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.