Bad news: He's complaining like mad. Took his blood sugar: 135. He needed some insulin.
I actually slept most of the night. I slept right through the 4 am Krishna service. Well, I heard one horn blast, but that was it. I was out like a light again. Good sign. I think I am over my guilt, which tortured me the other night.
I had breakfast at the Ashram and headed out. It had been raining all night. It's the rainy season. It starts raining, then it starts raining harder, and then the real downpour starts. I was concerned I would be drenched going to the car, but the sun came out as I was breakfasting and lasted until I got in my car.
The Hawaiian license plates are decorated with a rainbow. Never got it. Thought it was just an upbeat statement. No, no. Honolulu has single, double, and sometimes triple rainbows. It's a daily event. Yesterday as I was driving to the hospital, there was a rainbow in a blue sky with white clouds when there had been no rain in the last several hours.
The Honolulu landscape is more dramatic than the Big Island's. The mountains jut up from a reasonably flat plain. They look like mountains, but some of the high-rise buildings here rival their height if they are not even taller. On the Big Island, Mauna Kea is 13,800 ft; we like to say it's 14,000 ft. But this mountain doesn't start at sea level. This mountain begins at the ocean floor, so its full height is 33,000 feet, making it the tallest mountain in the world. But, because it slopes gently, it looks like a hill. In 10 to 20 million years, the Big Island will look like Oahu, but Kauai will have sunk into the ocean.
I started my drive to the hospital without the help of Lady Gaga, sure I knew my way already. Silly me. Yes, I knew the way, but Lady Gaga knew how to avoid busy roads. The traffic on Honolulu expressways is like the traffic on the Long Island Express Way in NY, which was dubbed the longest parking lot in the world. I chose to get off after a while and let the fine lady guide me through back routes. For the final stretch, on H201, which is not usually jammed, it was stop-and-go traffic again. This time it was an accident. I had only 3 miles on that road, but it was a doozy of a three-mile ride. Since it was all under 5 mph, you can imagine my concern.
When I arrived at the hospital, Mike had his eyes closed. It's hard to know why they are closed: because he just doesn't have the strength to open them or if he's really sleeping. Lina, from the diaconate office, was here visiting. She had been the first one by my side the morning he was put in the ICU. She gave me a lovely shoulder massage.
It's become harder to sit and do nothing because he asks more of me.
Good news: He is complaining much more about general body aches and pains. I think I finally found a fix for that.
Bad news: He is complaining much more about general body aches and pains. Really moaning out loud, crying for someone to take some of his pain away, asking why this is happening to him.
When he moans and groans, I assure him he has good reason to moan and groan, he is really in dire straits. I ask him if telling him he has good reason to complain is helpful. He says yes. I am so glad that helps. When he does complain of pain, I have been moving his toes back and forth to provide stimulation for the body, somewhat afraid to do anything more intense.
Today, I started doing full range of motion with his arm and leg joints. Wow! He says this really gives him relief. It was one of the aides, Karen, who said he should get the physical therapist to give him range of motion. I requested a PT, no one has shown up yet. I just started doing it myself. It's good for him and good for me. It provides me with more physical movement as well as him. When the nurse came in, I told her that moving his limbs helped him. She looked at me and said, "Yeah," as in, of course. My question: then why hasn't he been provided with full range of motion movements for the last three weeks if it is such an obvious thing to do to make someone more comfortable. While I am here, I can do it for him every time he calls out in pain. I would still like to see what the physical therapist does and does not do so I can modify my work.
Someone who is reading my blog posed this question:
"But seriously, you've got to teach me how to sit there and listen to a person moan without it being the same as having high voltage applied to your temples while you stand in a bathtub if you don't get up and fix everything for that person until the moaning turns to a sigh of relief."
The answer is that I learned to sit with my own pain and observe through what is generally called Mindfulness Training. I participated in Vipassana training as led my S. N. Goenka. This worked for me. I sat about 15 10-day silent meditation retreats at a center in MA and did another 5 or so at home. In the beginning, I was doing them twice a year.
When I first went, someone said to me, "Betty, you'll never make it. You can't keep your mouth shut for a minute." I told her, "Just watch me!" I have been dreaming about silent retreats ever since I was an adolescent. I think reading Seven Story Mountain inspired me. When I was in graduate school, I read about an opera singer who cleared up a throat problem by remaining silent for a year. She moved to a house in the country and spoke to no one. "Ah!" I thought, and dreamed about that for myself. Aren't we all full of surprises??! Needless to say, I did beautifully in the silent retreat. And, I understood the purpose of it to be to heal myself so I could be a better person. Some people come to the retreat for a high; some come to escape. If you leave your body while you're meditating, you can escape. But when the retreat is over, you have to return, and you've learned nothing.
I haven't been meditating regularly since I injured my leg in 2004. I couldn't sit the way I had. Before then, I meditated every morning and every night. I found that even if my mind rattled on like crazy while I meditated, I came out of the process calmer. I think it depends on the person's intention in meditating. Many aspects of it are just part of my daily way of thinking. And I had the unfortunate/fortunate experience of doing much better. I achieved my goal, so why bother continuing with the exercise. The mediation leaders warn of things that lead us away from continuing to practice; success presents one of the biggest challenges. Boredom is another.
The idea behind the meditation practice is to remove the element of emotion from of mental picture, remove craving, wanting something you can't have, or aversion, not wanting something you do have. No way to avoid these two. The only choice is to figure out how to deal with them. I like to say this skill is what separates the men from the boys.
How do you avoid emotion: observe calmly. How do you observe calmly? You don't think of it being on a scale of 1-10; you don't valance it from good to bad. You just describe it. My first sit, right from the start I was experiencing terrible physical pain in an inner thigh muscle and my coccyx. I couldn't sit cross-legged, and I couldn't sit with my legs out straight; there was no position I could sit in comfortably. I finally chose the cross-legged position, locked my legs in place, and would say, "I can endure this pain one more minute," and then go about describing the pain. "It feels like the muscle is being pulled right off the bone." Note, I never say it hurts. "It feels like the muscle is made of wood." Guess what happened! The pain went away. It isn't just that I learned to live with it with equanimity; it actually went away. I never felt that pain again while I meditated- until my injury in 2004. Then it came roaring back with gusto. I have theories about why this works, but I'm sure I've given more information on this process than anyone wants.
In conclusion, because I learned to sit with my own pain, I learned to sit calmly with someone else's even if I can't do anything about it. That doesn't mean I don't continue to problem solve. Mike has also taught me to stay calm. My mother got hysterical whenever something went wrong. Mike's favorite expression is, "It's only a problem to be solved." That works well when you can solve the problem, not so well when you can't. The Vipassana works better then.
The day has been pretty calm for Mike. He slept most of it. It is becoming hard for him to open his eyes; he is so weak. He hasn't eaten any food now for 3 weeks. He is suffering the torture of the damned. He can't eat and is always hungry. The hunger does not go away. I have no idea why. He frequently has to pee, although he can't make urine anymore because of his end-stage kidney disease. He will probably never pee again. He has to pee because his belly, bloated with liquid in response to the pancreatitis, is putting pressure on his bladder. He can't breathe deeply either because of his bloated abdomen. He's like a pregnant woman without guaranteed relief and the anticipation of something joyful coming. I have to say; the nurses and aides are great about this situation. They know he won't produce any urine. None the less, each time he asks, they get the urinal and hold it in place. Somehow this seems to help him. In the bad old days, you could expect a nurse to say impatiently, "Mr. Ross, you can't pee. No point of getting out the urinal." Just having someone try to help is helpful, having someone validate your needs is soothing.
Since I discovered he responds well to the range of movement exercises, things have gotten a lot better. He is moaning less. The nurse finally explained to me why they didn't prescribe it before. She said he was one sick puppy. In the state he was in, any movement, even being moved while being totally passive, could lower his oxygen level. It was a low oxygen level that got him sent off to the ICU. Now I know what to look for. As I work with him, I keep my eye on the oxygen reading.
When I work with him, I start with one hand, move the fingers back and forth ten times, then the thumb, then the wrist, then the elbow and then the shoulder. I move the shoulder both up and down and back and forth across the body. Then I work with his foot on the same side, starting with his toes, then his ankle, then his knee and then his hip joint, moving the whole leg up and down and then back and forth across the body. Then I do the other leg, and then the other hand. This brings him relief from his general discomfort. I told the nurse to ask the PT to wait until I was in the room so I could observe what is being done.
It's quite a difference between having a sitter on duty versus just the nurse. Every time he feels he has to pee, I have to go out in the hall and find someone to help him. When this IV machines start beeping, I have to go out in the hall to find a someone to fix the problem. There are a variety of reasons the IV pumps can go off. The obvious one is that the IV solution is finished, but that's not the most common one. The common ones are: air in the line and obstruction. I'm getting pretty good at fixing those two myself. Obstruction is the easiest. It means the line is getting crimped either by Mike lying on it or by being bent. The air in line is trickier. I generally prefer not to fix that one because I know an air bubble can kill him. However, I believe the machine is trained not to continue the infusion if there is one. Sometimes the nurse comes in and actually has to flush out the line. Sometimes they come in and snap their fingers at the line to clear the air bubble.
Today an Assistant Nurse Manager came in to see me and asked if there was anything she could do for us. She said she would be stopping by every day. I pointed out that I have been here for two weeks and hadn't seen her yet. She smiled and said she had been sick. She asked me if I had any complaints. Well, how about that mistake with the catheterization? I am still suffering from guilt that it ever happened. While we were talking, Mike called out," That hurt!" Okay. This is out of my range of calmness. His suffering is one thing, but suffering I caused or could have prevented if I was on the ball is another matter entirely. She said she would look into it.
I told her some nurses were less involved and caring than others. I said to her, "You know who they are. The nurses talk about it on the floor." She said, she was sorry I had overheard such a conversation. I told her I hadn't overheard a conversation between the nurses. I was a school teacher. We talked about poor teachers among ourselves. Nurses have more contact with each other than teachers do, who are isolated in their rooms and only have a chance to chew the fat over lunch. It seemed like a normal activity to me. She smiled and acknowledged my point and said, yes, she knew who the burnt-out nurses were. I didn't tell her that I actually had confirmation from one of the aides about how lousy this one nurse was. I have no idea how people in Mike's condition make it without an advocate by their side. It's not just the comfort care I provide him with, it's the assurance that he's not on his own and the consistent reminder that I love him and want him back in any condition.
PS.
Two packages and one card arrived today. My sister, Dorothy, sent warm socks to keep Mike comfortable during dialysis. The other package was a care package for me. Yvette sends me stuff from home I needed.
