Dear bidet, you have no idea how much I have missed you for the past 24 hours.
After struggling with inclusion body myositis for more than 17 years, it was a bout of constipation that finally sent me to the hospital. After 17 days, I owed too large a debt to my toilet to ignore the problem any longer.
I checked into Scripps Green Hospital late in the afternoon. I was in my Permobil C500 power chair, but I was forced to abandon that for a gurney. The hospital staff seemed shocked when I told them that I could not stand up and transfer, they would have to find a way to lift me. A Hoyer lift I suggested. They shook their heads. “We will get a lift team,” one orderly said.
Silly me, I expected to see a few rejects from the San Diego Chargers show up. Instead, it appeared that their lift team consisted of anyone who was not on break at the moment. I tried to explain that I had contractures on my left arm and left leg and that I would be no help whatsoever, not because I did not want to, but because I could not. Nevertheless, they each grabbed a limb and said “one, two, three!” and lifted. I have a fairly high tolerance for pain, and even when something really hurts I try not to make too much of it. I literally screamed out loud at the top of my lungs. But on a positive note, they didn’t drop me to the floor. This process was repeated when they transferred me to the x-ray table, then transferred me back, then to my final destination––a bed in room 466.
At last! Oh how wrong I was. You see in order to cure my bout of extreme irregularity they were going to administer “GoLghtly” which is mostly used to prepare for a colonoscopy. It makes you Go, but certainly not Lightly. In my case it was a way to force the issue. After drinking a couple of quarts of the stuff, I was ready for the next phase at about 3 am. A nurse’s aide came in response to my call button (eventually) and I explained what was about to happen. She extended her arm and wondered if I needed help to the toilet. Obviously the second shift had not been told about my condition. When I told her that I could not walk, stand, or even roll from side to side, she left quickly in search of help. Help consisted of two more aides and a bedpan.
Their technique was simple, but brutal. They would shove me to one side of the bed, rolling me in the process, then put a very uncomfortable plastic thing beneath and roll me back the other way so that I was perched on top of it. Now my pain was complete. In order to shut me up, they brought in several more pillows and placed them in areas that bothered me the most. Of course the entire process had to be repeated to remove the pan. And both processes were repeated five more times during the night.
By morning, I was declared “fixed” and a nurse asked if I would like to have breakfast. You would not think I could have an appetite after all that, but since I had not eaten for nearly 24 hours, I let them bring it to me. I don’t need to tell you what hospital food is, but fortunately it was not possible for me to eat any of it. My dysphagia means I must be sitting upright but the hospital bed wouldn’t take me to that position.
“Can’t you just sit on the edge of the bed with your legs dangling over the side?” the nurse asked. Once again I had to explain about having no upper trunk support. So they put the breakfast on the over-bed table and shoved it up close to my face. Of course I could not raise my arms high enough to even pick up a fork, let alone get something to my mouth. When the nurse returned and saw that I had not eaten anything, she offered to feed me a few bites. A few bites was all it took to send me into violent coughing spasms whereupon she promptly decided I needed a consult with a respiratory therapist and a speech therapist. For that matter, why not also have occupational therapy and physical therapy? (I was on Medicare with a good supplement after all.)
So, for the three hours before lunch, I was visited by all of them plus a case manager, charge nurse, resident doctor, dietitian and nutritionist. Then came lunch and once again they tried to feed me, and once again it was nearly impossible. By then they were ready to fill out my discharge papers and send me home. But there was one last minor detail. They had to get me out of the bed and onto my wheelchair. This time they did get a Hoyer lift, but none of them had used one before, so it was a part scary/comical procedure that lasted for the better part of half an hour and ended with me kind of in my wheelchair.
Now I am back at Huntington Manor, sitting in my very comfortable Permobil, secure in the knowledge that soon my two caregivers will use the overhead ceiling lift to painlessly lift me from the chair and place me in my bed.
I had asked one of the nurses why the hospital was not better equipped to handle people like me. Her answer was that they had all kinds of patients, not just people like me. Of course that is true, however local grocery stores also have all kinds of people shopping there, but that does not prevent them from having wide unobstructed isles, handicap parking out front, and automatic doors. Time and again I read of people complaining about the inaccessibility of healthcare facilities, yet nothing is ever done about it. if I were a little bit younger I might take this up as a cause. It is not that I am too old for the work, it is just that I know I would never see any progress during my lifetime.