If We’re Alone, We Need to Ask the Hard Questions–and Figure Out the Answers

We’re walking a tightrope without a net

We have a problem. Judging by the record-breaking reaction to my last post about my day in the ER and its aftermath, an awful lot of people live in fear of serious illness or injury, not just for the obvious reasons (pain, disability, death) but because we don’t know how we’ll manage it alone.

First, thank you all for your caring and support. Thanks for sharing your stories. I really appreciate it. And welcome to the many new subscribers who have joined the discussion.

As soon as I know what’s wrong with me, I will let you know. I spent three more hours at the hospital today talking to my doctor and having tests, and I still don’t know, but she listened and cared, and that made me feel better.

It has been a long ten days. I’m still living with the pain and low fever that sent me to the ER. Everything on my calendar is canceled. One person brought Communion and cookies on Saturday. Otherwise, I have been alone. I’m a limp noodle camping on my sofa, alternating between screens and sleeping. It’s getting old.

A week and a half ago, I drafted a different post about why my hammertoe surgery did not happen. I had gotten a last-minute ride to the clinic in Lincoln City from my neighbor, Robb. I was on the table. I said I was nervous. I told the doc my toe wasn’t hurting anymore. I admitted I had hoped he would call in sick, not that I wanted him to be sick, but . . .

Do you still want to do it? He asked. Sigh. Yes.

Then he asked if I was okay with taking hydrocodone for pain afterward. Say what? No, I said. I’m allergic. It’s on my chart. Plus, I have to be able to work. I’m playing the piano at church tomorrow and Sunday.

Big pause. He looked concerned. He said, “I usually recommend you keep your foot up and do nothing but walk to the bathroom for the first five days. If you’re sitting at the piano with your leg down, it’s going to swell and hurt and–can you get anyone to sub for you?”

“They’re all out of town,” I said. As reality set in, I remembered I cancelled last time because I had to play for a wedding at church. And now—Is all this church music that important? Which is more important, my toe or making sure St. A. has a piano player?

I think we should cancel, the doc said.

Picture an avalanche falling with a great crash. I dragged Robb there. I had been planning for weeks how I would get by while not being able to walk as well as usual–not realizing I wouldn’t be walking at all AND I would be on strong pain medication. And alone.

The last time I took hydrocodone, I was barely conscious for two weeks. My mother took care of everything.

The nurse came in with the syringe for the numbing shot. “I think we’re canceling,” said the doc.

I felt like an idiot. But the next day, the day before the chest pain hit, I was overjoyed to have my life back. It was not all my fault. I didn’t know what I was getting into. As Robb said, it was a good “dress rehearsal.”

The whole toe thing was relatively minor. But I learned a few things we can apply to any medical situation for which we are able to plan ahead.

• Start asking for a ride early and keep at it. Don’t give up like I did. I was all set to drive myself when Robb volunteered.

• Communicate better. I told the doctor and his nurse multiple times that I live alone. It never seemed to register, and that’s on them. But I did not tell them about my weekend church gig and other plans on my schedule. When the doc said I could drive myself home, I assumed I was free to live my life as usual, except for limping around with a boot on my foot. He probably did not realize I lived an hour away. Communication may be humans’ biggest problem.

• Insist on knowing in advance exactly what it will be like afterward. Will you be able to go about your usual life, or do you need to cancel everything? Will you be able to drive? What kind of pain meds might you need? How might those meds clash with what you’re already taking? Can you shower or bathe? How long will it take to recover?

Armed with answers, you can recruit friends, set up meal deliveries, confer with your other doctors, gather some books and movies, and clear the calendar to do it right.

As for sudden, unexpected events, like whatever has got me living on the couch and wondering if I will ever feel better, we need to have a plan and a team in place. Not someday but now. My priority for the next few months will be to FIGURE IT OUT, all the way from who to call for help to what if I die. I don’t want to be sitting here in pain again thinking, I’m all alone. I’m not ready, and I don’t know what to do.

I don’t want to drive myself to and from the ER when I know I shouldn’t. I don’t want to be leaning on my kitchen sink wishing I had something decent to eat because I don’t have the strength to shop or cook. I don’t want to be lying on the couch wishing someone would bring me a glass of water. I need a plan. We all do.

If we live alone, it always comes down to this: We’re doing a highwire act without a net. Most of the people I encounter, particularly in the medical field, don’t understand that no one is waiting to catch us when we inevitably fall.

We need to get some needles and thread and start making our own damned net.

We have a lot to discuss. Upcoming posts will include: building a team, making sure we have something to eat, having someone to advocate for us, getting the paperwork in order, and more. Feel free to add to the list.

As it turned out, St. Anthony’s did have a Mass last week without music, and it was fine. I watched it online.

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How did I end up alone? My first marriage ended in divorce. My second husband died of Alzheimer’s after we had moved to the Oregon coast, far from family. I never had any kids, only dogs and cats. Now I live by myself in a big house in the woods. You can read our story in my memoir, No Way Out of This: Loving a Partner with Alzheimer’s, available at your favorite bookseller.