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 kwheatcroftpardue@yahoo.com.
I would like to confirm your experiences with your hospitalization and offer my deepest sympathies. Have you written to the hospitalization to complain? Let me briefly tell you I have every time I receive questionable service…not that my letters have caused them to improve….but at least I am alerting them to “less than quality of care” hospitals in general to review their ER department. On December 17th I fainted in my family room sustaining a head wound requiring stitches. I at least had the presence of mind to call EMT and my husband who was away in DC on business. He immediately booked a flight home. The EMT’s had to break into my house to ferry me to Harris Hospital but this is where my story begins. Arriving home my husband found me semi-conscious, with stitches In my forehead, learning I had been sent home in a taxi to an empty house and discharge summary instructions. I am 67 y.o. He saw no tests were run just stitches. My husband returned me to hospital the next day as I have had concussions in the past to demand further testing. The second ER trip revealed no concussion but showed some fluid in my left lung and possible pneumonia and admission was advised. Due to poor inpatient experiences we elected to go home with recommendations I see my family doctor which we scheduled. Nevertheless when I didn’t improve, my husband insisted we return to the ER on the 20th mainly because my family doctor appt. was 5 days away. It was on this 3rd visit that the ER doctor insisted my left lung looked like it was collapsed and I need immediate care. Therefore, I was admitted to undergo a lung puncture to determine I had bacterial pneumonia and surgery to drain my lung and to re-inflate it. From that point on, I received excellent care from the nurses and physicians, discharged on 12/31 and am now home. What are the lessons here. The patient needs an advocate to monitor your care when you are the patient. Ask first but then demand follow up care. Demand all staff from the ER to inpatient to rise above the minimum standards of care. If you continue to be ignored write to the Joint Commission which oversees hospitals nationally. Tell them your experiences. Request they pull their chart before rating the hospital in question. Otherwise these hospitals and other health care facilities will feel no pressure to improve patient care.
Linda, thanks for your advice. Believe me, I plan on complaining loud and long. And I’m very sorry for what they did to you. It was just inexcusable. Congratulations to now being on the mend. Good luck and thanks again.
Thank you for your kind words. I also hope your wife is doing better. I am feeling much better and have even gained weight….I left hospital, Harris downtown, weighing 94 lbs….I am now a whopping 105!! And I did write about my experiences with the ER department only to get what I expected a review of my concerns by nursing staff who continuously asked me why I kept returning to their hospital after in my letter I explained Harris is where my local doctor can easily access my records for follow up care. My next move is to call legal department and write that letter to Joint commission. I am not litigious. I simply want improvement of care by ER. Hospitals are placing themselves in a liability situation regardless of tort reform. Had I returned home and died before my husband came home from DC, this hospital would have had a lot of explaining to do. Keep fighting for better care for your wife and others.
With all due respect, the analogies offered here are a compendium of many unavoidable processes, i.e. aging, possible adverse genetic influences, not seeking timely outpatient care in a prudent manner, rather than “poor medical care”. The hospital ER is an extremely busy place open to every strata of society which must be dealt with in an even handed manner. If you have pneumonia you will have symptoms for days or weeks before. You seem annoyed that EMS “broke down your door” and got you to the hospital rather than thanking them for possibly saving your life. As for your concussion and discharge, I guess the public missed the memo about govt and insurance restrictions on health care providers including heavy handed declining reimbursements requiring more rapid discharge and discouraging admissions. The public in general are a group of petulant spoiled brats who don’t take care of themselves and then blame everyone else for their problems. What a crock to blame hard working underappreciated physicians, policemen, military personnel,clergy etc for your problems. It just doesn’t sell anymore. Instead of whining, look around at the people who are trying to help you and be thankful. AS for complaining to try to get the people who healed you on an emergency basis during a holiday in trouble–you should be ashamed.
With all due respect, the analogies offered here are a compendium of many unavoidable and avoidable processes, i.e. aging, possible adverse genetic influences, not seeking timely outpatient care in a prudent manner, rather than “poor medical care”. The hospital ER is an extremely busy place open to every strata of society which must be dealt with in an even handed manner. If you have pneumonia you will have symptoms for days or weeks before. You seem annoyed that EMS “broke down your door” and got you to the hospital rather than thanking them for possibly saving your life. As for your concussion and discharge, I guess the public missed the memo about govt and insurance restrictions on health care providers including heavy handed declining reimbursements requiring more rapid discharge and discouraging admissions. The public in general are a group of petulant spoiled brats who don’t take care of themselves and then blame everyone else for their problems. What a crock to blame hard working underappreciated physicians, policemen, military personnel,clergy etc for your problems. It just doesn’t sell anymore. Instead of whining, look around at the people who are trying to help you and be thankful. AS for complaining to try to get the people who healed you on an emergency basis during a holiday in trouble–you should be ashamed.
Weekly Reader, well, you’re not exactly full of the milk of human kindness, are you? I guess your adherence to an ideology has perverted your common sense and decency or maybe you’re just too young and haven’t had enough experience in life. Generally, if you’re older. you stop seeing things in such a black and white way.
Neither Linda nor myself said that all doctors and other medical personnel are bad, but mistakes do happen and people have the obligation to complain so that things are improved. I appreciate very much most of the doctors, nurses, and techs who have cared for my wife these past months, but that doesn’t mean I can’t complain about those who are not doing their jobs.
Whew! I hesitated to comment here because as many of us have experienced the deterioration and ultimate passing of a once vibrant and beloved family member—we really do fell your sense of deep grief and bewilderment. Helplessness,also. Having said that however one of the milestones of emotional recovery is to get over the temporary insanity of anger at the medical establishment and hospitals. I read the article and I have to agree with Weekly that there is criticism without balance of the medical system here. In the 8th paragraph at least three ways the physicians demeanor was not to your liking are described–one sentence also describes the belief that hospitals should heal everyone. Seriously? No one should ever be ill for long or die? ( I wish) I see no mention of specific mistakes made by the hospitals or doctors which are worthy of “complaint” or any way any of this can be resolved in your world view, which is biased against the medical profession. I realize that doctor and hospital bashing is in fashion now, what to what ultimate end? I remember reading a superficial news report in a major large city newspaper which led with a headline that a wife “saved” her husband by getting him to a hospital oriented towards advanced stroke treatment within 30 minutes. In the WHOLE article there was NO mention of the efforts, intellect, planning or technology by the doctors and hospital to enable the husband to be saved.NONE. Our society and media have become so narcissistic that we believe that we are endlessly entitled to these advances without appropriate acknowledgement o,r in an old fashioned notion,— thanks.
Kevin, is it necessary to stalk people on social media if they do not agree with you?