When our niece Ashley went home for Christmas, she left us well enough supplied with soups for our suppers and fruit salad and baked goods for our breakfasts that we could make it through those two weeks without me having to cook. She also told me, “Don’t worry about vacuuming or cleaning. I’ll catch up on those when I get back.” Even so, without her help, my work load increased to the point where it soon consumed what little energy I had left. I had to do ROMs by myself, for example, and I had to add things like laundry and dishes back to my to-do list.
More significantly, Priscilla’s caregiving needs had expanded considerably over the previous three months. We just hadn’t realized it because we were getting so much help with other things. She now needed to have her throat suctioned throughout the day to prevent choking. Without Ashley to manage the oxygen cord, I’d have to disconnect it to get Priscilla from one room to another. I could move her the length of the house in about 90 seconds and reconnect her, but by then she’d have nearly passed out and it took time and effort to get her stabilized again.
I’d already been teetering on the brink of exhaustion, and the extra work pushed me over the edge. On December 26, Priscilla had to call me repeatedly for suction in the night. I barely got any sleep and that finished me off. I had no strength left to care for her at home. We were no longer a patient and a caregiver, we were two patients, one with ALS and one with exhaustion. “I’m so sorry,” I told her through tears, “I’m so sorry.” “Don’t apologize,” she reassured me. “I’m amazed you lasted as long as you did.”
We made one last effort to get my strength back. A neighbor kindly came and helped with housework while I rested. But as soon as I tried to resume something like a regular schedule, Priscilla saw it was draining me completely and told me, “You don’t look good at all!” I had to admit that I didn’t feel good at all. I lay down next to her in the bed and said, “We need to get you into the hands of people who can take care of you as soon as possible.” That meant residential hospice.
It was the middle of the week between Christmas and New Year’s. We didn’t know whether the people we needed to talk to were even working. But we started with our home care nurse. She was working that day, and she had an hour and a half to give us starting at 1:30. We wanted our neighbor to be sit in on this conversation, and she was free to come because it was winter break at the school where her husband worked, and he could watch their kids. We wanted another friend, our pastor’s wife, to be part of the conference, too, and she was already scheduled to come and sit with Priscilla that afternoon.
Just as these three women were walking in the door at 1:30, the phone rang. It was our insurance case manager. She had no idea that a meeting was just beginning that vitally required her participation, since insurance pre-approval was required for admission to hospice. She began, “I hadn’t talked to you guys for a while, so I’m just calling to see how you’re doing.” I explained how timely her phone call was, and she said, “Priscilla needs pre-approval for hospice. I’ll get right on it!”
We decided to try to get Priscilla admitted as a resident of the same hospice whose home program she’d been in at the start of the year. Getting someone into hospice within a short time frame is unusual. To set up the home program, we’d had to meet first with a social worker, then we’d had a separate meeting with an intake nurse, and so forth. It was a good thing we’d started the process late in 2014 in order to get her into the program by early 2015. But because Priscilla was already in their system, now they simply re-activated her file, transferred her from home care to residential care—they had a room available for her—and that part was settled.
She still needed two more things. The first was the insurance pre-approval. Our case manager was able to arrange for that within a couple of hours. We also needed a doctor’s certificate. The person we were working with at the hospice told me, “I’ve faxed it over to them to sign, and now we’re just waiting.” I asked, “Would it be okay if I phoned the doctor’s office?” “Sure,” she said, “see what you can do.”
Our doctor was in a large and busy practice, so that when you called, you got the “phone tree.” (“Please listen to our options carefully . . . if you know your party’s extension, you may dial it at any time,” etc.) I listened to all the options, but I didn’t like any of them, so I hung up in despair. But then I said, “I’ve got to do something.” So I called back. A receptionist picked up.
I explained about the doctor’s certificate. She went to look for it and came back to the phone. “I have here it in my hands,” she said, and then explained, “The doctor is working today, but he’s in his office with the door closed. I’m not supposed to interrupt him, but I can slip it under the door and hope he signs it.” I explained how desperate our situation was. She listened very sympathetically and then said, “I’ll knock on his door and ask him to sign it.” She returned a couple of minutes later. “He’s signed it,” she said, “and we’ve faxed it back to the hospice.” Then she added, “We want you to know that our thoughts and prayers are with you.”
It was about 4:00 by this point. The hospice told me, “She’s in, but we don’t think you’d like what we’d be able to do for her if she came today. It’s so late that we’d have to bring her over by ambulance, and the room wouldn’t be ready. But we can come get her tomorrow morning.”
So we had to make it through one more night. If we’d had any doubt—which we didn’t—that moving Priscilla into residential hospice was what we needed to do, that night would have dispelled it. She had to have her throat suctioned repeatedly and I got practically no sleep once again. She’d reached the point where she needed round-the-clock care, and no one individual could provide that.
At 11:00 a.m. the next day, which was New Year’s Eve, a hospice representative came to do some final paperwork, and at noon an “ambu-cab” pulled up to our house. I drove Priscilla down the ramp and over to its lift, the driver raised her up, we rolled her in, and she was strapped down for a safe ride.
We were able to do this because her wheelchair had “tie-downs.” These are large, flat metal rings that are attached to the four corners of a wheelchair to allow for this kind of transportation. A year and a half earlier, when the mobility specialist was fitting Priscilla out for the wheelchair and going over the different features she might need, he asked, “Do you need tie-downs?” “No,” we replied, “she plans to use the chair only in the house and maybe the neighborhood. She’s not going to ride anywhere in it. We don’t need tie-downs.” He said, “I’m going to give them to you anyway.” If he hadn’t, she would have had to go by ambulance, and we would have had to figure out some other way to get the chair over to her. Yet another in the stream of endless mercies.