Greg's perspective

Words of encouragement
15 Feb. 2012, presented to Family Medicine Residency Program, UCSD School of Medicine
David mentioned encouragement. But before that important part of the story, a little bit more to follow up on Dave’s theme of Everything Changed, because when a stroke strikes, the epicenter is certainly the person who suffers the stroke, but the stroke changes everything for everyone involved — family, spouse, friends, and coworkers.

March 7, 2008. Suddenly there was light. I looked at the clock. It was 5 a.m., the time we usually got up to head off to work. Then I saw David on the floor by the light switch, struggling to move and trying to speak, but no words were coming out. And the dogs dancing around him. And then an ambulance. And a rush to the ER at Palomar Medical Center in Escondido. And then 12 long hours in the ER, with David on a gurney, waiting for a room and bed, because the hospital was full. In an instant, everything changed:
  • David lost his job, ease of movement, the freedom of being able to drive, his ability to speak, and as it turned out, a lot of our friends, who, as he put it, started drifting away. 
  • I had to quit my job as a technical writer to become a full-time caregiver and chauffeur, and a full-time form-filler-outer, and a full-time case manager dealing with an HR department, health insurance company, long-term disability company, and Social Security. 
Everything changed. And boy, did I almost lose it. Over and over again on a daily basis. Waves of conflicting emotions swept me along: fear, anger, resentment at how my life had been uprooted. I’m not proud of the last, but all caregivers feel it at some point. I was exhausted by it all. I felt guilt whenever I even just thought about doing something for myself.

The rest of the next couple of weeks are a chaotic blur, filled with fear, anguish, anxiety, turmoil. And doctors. Lots and lots of doctors. Dave and I fully realize that the ER and ICU environments are inherently stressful for everyone: doctors and patients alike. But some doctors seem to handle that better than others. Some of the doctors we encountered made a bad situation better, some did not.

I want to share a few of my experiences in that regard.

Thanks to the miracle of Netflix and Internet streaming, Dave and I recently started watching Grey’s Anatomy for the first time. As a result, I can’t help but name the first doctor I dealt with, Dr. McGloomy. He was the hospitalist assigned to the ER and unrelentingly negative. “This was a devastating event,” he told me. “Major damage was done to Dave’s brain.” “It was regrettable we couldn’t get a clear answer out of Dave about when the stroke started, because they could have given Dave some treatment to minimize the damage.” If only. At this point, I knew something terrible had happened. I didn’t need a doctor to keep telling me that. I could see it with my own eyes, looking down at the person I love most in the world and with whom I have lived for the last 35 years, lying there paralyzed and mute. But not a word about rehab and the hope it would bring to us both. Every time I drove home from the hospital to take care of the dogs those first 2-3 days, I broke down sobbing. There seemed to be no way out. It wasn’t true, but Dr. McGloomy made that my expectation by how he interacted with me and by what he said or did not say to me.

Dave was then moved to the ICU and a new set of doctors entered our lives. Two stood out.

The Cardiologist — It sounds like the title of a bad horror movie — and I winced whenever he came in during his rounds. He would rush into the room, say a few words in incomprehensible medical jargon, ask a question, impatiently waiting and scowling while I tried to answer, and then rush out before I could ask anything in return. 5 minutes tops per visit.

In contrast, Dr. Aloha, so-named because he usually wore a Hawaiian shirt, was the first bit of light for me. He replaced Dr. McGloomy after a few days. He was warm, sympathetic, and frequently mentioned rehab. He didn’t sugar-coat the situation and was blunt that a lot of hard work was ahead of us, but he made it clear that we had a role to play in Dave’s recovery and that the stroke wouldn’t have the last word. He stressed that over and over again. Dave moved his right leg for the first time in a week. Just a twitch, but something. Both the doctor and the twitch gave us some hope.

After a week in the ICU, Dave was moved to the acute rehab unit. And that’s where we met The Therapists, angelic creatures who offered us words of encouragement and practical techniques so David could begin to regain his independence. Dave spent 3-4 hours in therapy (OT, PT, and Speech) every day for 3 weeks. Dr. Aloha continued to visit from time to time to check up on Dave and cheer us on.

Looking back on all that, what do we wish every doctor would do?
  • Stress the importance of rehab and the active role the stroke survivor and family can have in the recovery process. It’s important for patient and family to realize that they can get some control back over their lives, and that they are not just the passive recipients of medical procedures and tests. We can become so overwhelmed by what we are experiencing that we can slip into a passive role just waiting for something to happen next. 
  • Become familiar with the rehab process and the therapists in your medical institution. To whatever extent is possible, try to get someone from rehab to meet and talk with the patient (and family) as early as possible, before the patient is transferred out of the ICU. 
  • Encourage the patient’s caregiver, especially if he or she is the only caregiver, as I was, to find some way to take time off. It’s critical for caregivers to take care of themselves and all too easy for them to forget to do so and, as a result, suffer burn out and depression. 
  • It may sound stupid, but try to find something of importance to the patient and caregiver that you can ask about occasionally. The family pet, a child, a hobby, sports, favorite music, whatever. Just something that indicates you view the patient as a fellow human being, and not just a medical case to be pushed through the system. Sometimes a patient and their family can begin to feel like they are on a conveyor belt. The conveyor belt syndrome may be inevitable -- efficiency and speed are critical at times, especially in the ER and ICU, but try to counteract that dehumanizing feeling with a personal gesture of concern or interest from time to time. Just acknowledge in some small way that the patient is more than just a stroke victim or a list of conditions, as Dave put it. It doesn’t take a lot of time, just a small effort, but it can make a huge difference to us emotionally.