After multiple back surgeries and as her arthritis and chronic pain worsened, my wife was able to do less and less, but we still had a life. We went out, saw friends, watched old movies, took pleasure in each other’s company.
But all that ended right after Thanksgiving when a perfect storm of a broken bone in my wife’s left foot, a bad flare-up of her inflammatory arthritis, and a precipitous weight loss due, we think, to some very strong anti-arthritis medicine, completely took over our lives.
Holidays have passed —– Christmas, New Year’s Eve, Martin Luther King Day, Valentine’s — with barely a nod from us. Former news junkies, we now let the news of the day, from Charlie Hebdo to Bill O’Reilly, pass by with barely a flicker of recognition.
The truth is that when you see the person you love, with whom you’ve spent most of your adult life, physically falling apart in front of your eyes, almost everything that would normally be important quickly fades to background noise or less, much less.
Back 30 years ago, when we were newly married, I could barely keep up with her long-legged strides. But since November she has gone from walking with a cane to a walker to getting around mostly by wheelchair.
It was awful to watch as she began to have greater and greater difficulty sitting. Even pulling herself up from the bed was sometimes a herculean task; harder still was just getting her comfortable in bed.
Now that she is almost literally skin and bones, it can take hours to rearrange her pillows just so. But the worst thing was the night my wife looked up at me and confessed that sometimes she wished she could go to sleep and never wake up because her pain was so out of control.
Here I wish I could say I have always been the loving and patient husband, but sometimes, especially late at night, I have come close to completely losing it. There’s exhaustion, mind-numbing boredom, a touch of despair, and the bitterness at what we’ve endured in what I call Hospitallandia.
During our forced march through that netherworld, we have felt totally lost among fun-house mirrors with uncommunicative doctors; doctors who harangued us; “drive-by” doctors who, if you paused for two seconds, were so quickly out your door they should have been Olympic sprinters; and, of course, the mostly caring but terribly overworked and undercompensated nurses and techs.
My wife was endlessly being “stabilized” so she could go to the next step. But in reality, she was never allowed to stay long enough and improve enough to actually benefit from the next step.
Between December and the end of February, she endured five ER visits, three stays in a regular hospital, one two-week stay in a rehabilitation hospital, one 10-day sojourn at home, a one-week stay in a skilled nursing facility, and a two-week stay at a place that billed itself as a long-term acute-care facility but was anything but.
The bottom line is that despite so much medical care, my wife has never gotten well enough to have a real chance at staying out of the emergency room. It’s as if we’re trapped in an endless loop —– ER, hospital, rehab, home, ER.
Before this I truly believed the purpose of a hospital was to improve a patient’s health. Silly me. I suppose this system works for some, but it has totally failed my wife.
Even so, we’ve both been blessed. During this calamitous time, we’ve received so much help —– a neighbor building a wheelchair ramp, friends making meals, grand-nieces and nephews sending us their get-well-soon drawings — the list goes on and on. We’ll never be able to repay all these kindnesses.
And I never want to forget that parallel universe I discovered, of families huddled in hospital corridors and waiting rooms, waiting for some news, or, having heard the news, staring dumbstruck at the edges of their shoes, not wanting to believe.
Fort Worth writer Ken Wheatcroft-Pardue can be reached at kwheatcroft.blogspot.com or at firstname.lastname@example.org.