Despite my well-intended delusions of gallantry, staying awake for two nights in a row just made me a useless, hot mess. And taking a nip or two from the bottle of bourbon in the kitchen during these sleepless marathons made me even more useless. So tonight I eschewed the alcohol, bought a pack of cigarettes, and let Dad propose taking half-night shifts. For four hours, I slept well, even with strange dreams of hiding myself and a bunch of children in secret compartments under furniture in order to escape some kind of unearthly menace in female form with an army of fugitive-sniffing cats. That’s a new one. I should be keeping a dream log as well as a death log.
When I left the warm bed to take my 2:00 a.m. shift, I found Dad sleeping on the couch. Just dozing, he said. Just dozing under a comfy quilt. Let’s face it, we’re not RNs or home health aides. We’re tired family members who crave our beds, with or without apocalyptic nightmares.
Mom asked my sister-in-law what happened to the local hospice facility where my grandmother had died twenty years ago. I think she had envisioned herself staying there when the time came and not in the middle of her living room being cared for, largely, by tired family members. Apparently, our local hospice facility had been shut down because it wasn’t “feasible,” its staff of PAs, RNs, and aides turned into traveling pill peddlers instead. It’s a sinisterly brilliant way to cut corners. The professional caregivers get to keep their jobs, and the operating costs disappear. Now we have a solution that’s “feasible” because the dying can still receive their care twenty-four-seven, but in the comfort of their own homes. Oh joy.
Here’s where the plan gets more brilliant: our loved-ones definitely can receive care twenty-four-seven. Whenever we make the phone call to the emergency number on the whiteboard magnetted to our refrigerators, our questions and concerns are relayed to a nurse on call, who will call us back and answer our questions. Sometimes, if we sound sad enough, she’ll even offer to come out to the house for an hour or two—even more if we want. If we don’t call, however, we get a daily visit from a nurse (on weekdays), and a daily visit from an aide who will do the yucky stuff like bathe and change catheter bags. In a rural area like this one, where people spend their wholes lives NOT asking questions, removing the whole hospice facility from the equation is most certainly a feasible plan.
I decided that I prefer the 2:00 a.m. to whenever-Dad-wakes-up-again shift because it’s a perfect time to call that hotline and ask questions without Dad knowing I’m calling the hotline and asking questions. The very first hospice nurse I met this week stayed at our house for six hours so Dad and I could go out to dinner for his birthday. We were only gone for three, but she stuck around long after and helped Mom and counseled me. Dad, being Dad, just wanted her to leave. Me, being me, wanted the help and guidance. Why not? If a hospice is going to close down its facility and leave all the dirty work to us, we should accept as much of that help as it will provide. We should not accept the death-on-a-budget excuse.
The nurses know this. The whiteboard on the fridge says “for emergencies call,” leaving it up the caller to determine the scope of an emergency. Luckily, I was counseled by a hospice nurse before I had even seen this semantic deterrent. Call any time, she said. No question is a stupid question, she said. That’s what we’re here for, she said. So I do, and I will, just not when Dad knows I’m doing it.
It isn’t that Dad doesn’t care. He cares a whole lot. His love is infinite. This morning, the RN assigned to our case watched him interact with her and said, “They clearly love each other. It’s adorable.” It was adorable, five weeks ago, now it’s very heartbreaking. The man needs two shoulder operations. He has a bad back. He carries around his own, permanent, catheter bag. And he just lost his brother. This is too much for him. He isn’t healthy enough, physically, mentally, or emotionally to be caring for a wife of fifty-five years round-the-clock. He needs a place where he can go that’s away from his grief, like his home. Oh wait, his home is now a makeshift hospice.
If I can do anything around here besides be in the way, and I often feel like I’m in the way, I can call in the professionals to help Mom instead of leaving Dad to do all the guesswork. I’m confused, and I’m younger, healthier, and more alert. I can’t imagine how he manages to do anything, let alone almost everything. I’m gonna keep calling that number because it helps and because I refuse the let “feasibility” and bottom-line win here.