July 30 - August 5, 2000

Sunday, July 30
I decide that Don needs a shave. He's not used to being scruffy and his beard seems to itch and tickle him. After Kushma washes him, I go at it with the beard trimmer to get the stubble down to whisker level. As I trim him, he whispers, "Good job." Rémy and I are delighted. It's the first two-word phrase we've heard out of him in two days, and the first communication he's initiated in maybe a week.

I finish off with the Norelco, leaving his cheeks smooth and clean, but keeping his goatee. Throughout the day, I see Don touch and stroke his cheeks as if exploring a newly opened territory.

Because of the barbaring, breakfast is delayed. But he gets down more than half of his hot cereal, which was a combination of cream of wheat (for bulk), quinoa (for protein), and oatmeal (for fiber). I am concerned about keeping fiber in his diet because he has not moved his bowels since Friday.

I spent the rest of the morning correcting the spreadsheet Diana and Maha had made of Don's telephone contacts. There were multiple errors - so many that I may as well have done all the data entry myself. In four hours, I get more done that they were able to do in seven days. Annie's help has also proven to be a bust. I asked her more than a week ago to track down the P.O. box where Don's June COBRA check might have gone. In e-mail she sent me last night, she explained she hasn't even started trying to find out who owns it. It seems that "Is there anything I can do?" is not really an open-ended question.

Jim arrives around 12:45 so Rémy and I can have the afternoon off at the Afribean Festival in downtown Mountain View. It has been a long time since either of us has been out of the housel. We tell Jim Don is on a delayed meal schedule and explain about lunch and the mid-day medications. He seems perfectly happy to oblige. He, at least, has proved reliable.

As Rémy is getting ready to leave, I sit down on Don's bed. Jim is sitting in a chair on the other side. He had rubbed some lavendar loton on Don (what is it with people wanting to perfume him? And what's with all the lavendar?). It was pretty pungent. Jim apologized, saying he had probably gone overboard. He had already apologized for going overboard with the bagels, bringing us nearly a dozen when we had asked for only six. I had joked with him over the phone before he came that people seem to multiply any request for food by some index of their own sense of anxiety over Don's illness. Witness the six gallons of distilled water that Michael Lerner brought over because I casually mentioned we were running low!

(And yet, other things do not get done. As Michael was leaving he had asked - as so many people did - "Is there anything I can do?"

"Yes," I said. "Don's Smith Farm checks have stopped coming. The last one was in April. Could you look into it?"

"Sure," he said, but he looked a bit angry. That was over a week ago and I still hadn't heard anything from him or Smith Farm.)

So Jim and I were joking about this kind of excess when Don suddenly gave me the "I'm here" look. He reached for me. "I love you," he said.

My heart lept. A sentence! A whole sentence! I was floored. I took his hand and with the biggest smile on my face, I said, "I love you, too," and then I kissed his hand.

Now, I really didn't want to go. It didn't matter that I hadn't been outside the fence in nearly a week. Don was here! I didn't want to be anywhere else. I was close to tears.

But Rémy gently urged me away. Jim had only a few hours he could look after Don, and she knew how important it was that I get out of the house. But all the way to the festival, all I could think of was that moment of lucidity. It was the mirror of that moment in Santa Rosa when Don emerged from his coma long enough for us to make eye contact and for me to say "I love you!" and see his eyes widen in recognition and his head nod vigorously, the tubes and wires wriggling. He had now given me back that moment of hope.

When Rémy and I get back from the fair, Maha and Ira are here. I see Ira getting out of his car. "Are you coming or going?" I ask him. "Both," he says.

He takes a bunch of gladiolas out of the car. "I'm going to put these in the house because it looks so stark," he says.

Where are people's manners these day? I wonder. Must every gift come with its own insult?

I remember something Rémy told me about last night, something she had found in her reading. When asked, "How are you doing?" a yogi had replied, "Considering the unreasonableness of my expectations and the depth of my ingratitude, I'm actually doing quite well." I understand exactly.

Maha was already inside. I got both her and Jim to help me with the phone list, filling details and adding a field that allows me to sort the list by association. First Maha helped me, then Jim. While Jim and I were going over the list, he told me that he had had a conversation with Don.

Jim said, "I told him that if he was waiting around here for any of our sakes, he should feel free to go."

"And what did he say?" I asked. Given that Don had already uttered a two-word phrase and a three-word sentence today, I was ready for anything.

"He didn't really say anything," Jim said. "But I know he has such a focus on service to others that he might linger longer than he should."

"I know he was concerned about me," I said.

"You two have had such a short time."

"We've had an expression: 'always enough.' And that is what it has been."

Later that evening, I was a little unhappy with Jim for giving Don the "okay to go" speech. I had wanted to do that myself. I had been working up my nerve to do it tonight, and so I had asked Rémy to sleep in the bedroom for a second night (we have been alternating so that one of us always has a full night's rest). But maybe my anger at Jim is just possessiveness - trying to own Don by owning his death. "He died because I told him it was okay to go." But even if Jim had said nothing, I don't know if I'd be able to bring it up. I've tried twice before, but all I've managed to say is reassuring things. I haven't really said it's okay with me if he goes. Maybe because it isn't. And maybe that's why I was angry with Jim, speaking for me, putting words in my mouth that I didn't really want to say.

Carol called later that night. She said should could probably come next Tuesday. She'd call tomorrow if it's definite. Last I had heard from Jerry, he would also be able to visit early in the week. It would be nice if the three of them could have a little family reunion. But I decide not to tell Don Carol is coming. I don't want to disappoint him if it turns out she can't make it after all. Especially if it was something he was "hanging on" for.

Rémy and I go to bed around midnight. Don is too sound asleep for Rémy to give him his Decadron and tapioca pudding, so I tell her to leave it by his bedside. I'll try to give it to him if he wakes in the night. He's 4 mg short, having taken only 12 mg today, but 4 mg doesn't seem enough to wake him.

But since he is asleep, he and I can't have that "little chat" tonight after all. Instead, I speak over him as he sleeps: "Tonight is the new moon, a time for new beginnings, the entry into new worlds."

Too metaphoric, but it's the best I can do. And he's asleep anyway.

Monday, July 31
Raddha called around 9:30 AM this morning. This was the same woman whose "Great Death Triumph" chant had led me to request that no death rituals be performed during visits with Don. When she had left last time, she had given me a tape of her chanting some of the more well-known chants. (I played only a part of it before turning it off. She was too off-pitch for me to bear listening to more.)

"I want to bring a tape of some integral yoga chants and play it for Don," she says.

"That would be nice," I say. "We've been playing music in the background pretty often around here."

"I don't understand," she says. "Why does it have to be in the background?"

A thousand retorts leap to my tongue, the kindest of which is, "I don't understand why you think I need to give you a reason." But I'm conscious of Don just around the corner in the other room. I'm doing my best not to voice anger or exasperaation around him. I take so long holding my tongue that Raddah thinks I've hung up.

"Hello?" she asks. "Are you still there?"

"Yes. I don't know how to answer you."

"These chants are ingrained in his soul. I'm sure he'll recognize them."

"Raddha," I say, "there are times when he doesn't even recognize me. I don't think we can presume what's going on with him internally."

"But we've chanted these for hours," she persists. "They're a part of him. They're very spiritual. I think they'll give him a sense of spiritual peace."

"That's pretty much the kind of music we've been playing," I say. The Utopia Triumphans CD seemed to have a particularly calming effect during his "sundowning," and I had been greatly calmed by the Russian Church music CD. "But we've kept it quiet," I tell her, "in the background."

"It would be good if we could hear them together. If he can still hear."

"He can definitely hear. Well, sometimes he can. He doesn't always respond. Just your presence is all that's needed, really. That's why I'd like you not to try to engage him."

"I wouldn't do that," she says. "I'm not going to try to get him to chant along."

"Good. There's nothing really he needs to do right now that he isn't already doing."

"I'd still like to come."

"Your presence would be most welcome," I say. "It's your presence that's the real gift."

"Thank you," she says. "I'll be there this afternoon."

Shortly after this phone call, Lou, the Phillipina hospice nurse, arrives. I ask her about friends wanting to do chanting with Don.

"As long as they don't create the expectation that he will join in," she says. "It should be purely passive. If he feels that he should participate, he may find that he can't, and that would be frustrating."

"I hadn't thought of it that way," I say.

"Play it by ear," she says. "If he gets agitated, stop."

We have other concerns. Don still has not defecated. Lou gives him a enema, but 45 minutes later, there is still no production. She says she will come again to see if there has been "progress."

In the kitchen, the two of us and Remy talk about Don's diet. Lou says we should move his diet toward "soft mechanical": applesauce, cream of wheat, tapioca, smoothies. I light up at the mention of smoothies. "Of course! Don loves those." We even have some left over "Designer Protein" to mix in with them.

Lou also said that clear liquids would probably begin to go down his windpipe as the coordination between his esophagus and his glottis breaks down. She suggested fruit nectars and other drinks with "texture," which would help trigger the swallowing reflex.

When she leaves, Don is asleep, not having had any breakfast. His lunch, if he wakes for it, will be the first thing he's had all day, other than the three spoonfulls of tapioca I fed him along with his morning Decadron.

The last thing she says before she leaves is that younger, healthier people tend to stay "in this stage" longer. She said they tend to "linger."

Katherine came around lunch time, just as Remy and I were preparing the meal and getting Don raised up in bed for it. Katherine tried to put a pillow under his legs just as Remy arrived with the tray. "It's best if you don't do that so the tray can lay flat," I told her.

"But still it's good to have his legs bent," she said.

I lost my temper. "Please don't," I said, with all politeness gone. "We know what needs to be done. We've been doing this for a week."

"So, take it out?" she asked uncertainly.

"Yes."

Katherine left shortly after that. She never came back to visit Don again. I felt badly about that.

I had been getting Don's financial affairs in order, preparing for the time when I would have to make all financial decisions for him. From the way things had gone this past weekend, it seemed that day would not be too far away. We had had a durable power of attorney for finance drawn up and notorized several months ago in preparation for this very day. I had felt weird doing it at the time, but it would have been even weirder trying to do it now.

Handling someone else's money is fraught with peril. Fortunately, Don had been very well organized with his records. I readily found his credit card receipts, his IRA records, and information about his Commonweal annuity.

There are other kinds of peril, too. When I came into the kitchen this afternon, I asked Rémy, "Do you know The Lord's Prayer?"

"Sure," she says, and starts, "Our Father who art in Heaven, hallowed be thy name. Thy kingdom come, thy will be done on Earth as it is in Heaven. Give us this day our daily bread, and forgive us our trespasses as we forgive us who trespass against us...."

Then she pauses, a troubled look crossing her face. She, too, has a moment in which she cannot remember the next phrase. Then she recovers: "Lead us not into temptation--"

"There," I say, interrupting. "That's the part I never understood. Why would the Lord lead us into temptation? But he just did."

"How?" she asks.

"I've been cancelling Don's credit cards." I show her the torn up Visa. "This one said, OK, they'd cancel it, but there was an insurance policy on it that I would have to cancel separately. So they gave me that number and when I called them, I got a real sleazeball on the line. It went something like this:

Me: I'd like to cancel the insurance policy on this card.

Sleaze: Why do you want to cancel?

Me: It's no longer needed.

S: But sir, if you've paid off your balance, there's no monthly charge.

M: That's not what the credit card company said. They said the amount is deducted each month, whether or not there's a balance. But whatever it is, I still want to cancel.

S: But sir, why would you want to cancel if the coverage continues?

M: I don't have to give you a reason. (I saw no reason to open up the intimate details of Don's private life to some salesman on the phone.)

S: I'm just trying to understand, sir. You would be covered for theft, life, disability...

M: There's life insurance on this card?

S: Yes.

M: I didn't know that.

S: Are you still interested in keeping the insurance?

M: Who's the beneficiary on the life insurance?

S: If you die, we pay the balance on your card.
And that's when the Devil raised his happy little head."

My sister's eyes widened. "Did Don have a lot on his card?"

"No," I said, "but he and I had been talking for months about transferring my credit card balance to his card because it has a better rate."

"You mean, they'd accept a transfer from any account?"

"Sure. The credit card company doesn't care. As far as they're concerned, a competitor has just lost the finance charge profits and now they've got them. So that's when the Devil popped up. But when it came right down to it, even though the guy on the phone was being a weasle, I couldn't do it. I told him to cancel the insurance anyway."

"Any account?" she repeated. "Wait! Don't throw that card away! The Devil has a sister!"

We both laughed, and then I threw the pieces of the card into the trash. We were still smiling as I did it, but the smiles had left our eyes.

The Devil is persistent. There was still the matter of Don's annuity. He had meant to cash it in to pay for his medical bills, but he had been advised that he would loose over half of the amount to taxes. This turned out to be bad avice. The amount withheld would still be a substantial 20% (plus whatever the State of California withheld), but that was simply withholding, not a permanent loss. If it turns out that more was withheld than called for, then the overage would be returned. He had also been told that he would be subject to a 10% penalty for early withdrawl. That, I eventually found out, was also false. If you withdraw because of permanent disability or immanent death, you do not suffer the 10% penalty.

When Don and I talked about his cashing in his annuity, he never mentioned that he had named a beneficiary. But when I was going through his papers last week, I discovered that he had named a beneficiary. I was presented with a conundrum. Which expressed wish should I follow: the wish to leave the annuity to a beneficiary or the wish to pay off his medical bills before he died? My own ignorance complicated the situation. I didn't know that Don's estate would be probabted (though it turned out that it was), and I didn't know that any outstanding medical bills would be settled through the probate procedure.

Ignorant of this, all I knew at the moment was that we were facing about $10,000 in unpaid medical expenses, most of them due to Blue Cross's refusal to pay for any MRIs Don had received since January. If I could figure out a way to get the annuity funds into our joint account, I could solve that problem. I thought the best way to do that would be for Don to change the beneficiary to me. This may well have been the Devil's own reasoning.

So this evening, I explained the whole thing to Don. He, of course, said nothing. I held up the change in beneficiary form and told him what it was. I told him I wanted him to sign it so that the money would come to me. He turned his head to see the form, which I held on a clipboard. I put the pen in his hand. "This is where you sign, if you want me to do this," I said, pointing to the bottom of the form.

His hand wandered over to the form. Then it wandered up to the middle of the form. He made a tiny mark - not quite a comma - then his hand wandered over to mine holding the clipboard. There, his hand moved as if he were signing something. Then he just stopped, his hand poised in mid-air. I looked down at my hand. He had left a mark in the space between my tumb and index finger. It looked like a half-formed Om.

I felt very deeply that this was not the right thing to do. I took the form away, and he fell asleep shortly after that.

Raddha never did show up. We didn't hear from her until around 3:00 PM the next day. A traffic jam on Highway 17 had kept her from making it over Highway 17. She said she'll come on Thursday.

Tuesday, August 1
I woke up early because I had to be at SFO to pick up Don's sister and her daughter. I had a light breakfast, then spent a few minutes meditating. When I opened my eyes afterwards, I reached over and picked up the change of beneficiary form and tore it in half. It had been nothing but a distraction since it first came up.

I guess what really tipped my decision was the various ways I was thinking of accomplishing the change. I was mulling over the options with Rémy in the kitchen the night before when she said, "You know, everything you tell me is strictly confidential. Anything you do will be kept secret. I'm just playing Devil's advocate here."

Secrets. That was the dead give-away. Anything that has to be kept secret is not worth doing. It is not right action.

I left shortly after that to pick up Don's sister, Carol, and her daughter, Sheryl, at SFO. On the way back to Mountain View, I tried to prepare them for Don's low-interactive state.

They washed their hands at the kitchen sink as soon as they entered the house, and then Carol approached the bed. "Hello, Donny," she said.

His eyes grew wide and he looked at her. I could tell he was actually seeing her and even recognizing her. We had told him this morning that she was coming, but it's hard to tell if he understood us. As Don's verbal output has diminished, so has his affective output. At times his face seems completely immobile, like a mask, and his eyes have an unfocused, almost wall-eyed look. But at rare moments he seems to be fully "there," seeing and responding to his environment. That's what I saw when Carol said, "Hello, Donny." He was there, and seemed surprised, then pleased to see her.

They visited for several hours, Carol doing all the talking, but Don looking at her intently. Then Carol, Sheryl, and I left to find them a motel room nearby. To my great embarrassment, nearly every place was booked. This was something I had not expected. No vacancies in all of Mountain View on a Tuesday night? Who knew? They ended up at the Budget Inn, a place I would not recommend to anyone, no matter how desparate they are for lodgings. It is clean enough and the rooms have the usual accomodations, but the clerk was surly almost to the point of hostility, and when he found out that Sheryl was a smoker, he charged her a $50 deposit even though Sheryl said she would not smoke in the room.

I had left a number on Jerry's pager hoping he would call so I could tell him that his sister was here visiting, but he did not call me back.


As He Left It


 His Hat


 The Beds
Wednesday, August 2
Remy told me they had had a rough night. I had slept in the bedroom and she had been on "night watch." Just after she had given him his midnight Decadron, Don regurgitated some of the chili he had for dinner. (It one of the meals the Chef-for-hire had prepared for us, and he seemed to really enjoy it at the time.) Because of the tomato sauce, what Don spit up was red and Remy was afraid at first that it might be blood. She said Don was also upset. Since this happened just after she gave him his midnight Decadron, she wasn't sure he'd gotten his final 4 mg dose. She hadn't be able to get him to open his mouth again, even to take some Maalox. Finally, around 3:00 AM, she coaxed some down him and then they both were able to get some sleep.

Now, she couldn't get him to open his mouth for his morning meds or his breakfast. "He just closes his eyes and turns his head away," she said.

Lou the hospice nurse came by around 9:00 AM. She gave Don Composine for the nausea. She gave it as a suppository because she, too, couldn't get him to open his mouth. It pretty quickly put him to sleep.

I picked up Carol and Sheryl at the motel. They had more horror stories to tell. The smoke alarm started going off in the middle of the night and they couldn't get it to turn off. They had to wake the manager to get him to do something about it, and he was not happy about it. I feel badly that I didn't arrange better lodgings for them, but I honestly didn't think it was going to be that difficult to find them a room.

The Glyphic folks came by for lunch, which was a treat for me. Don was still asleep, so we ate and spoke softly in the livingroom and kitchen, keeping the pocket door between the kitchen and dining area closed. Don woke up towards the end of lunch, though, and Brad, Mark, and Leslie all said hello to him. Rick held back, figuring he didn't really know Don and introducing himself at this point would simply be confusing. They left shortly thereafter.

Kim from the chorus also came by. He was the one who mentioned to Don that in India the wife walks behind the husband in the marriage ceremony, lifting her eyes only far enough to see her husband's feet. He asked if there was anything he could do. I always have a short list of errands and chores, so I told him yes, he could Xerox a bill for me so I could send it back with the payment and have a record to keep. He immediately went out to do it.

Don was now fully awake and it seemed to be a good idea to try once more to feed him. He had nothing since since last night's disasterous chili. It was a warm day, so I started with some fruit juice first. He like this, so I switched to tapioca pudding. He really liked that, eating about half a cup. We were on a roll, so I asked Remy to reheat some of the Cream of Wheat with quinoa from yesterday, which she did. She cut up some fresh apricot into it as well. He got about a quarter of a cup of that down before getting sleepy again.

Kim returned with the Xerox copies of the bill. He spent a few minutes holding Don's hand while he slept, then he left.

Even though I had had the bedroom last night and Remy had had night duty, I was exhausted, so I laid down in the bedroom and took a nap. While I was asleep, Remy fielded a couple of phone calls, which she told me about later. (I had turned the ringer off on the phone in the bedroom just so I wouldn't have to answer it.)

One call was from Diana, who was now back in Hawaii. She called to object to my plan of calling Jim first and having him notify all the Hawaiian contacts. She told Remy that she didn't want to be notified of Don's death by someone who had only known Don a couple of years. She said she should be the first person in Hawaii to get the news, not Jim. Besides, she said, Jim was on the East Coast this week and wouldn't be there to get my call.

"Well," I said, "at least that last piece of news is useful. I guess I will have to call her first. But you know what a ditz she is. I didn't pick her precisely because she is so close to Don. I think she'd just be overwhelmed with grief. Jim is rock-steady. I can rely on him."

"It's like she wants some kind of status from knowing first," Remy said. "I told her that someone was going to be the first to know, and it might not be her."

"It's going to be Jerry," I said. "At least, that's the first call I'll make, to his pager. And there can't be anyone who's known Don longer."

"I almost asked her to name who she would like to have call her, but I didn't."

"Well, if Jim's off the island, then it will have to be her. I just hope she has all the phone numbers."

The other person to call while I was asleep was Dawn.

"She was making the argument that Ceasar should be brought down to Mountain View," Remy said. "That's his cat, isn't it?"

"Yes. Don and Jerry picked him up when he was just a kitten. They found him on a country road in Virginia."

"She said that Don's soul wouldn't be at peace unless he could first make a gentle parting with Ceasar."

"I swear, don't these people have a lick of sense? What's Don going to do with a cat? He can bearly hold a spoon!" I let my exasperation cool a bit. "It's true, Don wanted to bring Ceasar down here to live with us and I thought that was a good idea. But that was for Ceasar to come here to live, not visit. That's not an option now. Don cannot take care of Ceasar and I cannot take care of them both."

"So, even a visit would be a bad idea?"

"I think so. Ceasar hates to travel by car. As Don puts it, 'It has "going to the vet" written all over it.' No, Don was very practical about this. We weren't to bring Ceasar down here until we were ready to have him live with us."

"Well, I didn't comment, but she insisted Don's soul would not be at peace unless he had seen Ceasar."

"Have any of these people thought of how it might feel to Don if he wanted to pet Ceasar, or comfort Ceasar after the long ride - and it would take about two hours to get him here - what it would feel like if he wanted to pet him and couldn't? I doubt it. They are each trying to 'help his soul,' just like they were each trying to 'save his life' in Santa Rosa. But they cannot see beyond their own need to be doing something. They only see their need to help, not the effects it might have. Good intentions. But there's a Buddhist saying: wisdom without compassion is slavery, and compassion without wisdom is slavery."

I felt a little better, having vented for the evening. As I was picking up around the house, I came across the copies Kim had made for me. He had put the bill in the wrong way and both copies had come out with the bottom third cut off. In other words, useless. So I had to go out and do it myself after all.

Thursday, August 3
Quiet Day
Friday, August 4
Saturday, August 5


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