NOT DECIDING IS A DECISION TO GET WHAT YOU DO NOT WANT

When I was a teenager, I was a good swimmer - even made the high school swim team. The summer I turned 15, the people who ran the Denver University pool where I hung out asked me to join their Junior Water Safety Instructor course, which would lead to me working with the adult WSI’s. I said yes.

It was interesting, learning how to save a life. But the lesson that has stuck with me through all the years since then was the last lesson, the lesson the instructor told us was the hardest lesson to learn: It’s Not Your Job To Die. He taught us how to get out of the “death hug” of a drowning person who was too terrified to let themself be rescued. It was our job to get out of that, to survive, while that person made the choice they did. To recognize that the situation was beyond our power to affect.

That is a lesson that goes against every human instinct. That’s why it’s important. There comes a moment where you must turn aside and not go over the cliff, regardless of what happens to the other person.

In 1987, my parents came out to visit me, in what would turn out to be the last time I would have time to talk with my father at length. Even my mother had to admit that I must be doing something right with this crazy idea to give up that “excellent job” I had in Sacramento and come to Los Angeles and try to be a writer. They both liked my little house on Mount Washington, easternmost of the Hollywood Hills.

The last day before they left, I had the next-to-last conversation I would ever have with my father. We were sitting in Griffith Park, and he told me that “when my time comes” he did not want extraordinary measures taken. My response was to tell him, “Please write this down and tell people where that paper is.” I did so because I had just “been there” for a friend whose parent hadn’t done that, where he was the only family member who knew what was wanted, and was confronted by all the rest of the family, all of whom were arguing that he wanted to “kill” his father.

As it turned out, he didn’t write down his request. When he collapsed the following April and went into a coma, there was no way for him to tell anyone what he wanted. I got there, and it was another Cleaver Family Fakakte. My sister and her husband and son (my good nephew David) had come to Colorado for a skiing vacation, and she was most put out that all her plans to have fun were being ruined by this event. That was during the “Mormon Convert” era in their home, which my father had not approved of. So they were staying in town separate from the rest of us, and making sure to visit the hospital when we weren’t there, a “treaty” I worked out that was probably as difficult as anything Biden and Putin could engage in.

My brother and I were staying at my parents’ home, and the three of us were visiting together. That mostly involved sitting by the bed and staring at my father. On the third day of this, my mother and brother went down to the cafeteria to get something to eat, while I stayed with my father.

And that was when he came out of his coma. He couldn’t talk, but he understood where he was and what was happening. I established I would ask him yes/no questions, which he could answer by squeezing my hand - and “yes” was two squeezes, to be certain I understood him. I asked him if he remembered our last time together. Yes. I asked him if he still wanted what he had told me he wanted at the end of his life. Yes.

And then, only a minute or so before my mother and brother returned, he relapsed into the coma.

I told them what had happened. God bless her, for the first and only time in my life, my mother believed me. I think it was because she wanted to do something but was afraid to act, so she was glad someone else could step up and take the blame. We all agreed, and I informed the doctors that they should cease all effort to maintain my father. A day later, he was taken to a hospice, where he passed away three days later, never regaining consciousness.

The evening of the day I acted on his desires, my sister and her husband and son went to the hospital. I only have David’s account of what happened; there was a nurse who didn’t believe in stopping a “fight to live” as he says she said. She then told my sister that I had decided to kill my father. Given that nothing has ever been right between the two of us, she believed what she was told. They came to the funeral, and there she stood up and accused me of that, in front of the people who were my father’s good friends. She said it was “immoral” to do that, that I would never meet “Our Heavenly Father.”

About eight years later, they stopped being Mormons, and she followed my moher’s example of trying something else on the religious buffet, but according to my nephew, she has never changed her mind about what I did.

I tell you all that to give context to what has been going on these past three days.

First, it’s important to note that while we have been together for 27 years this coming March 9, we have not been “married” in the eyes of the law. That was always her decision. She’d been married before and the divorce had been difficult. I would mention that at a minimum, doing so would mean one of us would be able to care for the other when the time came to do so. When she got the Parkinson’s diagnosis in 2018 - it had been fairly obvious since 2015 that “something’s not right here” - I renewed my suggestion about marriage. I even had my lawyer call and talk to her and explain to her that if we weren’t married, it would be her nearest blood relative who would have the power to make decisions. Her older sister. She dithered. She thought about it. She considered and re-considered. And a decision was never made.

And so, when this time has come, the decision-maker has been her older sister. In the time Jurate and I have been together, she and her sister were off-and-on estranged back and forth up until she got the diagnosis. Since which older and younger sisters have repeatedly tried to convince the authorities that I was “unfit” to care for her; and every time we were visited (I’m actually glad they do this, because I remember how things were in the days when they didn’t), she would tell them she wanted to be with me.

Over the past three months, as her older sister has come down from Oregon for a week every few weeks, I though maybe things were changing between us now that she was seeing me in person and observing what I was doing for her sister. When she came down three weeks ago - as I mentioned if a previous post - she was shocked by the amount of decline, and took charge to have the doctor come and examine her, with the result that Jurate decided to agree to being moved to residential care.

Visiting her at the home every day, it was obvious over the past ten days or so that “the time was coming.” She lost the ability to speak even slightly intelligibly, then lost the ability to do more than make sounds. She was sleeping most of the time, and having trouble swallowing her meds. (Losing the ability to swallow is a “final step” in Parkinson’s)

And then on Wednesday, I realized I really had to get the brakes fixed on the car, and sooner than I had been able to schedule at the shop I usually go to. My neighbor across the street told me there are now “home visit” mechanic services (this and store delivery are two good things that came from the pandemic). I managed to get an appointment for Friday morning, but I wasn’t able to see her on Wednesday or Thursday.

No matter how much you prepare or plan or think it through, when you get “the phone call” all the planning and preparation and thinking turns out to be Not Enough. About half an hour before the mechanic was due to arrive, Jurate’s case manager called to tell me she had “crashed” and was being taken to the ER, 9-1-1 having been called. I replied “She has a DNR!” And then I learned that Wednesday afternoon, a lawyer had visited, and she had signed formal conservancy papers (how she did that since she can’t hold a pen is something else to discuss elsewhere), and also changed her End Of Life instructions to agree to “non-invasive” rescuscitation.

The mechanic couldn’t come fast enough, but he did arrive 15 minutes early and lived up to the promise to take only an hour. While I was waiting, the case manager called again to tell me they had called “the person with authority now” and that Jurate’s older sister was on her way down from Oregon.

Jurate’s care is now in the hands of what the system considers “the responsible party,” a blood relative. The one she didn’t want to be in charge at this time.

Jurate was raised Catholic, but rejected the church when she was in college and has been “non-religious” in all the time I’ve known her, and she particularly dislikes the Catholic Church since they preach against everything she believes in. Her sister, on the other hand, considers herself “a staunch Catholic” in her own words.

So, the sister’s understanding of the Catholic Church’s teachings on “the sanctity of life” are now the operating rules for Jurate.

She arrived Friday night. We went up to Northridge Hospital where I had already been and had talked to the ER Doctor, who had told me I should start planning for “the end,” though she had no idea when that would be. When I tried to explain that to the sister, it went nowhere fast. At the hospital, Jurate had been stabilized and was now out of critical care and in a room, hooked up to all the tubes she had told me more than once she never wanted to have.

I came back Saturday morning. Sis was already there. A knowledgeable doctor came in and took a good 30-40 minutes to thoroughly explain the medical situation, ending with a heartfelt little “sermon” on the difficulty he had experienced with his own father at this point. He was doing everything he legally could to convey that now was the time to stop things.

When he was done, Jurate’s sister pointed at me and said “He agrees with you, doctor, but I do not.” And then she pulled out her copy of the Conservancy, designating her as the decision maker.

All this despite that doctor telling her that no matter what, Jurate will never recover to the point she was at last week when she lost the ability to speak. She will never be able to return to the residential hospice. She’s going to have to find a way to leave despite everyone.

After the doctor left, I tried to talk to her sister about what I knew Jurate had said and what she believed. She listened and then interrupted to say “You just want her to hurry up and die. She told me so.”

At that point I had to leave because I knew if I stayed that things would get immeasurably worse.

She reconsidered in the afternoon and emailed me and asked me to give her “my thoughts” about the situation. I wrote a long explanation, and said at the end that I recognized she has the decision power, and that I hoped she would think about this and we could talk in the morning.

So I called this morning. She was in the hospital room. Jurate has been intubated through her nose so they can give her the Parkinson’s meds that cannot be given in liquid form. The doctors say that as of this morning, Jurate is “stable” and they believe she can be transferred to the Kaiser Hospital where she is insured. (Have I ever mentioned that Every. Damn. Time. I took her to Kaiser over these years and dealt with the people who run “America’s finest private health system,” that I have walked out thanking god for the Veteran’s Administration being my health care provider? No? Well, that’s what I think of Kaiser.)

So that’s where things are at, and I am once again re-learning that last lesson in lifeguarding: It’s not your job to die. The time comes when you have to accept that what is going to be is going to be.

The point of all this is to say to all of you: if you are in a committed relationship, GET MARRIED! I don’t care what your philosophical objections are to doing so, DO IT. It is the only way you an insure that the person who knows you best, who knows what is right for you, has the power to do what has to be done to carry out your wishes. And the other thing is WRITE IT DOWN!!!

Not deciding what to do is a decision to get what you don’t want.

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