When the phone rang on Saturday morning at 6, I knew it couldn’t be good news. Good news never arrives that early. It was the center where my husband receives his kidney dialysis calling to say that due to a water main break, they couldn’t dialyze him that day.
Before my mental wheels had a chance to start spinning, I was reassured that his appointment had been rebooked at another center for Sunday ― a day later ― and no real harm would come from the delay. Our weekend plans would be turned upside down, but he would get the life-saving treatment that he needed. Not ideal, but nowhere near the crisis it could have been.
We are relative newbies to the world of dialysis. My husband has been getting treatments only since early June when he was hospitalized for about a month before being discharged home to my care. I was scared to bring him home ― a kind of caregivers’ Stockholm Syndrome where you come to rely and identify with those who hold you captive and believe you need them (except in my case, where I swear I really really do need them).
“You’ll be fine,” the hospital’s medical education staff assured me when they trained me how to test his blood sugar, inject insulin, change various lines, clean ports, sanitize equipment, keep track of medications, weight and fluid intake, relearn how to cook according to his new dietary restrictions, check for infections and a few million other things that I never thought I would be doing. I learned. And I do it. But caregiving is a job that regularly overwhelms me and I’m the first to admit that I’m not great at it. I offer as evidence the stack of medical bills on the counter that remain unopened because I haven’t been able to face them yet.
But just about when I began to feel some control over the medical parts of my new caregiving role, I began getting calls and letters asking about my “plan for sharps disposal” and whether I’ve constructed an earthquake emergency kit for someone in renal failure. Say what?
No, I have not devised a plan for sharps disposal nor do I have an earthquake emergency kit for my husband. I collect his used needles, wrap them in a paper towel and shove them into a large plastic ziplock bag that eventually goes into a bigger bag in the trash. I’m sure I’m breaking multiple laws here. And the earthquake kit? I’m thinking that if they mean something beyond shouting for everyone to stand in a doorway, then no, I haven’t done that either.
I am pretty clear on the reason why: To come up with long-term plans for these things would be an acceptance that our current existence is permanent, a what-you-see-is-what-you-get-forevermore kind of thing. While nobody in a white coat has mentioned the R word ― recovery ― to me lately, I do see improvement. I understand that when he feels better, it’s because of the dialysis and should that stop he wouldn’t feel good anymore. But I look for signs every day and I regard our situation as being in some kind of temporary ― albeit unpleasant ― holding pattern, a place that we will get past and that will one day just be a distant memory. And yes, I need to believe that.
The 6 a.m. phone call was a warning blast, an air raid drill for practice only. Had this been a real emergency ― in the form of an earthquake or an event that paralyzes my city ― I don’t know what I would have done. Dialysis requires pure water and electrical power. It requires trained personnel for the patient’s safety, people who know what to do and what to do if something goes wrong. I can provide nothing close to any of that.
I believe in preparation and am working on doing what our center says to do. But I also believe that worrying is our feeble attempt to control the uncertainty of the future. And that’s the core lesson of Caregiving 2.0 that I’m struggling with. Powerlessness; it’s a bitch.
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