Wednesday, February 13, 2019

 Good news: He's complaining like mad.

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.

Tuesday, February 12, 2019

Good news: No changes for the worse.

Bad news: None

    Mike had dialysis today. That knocked him out even when he was healthier.  You can imagine how it leaves him now.  And he is going to have it more often this week.

    The worst is that he is moaning a lot.  I always ask him if he's just complaining or if there's something I can do for him.  He mostly says he's just complaining.  I think that sounds reasonable.  I say go for it.   I am very grateful for my training, learning to just sit with my own pain and that of others without reacting.  In the past, every moan would have gone through my body like an electric shock. 

    Those who have gone to the movies with me are probably surprised by my tolerance.  I am well-known for running out of the theater/room whenever someone's about to get hurt, or one of the characters is mean. It's hard to explain to people. However, what happens in the movies is usually about something that humans are doing to other humans. Man's inhumanity deeply frightens me.  I have no trouble with individual pain, particularly when not caused by another person, even death. I haven't had a problem since I was a child.  I was good at the bedsides of my dying grandparents. Go figure!  

    As a young adult, I read a short story by Tolstoy, I believe. It's a story about a dying man. He's whole family skirts around the issue of his condition.  He has a male caretaker that speaks to him honestly, and this relieves him. That's what I try to give Mike.  I tell him his condition is a terrible one, and he has a right to complain.  I also tell him he's in a crash spiritual development course. He's doing his forty days and forty nights in the desert. That puts him in the ranks of the best of them.  Although I think Moses, Buddha, and Christ chose to go into the desert.  I don't think Mike did. But then again, neither did Job, and it all worked out okay for him.  I think I have some Panglossian faith that it will all work out for the best in the best of all possible worlds.  I may be naïve, but it keeps me afloat. Hopefully, it will do something for Mike as well.

    I have asked him if he's dialoguing with Christ.  He said no.  I don't know why.  I don't know if he knows why. 

    Nothing much new for the rest of the day.  Yeah! Just events, but no change in Mike. He's just moaning.  At one point, he started sweating.  I called for someone to take his temperature.  It was as normal as normal can be.  

    A new nurse came on shift.  Funny, the young ones are really on the ball and interested in doing a good job. Most of them are in their thirties.  

    I just learned about millennialism last week: the problem millennials have with accepting that they can't have everything the way they want it. I have heard some remarkable stories from Damon and Shivani, who have had the job of supervising them.  But no; here it is the 50-year-olds who do as little as possible.  Everyone else is concerned and on the ball. I hadn't seen anyone all day except for the dialysis nurse.  The regular nurse came in once because some machine or other was beeping its head off.  She was defensive about what she was doing. Really?!  Not a good sign.  

    When the shift change occurred, the new nurse said he would be checked on regularly as he had been today.  I said no one ever came in to check him. She gave me a look.  I realized he hadn't been turned since he finished dialysis.  That means he was in one position for 6 hours.  Ow!  I saw on the board that when he was moved, someone change the note on the wipe board from "turn every 2 hours' to 'turns in bed.' He can barely raise an arm. He hasn't had any calories for over two weeks, three this coming Thursday.  Where would he get the energy to do that?  I tried to get him to press the call button for the nurse.  He was barely able to press the button.  I assured the new nurse that as long as I was here during the day, I was happy to do the job.  But, please pay extra care at night when I am not here.

    He asked to speak to Damon around 3 pm. They were on the phone for quite a while.  Damon was impressed by his responses.  When Damon was here, Mike was seriously out of it.  But, let us remember, he was in the ICU, intubated, and on Fentanyl.  Those factors might have had something to do with it. 

    The Wi-Fi was much better at the hospital today.  I think it was the bad wind storms we had that interfered with the system.  FYI:  It was so cold in Hawaii the other day, that Maui had snow on its mountain for the first time in recorded history. Today was sufficiently relaxed that I started playing Free Cell again for the first time since I arrived.  Maybe soon, I'll have nothing of note left to say. Gee.  Someone mentioned that this would make a good blog.  Have no idea how to locate one, no less post one.  Thought if I have enough viewers, a sponsor would pick me up, and that would cover my car repair costs.  

    I set out to leave around 5 pm but got delayed.  Mike was sweating and asked to be bathed.  I was able to wet a cloth and pat him down.   Then he asked, "Why is this happening to me?" I reminded him of Job's story. He was a good and honorable man, just like Mike, and terrible things happened to him.  I told him I had to go.  He said, "Don't go. I'm so alone." I reminded him that he is never alone.   I told him to ask Christ that question.  He was finally able to do that.  I asked, "Did he give you an answer?" He said, "No." Do you feel his love? "Yes!" I reminded him that there were many, many people praying for him, not only here in Hawaii, but in Ohio and New Jersey as well.  I told him to focus on those praying for him.  He was able to do that for a little bit. I don't know if it is going to continue for the rest of the night.

    I reminded him that I would be back in the flesh the next day.  I was not planning to leave for the Big Island until he was better, or I had to get my taxes done.  After that, I would come back. 

    I spoke to the nurse on duty, who seemed better than the day nurse by a country mile.  I told her that he wasn't physically able to push any of the call buttons, and if he called, "Nurse!" it might be confused with his other groans. She said that she and two other people would make it a point to check on him regularly during the night.  That means I can sleep peacefully and not worry about him.  My worry would not be about his physical health; he's got every kind of monitor on him known to man.  I would worry about his physical and psychological comfort.

Tuesday, February 12, 2019

 Good news:  He is in a private room with a fantastic view (for me), and Mike can finally see the cycle of light and dark provided by nature instead of artificial light, which is on all the time.

-he is complaining and asking when they will do something. Good sign because he feels well enough to complain. His coloring is better; his white blood count is better; his abdomen is a little less distended, which means he may be draining some of the fluids himself.  He wasn't on the bi-pap last night. He is still on just the nasal cannula with a 40% boost from the ventilator. Maintained his breathing from yesterday. Blood sugar count this morning: 86.  Fantastic! Maybe there is some hope enough of his pancreas is working to prevent diabetes.

Bad news:  I don't have anything to report today.

   

    I had a bad, bad night's sleep. No, it was not because of the banging around in the Ashram, it was because of guilt. I have been doing so well dealing with his suffering.  All the healing I've done on other people and my Buddhist Vipassana training have helped me not actually to suffer with him, sympathy, while still understanding his suffering, empathy, and doing what I can to help relieve it, compassion.  But then they catheterized him!  That was in error.  He has end-stage kidney disease, and the fluid in his abdomen is explained by his pancreatitis.  The night they did this, I called, and he said, "Tell them to leave me alone!" I didn't think to ask what they were doing to him; I just assumed it was the usual annoying stuff that happens when you're in a hospital.  I could have stopped it if I had been there.  Do I understand that my guilt and self-flagellation does no one any good?  Quite to the contrary, it was denying me a good night's sleep, which was going to make me useless after a while. I tried all the tricks I know to relieve myself of this burden; EFT, healing, visualizations that I use with others.  Nothing works.  I was going to call a therapist who I believe can help me. 

    I wasn't feeling hunky dory this morning to start out with.  Then I called and asked for room 318A.  The operator connected me.  An aide answered.  I said I wanted to talk to my husband. A cheery, upbeat, clear voice answered.  It didn't sound quite like Mike, but he has been having problems articulating clearly for any number of reasons: takes too much energy, doesn't have the breath he needs, and the nasal cannula is pressing down on his upper lip.  I said, "You sound really good today." The voice on the other end told me that I sounded pretty good myself.  At that point, I realized the voice was not Mike's.  At first, I thought the operator had connected me to the wrong room.  I would try again and make sure they understood me correctly, "318A." Then I thought maybe he's not in that room anymore.  My first thought was that he was back in the ICU. Then I thought, perhaps they got him into a private room.  In fact, it is the latter.

    Good news: In the private room, he can see out of the window, see sunshine and trees. I don't think he can see the view of the valley between the mountains, but I can.

    Bad news: For me, he doesn't have a sitter anymore.  That means I feel I have to spend more time by his side if he needs anything.  Also, if his situation does change and he needs one, he has to go back into a double room.  

    The momentary confusion about the room change and its significance was another body shock. My immediate concern was he had taken a turn for the worse. I am doing the best to take care of myself, but I am facing a big change in my regular routine.  I am at the hospital 8 hours a day, even if I'm not always in his room. It's my new full-time job. In many ways, I feel all my life paths have prepared me for this.  I still could do without this change and be quite happy.

    While Jean was here sharing a room with me at the Prince Waikiki 5-star hotel, I used her blood pressure monitor and discovered that my blood pressure was 154/90.  I called my doctor immediately, and she ordered some blood pressure pills for me. I've been on them about a week and either the monitor I bought is broken, or my body is not responding.  I wrote her that the problem was persisting, and she told me to double the prescribed amount. I'm up to two pills.

    Besides the blood pressure issue, I discovered one shingle on the side of my body.  Yes, I got the shingles shot.  Yes, I'm sure it a shingle.  This will be the third time I've had it.  The first time I was 12 years old.  The second time, I was 61 and sitting in a hospital all night with my mom.  Stress causes shingles.  The last two make sense.  I can only speculate what might have been going on in my life when I was 12.

    Once showered and dressed, I went downstairs to have breakfast. The dining room was basically empty.  There was only one young girl floating around who was visiting from England as a member. Sweet girl.  Then I left to find a drug store and go to the hospital

    I stopped at Long's along my route and pulled into a street parking spot.  Horrible noise!  What now??? I saw the right rear-view mirror was bent in.  Guess how fast I was going?  Need I say more?  Rolling to a stop with my foot on the brake.  I have no idea what I hit, and, no, I was not up on the curb; I wasn't even particularly close.  What can I tell you? I'm thinking no point to contacting the Turo guy about my accidents until I have a full count.  Yes, the back of the mirror is scratched, but more importantly, the mirror that is suspended within the frame wobbles now as I drive.  I checked the driver's side mirror to make a comparison. I'm the safest driver in the world, at speed limit; it's the under 5 mph times that I'm a hazard.

    While in Long's, Damon texted me to ask if this was a good time to call his dad.  Last night I had a conversation with him about calling him every day.  I asked him if he remembered how his dad called him every day. (His parents were separated very early in his life.)  He called every third day when we were traveling through Ireland.  Damon said no, he didn't remember.  

            Then he complained that it was hard to have a conversation when you couldn't see how someone responded.  I reminded him that he fell short of being a sterling conversationalist at age three himself.  You do what you have to do. We resolved that he would call when I was in the room.  He said then I could hear what was going in his life at the same time.  Yes, everyone.  Tell him what is going on in your life; tell him funny stories.  This is not just to distract him from his current prediction; it is also to remind him that there is still life going on outside of his currently limited world and to provide his mind with stimulation. The monotony is deadening.

    When I got to the hospital room, Mike was already on dialysis. He had been on for an hour already.  He complained about being cold.  I don't like this dialysis nurse.  She does the technical end of the job but seems to have no use for the patient's needs.  Now he may not have complained to her because she never asked him how he was feeling. Nonetheless, dialysis chills you, and she could see he didn't have a blanket on him.  I got some warm ones and covered him thoroughly. 

    He now has an hour and a half left to go.  He seems comfortable and peaceful when he's not calling out something or another, even in his sleep. Usually, it's a result of a nightmare or a result of his living nightmare.

    I spoke to him more today about having a conversation with Christ and giving him peace of his mind for doing this to him.  This is Job's path.  I told him to see what Christ's response was.  I remember years ago giving Christ a piece of my mind about his failure to actually save the world.  We humans are still a mess, hating each other and trying to kill each other. The amazing thing was the calmness and compassion with which Christ received my angry words.  I can only hope Mike has a similar experience. He also has to come to Job's resolution, to accept and trust the will of God, even if he never understands His logic.

    A dialysis doctor came in to check on Mike.  They are limited as to how much liquid they can pull out because of his low blood pressure.  Usually, he has high blood pressure, which he takes tons of medication for.  Since pulling out excess liquid is a good treatment for him, the dialysis doctor decided to give him dialysis tomorrow, Wednesday, as well as his usual Tuesday, Thursday, Saturday schedule.

    One of the aides suggested that he get physical therapy now while he is in bed to maintain his range of motion. When I saw the doctor this morning, he said okay. He would put the order in. 

    How do people who don't have someone who can or is willing to sit with them most of the day do it?  There is so much the staff misses.  They are usually little things, like asking him if he wants a wet sponge to suck on, if he is warm enough or cool enough, if he needs more Tylenol if he wants his Honolulu Elsa by his side, or me kissing his forehead and telling him I love him.  The last they never do.

    I have told Mike repeatedly that I'm along for the ride.  I only have certain rules, which really apply for after we get out of here and he is on the long, long, long road to recovery:  He can't take a seat on a pity pot, he can't abuse me as a result of his frustration, he has to continue to let me love him, and he has to continue to find me funny.

Monday, February 11, 2019

 Good news:  He’s holding steady, and the hospitalist says he is actually doing somewhat better than expected.   He’s complaining like mad about being held down.  He is well enough to be aware of how bad his situation is. His blood sugar count was good. 120 this morning and 112 this evening.  He didn’t need an insulin shot. Yeah.

Bad news:  The hospitalist anticipates that it will be another two weeks before they can try to drain the liquid from his abdomen surgically.  They are waiting for the inflammation to reduce.  And, he may still not be able even to eat after they perform the surgery. The hospitalist told me he still only has a 50-60% of survival.  Wow!  I thought it would be better by now. I just called this evening.  Mike’s at it again.  He is trying to pull out his nasal cannula.  His oxygen level is borderline with it in, 90-91.  

            This has been one hell of a day.  I woke up around 3:30 am.  I heard this tick-tick- tick-tick.  I hadn’t heard it when I went to bed, so I thought it was someone using the dryer to dry something with a zipper.  It wouldn’t stop. I even got up to open the door and check.  Heard the noise more clearly, but couldn’t locate it. 

            Then around 4:30 am, the drumming started, along with what sounded like a shofar being blown, one to start ‘the program’ and somewhere in the middle, three short blasts.  (Shofar is a lamb’s horn blown on Jewish high holy days.) I knew they were having a special day today because I was warned that they were not serving breakfast to observe a fast.  I could have slept through the drumming, but that ticking was driving me nuts.  When I finally did get up, I discovered that that ticking was coming from a wall clock.  I hadn’t noticed it at all when I went to sleep, only when I woke up at 3. I asked Govinda, the manager, if he could take it down. When I mentioned the drumming to him, he said that he tried to close all the doors and the windows of the temple so it wouldn’t bother me.  I don’t know yet if this is a daily event or not. I think I’ll be okay with it once I get used to it.  I think I might even find it comforting.  

         I called Mike before I left the Ashram. He said, “Get here as soon as you can!” with desperation in his voice.  I stayed calm and went about my business, reminding myself that this is a good sign. He is more alert and generally feeling better.

        Then I went out to check the car.  I was thinking it was just a strip on the side of the car that I damaged last night, easy to replace.  Oh, dear.  The strip on the passenger side, where I scraped it, is part of a piece that includes the whole front bumper and the entire rear bumper. Then the comparable piece on the driver’s side is an insert, a four-foot piece. Oy vey!  It doesn’t look like there is serious structural damage to that piece.  It looked like it could be fixed with a paint job. I still have to call the poor Turo guy and let him know and get the process going. It is absolutely astounding how much damage you can do at under 5 mph. I’m the resident expert.  Just ask me.  I once took out the whole front of my car, rolling up a hill with my foot poise lightly on the brake at a red light into the back of a pickup.  Did damage to that guy too.  Very impressive!

      When I got to the hospital, Mike was groaning and moaning.  He was having nightmares that he was being held down.  Guess what?! He was.  This was not a nightmare.  I renamed him Deacon Job. 

        I asked if they could do surgery to remove the liquid in his abdomen.  The hospitalist said that it was unlikely for another two weeks.  They were waiting for the inflammation to quiet down.  They were concerned if they do surgery too early, he would be in danger of falling victim to bacteria introduced during the procedure.  That could be fatal.  They determined the degree of inflammation by a weekly CT scan.  He had one every Thursday.

        He would not be able to eat until the liquid is reduced.  He would not be able to have the liquid reduced until the inflammation subsides.  Even after the surgery, he may not be able to eat.   We’re easily looking at another month here in the hospital, maybe two.

        Then he complained of having to pee. I was there as the nurse exposed him.  There was blood on his nightgown.  It winds up they catheterized him last night.  Oh, shit!  Like he doesn’t have enough pain.  No wonder he was crying, “Tell them to leave me alone.”  Now here’s the point. Mike has end-stage Kidney disease.  Bad news: He will require some form of dialysis for the rest of his life.  Good news: He won’t ever have to get up in the middle of the night to pee again. That’s what the dialysis does.  It removes the liquid from his body.

       Apparently, they did a sonar gram of his abdomen and discovered that he had 500 ml. of liquid.  Some bright person thought it might be in his bladder, despite the reports that he has not peed since he got here.  What the hell were they thinking??  The nurse said that he was scanned during the night, they found all that liquid. Then the called the triage team.  They told the nurse to catheterize him, without checking his records and saying he had kidney disease. No, no, no.   Naturally, they didn’t get much out. What a surprise!

      Last night I was thinking Mike would be so much better if he could look out of the window.  He’s in a double room.  I already asked for the bed by the window.  However, because he needs dialysis in the room, he has to be in bed closest to the bathroom.  They drain the removed fluids into the sink.  However, if he was in a private room, he would have access to the sink and the window.  I was thinking they had him in a double for some cost-saving reason.  I was prepared to pay for the upgrade.

      The charge nurse told me that money was not the consideration.  They are juggling several considerations, only two from the perspective of the hospital’s needs: the number of rooms available. They are jammed to the rafters.  Second, Mike needs a sitter.  If he is in a double, one sitter can take care of two patients.  Sitters are a finite quantity.  Mike gets one, so he doesn’t hurt himself or pull out those feed lines.  Remember, he pulled out the intubation ventilator himself. He had had it.

         In terms of Mike’s needs: He has to be close to the nurse’s station so he can be watched at all times.  He is considered one of their more critical patients.  It was today that the doctor told me he is only up to a 50-60% chance of surviving this experience.  Jeez Louise.   If they could take him off the heart monitor, he might be able to move further down the hall. But no, they all feel he is one sick puppy and needs to be watched carefully.

     Yesterday’s visitors included Sandor and Meaali’inani, both of them are optometrists and good ones.  They recommended an ointment to help keep his eyes moist.  I pursued today’s nurse to ask her about it.  The aide said she was trying to order something for diaper rash, but hadn’t seen her all morning. We’re well into the morning at this point.  I said I’ll take care of it. I searched her out.  She was a bit startled by me.  Then she gets in gear and is most cooperative.  I text Sandor and ask for his recommendation so she can order it.  I give her the name, and she’s off.  Great!

      Then one of Mike’s intravenous lines starts beeping.  It says there is air in the line. I shut off the beeper (I’m getting good at taking care of things like that around here), and go to find the nurse.  She has her back to me and doesn’t hear me. Winds up, she is on the phone with the pharmacist.  She’s getting some feedback about her order.  They don’t sound too crazy about it.  She tells him things, and I make comments behind her to correct what she is saying.  She finally says, “The wife will chase me all over the place.”  My comment, “She’s got that right!”  There’s another nurse at this station who has observed the whole thing.  She finally goes up to the nurse and says, “The wife is standing right behind you.”  It was all a good laugh.  What’s not funny is this nurse responds to threat not to need.  

      When I came back into the room, I shared the story with the aide.  We had a good laugh together.  When the aide for the next shift came, we shared the story with her.  She first said she didn’t know the woman.  Then I described her. She said, “Oh, her. I once had lunch with her, and she tried to convince me not to go into nursing because it was a terrible job.” Sounds like this lady. Her whole demeanor said, “I DON’T WANT TO BE HERE!” 

       When it came time to turn Mike, the aide didn’t even bother calling his nurse.  She asked this fantastic nurse, Lucy, who was taking care of Mike’s roommate to help her. Lucy is someone who saw me walking down the hall one day and asked if I was okay.  When I explained the situation, she asked if she could do anything.  I asked for a hug and got a great one.  It was still with me.  There are so many genuinely caring people here.  There are one or two not so great ones, but no outright bad apples.      

     The best aides have sat transfixed to the patient, watching every minute.  Mae was like that.  Then there was Rachael.  She thought to put on soothing music and put some Lavender scent near him to comfort him.  Lavender is one of the essential oils I wear.  I had it with me. We doused a cloth with it and put it near him. Then there was Liam.  He was the worst, even that is not absolutely terrible.     

      We had Liam before Mike went up to the ICU. I was sleeping on the cot in Mike’s room at the time.  We were both trying to sleep, but there was this racket out in the hallway, people talking and laughing loudly.  I called Liam’s name but got no response.  Figured he went to the bathroom or something.  I finally got up and walked out into the hallway. He was one of the people out there talking loudly and laughing.  I actually had to ask him to keep it down.  Don’t think I would describe him as being on the ball.

      Today’s aide just went to change Mike again.  He is still bleeding a little from the butcher job they did on him last night. Grrrrr! 

        Today I called Genworth, our long-term care insurer.  Good news: we have excellent coverage, covering nursing care, aides, and even chore services and adult daycare. 

Bad news: They don’t cover home hemodialysis.  I think Mike is going to need this.  This means he has to stay in Honolulu until he can be transported to the dialysis center from our home.   I think there is another center in Kona.  I’m hoping they do provide it.  I have to investigate how much they charge.

       He had been scheduled for PD surgery, which is a different type of dialysis that can easily be done at home. He was still a candidate, but it will probably be a year before his abdominal area is sufficiently healed to do something like that.

        It’s three in the afternoon, and I still haven’t screwed my courage to the sticking point to contact poor Keven, my Turo host.  Oh, boy. 

     Two technical problems to add to my troubles: One, the WIFI service at the hospital sucks. Two, something went wrong with my formatting in Word. I finally found a young man under thirty who could help me.  He didn’t solve the whole problem, but well enough so I can function.           

     I left shortly after 5 pm.  Before I did, Mike was saying, “What a waste of time!”  He would love to do his usual work.  I told him it won’t be a waste of time if you use it to learn and deepen your spiritual practice.  Mike’s involvement with Catholicism is primarily intellectual, except for his spiritually well-developed heart. Through his relationship with the church, he has become a truly loving man. Mike has always been a moral man, and he has always loved me, but he didn’t have much patience for others.  This has changed dramatically over the years.  I think he believes deeply, but he doesn’t have a well-developed spiritual life in an almost corporeal sense.  I have been teaching him what I know and been encouraging him to dialogue directly with Christ.  If anyone here on Oahu would like to help him in this matter, it would be much appreciated.

       This evening, rather than a crowd for dinner at the Ashram, I was all alone in the dining room.  It seems that Sunday is a feast day for the temple, and all the members come to share a meal and celebrate together. 

       As I sat there typing, I heard the drums banging downstairs and the members singing along.

Sunday, February 10, 2019, 9 pm

Good news: He was very responsive to some deacons and their wives when they visited

He is more aware of his situation.

Bad news: His awareness of his situation is making him unhappy, downright miserable.

             Mike dozed for most of the day. He is calling out more in his sleep. I think his line between sleep and wakefulness is blurring, as is the line between remembered past and present.  The doctors warned this confusion would happen. He has no exposure to natural light, and he is not maintaining a regular daytime/nighttime routine. This will lead to confusion.

           He called out at one point: “Just knock me out!” This is what he was saying in the ER in Kona when the attack first started when he was in excruciating pain. When I asked him if he was in pain now, he said no.  He is saying some things that don’t make sense.  It’s like he’s talking in his sleep.  When he is fully conscious, he can participate appropriately in a conversation.

            Most of the day was peaceful.  I was exhausted from the shocks I had received earlier, suggesting that his condition was worse. At one point, I went out on this natural air lanai at the end of the floor.  I lay down flat on the cement floor and tried to relax.  Later I came into Mike’s room and put my head on his pillow, hanging my body over the edge of the bed.  T felt like we were sleeping together.  I could feel the energy exchange we usually share. This was the best thing for me.  I felt refreshed and ready to carry on. 

            At one point, we heard singing coming from the hallway. It was a group of parishioners from a local Baptist church.  Mike said he liked it, and we asked them to come into the room.  They did. They sang two songs.  Lord, they were lousy singers, but it was glorious, and Mike thoroughly enjoyed it.

            Two couples from the deacon formation class came to visit before they left for their outer island homes: Sandor and Meali'inani, and Av and Debra (sp?). They were great visits. Mike perked up and paid attention. He actually bestowed a blessing on one of the couples.  Hey, how about me. You never give me a blessing.

            While the deacons and their wives were here, the nurse started his blood transfusion.  He seemed to be okay. In fact, he was sleeping, so we all left.  I headed off to the ashram, and the others went to catch a plane.

            I arrived at the ashram at about 6:15. I was expecting a small group of people who would fit comfortably into the dining room, which accommodates something like 15 to 20 people.  There was a crowd there.  While only 12 people actually live in the ashram, there are many more people who follow this religion.  The food was delicious, and I had a long talk with a young man who was a follower visiting from St. Louis for a few days. 

            I may have mentioned that when I stopped by on Friday to scope the place out and locate it, so I wasn’t frantically trying to find my way at the 11thhour, I met some women in the dining room. Besides offering me food, one of the women said she would make a turmeric drink for me to help me with my stress.  Not quite sure what turmeric does, but I’ve heard it’s good for what ails you, and I was thrilled with the offer.  Indeed, she had prepared the elixir. It was in a bottle with my name written on it.

            After dinner, Govinda, the ashram manager, helped me bring my bags upstairs. My car was parked a distance from the front door because all the spots were taken when I arrived.  He suggested that I move it closer.  I did it with dread. All my accidents occurred when I’m driving under 5 mph.  It seemed like another perfect opportunity for disaster.  And, of course, I had an accident.  Making a right turn, I scraped the bottom edge of the side of the car on some decorative rocks.  Yikes! I don’t do well with right turns in broad daylight.  At night, I don’t have a chance.  Tomorrow I will have to send a picture of the damage to my Turo host. Hopefully, I can get the process of repair/insurance coverage started.  He can’t afford to have some of his cars out of commission.  This car is beautifully kept.  I have insurance coverage, but I feel bad about it.

            I called Mike again at about 8:30 pm.  He was awake.  He told me to get there as quick as I could and make them stop doing things to him.  The nurse was in taking more blood, and they had tried to put the bi-pap on him again.  I explained why the nurse was taking blood and that they weren’t going to put the bi-pap on because he didn’t want it. The idea behind the bi-pap is that he doesn’t have to work as hard on breathing and can sleep better. 

            The bi-pap must be considerably more uncomfortable than the high-pressure nasal cannula he has been using.  The bi-pap includes a mask that covers his nose and mouth.  But worse, it provides cold, dry air.  The nasal cannula has a system of warming and moisturizing the air.  I must be reasonably comfortable.  Despite Mike’s pleas that I get there and make them stop, I told him I had to get to bed and to sleep myself.  I try to remind myself that it is a good sign that he is bitching and moaning about his circumstances, not a bad one.

            While I was typing this up, the Krishna’s were downstairs singing their hearts out.  I was wondering how long it was going to go on and if I would be able to sleep well with it in the background.  It stopped around 8:30. 

            To bed, perhaps to dream.  . . . . I hope my dreams are joyful and full of promise. They will undoubtedly be full of love for Mike.