Steve was clearly in pain. He was staring at himself in the bathroom mirror and screaming at the top of his lungs. He’d diagnosed himself with yet another bout of diverticulitis and had been self-medicating for days to no avail. He wasn’t getting better. He may have been at his wit’s end, but I was going to be the one to have to rescue him.
I called our gastroenterologist who told me to get him into a cab to go for a CT scan. Meanwhile, Steve is screaming “No hospital! I’m not going into the hospital!” but it was becoming apparent to me that there was no alternative. I didn’t see how a cab ride in heavy traffic to go for a test was going to help things. I had to make an executive decision—after all, I had Steve’s Health Care Proxy and I was the one thinking clearly.
I picked up the phone, called 911 for an ambulance to take us to the hospital where we had “our” doctors. A city ambulance wouldn’t take us there because it was out of their “emergency response zone.” I needed to authorize the significant expense of having a private ambulance service pick us up. Done.
Next. Call the doctors to alert the emergency room that we were coming and that he would be admitted with an attending physician. This would save us time on the receiving end. Done.
Next. Pry Steve away from his sink and get him dressed. This was no easy task. He was still insisting he wasn’t going to any hospital. I had to take charge now and get him to go. I told him he didn’t have a choice; I had no idea how to stop the pain; I wasn’t a doctor and neither was he. It was interesting that once the ambulance arrived, he was remarkably cooperative—even charming. Phew!
Next stop…the emergency room. They had gathered all our information in the ambulance, so we were whisked into a cubby and a morphine drip started immediately upon our arrival. By this time, the doctors I had notified were checking in. He certainly needed a CT scan to see what was causing the pain. Then he’d need emergency surgery. So at last, it was time to face the real consequences of being the one who had to make the hard decisions—some might be life or death decisions.
The surgeon handed me one form after another; it felt like I was signing my life away. Yes, I understood the possible dangers of the anesthesia. Yes, I understood there are always risks involved in surgery. While the weight of this responsibility was getting heavier and heavier, we’re kept waiting for hours before the scan could be done. Steve was given more and more morphine and without relief. He’s not screaming any more and the drug has calmed him down to the point where he’s no longer protesting. Finally Dr. V, the surgeon who’s been called in, got really fed up with the ER staff. How long did a clearly critical patient have to wait before he was taken in for an “emergency” scan. He took matters into his own hands. I swear I could have kissed him. He pulled the gurney out of the cubby where we’d been waiting for hours and pushed it through the emergency room, to the doors down the long corridor leading to the scanners and moved Steve up to the front of the line.
He stood and watched as the scans started to show up on the technician’s monitor and came out to tell me Steve had peritonitis and required immediate surgery that would take about three hours. I was left to wait. And wait. And wait. Three hours became six and I was really starting to get worried. It was three in the morning when Dr. V came out of surgery to speak to me.
Steve had come through what ended up being difficult surgery well, but would be in surgical intensive care for a while. I would not be able to stay with him. He’d need to be kept in an induced coma so that his body didn’t have to do anything but heal. But…there was no guarantee that all would go well. There was still the risk of infection and high fever. I needed to sign many more permission forms.
I had no doubts that whatever I put my name to was in his best interest. But intubating him would be dangerous and administering the drugs to fend off infection and ease the pain needed my okay. Steve would sleep through all of this, but I was left to worry about all the “What if’s?” Was I right to rush him to the hospital? I was. There was no real choice about signing for the morphine in the emergency room to lessen the pain, right? And I had to sign acknowledging I was aware of the dangers inherent in surgery and anesthesia; again—what was the alternative?
For the days that followed, I’d arrive at the hospital at 10:00 am. and leave at 10:00 p.m. He didn’t move. The sounds from the monitors and leg compression device drove me nuts. As they pulsed and whooshed, my self-doubt came in paced waves. What if he woke up with brain damage? What if infection did, in fact, set in? We’d come to the hospital Tuesday late afternoon and late Friday afternoon, the doctors came in to tell me to go home and get a good night’s sleep; to rest up for what promised to be a difficult weekend. If Steve survived the next couple of days, he’d most likely recover. This less than “iffy” prognosis brought with it a monster bout of anxiety. Had I done the right thing? Of course I had. Was I consumed with guilt because of an unclear outcome? Of course I was.
That’s what happens. You do what you have to do, make the tough choices and breathe through the fear, hoping it’ll all be okay in the end. There were lots of little decisions I had to make while Steve was out of it. I felt every one I made had been a clear-cut choice, but that didn’t keep me from questioning my judgment over and over. And I had so much time to sit and second guess myself.
I felt every one I made had been a clear-cut choice, but that didn’t keep me from questioning my judgment over and over.
Then, there was the fear of how Steve was going to react to all the choices I’d made on his behalf. How would he rate me? His state of mind and wellbeing were of paramount concern to me, but would he believe that? When he woke would I be faced with an ill-tempered patient who just tried to criticize and second-guess me? I sat with all of this going round and round in my head for six days. I’d had my best friend find a knitting store near the hospital so that I could busy myself with a project to act as a distraction. There was no TV in this ICU suite. I couldn’t focus on reading. Knitting would have to get me through, and it did.
Then there was Steve’s 88-year-old mother—still very much alive at this point in time. She had a great need to be at her son’s side, just to have eyes on him, despite the fact that he was unconscious. Despite my offer to send a car service for her, she’d taken a commuter bus from Brooklyn to Manhattan and back again, every day to just sit there and watch him. This four-hour round-trip on public transportation was going to wear this octogenarian out. And then I had to deal with all of her doubts about the choices I’d made and all of her fears about what was going to be next. This aggravated me, to say the least, and I finally told her to stay in Brooklyn and take a break for a day or two. I’d call her every hour to fill her in but I wouldn’t have to keep her calm on site. And, most irritating of all, she was very free with her criticism of my knitting!
Well, Steve survived the weekend and I was told they’d be waking him up over the next day or so. My fears were unfounded and his gratitude for my choosing the right course of action was profound. They moved him to a private room and I was able to stay with him from this point on. There was much information to digest after he was alert and we felt like a team again. He never once said, “You should have…”
For one very intense week, I had been in charge of Steve’s life. I had weighed each decision I’d made on his behalf very carefully, yet I sat and worried. Could I have made mistakes? I was open to that possibility, but really didn’t think I had. There was just so much time to sit and ponder what I had done and what the consequences of my actions might be. So…what if I had made mistakes? Would I be able to forgive myself? After a serious review of my actions, I was pretty sure I’d made the right choices—albeit under pressure—and that if something had gone wrong as a result of my actions, I would be able to live with it and forgive myself.
When Steve was discharged, we were given lengthy instructions on how to care for him at home. A Visiting Nurse was sent to administer care to his wound for a few days, until she saw that I could handle it myself. I wasn’t the least bit squeamish and she watched me do dressing changes several times before she felt her work was done and that Steve felt secure in my care. I passed with flying colors.
Postscript: One of my dear friends became a grandmother while Steve was unconscious, and the baby sweater I had been knitting found a loving home.
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.