Ilnesss churgstrause in All for you

This morning, I was going through papers on my desk when I came across the notebook I usually carry around with me. 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 has been in an intensive care unit for 5 weeks now.

For some time 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 her daughters to be fresh and alert enough to make the important decisions that could arise at any moment.

A vigil is a ritual where the person keeps a watch, waiting expectantly for something to happen. It’s not the first time she has spent time on ICU over the last year or so, I vigils 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. So perhaps I should give thought and I chose to cope with our time in ICU waiting room. They may work for someone else.

ICU Waiting Room Survival Tips

One: find a place elsewhere to rest. If you can’t go home to sleep or rest, 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 anywashing you may need.

Two: Take Breaks. I noticed in all people in the waiting rooms people on their last legs in need of rest but like me for a long time I always felt afraid that if I left the hospital, something awful will happen when not there.

I we needed to come to peace with that possibility and take breaks. Give one’s self permission to get out of the hospital. The first few weeks we all 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 Greggs. 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 shop, 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: 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!

Four: Dignity and Privacy. I wrote a 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 assistant or nurse keeps calling your loved one “dear,” I respectfully told them to please call her by her name. Oh, and, 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, it was suggested that I stop visiting at night. I just couldn’t do that.

I was also told, over and over, “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.

My wife, me and family know now that there is no full recovery just various levels of being ill each time she has breathing problems her system will drop in recovery level it’s got to the stage that she has put a DNR on record, she wants nobody to have to make the decision that machines can be switched off

Five : Who Can You Count On? I quickly find out that you cannot talk and communicate with everyone. So I had to establish who will communicate with the doctors. designate one or two people in the family who will be the “point people” to deal with the physicians. And I then could disseminate information to friends and family. We divided the groups (family, friends,) we needed to communicate with amongst four 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.

Perhaps you would like to make a note of any ideas I have 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.

My wife is suffering from Churg–Strauss syndrome/eosinophilic granulomatosis polyangiitis [EGPA] or allergic granulomatosis. Quiet a mouth full isn’t it we just called it churgstrause 