Mike in the Hospital

May, 1994

Michael is in the hospital. He collapsed when he got home from the day program. I saw him earlier that day and he looked really terrible. He was pale. His lips looked like they were made of wax.  The said he didn’t look too bad in the morning. They would have kept him home if they noticed anything wrong.  J___ from his group home said the EMS workers got there very quickly. They gave him oxygen, took his blood pressure, which was very low and rushed him to the Emergency Room.

The next morning, I skipped work and went to the hospital.

I remember the subway ride over there. I rushed. It was about 7 AM and I had to run to get from the number 6 train to the E train at 51st Street. It was hot in the subway and I put my hat in my back pocket. I took the stairs two at a time down the long stairway to the E train. I hate getting stuck behind people on the escalator. There is always someone twiddling their thumbs, taking their time.  I made it to the train but hat was gone. This was a favorite hat of mine. I tend to lose hats in tense situations; I lost my red beret running for a train when Mom was in the hospital.

In the train, I was thinking about Michael. A wave of emotion broke over me. I normally didn’t think of Mike as a person, I’m sorry to say. But I was thinking of him as a person there on the train. I got really sad. This was some kind of transition. Years ago it probably wouldn’t have occurred to me to be sad for Michael. I was sadder for my family and myself. When I was a kid, visiting him at Willowbrook, it was boring. Maybe it was horror and depression disguised as boredom. This may be the reason I didn’t visit him when I grew up.

Hospitals are bad enough even when you can speak for yourself. If you can’t say anything to defend yourself, you’re in bad shape. I was sad and scared for Mike.

autistic brother mike in hospital bed with hand gestures

I didn’t know what kind of shape he was in and my mind raced to different possibilities. I was having a hard time controlling myself. The only other time this happened was when I went to a Nicholas Nixon exhibit at the Museum of Modern Art. One section of the exhibition showed portraits of his sisters-in-law, taken at one-year intervals for 15 years; another section displayed portraits of AIDS patients. The portraits of his family were dated with the year; the AIDS patients’ portraits were dated with month and year. I got the sense of accelerated time. I had to hide my face to conceal my loss of control.

autistic brother mike reaching out to me from hospital bed

I got there at about 8 AM and encountered this big goon of a guard named L___ G___. I wrote his real name down because he was giving me a fit. He wouldn’t even let me see my brother and I was getting pissed. He called his sergeant. It turned out I had to wait until 8:30 to get in. The ER was a zoo. One foreign doctor asked me if my brother was cold and clumsy. I think he meant clammy. I hope he was a better doctor than a talker.

 

 

I was relieved to see D___, from his group home, at Mike’s side. The group home staff really seemed to care about Mike.

caressing brother mike in hospital bed

I think Michael recognized me. He wanted to get out of bed but I tried to calm him down. He let me rub his head. When I massaged his forehead his eyes rolled back. I think this relaxed him. I caressed him and said, “Relax.” It seemed to do work. When he had enough, he wasn’t shy about pushing my hand away. He told me when to stop. That’s communication, isn’t it?  I’ll take it, but I would like more.

2 thoughts on “Mike in the Hospital

  1. Unfortunately, my experience with hospitals and those with cognitive & communication deficits has not been good. The patient really needs an advocate most of the daytime anyway. Hospitals at least will now provide “sitters” if the family can’t always be there. Glad you were able to be there for Michael.

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    • Hi Jill,

      I appreciate all your comments. Thank you.

      Absolutely everyone needs a friend or relative as an advocate when one is in the hospital. The times that Mike was in the hospital, there were always people from his group home assigned to sit with him. They took shifts. I am very grateful for that. However, even those who do not have cognitive impairment need someone. When my wife was in the hospital, I was there 24/7. I had a big notebook in which I wrote down everything that happened plus the names of nurses and docs, times of medications, etc. That in itself increased the level of care, I think. In the ICU, once, they had her on a blood coagulation agent and heparin at the same time. When I questioned that, the doc had to scratch his head and tell me he’d find out why. Later, he told me that two protocols overlapped. He also said that if there were more people advocating for their loved ones in a hands-on way, there would probably be fewer mistakes.

      Thanks again, Jill.

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