” and less than a thousand in her bank account or she is going to have to pay market rates for 24 hour care, which is pretty expensive. She had over 6,000—who knew? It went fast, believe me.

“She needs a safe plan—and you have to find the 24 hour care giver, because you’ll be working with her most closely. Here’s the number for Senior and Disabled Services.” Translation—when you call SDS, they will “search the extensive on-line registry” for you, turn up five people, and hand you a sheet with five people’s telephone numbers on it and a note asking that you informed THEM if any of the numbers are disconnected. Yeah. I called the five people; it took about ten minutes. Two numbers were disconnected, one was no longer doing in home care, one did not answer, and one had a job. At this point, though, I had the language down.

***
“My mother is going to run out of money at nine AM Thursday morning,” I inform the case manager at SDS. “She needs safe care.”
“Did you try our registry?” she asks, hopefully.
“I did,” I give her the rundown, and, against my better judgment, the names of the disconnected numbers. She sighs softly.
“Could YOU fill in some of those times?” she asks, again hopefully.
“No,” I say. “I am not trained to do this. It’s not safe.”
“Well, let me look around,” she says. “We can talk tomorrow.”
***
The next day, we talk.
“I can pay for an overnight caregiver and five hours of day care,” she offers.
“I can pay for the rest of the day care,” I offer, thinking we may have a solution.
“Oh no,” she says, “We can’t mix the money like that.”
“Well, she’s out of money in 12 hours,” I reply. “What do you suggest?”
“Is there someone from your church who might be able to help?” She is ever hopeful.
“No,” I am not helpful.
“Maybe,” she tries, “Hospice volunteers can come by for the extra time that you cannot be there.”
“Look,” I say. “That is not a safe plan. I am not comfortable being in charge of her medications and if something goes wrong, I am not trained to do anything. I do not believe having volunteers come in is a viable solution.”
“You can always call hospice or 911,” she says.
“I am not comfortable with this plan.” I stand by my original statement.
“Let me call Hospice,” she says. “I’ll talk with you tomorrow.”
***
Hospice nixes The Plan. I knew they would. At 5 o’clock on Thursday afternoon, nine hours after my mother officially has run out of money and I have paid for the next few days from the Travel Fund, she calls again.
“I have an extension,” she says. “ I can cover a 12 hour overnight caregiver from AtHome (a cheaper agency—and you get what you pay for here) and 12 hours from New Horizons (a better organization, which has already been there for a week) for the month of May.”

Victory. I agree to keep looking for a 24 hour caregiver—but, really, they do not exist. I go for a long walk, breathe deeply, move further into the language of Hospice.