Death watch, and other miscellany

I’m back, although I have to confess that there were times today I didn’t think I could make it home tonight under my own power. But the regenerative characteristics of Starbuck’s bottled frappucinos (sp?) is amazing.

This business of trying to help someone you care about die with a certain amount of dignity is tricky. There are so many moments of sadness, loss, frustration, and sheer terror.

But then, there are also all of these opportunities for the blackest of black humor. Talking with the hospice nurse today, I relayed a couple of stories and noted, “I have a very black sense of humor.” She laughed and said, “You have a great future with hospice care should you ever want one.”

To wit, one: Tom still believes in his heart of hearts that he can do any thing he sets his mind to. His muscles are failing him (that could have something to do with the one-third or more of his body weight that he’s lost–one of Lisa’s questions for the hospice nurse a few weeks ago was “How can anyone so thin still walk?”), so getting up and out of bed is a challenge.

But Tom is an engineer, so he has figured out that if he can get positioned and rock back and forth enough, he can catapult himself to his feet. This has a good side and a bad side.

Last night on Tom-watch I lay down beside him and he decided to get up. Before I could get around the bed to help him, he used the catapult technique to catapult himself right into the dresser, head first. I didn’t even see the cut over his eye when I first helped him up. But I heard him hit.

Here’s where the terror comes in. I’m thinking, “OMG, concussion at the very least.” I’m starting to panic, wondering if I should call hospice or 911 or someone. Then reality kicks in.

Concussion. Headaches. Confusion. Trouble in recalling words and speaking clearly. What would be different? A brain tumor is something like a permanent ongoing concussion, or at least this particular brain tumor is. A part of me wants to giggle. Another part wants to cry.

The hospice nurse reinforced that. She said, “At this point, almost nothing matters.” The hospice primary care person said, “Now we talk about weeks rather than months. How do we keep him comfortable?”

As part of the comfort therapy, I drove across Salem today to pick up two prescriptions. A hospice volunteer was with Tom, who can’t be left alone at this point. Tom’s treatment plan changed abruptly today, and I thought if I picked up the medications, it would save Lisa a struggle with how to do it. The prescriptions were to be filled at a pharmacy about as far from Tom and Lisa’s house as you can get and still be in Salem, because the pharmacy happened to be the only one that had one of them in stock.

When I got there (about a 25-minute drive), the pharmacy had decided they could only fill one prescription without additional faxes and information from the hospice prescribing physician. So I could fill one prescription, but not solve the main problem.

I almost went ballistic. I even considered just leaning across the counter and bursting into tears (I was so-o-o-o tired at this point). But instead, I decided to get what I could get and go fight the battle elsewhere.

Then the clerk behind the pharmacy counter said (prescription medication in hand): “Since Tom has never filled a prescription with us before, we need to develop a profile for him.” (It is worth noting that at this time there were eight people behind me in line for this single clerk.)  I bit my tongue, gave her his full address (I couldn’t remember the zip code exactly, and after 2 minutes of dithering around with her computer and throwing various options at me, the clerk said, “Never mind, we’ll fix it later.”)  and phone number, date of birth, location of any moles, and so one. Then the clerk asked, “Does he have any allergies?”

That stopped me cold. “I don’t know,” I said, “but since he’s dying of terminal cancer does it really matter?”

“Well,” she said, “we wouldn’t want to make him sick now, would we?”

Now I’m having a lot of trouble even categorizing this post. I’m going to quit and go to bed. Lisa was so worried when I left that I called to tell her I got home safely (still feeling guilty for leaving her alone with Tom). She said (with a rueful voice) that he was stuck in the hall again. So we kept the conversation short and I felt guiltier than ever at leaving her to deal with this alone.

It should not be this hard to die.

This business of dying is a strange business

Yesterday was Tom’s 50th birthday. Lisa decorated the house beautifully (Tom, a helicopter nut, said the streamers from the ceiging reminded him of standing under a Huey, and he really like them), bought and wrapped a present, and got up to share it with him at the best part of his day, early morning after a night’s sleep. She got him a cake and I got him a cake.

She said he seemed really excited about the fuss being made over his birthday. “You don’t suppose he thought we’d just let it pass by unnoticed, do you?” she asked me.

It’s hard to know what to think. Tom is on that roller coaster that goes with deteriorating health, down, then up again, but never quite as up as he was before, then down, and almost up again, and so on. He is essentially blind now, so most of the things he sees are hallucinatory. But the worst part of it for him is that he’s losing conversation. He tries, but it’s increasingly hard for him to pull out the word he’s looking for.

This morning I fixed him a scrambled egg (he ate a whole one with enthusiasm yesterday) and he asked where the ketchup was. I rummaged around til I found it and brought it to the table. I asked him how much he wanted and he started shaking his head in a horrified manner. Turned out that what he wanted was a Kleenex, another K word, not ketchup at all.

Yesterday he did seem excited. We ate chocolate cake with raspberry filling and ganache icing with our fingers (it’s easiest that way when you can’t see a fork). I cleaned the dropped chocolate from their white carpeting after he laid down again, and I think I did a passable job of it. I cooked him a birthday dinner of baked chicken and asparagus and biscuits that only Lisa and I could enjoy.

Today he was semi-comatose.

Last night he got up from a very deep nap to see the lunar eclipse with which the universe had honored his 50th birthday. I don’t think he could see it at all, frankly, but he pretended that he did, and he seemed excited about it, even chastising me for not bringing my telescope when I came to his house. It never even occurred to me to do so.

I lost a good friend about six months ago after a very long illness. Fred was nearly 80 years old and had been battling emphysema for some time. His actual dying was long and dragged out, miserable for him.

But like Tom, Fred retained his sense of humor. It was very hard to lose him even knowing how difficult living had become for him.

It is the same with my brother. I hate, hate, hate seeing him suffer like this, waking with excruciating headaches that are relieved only somewhat by the same drugs that produce the hallucinations that frustrate, frighten, or confuse him. It shouldn’t be this hard to die.

On the other hand, I know that when he is gone he will leave a void in my life. He’s much too young to be dying (he calls it “taking a shortcut to where we’re all going in the end”). In the natural order of the universe, he should be around to mourn me when my time comes. This is backward.

I have a sibling or two who won’t come to visit. One of them said she was unable to deal with the “emotional issues raised at times like these.” I understand her view, but I keep hearing the hospice nurse saying, “You will never regret the time you’ve spent with your brother during these weeks.” And I know she’s right.

I’m not sure where I am going with this, so I will say only that when I die, I want to just simply fall over dead (unless I can die in my sleep with no previous warning). I haven’t been afraid of death since a near-death experience when I was about 25 years old. But I am afraid of being maimed, incapacitated, unable to care for myself, dependent on the kindnesses of others no matter how much they love me or I love them.

Just let it be fast when it comes at last.

Solstice countdown

The winter solstice is expecially troublesome in our house. We are far enough north (approx. 44th parallel) that there is a substantial difference in the amount of light we get at different times of the year. It’s wonderful in the summer, when days last til after 10 p.m., but this time of year it’s totally dark by about 4:30.

Ben deals with it better since he learned to start counting down early in December the number of days until the light starts to return. Only a couple of days left now, so we’re all looking forward to the days being much, much longer. I believe it’s about seven minutes a day that the light increases. But psychologically, it feels like much more.

Some people take drugs for sinuses and headaches. I’m not one of them. So far Wii is working equally well, although it may be raising my blood pressure. I’m afraid to check. It’s time to go read the manual and see what those little crowns on the map mean. I think they mean you’ve cleared a galaxy, but if that’s the case, I have to go revisit some places.

But I have 14 stars, and I killed both the stupid mushrooms (goombas, I seem to recall from earlier Mario games?) on Yoshi’s head and finished off the tarantula, so things are going well. Josh is right, the game just keeps getting better and better.

I really enjoy the good Mario games. I like Zelda, too, but there’s a complex puzzle-solving element to those games that my brain just isn’t up to at the moment. Ben is much better at those than I am, and I’ve managed to give him my sinus infection, so he’s not very much in a puzzle-solving mood.

But Mario, at its best, is full of action and concentration. You have to pay attention when the game is teaching you a new skill, because you’re certain to need it very soon. This is the best Mario so far, and I’ll probably wear out the generator playing it.

Dinner in the oven–blackened pork chops baked with stuffing, to which I’ll add mashed potatoes, gravy, and spinach. I know I’m on the mend, because yesterday my appetite came back. I think I lost about five pounds last week (yes! but not my favorite way to do it) because food just didn’t sound good. But yesterday, suddenly, I was hungry again. Makes it easier to cook, too, when you can imagine how luscious something will taste.

Ken Kesey, Timothy Leary, and serendipity

OK, I did it. I managed to find another of those tasks that sucks up time without a real movement forward, so I’m still, I suppose, procrastinating. But I started in trying to tidy things up in a few places and found myself falling down the rabbit hole of free association once again.

Our house has a “library,” a necessity when you have thousands (not an exaggeration–my current estimate is about 5,000, I quit counting a thousand or so ago) books. But more accurately, it has multiple libraries.

The main library room has most of the fiction, all of Ben’s strange collection of medical, legal, and historical stuff, a ton of biography, and a couple of encyclopedias (children: this is what the world’s collection of knowledge used to be kept in before Wikipedia). The videos, most of the CDs, and even some cassette tapes are filed in what is called (for unknown reasons) “the African gun room,” a separate room off the main library that was originally intended (by Ben) to be a third spare bedroom before we realized how silly that was for a household of two dozens of miles from anywhere.

But my little “office,” originally our daughter’s bedroom here (she is now grown and on her own although she still, I think, prefers her old room to our more sumptuous guest suite when she comes to visit), has its own “library.” These are my books. They are a collection of “high” literary fiction, poetry, literary criticism, cultural and sociological studies, religious studies, and dozens of dictionaries. It also houses needlework and gardening books (the cookbooks are in a separate set of shelves in the kitchen) and my collection of audio and video lectures from The Teaching Company on topics as diverse as Nietzsche, Toqueville, quantum physics, astronomy, geology, and the origins of language.

OK, I hear the question: “You promised to talk about Kesey, Leary, and serendipity, and here you are rambling on about your bookshelves. What gives?”

The procrastinating task I found myself involved in today was trying to determine what on the bookshelves in my office could be dispensed with. This isn’t as stupid a task as it sounds, because the edges of the stairway from the kitchen to our bedroom are lined with books waiting to be put away. If the house caught fire with things as they are now, we’d probably both break our necks just trying to get downstairs in the dark, and the fire problem would be moot.

So I’m sorting away and I come across an old (2002) edition of Tin House, a literary magazine to which I used to subscribe. I start to put it in the reject pile when a cover headline catches my eye: “Ken Kesey’s Last Interview.”

This wouldn’t be so remarkable except that within the last two weeks my friend Carla told me how pleased she was that the interview she did with Ken Kesey, his last, was to be included in this publication’s anniversary anthology. I opened the magazine up, and sure enough, here’s Ken Kesey talking to Carla P****.  This comes out of the reject pile immediately. . .

In her interview, Kesey quotes the I Ching: “The best way to fight evil is to make energetic progress in the good.” Amen.

Kesey is one of my heroes, a kind and gentle person who was capable of great love. He recognized the dangers of the milieu in which he was dealing and did what he could to ameliorate them. I don’t feel the same way about Timothy Leary, who seemed to believe that the hazards of drug experimentation were what would separate the weak from the strong, and the weak be damned.

If there is any confusion at this point about how I feel about drugs, let me clear things up once and for all: I’m “agin” them, sort of. Here’s what I mean by that.

I’ve said elsewhere that marijuana is not for me. I realized that about 30 years ago when I woke up on a Monday morning realizing that the effects of the pot I had smoked on Saturday night were still present in my brain. I didn’t like that.

I have since watched two friends self-destruct on that “friendly” drug, men whose brains I greatly admired who lost the ability to reason when smoking. They ultimately lost it altogether.

There are NO friendly drugs. Alcohol does damage to your body. I accept this, and I try to balance the pleasure and the damage. Cigarettes help destroy your health. I’ve finally reached the point where the negatives aren’t worth the positives, and so I’m struggling with that addiction. Even lowly aspirin has both positive and negative effects.

But to those who would say “Cannabis is good, it promotes good health,” I can only answer, “Sorry, but in my experience it just isn’t true.” All drugs modify the way we perceive the world. So does an over-reliance on technology. So does buying into the current corporate/governmental mantra of “We know what is best for you.”

As a poet, my first job is to see things clearly. My second job is to try to communicate that vision to those who want to listen.

So listen up, guys. Pay attention to what the world around you is saying. If you have to escape, escape, but don’t try to justify it on the basis of “this is good for me.” It just isn’t true. Ken Kesey knew that; Timothy Leary didn’t.