This morning, I was going through a stack of papers on my desk when I came across a wrinkled sheet from an old notepad. At the very top I had scribbled, "One hour in the hospital is like a full day anyplace else." The remainder of the page was filled with comments and observations I wrote down while my wife was in an intensive care unit for three weeks.
For many years I have spoken with families camped out in the waiting rooms of hospitals, surrounded by blankets, empty drink containers, and a mixture of stale odors. At times it looks like a war zone. When it was my turn to reside in the ICU waiting room, I made the decision not do the "ICU vigil" nor to set up shop in the hospital, but to design a strategy that would allow me and my son to be fresh and alert enough to make the important decisions that could arise at any moment.
The ICU Vigil
A vigil is a ritual where the person keeps a watch, waiting expectantly for something to happen. I see it all the time: exhausted families trying to sleep in small cramped chairs on hard, dirty floors. Families may do this for a variety of reasons. Many people believe it is what they "should" do or else family, friends and nurses will think badly of them if they don't stay at the hospital the entire time. Others worry that their loved one will take a turn for the worse or die when they're not around. For some people, guilt bites at their heels, a son or daughter who has not spoken to their mother in seven years and needs their loved one to wake up.
But the waiting room rarely feels like a peaceful environment and is never conducive to rest or reflection. It's often packed with poorly-supervised children, discordant smells of several fast food chains and lots of noise. And the noise level in a hospital, while not as bad as shopping at Abercrombie with my grandchildren, is still far too loud for anything relaxing.
I believe that the "vigil" also saps families not only of their energy, but also their ability to make intelligent decisions. I've put together some tips drawn directly from how my son and I chose to cope with our three-week ICU waiting room experience. They may work for you.
ICU Waiting Room Survival Tips
One: Rest Someplace Else. If you can't go home to sleep or rest, set up a base of operations at a nearby hotel or motel. We negotiated a very reasonable rate with a local hotel and had a room with a sitting area, kitchenette, and lots of light. I was also surprised to learn that assisted living facilities frequently lease out unused apartments. Talk to the case manager at the hospital. He or she can give you a list of hotels and places that will offer you a reduced "hospital rate." Clean clothes will make you feel better, so make sure that you have a place to do your laundry.
Two: Take Breaks. Families always feel afraid that if they leave the hospital, something awful will happen when they are not there. If you are at the hospital, you need to come to peace with that possibility and take breaks. Give yourself permission to get out of the hospital. The first two days, my son and I ate all of our meals in the hospital, then decided that was enough. From then on, we ate out, and anticipated dessert as a highlight of every day. My sister-in-law became obsessed with large chocolate éclairs from Perkins. It worked out well, and we bought pies for the entire ICU staff.
We went to a movie one afternoon and then found this fabulous sporting goods store, where we went to buy a single jacket and found ourselves at the checkout station with two shopping carts full of "essentials." Was it indulgent? Yes, but it was a useful distraction from the ICU's reality. We returned to my wife's bedside with renewed energy, if a few pounds heavier.
Three: Exercise. When you look for a hotel, make sure it has a workout room or ask if the hospital has one. If that is not your cup of tea, then take walks. Exercise will give you time to work out some of your feelings and raise your endorphins, the feel-good chemicals. You also may feel better about the deserts.
Four: In the Room. Intensive care units and hospitals have gotten much better about allowing families to stay in the room for extended periods of time. But, what are you supposed to do while you're in there? I found myself staring at all the squiggles on the monitors. Even though I knew what they meant, I was using it as mindless activity to pass the time. There isn't a great deal to do in the room, and as the number of visitors increases, the noise level goes up. The visitors in the room end up having conversations that should take place elsewhere. If the patient is awake this can be very annoying and make it difficult for them to concentrate. Control the noise! I will say it again: Control the activity and the noise!
Five: Dignity and Privacy. I wrote an entire blog on this topic. Always interact with the person as if they understand everything. That includes side conversations going on in the room. If an aide or nurse keeps calling your loved one "honey," respectfully tell them to please call her by her name. Oh, and, "Dude wake up," is rarely an effective rallying cry for someone who is confused or very sick.
Six: Realistic Optimism. People mean well when they say, "It will be OK," but that doesn't really help you deal with your emotions. In fact, it only makes it worse. Having a critically-ill loved one is like riding a roller coaster. One minute optimism fills the room, only to be sucked out by the inevitable bump in the road. After optimistic mornings, my wife would always feel worse in the evenings, until my son suggested that I stop visiting at night. I just couldn't do that.
He also told me, over and over, "Dad, you know too much." Try to adopt an attitude of realistic optimism. Ask the doctors what they believe are the realistic chances of recovery and what types of problems may lie ahead. The fewer surprises, the easier it is to deal with the illness.
Seven: Communication and Who Can You Count On? You will quickly find out that you cannot talk and communicate with everyone. First, establish who will communicate with the doctors. If you have a large family, designate one or two people who will be the "point people" to deal with the physicians. You can then decide how you will disseminate information to friends and family. Some families decide to sign up for Caring Bridge , which allows you to post information and other people can leave messages. We felt that was a bit too "public" and divided the groups (family, friends, and work) we needed to communicate with amongst five of us and sent email updates to those we felt had a "need to know." Every family is different, but you will need to control the barrage of phone calls and inquiries, so work out a system early on that works for you.
I suggest that you should go ahead and flag this article or file in your personal file. You may not need it now, but almost no one escapes the stress of watching and waiting while a loved one struggles with a serious illness.
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