Monday, March 4, 2019

Good news: Mike was so happy here in Hawaii.  This was the happiest period of his life. What he had to give was appreciated by one and all here.  Thank you for your response to him and the great joy you gave him.

Bad news: Mike will no longer be able to give us anything from his enormous storehouse of knowledge, kindness, and love.

Now begins  MY YEAR of MAGICAL THINKING; hopefully,  mine will be more joyful than Didion's.

    Despite going to sleep late, at 11 pm,  and having just lost Mike, I slept well.  Yvette and I both woke up with the birds, as usual.  We went over to breakfast promptly at 8:30 am, unshowered, hoping not to miss the oatmeal again.  We were so distracted that both of us walked into the building without taking off our shoes, a requirement at the ashram. 

    I brought my computer with me, hoping for a better connection than I had in the cabin, and worked on Saturday and Sunday's entries.  

    Yvette and I spoke about the pictures Damon and Clarence had sent us.  We both saw something in them we hadn't seen before.  Yvette said Mike looked so happy.  She hadn't remembered him looking that way.  I saw a facial expression that I don't think I have ever seen before. To me, he was almost unrecognizable.  He was completely relaxed with an innocent, naïve joy on his face. I'm inclined to believe this is how he feels now, after his death.  It gives me much comfort to think that way.  If he's happy, I'll be just fine. 

    My biggest grief is not for myself right now, it is for the world at large.  Mike had so much left to offer in knowledge, kindness, and love. It feels like the loss of a young person who still had so much life ahead of him. 

    Dr. Izawa, the specialist in Mike's case, called.  He is back from his week and a half away at a conference.  He expressed his condolences. We talked a little about Mike's condition.  He said again, he might have tried to operate, but it was unlikely that Mike could have survived in his weakened state.  He told me that his lungs were so compromised from his time in the hospital, that surviving at all was unlikely.  

    I knew his lungs were a big problem.  I asked if he could have been saved if they but the nasal gastric tube in sooner and prevented bile from being sucked into his lungs the second time.  He had an NG tube in when he was in the ICU the first time.  He explained the problems with doing it as well as the issues with not doing it.  Nothing is clear cut. I'm glad to know this.  As grieving family members who are decision-makers do, I started beating myself up for what I had done and not done.  Was I responsible for his death in some way because I actually enjoyed my time alone when he was traveling?  

    I know that these thoughts are not rational. I believe they are driven not so much by assuming we have more power than we actually have, as neurologically driven thinking. We are social animals. When someone in our tribe is in trouble, we have to have an immediate reaction to help them.  Afterward, we have to think through what we did and did not do so we can learn from the experience and do a better job the next time.  The emotional end of the reaction is God-given so that we all work to preserve not only our own lives but the lives of others.

    Dr. Izawa also talked about how weird it was that he suffered from this disease.  The most common causes of pancreatitis are alcohol consumption and gall stones.  Tom, our friend who has been sending us encouragement, reminding us that he survived a severe bout of this disease, had gall stones.  He said he was told at the time that this problem could not lead to pancreatitis.  He is reading this, and I can tell him now that it is considered a common cause by the medical profession.   For those of you who don't know, the only alcohol Mike consumed was the communion wine at mass, and a very occasional glass at dinner, very occasional. 

    Another, less common, cause is high triglycerides. Mike's were somewhat high but not enough to be a possible cause of this disease.  Izawa said besides that there are medications and dialysis, but both of these are rare.  He said there is one other category, "I don't know."

Whatever Mike's case is weird. We'll just have to leave it that; God had other plans for Mike. I often told him while he was lying there, "You have done enough; you have been enough.  You don't have to do anymore."

    Now to get to work on funeral plans.  Fr. Lio had said it would be good to have his body, but that means getting him embalmed here in Honolulu and shipping him in whatever carrying case he has to be in to Kona – and then getting him cremated in Kona. How's that for a big deal?

            Today, I  made my  decision on how to deal with Mike's body – other than to have it resurrected at the earliest possible convenience.  Everyone on both sides of our family has been cremated, so that's a no-brainer. The question was should his body be whole and in a coffin for the funeral as Fr. Lio wanted. I was inclined to have his body embalmed, placed in a coffin, shipped to Kona, and then cremated.  I called to ask Damon what he wanted. Damon was clear: cremation from the get-go.  This means a funeral parlor in Honolulu will collect his body, cremate it and mail the urn to me.  Having him shipped whole to Kona is much more complicated, and expensive.  That left me wondering what I wanted.  I wanted a coffin because I wanted something to physically embrace. Damon said, "I bet they make urns you can hug." Within minutes, he had located  two options.  What a sweetheart!  That made letting go of my thoughts of having a coffin at the funeral much easier.  Mike won't be huggable anyway, and hugging a wooden box doesn't quite cut it.

     Damon called to tell me that Dr. Izawa called him too to offer condolences. Damon invited him to the funeral.  Izawa said yes, he would like to come. I think most people who met the people who visited realized that Mike was an amazing man before his illness struck and us.

            The date of the funeral has been decided. Fr. Lio called and told me that March 26 would be good because it would be an easy day for many priests to come. This was a weird coincidence because my dad died on March 26, 1956. It made me wonder. But, Damon wants the 30th because he, his wife and son, can come without his son having to miss another day of school.  The 30th it is.  There are priests Mike got to know well and I hope they can make it; but I can't imagine Mike needs priests he hasn't had extensive contact with to come. 

    I spoke to Jean, Damon's mother, today too.  She said she probably wouldn't make it to the funeral.  She had made two trips to Hawaii already in a month, each time Mike wound up in the ICU. These are short stays with long, long flights. It's exhausting.  I could understand if she said never again. But, we talked about the possibility of her coming for the funeral and staying a few weeks.  She and her husband have done that each year we have been living here, and did it when we lived in Ohio, too.  We are all good friends. Divorce is never great. Having parents and steps who get along and love each other is the best alternative. We talked about her coming out and helping me sort out Mike's stuff.

       On that note: some felt that in Mike’s weakened condition that he lacked dignity.  I object.  Mike never lacked dignity. There is nothing that could strip him of his humanity, of his integrity, and his ability to be a loving person, nothing. I take umbrage at the very idea that we only have dignity when we come from a place of strength and control. Yvette, our goddaughter, has posted pictures on Facebook, showing Mike and me together in bed at the end, and herself and Mike.  She not only had my consent, but she had my wholehearted encouragement.

     I spent most of the day at the ashram at a table in the sunshine and high wind, going through the mail Yvette brought from Kona.  Not knowing how long I would be in Honolulu, I became concerned that bills would mount up unpaid. I did them now because the paper weighed a ton and didn't want to carry them back home.

            Mike is the proud owner of some 3,000 books.  His will says he wants to leave it to the Seminary where he worked.  He originally wanted it to go to Mowgli, Yvette's brother, and our godson, but that seemed impractical. He rents, moves often, and frequently shares an apartment with roommates. Where would he put all those books? I called the rector of the Seminary.  He said they would take Mike's books, but I could hear the hesitation in his voice.  The seminary library is small, 3,000 books would be overwhelming.  He said he had at least 1,000 books himself.  That poor librarian.  I assured Mike that I would give his books to the Seminary, and they would welcome them.  Okay, so I lied.  I wanted him to go in peace and know that his will would be done on earth.  What can I tell you? The rector said he would ask the librarian and get back to me. Since I understood his ambivalence, I suspect he's forgotten about it, gratefully.  I will push.  I am thinking of others who would want some of Mike's books.  It means that the collection which he so cherished will be broken up, but this is the best I can do. 

      Yvette and I had lunch today at the ashram.  Lunch is better than dinner, mainly because it is the same food that is set out at lunch and sits there for the rest of the day.  I always found the food at dinner good, too.

    I made the decision to go home tomorrow.  No, I am not looking forward to walking into the house and finding no Mike to greet me after I have been gone for over a month. I am scared. 

    Lina, the diaconate secretary, made the flight reservation for me.  I thanked her and John Coughlin for taking care of that for me and saving me one unfamiliar task.  Yvette was able to get on the same flight home with a seat right next to mine.

    In preparation for going home, we had to pack.  We got all the shopping bags out of the trunk of the car and brought them to the cabin.  We laid everything out and put them in the hard suitcase Yvette brought, and the rip-stop nylon duffle bag Damon brought me on his first trip to Hawaii.  Remember, I couldn't take a suitcase on the ambulance plane and had everything in shopping bags.   I think we are good to go.  The only stopping point might be Honolulu Elsa, really a big white teddy bear I bought at Target. I do want to take it back home.  It had spent time with Mike in the hospital before Judy sent a little stuffed dog that looks exactly like our Havanese.  Amazing!

    My friend Jean called to say how sorry she was and how much she loved Mike and me.  For some reason I can't remember, she was at the airport one day with us when I dropped off Mike for one of his weekend jaunts. I got out of the car to kiss him good-bye.  Jean said she was struck by the love between us that she saw in that kiss.  She said Mike and I were soulmates. I like to think Mike and I worked for that relationship.  Yes, there was something there in our energy exchange in the beginning, but to keep that going took commitment and work. 

    Jean's husband, Randy, spent some time with Mike at the beach.  While Jean and Randy were sitting in their home in Tucson at the moment of Mike's extubation, he talked about a day he and Mike spent at the beach together.  He said they played together in the waves like young boys.  More testimony to Mike's capacity for love and joy.

    Yvette and I went over to the dining room at the ashram for dinner. Neither of us was very hungry.  I had some salad, and Yvette had a small cup of soup.  When we got back to the cabin, she told me that Josh, her husband,  had a device on his phone that allowed him to know where Yvette is at all times.  (No, he is not a control freak, not at all.  In fact, quite to the contrary. It just saves him from worrying about her.)  He told her that this app showed that she was frequently at a vegetarian restaurant.  He was puzzled as to why she would spend so much time there.  Yvette told him that it listed the ashram that way, which also functions as a restaurant. 

    I sat and wrote, Yvette did something with her phone. She's not a game player; she's a communicator. She is an excellent communicator.  She uses her skills to bring joy to all those she knows.  That is her intent.

Sunday, March 3, 2019

Michael David Ross: October 27, 1940- March 3, 2019, 8:45 pm

Good news: Mike passed peacefully on March 3, 2019, at 8:45 pm.  Hawaii time.

Bad news:  Mike is gone from our lives. 

    I slept well for part of the night and then more restlessly afterward. Yvette did get up at 4:00 am to join the Krishna’s for their morning meditation. She came back around 6 am and went back to bed. I didn’t realize that immediately.  I was out when she got back.

    Today was D-Day. We got to the hospital around 9:30 am.  We were told immediately that we already had a visitor. Jeff from the diaconate formation program was sitting with Mike. He left sometime after we arrived.

    I had made it clear to the staff that we wanted to have him off life support at 2pm. Around 10 am, I asked the nurse to remove any tubes he didn’t need to support life for the next 4 hours. I also requested that the bed be moved closer to the window so Mike could experience sunlight on his face, but not so close that Yvette couldn’t fit in on that side of the bed. The nurse asked us to leave the room for 10 minutes while they arranged the room.

    I took the opportunity to visit B.  I went down to the 4th floor ICU and waltzed into his room.  Only one problem:  there was a total stranger in there.  The nurse tracked B. down. He had been moved to the 2nd floor. He was doing much better.  Less pain and less pain medication. I didn’t stay long.  This was my last day with Mike, and it was there I wanted to be.

    Yvette sat with him more than I did. Writing has been a release for me, so I switched back and forth between writing and kissing Mike, and reminding him that he had done and been enough.  

    Then I asked if he could be shifted so I could get in bed with him early because I was so tired and hoped to be able to get some sleep lying next to him. Two nurses came in, shifted him, and I got into bed with him.  I thought I would fall asleep right away.  I didn’t; I couldn’t.  I usually can sleep anywhere. 

    Damon told me yesterday he wanted to say some final words to his father. He spoke of all the fun times they had together as he was growing up, and more recently.

     I was told that they would start the morphine drip to keep him comfortable 15 minutes to half an hour before they pulled the intubation tube. I think they did it around noon. 

    Deacon Clarence and his wife, Vi, came by shortly before two and sat with us. Almost precisely at two pm, the respiratory therapist came in to pull out his tube.  They warned us that it wasn’t a pretty sight.  I was lying next to him and covered my face with a towel. Yvette chose to watch it.  She said there was nothing gross about it, but it clearly made him uncomfortable.  His arm came up defensively higher than she had seen it move since she arrived.  But, after that, he was peaceful.

    I said what I wanted to say.  “I, Elizabeth Susan David-Ross, release you, Michael David Ross, from your earthly bond of marriage into the hands of God.” I thought if there’s a marriage ceremony where we were both there, there should be a ceremony for dissolving that marriage. While we may or may not be bound to each other forever into eternity, this earthly bond is surely over.  

    At three o’clock, which is the time of day that Christ died, Vi led us through the Divine Chaplet. This particular prayer is said to be helpful for the dying.  Clarence and Vi left after being there for quite a while. Their presence was a blessing. 

    Damon, Cylin, and August were on Facetime with us once the intubation tube was out.  He stayed in visual contact with us until Mike had clearly taken his last breath.  It was a long process: 6 hours and 45 minutes. (We had two cell phones, Mike’s and mine. We switched them out.) During part of it, Damon pulled up pictures he had of his father. He sent those to Yvette’s cell phone. We all shared memories of our time together with him and with each other. 

     After a while, it got boring.  The four of us talked about other things, Yvette was on her phone doing Facebook posts and taking pictures of Mike with me, with her, and with the three of us. I lay in bed and read the NY Times on my Kindle, something we did together normally. 

    I got up several times to go to the bathroom during the process. Each time Yvette had to help me.  The bar which blocks the lower body had to be lowered, and then she had to help me sit up. Around 6 pm Yvette went to the hospital cafeteria and got dinner for both of us.  I got out of bed to eat but didn’t finish the whole meal. The portions here are enormous.  

    Afterward, I got back In bed with Mike. I had been anticipating the process would be fast because he hadn’t been initialing any breaths on his own for days. The nurse even said he was stronger than she had thought he was.  God, I hope it wasn’t Mike fighting to live.  I asked her if he had any chance to live and if we should change direction. She looked at his vitals and said no. That was the hardest part of the waiting, not being sure I was doing what he wanted me to do and what had to be done to save him more agony. 

    The end came quickly when it came.  What was slow was watching his vital signs drop. His blood pressure kept dropping and dropping, finally at 60/30, and his oxygen rate to something like 62.  He seemed to be breathing at a consistent rate until he just stopped.  We thought he was through, but he took one more breath. We all noticed the time: 8:45pm.  The doctor didn’t come in for a while.  Understandably, Mike was not his priority in the ICU.  I think his legal time of death is something like 9:02pm if I remember what the nurse said correctly.

    Yvette and I packed up and headed to the ashram.  We stayed up for a while.  I wrote much of what is above.  We went to sleep around 11 pm.  

Saturday, March 2, 2019

WE HAVE SCHEDULED MIKE’S PASSING FOR SUNDAY, MARCH 3, 2019, 2 pm. HAWAIIAN TIME. 

WE HAD CONFIRMATION THAT THIS IS WHAT HE WANTS.   

Good news: Mike is heavily sedated and comfortable.  His limbs are relaxed. While his white count was up yesterday, they were able to bring it down with an antibiotic.

Bad news: There is no substantial improvement. He is still not initiating breaths on his own. They’re having to increase the vasopressors. 

    When I got up, my back felt much better already. Not 100%, but much better.  Yvette and I got up and dressed, and had breakfast in the ashram. Govinda, the ashram manager, was having his breakfast at the same time. He was talking a bit about the morning prayer service at the temple. Yvette asked about the time: 4:30 am.  She asked if she could join them. Me, not so much, thank you anyway.  I think I’ll just sleep in.  It may be just Yvette and Govinda at the service because when I asked him if all the residences of the ashram got up at that hour, he said, “I wish. Sometimes I’m all alone.”

    We headed off to the hospital, making a stop at the drug store. Yvette had to pick up a few things. At the hospital, we had no problem parking. On weekends, all the specialty services are shut down.  That means fewer employees and fewer patients. All you have on the weekends is hospital personal and patient visitors. 

    Mike was the same.  I see one difference: his limbs are more relaxed.  I don’t know if this means he prepared to surrender to death, he just doesn’t feel he has to work so hard anymore, or he just can’t work that hard anymore.  I kept telling him that he had done and been enough in his life.  He brought joy and love to so many people. Maybe he’ll allow people to give it back to him by allowing that love in as his current state. He and I managed that with each other.  We always remained affectionate and openly loving.

    It occurs to me that this is what people appreciate in children and animals: they, children and animals, have a high tolerance for our unconditional love.  As far as I’m concerned, being a loving person is the ultimate high.  I do it for very selfish reasons. I’m thrilled when someone is able to receive it as beneficial instead of intrusive, or worse, as a sign that they have power over me because I love them. What a waste! 

    I think too many people receive loving attention from their adult companions as a demeaning act. It says that the person considers them a child who has to be loved that way.  I thank God every day that I had Mike, and he could participate in a loving life with me.  My mom allowed us to love her, but we were never allowed to show her affection.  It was a source of great sorrow for me. 

    On the other hand, I have also experienced people extending a lovingness to me that I found inappropriate.  Too much, too soon.  Again, as in comedy, timing is everything.

    The ICU doctor came in the one with the inappropriate affect. He doesn’t seem so off the mark anymore.   He was not very optimistic about Mike’s chances but said he couldn’t say that there is no chance.   There are miracle turnarounds. He did say, however, that they would have to take him off the intubation breathing tube and put him on a trach tube.  There’s a two to three weeks limit on how long someone can stay on the intubation tube before there is degeneration, not sure if it’s of the tube or of the patient’s trachea. 

    The good doctor talked to me about choosing to let him die. I said something about how difficult that choice was. He tried to tell me that it wasn’t a real choice.  If it hadn’t been for medical intervention, he would have been dead five weeks ago when this disease first hit, no less more recently.  We were going back and forth with me saying it was difficult and him saying just think of it as nature taking its course.  Then something else popped up in the conversation.  I don’t remember what.  It became clear that he thought I was saying we were going to ask the hospital to keep him alive -forever.  I said, “Good God, no!  No! No! No!”

    Damon and I had plans to meet with the palliative care team once a week until he either got better or died, or we arranged for him to die.  Sadly, these were our choices.  Today, Yvette came in and said Damon had called her. He told her he was thinking of letting him go before  Dr. Izawa got back on Monday, or when we were meeting with the palliative care team on Tuesday  Now, Damon is ready to let him go, and the decision rests with me. That was a sock in the gut.

    Since I had that image of Mike wanting to come back sitting on the lanai receiving all that love, I am all confused about what to do. Also, I had a vision of his empty closet.  I had slept without Mike many times when he traveled to Oahu for diaconate weekends and to San Francisco for his classes on spiritual direction.  That’s nothing new.  But the image of his side of the closet being empty is too much.  That’s killing me.  Right now, I feel I want to hang on to him regardless – even regardless of what’s best for him.  While I’m the only one with the legal authority to bring an end to this nightmare for him, the family would be on me like white on rice if I were to consider having him live indefinitely in this condition seriously.  Besides,  not only would it be a living death, he would never be able to leave the hospital. I wouldn’t even have him at home on the lanai. No way,  would I allow that.  I would just have to go through my suffering like anyone else who loses a loved one.  

    Yvette went down to visit B in the 4th floor ICU. When she came back up, we went to the cafeteria for lunch.  I was hungry for meat and had a Japanese beef dinner.  The meals here are tasty and good for you.  One of the ICU nurses, a big chunky guy, complained about the cafeteria food.  He said it wasn’t tasty.  He preferred fried food.  Anyone still wondering why lots of folks in Hawaii are morbidly obese?

    This self-same nurse gave us some additional pieces of information.  They had been increasing his vasopressors (blood pressure medication to raise instead of lower blood pressure), and they have had to stop his dialysis early for the last several days because his heart rate ran so high.  Then Jeremy said, “His heart rate goes high during dialysis when you enter the room.” Really!!??? Now, it doesn’t go up when I’m in the room when he is not having dialysis. Yvette and I both feel comfortable interpreting that to mean that he wants me to get them to stop the dialysis.

    Mike has hated the process from the beginning.  He had a fistula in preparation for dialysis close to three months before he started the tri-weekly visits to the clinic.   His fistula never worked correctly. At first, they thought it was just a matter of having it ‘mature, ‘ become tough enough to endure the process. Mike’s poor left arm is still black and blue from their attempts to get the needles in. Fortunately, he had the dialysis port put in a few weeks before he got pancreatitis.  Otherwise, he would have been asking to be shot right then and there.  While dialysis was better with the port, it still was depressing as all get out. 

    Yvette made the routine somewhat better. While I drove him to the clinic, she picked him up and drove him home.  It was her idea.  We were going to have Mike drive himself there and back once he got used to the process.  It was Yvette who said no to that idea. She was correctly concerned about Mike driving himself at home at night after being exhausted by the dialysis. Thank you, Yvette. You indeed reduced my misery with the process; I think you made a contribution to Mike’s comfort too, and you two got to spend all that time together shortly before this tragedy hit us.

    Yvette took a break and went downstairs for some natural air and sunshine that wasn’t filtered through a window. While she was gone, Deacon Clarence and his wife Vi came to visit. They come regularly. When Clarence was talking to Mike, his eyes fluttered.  Holy cow!  This is the first response we have seen from him and a bunch of days.  His responses are muted because of his heavy sedation, not because he is naturally unconscious.  I jumped up and told Clarence to ask him if he wanted to live or die.  Clarence asked those questions and got no response.  Vi said, “Ask him if he wants to go to Jesus.”  When Clarence asked him that question, Mike raised his right arm a good four inches and banged it hard repeatedly.  This took tremendous effort because he had to move his arm despite heavy sedation. This was the confirmation I was looking for.  I now think the vision I had of Mike receiving love without any effort on this part was his vision of being with Jesus.

    I really didn’t know that the Christian concept of heaven and being with Jesus had any meaning for him.  It didn’t for me.  Christ is present to make my life on earth better and to make me a better person while I’m on earth.   It has nothing to do with the afterlife.  But, low and behold, asking Mike if he wanted to be with Jesus was a meaningful question for him.  All my ambivalence was resolved. 

    While this was going on, the Bishop of the Diocese of Hawaii came in to give Mike the healing for the sick, which is the same as the old anointment for the dying.  Mike has had it twice already in the first two weeks of his stay here.  My friend Judy said that it’s been a while, and he should have it again.  I’m so glad she suggested this.  I also had Damon and Cylin on Facetime while the Bishop said his prayers. They were both appreciated participating in this ritual.

    I had Clarence ask him if he wanted me in bed with him as he passed. He signaled something that said yes, at least to Clarence.  He may pass quickly because he has not been initiating a lot of breaths on his own, or he may take a day to pass.  Yvette and I are resolved to be with him together until the end, except for bathroom breaks.  

    Since tomorrow is Sunday, and many of the religious who have worked with Mike will be at mass, I asked Clarence what the best time would be when people could be free to reflect on Mike as he was prepared to be released from life.  It was Clarence who proposed 2 pm.  Two pm. It is. 

    I went to speak to the nurse to make the arrangements. Some people are commenting on how calm I am.  Well, first off, now that I know what Mike wants, any ambivalence I have been feeling is resolved.  Secondly, I’m in some altered state.  I feel that I have a list of things to do: clean the toilet, wash the dishes, kill my husband.  Yes, I am killing him.  It, unfortunately, is really my choice, and my legal responsibility.  I am as comfortable with this as I can be. 

    When I got back into the room, I told Mike, “Two pm tomorrow. We will take you off life support at two pm.”  He raised his arm slightly and banged it twice.  I read it as, “Thank you.”

    After a short while, the nurse from the palliative team appeared in the room to ask me how I was.  The ICU nurse must have informed them as to my decision. I think she was probably surprised by my state of mind.  I was exhilarated. After struggling with this decision, I felt I had a clear go-ahead.  The burden had been lifted.  I was going to do what Mike wanted. I was going to set him free from this misery.  I was so happy.

    After everyone left, I started calling people to give them the date and time of Mike’s release from life support.  I wanted all those who love Mike to be praying for a quick and peaceful death, a beautiful death. Lord knows, this man has suffered enough. I wanted Mike to feel that he is entitled to whatever bliss and peace are available after death because he has done so much good in this world – including being a wonderful husband.

    I was bouncing back and forth between Mike and doing various chores; checking on a funeral parlor, checking how I can get him back to Kona, thinking about when Yvette and I should leave Honolulu and head back home, planning to return the car and having to tell Keith, the Turo guy,  about all the little bumps with hard objects I had. 

    Then Yvette and I noticed that Mike’s brow was furrowed.  “What is the problem, my love?” What I got back was “Chaos.”  Now, Mike is a fighter of chaos. When we were first together, he would enter my somewhat messy room, move his arm in a sweeping gesture, and talk about ”Beating back the chaos.”  This is a man who needs order.  I’d wake up in the morning and start babbling about some psycho-social issue, either about individuals or some abstract idea that crossed my mind in the early morning hours.  He’d wake up and start planning the day. He’d be busy organizing chaos. 

    I laughed and reassured him that I could handle everything.  I told him that he would be in the morgue two hours after he died. I told him that I was already in touch with Fr. Lio, the pastor of our church.  I told him that Judy and I had already started organizing the refreshments after the funeral.  I was asking about how to get his body back to Kona from Oahu. Actually, it looks like I’m going to have to figure that out on Monday, but I was told that the hospital is prepared to hold his body indefinitely.  Wonder if they charge rent?  However, our 5 ½- week stay at hotel Kaiser Permanente has cost us a whopping $3400, period end of sentence.  My expenses staying here will probably come to about $5000. My stay cost me more with less constant attention from a series of experts in their field.

    Around 6:30 pm, Yvette and I left Mike and headed back to the ashram, had dinner, and headed to the room.  I called Judy to update her and to assure her we were all tucked in for the night safe and sound.    

Friday, March 1, 2019

Good news: Mike is heavily sedated and comfortable.

Bad news: They did an EKG because Mike’s pulse was so rapid and found some irregularities in his heart.  I think we are nearing the end.

    Yvette set the clock for 6 am so we could get up and do the laundry before we left for the hospital.  Forget that! Back to sleep, we went. We’ll try to leave a little earlier tonight and to get it done. While I’ve been able to change my underwear and shirt every day, my pants and sweatshirts (2) have not been washed for 5 weeks.  Hmmm!  I seem to do dirty well.

    I had a restless night. I felt Mike’s presence but also felt that he was struggling to decide whether to live or die. When I first felt his ambivalence, I was somewhat upset.  Here I had made my peace with his death, and now he was changing the plan. I thought that he wanted to live because of all the incredible love he was getting and witnessing.  I hadn’t been able to kiss him on the forehead much since he came to the ICU because I wasn’t tall enough to reach it.  I told the nurse my problem, and she said, “I’ll get you a stool.” Then I could comfortably reach over the rail and kiss his forehead for minutes at a time and tell him how much I loved him, what a beautiful human being he was, and how everything he had done in this lifetime was enough.      Struggling with myself to come to terms with his living instead of dying, I reminded him that if he did it for God, himself, me our marriage and the broader community – in that order, all would be well. Then I got this image of him sitting on the lanai with Elsa, our 12 lb. dog, on his lap just soaking in the sun and all the love that everyone had to give him. It was an exhilarating image.  For Mike to allow himself to receive without giving back would be huge.  He never quite understood my point of view that allowing people to give to you is one way to give to others.  As in comedy, timing is everything.  I was afraid to call this morning and have my image smashed, so I didn’t.

    When I got up, my back was good, even better than it had been. Yvette and I were up and dressed pretty quickly.  The ashram didn’t serve oatmeal for breakfast this morning.  There were two dishes with potatoes.  Ok.  Yvette enjoyed the spiciness of the food.  I enjoyed eating outside and looking at the banyan tree.

    The first stop was Safeway.  By now, I don’t need Lady Gaga to find my way around – a lot.  I picked up a box of envelopes because I have to mail a document, some trail mix, and 3 Hersey chocolate bars with WHOLE almonds.  Then off to the hospital.

    Mike was receiving dialysis when we arrived.  He certainly didn’t look different.  I did some kissing, and Yvette continued rubbing and massaging his arms and legs.  Yesterday, when I was kissing him, the connection was solid, and he became hot.   I’d like to believe there was healing going on.  (There was no sign that he was hot- and bothered.)  Today, however, the connection seemed weak.  I wasn’t sure what was going on.  Had I been dead wrong about his changed intentions? Was he focusing so hard on surviving that he couldn’t exchange energy with me?

    The respiratory therapist came in and told us that he was the same.  I had told Mike both interpsychically and directly that if he wanted to survive, he was going to have to start breathing on his own. The therapist said he was doing some of that.  It is possible to initiate the breath even when the ventilator is set to do it for you. In fact, when he was in the ICU the first time, they were going to remove the tube from his throat because he was breathing mostly on his own when he just pulled it out himself. Apparently, this is not an uncommon action because the thing is a horribly uncomfortable feeling.

    I was beside myself with joy at the possibility that he was, in fact, breathing on his own initiation.  Sadly, it came out he had been doing some of that all along, just not enough to count for much. Not only had there been no positive change, but his pulse was also beating at 160 a minute, and they were concerned for him.  They brought in an EKG machine.  The results showed some irregularity in the heart.  Mike’s heart was strong when we first arrived at the hospital.  If that is going, it means his body is so compromised by the disease, the heart can’t serve his body anymore.  It is possible at this point that he may suffer cardiac arrest.  Damon and I have said that we don’t want them to bring him back if it comes to that.  The palliative team told us that resuscitation probably wouldn’t be effective anyway.  No point in subjecting his body to more torture.

    Damon and I had agreed with the palliative team to meet with them once a week.  The appointment hadn’t been set up for this week.  The ICU nurse finally communicated with the palliative nurse that we wanted another conference. Gina, the nurse on the team, actually came to Mike’s room to talk to me.  Monday seemed to be out because the doctor was out of town, but she would be in town until Tuesday.  I called Damon, and he arranged a convenient time for himself.  I am available at any time. 

    I had told Damon that I thought we were nearing an endpoint.  I think he still wanted to hear it officially from the doctors.  We both want to wait for Dr. Izawa to come back and contribute some input.  I fully support Damon in what he is doing.

    I asked the palliative nurse would it be better if we let him die of kidney disease by denying him dialysis or letting him die of respiratory failure by removing the intubation tube and basically letting him suffocate to death.  She said the latter would be more humane.  They would give him morphine to relieve the discomfort and fear that would accompany the experience.  I also asked if I could be in bed with him holding him while he passed.  I don’t want to keep him back from leaving, I just want him to be filled with love while he goes.  I want being loved deeply to be his last moment on earth.

    I had already asked Yvette to stay until Sunday, now I asked her to stay longer.   I would like her to participate in this event.  She has known Mike since she was 6 years old.  She and Damon, who was three when they met,  bonded immediately. These two kids loved each other deeply.  The bond has not been as strong with them as adults – so far.  They have taken very different paths in life.  But I suspect that it will be strengthened by this shared experience.  Many relationships have had an opportunity to shift due to the circumstances. Most for the better and one for the worse. Well,  you can’t win them all.

    Today wasn’t just a day to visit with Mike,  Another part of our ohana was here, too.  Mike and I share a house with Yvette and her husband, Josh. We live upstairs, and they live downstairs.  Because the house is built into a mountain, we each live on the ground level with two ground-level entrances.  Brian, or B., lives in another building on our property.  We consider ourselves a hanai family, an ohana. 

    B. is recovering from surgery to remove a slow-growing tumor from his lung.  He was awake when I came down; he’s in the 4th floor ICU, Mike’s in the 5th floor one. I helped him call him grandson and his father to let them all know that he made it out of surgery.  While he was in pain, he was doing all right. 

    When I came back up, it was almost time to leave.  Yvette and I had to go early today to make sure we could do the laundry.  When I got to the ashram, I changed into a terry cloth bathrobe I had just bought and threw my two sweatshirts and pants into the laundry bag. Yvette went back to our cabin, fashioned a sarong out of a bedsheet, and threw all her clothes in, too.  (We had someone take a picture of us.)  She had only brought clothes enough for one day.  Now she was staying at least until Sunday and possibly longer.  She doesn’t do dirty as well as I do.

    We had the laundry in the machine by 6 and went to have dinner. Over dinner, Govinda told us that the Muslims created the word Hindu for what we now consider the Hindu religion. It is not the name they gave or give to themselves. It seems it was generated by the name of the Indus river.  I was wondering if it was initially a prerogative.

    After dinner, I threw our clothes into the dryer, and we both went back to the cabin. Yvette told me when it was time to pick the clothes up.  I did that.  I folded and sorted the clothes.  Yvette noticed her bra was missing and went back over to look for it in the dryer.  Winds up, she had left it in the bathroom.  Guess she’ll have to dirty after all.    

    I got myself ready for bed.  Yvette gave me another massage, heated up the heat pack in the microwave, and tucked me in for the night.  We were both asleep by 9 pm.  I’m telling you, sitting around doing almost nothing is exhausting.  

Thursday, February 28, 2019

Good news:  Mike’s completely off the TPN, the intravenous food supplement, and completely on something which is more like real food and goes directly into his small intestines.

During dialysis today, they got out 2.7 liters.  This is really good. They usually only get  1 l. to 2 max.

Bad news: The doctor said that the chance of Mike surviving is slim at best. Mike still looks and feels like he has given up and wants to let go.  

He continues to need vasopressors to up his blood pressure during dialysis.  His pulse went high while in dialysis.  Not a good sign about his response to life saving measures.

            When I went back to the cabin last night around 8, I nearly tripped over a raise piece of cement on the walk.  That I was able to catch myself on the way down is amazing. Thank God. The first thing I did was open that hot/cold pack, put it in the micro wave, and lay down on the bed to apply the pack to my back.  I woke up at 12 midnight. I did some before bedtime prep work, like plug in my computer and my phone. Then I went back to bed.

            I woke up this morning close to 9 am feeling surprisingly better.  Apparently, the hot pack and the Ibuprofen did the job, My back’s not 100%, but much it’s better.  - or maybe it was coming to terms with Mike not wanting to live – if that is really the case.  Who knows?  I’m just doing the best I can, listening to the peaceful voice in myself. 

            My phone had binged as I lay in bed. When I finally got up to check, it was from Yvette. She said she had decided to come over. She would be staying overnight.  She was catching a 9:45 am flight. I got to the hospital before she did. When I texted her to see where she was, and told her I would be waiting her on the 5^th floor by the elevators.  I didn’t want her going directly in the room.  The dialysis nurse would be disconnecting Mike, and at that point everyone has to be suited and masked or out of the room. She was still waiting for the free shuttle to the hospital. 

            When I texted her again asking where she was, she told me that she had already been waiting for 45 minutes.  I went down to the first floor and located a shuttle schedule.  She must just have missed the 11 am departure. The next one was at 12:30.  I told her to take a cab.  

            I was waiting for her at the front of the hospital by that point. I saw the cab arrive and greeted her.  I had left my wallet upstairs, so she had to pay. I will pay her back.  The first thing she said was that she knew our relationship wasn’t perfect, but she felt she had to be at the hospital to affirm her commitment to me.  I am so lucky.  The kinks in our relationship can be worked out over time because we both want to do that. No worries.

            I call Yvette my goddaughter, but she is really only my Hanai goddaughter. I’ve known her since she was 31 days old when she moved into an urban commune in Brooklyn along with her parents. Her family moved out after two years, but I had a close relationship with her mother, and so my relationship with Yvette continued.  Yvette and I both feel that we bonded almost right from the beginning. 

            Yvette’s birth parents were both dead by the time she was 11. Her maternal grandmother asked Mike and me first if we would take her and her younger brother. We, of course, said yes. Then her maternal uncle, who was living in the Philippines at the time with the military, jumped on a plane and came to get the kids.  Since her uncle and aunt were available, their grandmother took that option.  Fortunately, their aunt/adoptive mother continued to include me in the kids’ lives.  Again, very lucky.

            When she and her family came to visit us from their home in Texas several years later, when Yvette was 14, she said something remarkable to me.  It was just the two of us watching a PBS documentary about grandkids helping to take care of their grandfather who had dementia.  He had slowly been declining. It finally came to a point where he was incontinent. The grandkids were asking if  this was the point at which they should put him in a nursing home.  A granddaughter-in-law said, while holding her 8-month-old baby, “If I can change my baby’s diapers, I can change his.” Yvette looked at me and said, “I’d do that for you.” Wow!  

            The next  year when she came to visit, I reminded her of what she said, assuring her, “I in no way expect  you to carry through on your promise.  I just want you to know how much it meant to me that you would even say such a thing to me.” According to her, that was the  year she did make a commitment to take care of me, and Mike, in our old age.  She has never backed down from that promise she really made to herself.   She actually said to me at one point,” I hope you made it clear that I’m the one who will take care of you to Damon.  I don’t want to have to arm wrestle with him over it.”

            And where is Yvette now in this plan?  In 2010, Mike and I bought a house in Kailua Kona, Hawaii with Yvette and her husband.  In 2014, Mike and I finally retired and moved here. Mike and I have had busy, fulfilling lives here while living here. Josh and Yvette have built their own lives.  We are separate but gently overlapped.  Things were a little rough in the beginning, but they have been slowly and steadily improving. Everyone is committed to working it out; we each work to respect each other’s point of view. 

            After Yvette arrived at the hospital, we went upstairs to the hospital cafeteria. I originally only wanted an orange juice, but once there, realized I was hungry and wanted a full lunch.  The lunchroom was crowded and we had trouble finding a free table. One became available that had a view of the valley and mountains.  

            After lunch we went to Mike’s room. Yvette, who is a certified massage therapist, got to work gently on his body.  Because he was arranged leaning pretty far to the left of the bed, I could reach his forehead easily and plant some kisses.  We both could feel him relax as we were delivering our own kind of loving.  I could feel Mike’s energy again.  I don’t know if he is saying he wants to live, or if he took my word for it and accepts that I am just offering him comfort while he is still with us.  Either way, he is allowing me to connect with him energetically again. Whenever we make physical contact, there is this amazing, loving, healing exchange of energy. It was there from the beginning, the day we first hugged in our group therapy meetings.

            When I first experienced this exchange with him,  I thought, “Damn, here’s another man who is going to interpret this exchange as purely sexual.”  While it can be transformed into sexual energy, that’s not what it is. Mike was the first man to recognize that. He told me that he saw me as someone who would take care of herself, and be able to be concerned about others as well.  It’s the way I wanted to be seen; and, clearly the person I wanted to be.  Mike has helped me to become more of that person that I always wanted to be.

            I told him again that he is free to make either choice, to fight for life or surrender to death.  I would be good either way. However, between what the doctor has to say and what I’m experiencing from Mike, I am feeling strongly that he wants to and will die.   I am looking at releasing him sometime early next week.  I am hoping to be able to lie by his side as he goes.

            However, I would like them to try to get him to breathe on his own again.  This requires reducing the sedating Propofol. I would love to be able to communicate with him in a more concrete way than my psychic perception to find out what he wants. 

            Bryan, who lives on our property, texted Yvette to say he was at the hospital.  Yep, two of the 5 people on our property will be in the hospital as patients tomorrow, and two more, Yvette and me, as visitors. B is having major surgery in a clear cell tumor, also called a sugar tumor. It is cancerous and very slow growing, and rare.  He  will have surgery through his back, moving his ribs around in some horrible way. After the surgery, he will be in the ICU on the 4^th floor, if they have room down there.  If not, he will be here in the 5^th floor ICU on the same floor as Mike.  

            I spent some time today telling Mike that whatever he had done in this world, it was enough. He was enough. I could feel him relax.  He works hard to be a good and giving person. I don’t think he appreciates how successful he has been on his mission. His problem is accepting the love, and the praise, that other people want to give him. If he does make it back to life, I hope this is one of the things that will have changed about him.  I hope he learns he doesn’t have to earn anyone’s love; he just has to accept it. Or, go to his death peacefully.

            As usual, I convert all my experiences into some philosophical concept.  This time my attention turned to the difference between an adult’s capacity to love versus a child’s. 

I think the difference is that a child’s love is all greed.  It’s all self-centered, but innocently so.  It is so attractive in a young child.  What a loss when they become self-conscious and can no longer accept all the love we have to give them, but require us to stand back, or they become annoyingly demanding, and we feel we need to push them away.  

            An adult, however,  is expected to be able to think of others.  If they can’t, that becomes a pretty unattractive, unpleasant person. But, we still enjoy hearing about people who are outrageously for themselves.  They are wonderful people to watch- from a distance, not such nice people to be around.  As an adult, we have to do everything not just for ourselves but also for what is best for those around us, not just for their sakes or for the sake of being a good person, but for our own sakes. My sense of well-being in linked to the well-being of others. I don’t live in a vacuum. It is the only way to live fully.  I doubt we can be perfect at fulfilling these objectives. We just have to take our best shot, hope for the best, and accept that we sometimes do damage to others. Death, disappointment and  hurting others are the inevitable. ( I do believe there are people who avoid taxes.)  Really living, joy, satisfaction, even gratitude, and doing things that truly benefit others are experiences which are not guaranteed in life. Those we have to work for.

            While there are some adults who only think of themselves, there are others who pride themselves of always putting others before themselves. We always have to think of ourselves.  If we deny that we do, we are merely using people to satisfy our own needs to be needed to be useful, or to prove we are good people. I think that is also a huge mistake, as much as it is for those who only think of themselves and say the hell with others.  These people cannot see others clearly because they don’t see themselves clearly. They are unhealthfully merged. 

            I have a funny story that illustrates how damaging that can be.  Many years ago, I joined a group of people through the Quakers (Society of Friends) who were organizing a commune, (where I met Yvette and her parents).  I had to attend a meeting to be accepted by the group.  It wound up being a special meeting to evaluate if they wanted one of the early members to be expelled.  He was not in attendance.  I remember one member, Art Clymer, saying the following, “I don’t want to be asleep or at work and have to worry about what Carl is doing for my good.”  I think Carl represented an extreme case of focusing too much on what’s best of others.  That means he was overly ego involved in what he was doing. He never acknowledged his own selfishness that prompted his actions.

            I have told Mike that whatever he chooses to do, live or die, he must do it for God, for his own sake, my sake, the sake of our marriage, and the sake of the larger community he’s touched- in that order.  All those factors must be taken into consideration, and we have to put ourselves first, right after God. If it’s otherwise, something will be terribly wrong.  Not that there is any one way to get it right.  I just know the difference between calm knowing and anxious doing.  While I am often guilty of the latter, I much prefer the former.

            Yvette and I left the hospital, and headed back to the ashram a little later than I had wanted to.  B was at the hospital visiting Mike too , and we were all having a good time together.  I had wanted to do the laundry while we were having dinner, but we had to be there earlier to pull that off.  

            Shortly after we entered the dining room, Hari, from Bulgaria, and Jamie, a born and bred Hawaiian, entered to have their dinner.  Jamie is the one who brought me flowers one day. Hari is somewhat more standoffish. He is just visiting and  will be going back home to Bulgaria sometime next month.   Jamie announced that they would be coming to the Big Island sometime in March so Hari could see it before he left.  I proposed that they can stay at our house.  Hari was somewhat appalled.  Jamie commented Hari wasn’t used to the aloha spirit of Hawaii yet.  Yvette, who was sitting right next to me, made sure they had her number so they could being touch with her when they were planning to come. She got the same vibes off them I did.

            It was too late to do a laundry. The folks say no laundry after 8 pm. The machines are right by some of the sleeping quarters for the members of the ashram. They get up at 3:30am; they go to bed early.

            Yvette and I went back to the cabin. Yvette got her first peek of the huge banyan tree by moonlight. Yvette gave me a massage to help my back.  Problem is when my back muscles get stimulated, their first response is to get more painful.  I was all prepared for bed so all I had to do was get in it. Not an easy feat when I have back pain.  I managed it. Yvette heated up the hot pack in the microwave, helped me put it in place. Right before I fell asleep, I told Yvette that I wished she was staying longer. Her plan was to go home Friday night. She said she love to and she’d change her plans to stay for the weekend.  We’ll see how it goes after that. 

Wednesday, February 27,2019

Good news: His blood pressure was a little higher, stayed higher longer, and never dipped too low, so they actually had to stop the dialysis. This was accomplished on only a little bit of medication. His white cell blood count came down from 35 yesterday to 28 this morning.

Bad news: The BUN, blood urea, and nitrogen count are high. Therefore, Mike is going to receive dialysis 6 days a week instead of just 3. O.W.! But hopefully, it helps.

He has a rash along the sides of the body, which the nurse just discovered today. It may be a reaction to some medication, or it may be stress-related.  Good God, is there any other form of torture available that has still been left off the table, and we can look forward to.

He didn’t respond to commands like, squeeze my hand, thumbs up, wiggle your toes and open your eyes after being off the sedative for an hour.

    Boy, I had a lousy night’s sleep last night. I felt like I just dozed the night away instead of sleeping deeply.  I was worried about Mike.  I am usually able to set aside my thoughts about him, but not then. I’m worried that he has given up. He feels more distant to me. Of course, there can be a possible interpretation. I believe Mike is more emotionally dependent on me than I am on him.  This means, if he dies, I think I will build a new life, but if I died before him, I think he would fade pretty quickly. This may be a pattern among men in general.  Me and my big mouth.  Hopefully, I won’t have to find out.  There is no question that I will miss him beyond words.  We have been so good to and for each other. Most days have been a pleasure.  Now, this does not mean we haven’t had fights, nor does it mean that there have been bad days, even bad years when we were distant from each other. 

    The question now is why do I feel he is at a greater distance than usual. I can think of two reasons: the first is he is working on dying; the second is that he is finding his spiritual center and connecting more to God and needing me less but can still go on with life.

    I think he experienced a change like that when he lived in D.C. while he got his Ph.D. and I stayed in Princeton.  He left on Sundays and came home again on Thursdays during the semester. He learned that he could be fine without me.  That was good, but we had to renegotiate our marriage.  Finally, it worked out.  If we go through a phase like that again, I will slam us into therapy pretty quickly.  I don’t need him to be dependent on me, but I do need him to enjoy loving me and enjoy being loved by me.  I also need laughter, silliness, comfortable silence, and great hugs and kisses.

    Mike had 2hours of dialysis left when I came in.  He does 4 to 4 ½ hours each session.  The BUN ratio (blood, urea, nitrogen) is bad.  This basically means his blood is very dirty.  Usually, we can count on our kidneys to filter all that stuff out and send it down the correct shoot into the toilet.  But, Mike’s kidneys are no longer in operating condition.   

    The dialysis nurse today was Daphne. Lovely woman.  She was one of the people who helped me crawl into bed with Mike when he was having a dialysis session when he was on the second floor. While some of the dialysis nurses are cold and indifferent to the needs of the patient and family, Daphne is the exact opposite.  She also had pancreatitis.  She was much younger and had a much milder case; she was only in the hospital for 10 days.  However, she was pregnant at the time through IVF and lost the baby. She said there is some connections between IVF and pancreatitis. The pancreas seems to be a testy organ. 

    After the dialysis was over, the nurse dropped the Propofol dosage hoping Mike would wake up, and they could try another round of spontaneous breathing.  They were trying to get him off the breathing tube.  No significant response.  He could bang his hand, but that was it.  He couldn’t give a thumbs up and couldn’t nod his head yes, or shake his head no. His pulse went way up, indicating he was anxious, and the nurse put him back on the Propofol. Not a happy moment.

    One of the ICU doctors came in.  This guy missed the course on Bedside Manner 201.  He starts out stating abruptly, “ I’m sorry. Your husband isn’t improving.” I looked up, startled. “What does that mean?”  “Well, I was hoping he’d be off the ventilator by now.”  I still look a little confused. The good doctor, who may, in fact, be an excellent doctor, has no idea how to talk to people.  I suspect from his affect, he may be on the autism spectrum. The poor guy actually said to me at one point, “I was trying to show understanding.” Ow!  I ran into this guy before.  I thought he was a control freak.  Now, I see he has other problems. I will remember to cut him more slack and try to remember not to freak out when he presents his information in this cold, abrupt way. I actually said to the nurse that I would cut him more slack next time because of what I suspect his problem was.  She smiled but said nothing else about him.  What she did say is that the ICU has been going crazy for the last week.  They have no more room, and the people who are coming up here are really, really sick. They are all intubated and on high doses of sedatives.  She said she has never seen it so crazy. Apparently, sometimes people come up here who are recovering from a stroke and need to be observed more carefully but are otherwise in good shape.

    At some point in the afternoon, I stepped outside Mike’s area to speak to his nurse.  “You’ve been working here for a while. Do you have a sense when people have given up?” She nodded in a way that made me know she was answering my question about Mike, not just a general question.  Between almost my walking out without saying my usual good-bye on Sunday or Monday night, my disturbed sleep on Tuesday night as I felt him slipping away from me energetically, and his inability to surface from the anesthesia so he could breathe on his own, I had the strong feeling that he had given up. 

    I went back to the room and spoke to him directly.  I told him I wanted what was best for him. If that was death, I was on board.  I reminded him of what I said when he went off at the age of 54 to start his second Ph.D. in Washington D.C. when we lived in Princeton.   I told him if he did his work for God, himself, me, and our marriage, in that order, we would be fine.  At first, he thought that was a totally bogus idea.  Fortunately, I said it in front of a friend who he was prepared to listen to.  She said, “Yes, she’s right!”  Mike and I both did fine for the 7 years he was away during the week studying, and our marriage survived that separation.  And, even more importantly, it created opportunities for Mike that made his life so much better, and as a result mine.  We both thrive on each other’s happiness.  Fortunately, envy is not big in our psychological lives.  If someone else is doing something that I think sounds good, it means that I can do it too if I really want to.  Of course, I have to put in the effort and stick-to-itiveness. 

    When I was through telling him he could go and I would be all right, he managed to tap his arm twice, forcing himself to surface through the maze of sedatives.  I took that to signal, “Thank you.”  As I see it, the more I assure him I will be all right, the more he let’s go.  I think the start of his release came when he overheard Damon and his wife, Cylin, talking among themselves about what an amazing job I was doing taking care of myself.  Once he had some assurance, I would be all right, he could relax.

    I also told Mike that I wanted to be by his side when he died.  I feel it is a significant moment in our marriage, something we should share.  In this case, very much like our marriage, it will be a mutual decision.  This will have to be a joint decision too because we will have to decide to take him off life-support and let him go. I reminded him I cried at our wedding, too. 

    I left at 6 today, a little earlier than I usually do. I stopped off at Long’s Drugs to pick up a hot/cold pack.  I got the one with those ‘peas’ in it, and some Ibuprofen, which Dorothy said might be better for my back problem.

    When I got to the ashram, I left my stuff in the car and went in to have dinner.  Lasagna night.  The food is delicious.

    I also found a woman who said I could call her if I ran into problems getting dressed in the morning. At first, she said she couldn’t because she had a lot of responsibilities in the morning.  Govinda had said something comparable when I asked him if there was someone I could call for help getting dressed if I needed to.  These responsibilities are to the deities.  They bathe them, dress them, feed them and decorate them with fresh flowers.  It sounds like a lovely daily activity. Such an opportunity to pour out love.  Maybe I’ll find something to do like that for once Mike is gone. I  need something to pour my love into, something that won’t find my attention intrusive.  Apparently, the woman was concerned that I would require an hour.  No, only five minutes to help me get my pants on.  I wasn’t able to reach them in the morning.  Fortunately, I had Dorothy to help me.  She told me to order a hip kit.  Must do that.

  

Tuesday, February 26, 2019

 Good news:  His coloring is good today.  He looked kind of pasty yesterday.

They have been withdrawing him from blood pressure medications, called vasopressors, to RAISE his blood pressure; he has been holding on.

No fever.   His vitals are pretty stable. There is a good possibility that the outright destruction of his pancreas has stopped.  

Bad news: They couldn't get him to breathe on his own.  He became too anxious.  This is not uncommon.  Nobody says, "Yay! Please, intubate me. "It's a pretty unpleasant feeling.

    This is the second day when there is an increase in his white blood cell count.  This suggests an infection somewhere in his system.  

   

     I mentioned the great meal Dorothy, and I had at the ashram, but I forgot to mention that I scraped the left bottom of the car on a set of low border defining rocks the way I scraped the bottom edge of the right side of the car. How fast was I going?  Very, very, very slowly.  It was dark. I couldn't see the rocks.  I missed the tree. That's pretty good

    Dorothy and I slept in the cabin together.  She took the single bed, and I continued in the double.  We both slept well.  I think I slept particularly well remembering Mike's telling me to cut the bibble-babble and smiling impishly when the men in the room laughed.  Never been happier to be told to shut up.

    Dorothy was delighted to be sleeping in the environment of the ashram for free instead of the fancy hotel that cost $250 a night because of some deal Damon finagled, and usually costs about $300 a night.  The 'room' is a  free-standing cabin with two beds, a bathroom, a small kitchenette, and a desk. This room includes free meals for Dorothy and me..  Dorothy was complaining that she had had an omelet every morning at the hotel.  At the ashram, she had delicious oatmeal, and some foods she had never had before.  They only cook Asian Indian food here, and they cook it well.

    Our first job was going to a UPS store to get rid of a brace of socks I bought from Amazon for Mike to keep his feet warm.  They didn't sell a single pair, I had to buy six.  The brace of six came to about 1 foot by 8 inches.  Really? All seemed a little overkill. The UPS was nearer to the hospital than to the ashram. You would think that there would be UPS stores all over Honolulu, but no.  When we found it, it was in a Navy PX. 

    I needed some code from Amazon to complete the mailing. Because my phone broke, and August placed my sim card in Mike's phone, I didn't have access to my email on the phone I was using.  The UPS store didn't have free Wi-Fi. Dorothy and I had to go to a food court in the PX to get the Amazon code to give to the UPS folks.  I took a shot of it on my phone, and we returned to the store.  It took all of two minutes once we had the necessary information.  Then off to the hospital, which was a mere 7 minutes away.   

    When we arrived at the hospital, the parking lot only had 3 spaces left. I let Dorothy out before I turned into the lot so she could go up and be with Mike.  Jean had already arrived.  She was going to spend the day there until she had to leave for the airport for her return flight home to the NJ.  I came around a bend to find a car just pulling out on the 4th level. I parked and went upstairs to join them.

    I knew already that they had tried to take Mike off the ventilator to get him breathing on his own in anticipation of extubating him, finally getting that tube out of his throat. But that didn't work.  He became too anxious. Not an uncommon reaction.  They put him back on support and increased the Fentanyl so he could be comfortable.

    I had called to make an appointment with a doctor in a clinic for myself today.  I have a bad back that hurts with any up/down motion, but other than that, it's only mildly annoying. I'm not sure if it is due to injured soft tissue, or if I've done something to one of my spinal disks.  Also, I have been running high blood pressure.

    I discovered the high blood pressure that last time the family came to Hawaii in response to Mike's first trip to the ICU.  Jean and I shared a room and she had a blood pressure gadget to monitor her own blood pressure.  I did mine on a lark and was rather appalled by the result. 160/95. I called my primary care physician in Kona immediately and asked her to prescribe medication.  She was able to order it so I could pick it up here in the hospital, since she is part of the Kaiser system. I started with one pill a day.  I also bought a blood pressure monitor for myself, and was observing that my blood pressure seemed to love those high numbers.  I contacted my doctor again, and she recommended that start on two pills a day.  The assumption is that I have higher blood pressure because of my current circumstances, and we can drop the medication once my life levels off.  But, my blood pressure is not responding to the medication. It's not going much higher, but it sure isn't coming down.  The doctor I saw today recommended that I increase the dosage again.  The clinic was only 7 minutes from the hospital, easy to get to. Although not understanding the parking lot, I wound up parking in the staff lot instead of the patient one.  

    I had made my appointment in the morning before I left the ashram. When I got to the hospital, they told me they would take him down for a CT scan. Scheduled around the same time as my doctor's appointment.  Perfect.  We would both be out around the same time.

    I thought I would have a long wait at the clinic, but there was no one waiting to see a doctor.  I was in and out pretty quickly.  The doctor tested my leg strength to get some idea of what was going on with my back.  I came out hunky-dory, strong legs.  I told her I wanted an X-ray to check there was no spinal damage, like a ruptured disk.  She ordered that.  I went down to get the X-ray. There was a lovely surprise in the X-ray area, a hand-painted wall with scenes from Hawaii. But, this wall didn't look like the usual art commissioned by Kaiser.  When I commented on it, the X-ray tech said he had painted it in his free time.  The wall would come down.  It was up to hide construction on the other side. 

     After an hour and a half, the technician also allowed me to see the X-rays. I'm not an expert,  at least not yet, but I didn't see anything that looked bad. That was a relief.  However, maybe there may be a nasty surprise in store.  The next step may be to get to a chiropractor, but I'm not sure. Don't want one that is just going to look at my spine and not my soft tissue.

    When I got back to the hospital, Jean had already caught the shuttle to the airport to catch her plane. We had said good-bye before I left, anticipating that I wouldn't be back in time. This just leaves Dorothy and me of the family group.  I will miss the company.  Not just for myself, but because I think Mike enjoys listening to our conversations. 

    Mike had a visitor today, Will from the diaconate program. He has apparently visited several times.  He was great company.  Dorothy, Will, and I had conversed about many things.  I believe Mike enjoys hearing conversations. Will's contributions were particularly interesting.  He was telling us that the Polynesians discovered every inhabitable island in the Pacific Ocean.  How in God's name did they do that?  Take a look at your map. The Hawaiian Islands are small dots in the middle of this great body of water. In retrospect, I don't think Will and Dorothy were standing close enough for Mike to hear them.  I think the people holding the conversation should be sitting on either side of Mike's bed so he could hear.  The nurses always deal with people as if they can hear, no matter what state they are in. They tell him what they are about to do. "I'm going to take some blood from your middle finger," while holding his targeted hand. "Now, you'll feel  a small prick."

    While Will and Dorothy were talking, the nurse allowed me to look at the results of the CAT scan Mike had. That's where I read the report that the pancreas may have done its worst. Mike's case is so severe, they calculated it would be a least three weeks before they could be even a possibility that the pancreas had done its worst, and the attack wouldn't kick back in and do more destruction. So, after 5 weeks, this is very good news. Even better, there seems to be some pancreas left. I'm not sure how much.

    I have had some conversations with Mike, I believe he has been saying he wants to die, but I'm not sure.  My response has been, "Not yet, not while there is a chance you can have a life after this disease." But I assure him that if there is no chance recovery, Damon and I are in complete agreement about letting him go.

    Some have asked if Mike really wants to die.  I don't know.  I do know that there have been times when I have been violently nauseous, I have wanted to die. Mike is clearly suffering.  He wants his suffering to end.  I can appreciate that he can't see an end to it at this point; it's gone on forever. If it weren't for our information from Tom, I doubt any of us in the family would be able to contemplate an end to it. How could a situation that has gone on so long get better?  This is a question we continue to ask. It's hard.

    Because I am concerned that Mike cannot envision a full recovery, and feels he would not want to live a half-life, I called someone who I thought would be an expert on end of life issues for the Catholic Church.  I had two questions: first, it is part of Catholic doctrine to allow someone to die by denying life support.  The answer is,  yes. You are not required to use extreme measures to save a life.  The second question was: if Mike survives and decides after one or two years that the life he is living is not worth it for him, can he refuse dialysis and allow himself to die from end-stage kidney disease.   The answer to this was also, yes.  I told this to Mike.  I am hoping it will give him the courage to face what he has to go through, which is a tremendous ordeal.  I have told him that he is truly suffering a misery.  However, tough noogies. I will not pull the plug; neither Damon nor I will pull the plug until it is clear that there is no more hope. Again, I thank God every day that I learned Vipassana meditation techniques.  It has taught me how to sit with the pain of others without suffering from sympathetic pain.  I could never do what I am doing if I didn't have this skill. Never. 

    Some people are writing that what I am doing is amazing.  I think that many of you would and will do something comparable in your lifetime, or already have. I hear stories from you taking care of family members that are ill, and I am amazed. Yvette's mother-in-law took care of her aging parents.  Her mother had Alzheimer's. I was a very difficult situation, but she always handled it with grace and compassion. I wanted her to write about her experiences so she could help others in a similar situation.  She didn't do that. I'm writing about mine, minute by minute. I am documenting what I'm going through.  And, the act of documenting it is making this whole process easier for me. That I have people out there reading it affords me some, I don't know what, satisfaction? distraction? comfort? pride? pleasure? All I can tell you is that it feels good that people are interested, learn from what I write and many are actually enjoying it.  It does a lot to  , , ,  I don't know what, but I do know that it makes this experience easier for me. Thank you.

    Dorothy and I left the hospital at the usual 6:30 pm, went to the ashram for dinner.  Dorothy was again enthralled with the food. She bought a cookbook. She asked people how they made certain dishes, what spices are included, etc.  Me, not so much.  I eat the food, enjoy it more with each passing day as my palate becomes more familiar with the tastes,- but cook it?  I don't think so. I don't cook.  Mike has been my cook all these years.  He loves to cook, and I love to wash dishes.  It is a match made in heaven.