No Go

Lots of disappointments today:

* We didn't manage to get over the mountains -- although we hadn't really expected to -- because of bad weather. Donner Summit's half an hour from here, a stone's throw from Donner Lake, which is, as astute students of history will recall, the place that sometimes gets so much snowfall that travelers are stopped in their tracks and have to eat each other. This happens much less frequently in the automotive era, but we'd still rather not take chances. (In all seriousness, driving in the high Sierra in bad weather is scary business. My father, when I spoke to him today, said emphatically, "If there's any danger at all, don't come!" I looked into plane flights, but they're awfully expensive: we'll reserve that option for true emergencies.)

* The nursing supervisor on Mom's floor put the kibosh on informal pet therapy. Nertz! #1 Dino, when informed of this, very kindly told my sister to call whenever necessary for help translating medicalese. The pup visit was such a generous offer. I wish it had worked!

* Mom's doctor told my sister that Mom won't be having another stress test on Monday, because during the first one, her sats dropped to 68 even though she was on three liters of oxygen. Ouch.

* My sister told me that Mom told her that she has nightmares every night now, that "they've become part of my biography." The nurses attributed this to sundowning. When I spoke to my mother this evening, 8 PM her time, I asked about the nightmares, and she said, "They aren't nightmares anymore. They've become the story." I asked her to explain that, and she said she couldn't explain it any better than she had, but she did assure me, when I questioned her -- very consciously wearing my chaplain hat -- that she isn't scared anymore, not when she's dreaming and not when she's awake, even though she doesn't know how the story will turn out. This might sound like dementia, but she was perfectly lucid in other respects: asked how Dad was doing, for instance, knew who I was and where I was and where she was. When I told her that I hope she doesn't have nightmares tonight, she assured me that she wouldn't, and we closed with our usual exchange of "I love you."

Okay, you pastoral/hospice types out there: please help me decode this! I have a feeling she may be speaking metaphorically about her approaching death (as described in the wonderful book Final Gifts), but I'm at a loss to make sense of the metaphor. I asked her if she wanted to go home, and she said she didn't know, because "I don't know if there's anything there for me anymore." I reminded her that my sister and the cats are there, and Mom said, "Oh, but they're everywhere." I pointed out that the cats aren't in the hospital, and she agreed, but I wonder, again, if this is some sort of metaphor for approach to the larger life (where, I have to hope and believe, we're surrounded by love). Any ideas?

I suppose I could have just asked her, "Mom, do you think you're getting ready to die?" but I didn't think of that. In any case -- whether this is coded speech, dementia, meds interaction, what have you -- she seemed calm and at peace, which is the most important thing, right?

All of my posts seem to turning into bullet-pointed lists these days. Sorry about that, but it's what works right now!

Quiet Day, More or Less

I actually had a fairly peaceful day today; since Dad's safely in Palo Alto, I didn't have to zip hither and yon to visit him (that will come when we manage to get over the hill, which could take a few days, given current weather conditions).

I woke up feeling more human than I have in a while. I drank coffee, graded, wrote my final exam, ordered spring textbooks, and then went swimming before the final. During the final, I knit. Then I came home, had supper, graded exams, and watched an episode of The Wire with Gary.

Of course, there were various phone calls throughout the day:

After a merry game of phone tag, I conferred with one of my father's Palo Alto doctors about his medical history. According to her, he'll be getting one test on Monday, something about measuring valve gradients. I'm not going to attempt to understand this, even if I've found an explanatory website. What matters is that it's the test that will determine if Dad's a candidate for the clinical trial, so please all keep your fingers crossed.

I also played phone tag with Dad, but never did get in touch with him after a very brief conversation this morning. He was tired from traveling, but otherwise seemed in decent spirits. Whenever I've called Dad's floor to try to speak to him, or speak to his doctor, the person who answers has asked me to spell his name, and every single time, I'm only a few letters into it when the person says, "Oh! Mr. Palwick!" So it sounds like he's making some kind of impression over there.

I also talked on the phone with #1 Dinosaur, who lives in the Philly area and is going to confer with my sister about arranging some informal pet therapy for Mom this weekend. This is an incredibly kind gesture, and I'm really touched. And it's all because of the blogosphere!

Mom will definitely be spending the weekend in the hospital. They drew 200 cc (or "half a mayonnaise jar," as she put it) of fluid from her left lung this morning; we should have preliminary lab results on that tomorrow. Unfortunately, draining the fluid didn't make her feel better. Meanwhile, the stress test had to be cut short because Mom's blood-pressure plummeted and her fingers turned blue -- this according to my sister -- so they're going to try to do another one on Monday.

When I spoke to Mom this morning, she didn't know why the stress test had been cut short. She confirmed my sister's report that she had another nightmare episode this morning, though. I asked her to describe it, and she said, "The room reshapes itself, and I'm yelling 'Help me, help me,' and I don't know why, and no one comes and finally someone does." She said it was "terrible."

Her 02 was low again, and I asked her if they thought that was causing the nightmares, and she said, "They seem to think it's more the diabetes." (Have I mentioned that she's Type 2?) I've seen various things on the web, that oh-so-reliable resource, indicating that low blood sugar can spark nightmares, but Mom says hers was high -- although she's had episodes of low sugar while she's been in the hospital -- so I'm not sure what the explanation is. I just hope the pet therapy, if it happens, gives her a happy interlude.

Speaking of pet therapy, all three cats have been unusually affectionate to me today. They know when one of their food providers needs to be cheered up!

On a very sad note, I learned today that a friend's mother died from cancer. It was expected (she was in hospice), but it's still a blow. She and I met a few years ago, and discovered that we both went to the New York City Star Trek convention in 1973. I didn't know her well, but I was fond of her, and I'm sad she's gone.

While it was a somewhat mixed day, I still felt like I could breathe, more or less. This is a good thing. I hope it lasts a while.

The Eagle Has Landed!

The flight crew just called (they meant only to leave a message, but I'd kept my phone on) to say they'd landed in Palo Alto. I think this was another plane, not that it matters.

This same crew took Dad to San Francisco -- wasn't that years ago? -- and the woman who called told me, "Your dad's an awesome guy."

Indeed. And now I'm going back to sleep. G'night!

Roller Coaster, Part II

I just got a call from one of the flight crew saying that they aren't transferring Dad to Palo Alto after all. They're having mechanical problems, so they're taking him back to the VA.

I'm not sure my heart can withstand this saga. I have no idea how his is surviving.

Roller-Coaster Day

Today's events, in reverse order:

5.

Around 8:00, while Gary and I are at the piano recital (which is lovely!), I get voicemail from Dad saying that he'll be in the air within half an hour. This is of course great news, but makes it difficult for me to concentrate on the rest of the recital.

We're expecting a string of storms here starting tomorrow, but Gary and I will drive over to Palo Alto when we can. Sharon has offered to drive me if I'm too much of a basket case to drive safely (see event #3) which is awfully sweet of her.

4.

I get a call around 4:30 from the doc at Stanford, who has a bed for Dad. The scary news is that someone at the Reno VA -- maybe the transport coordinator? -- told him that Dad was no longer interested in being part of the trial. Thank God he checked with me before releasing the bed to someone else!

I hit the roof when I hear about this. I fire off e-mails to two of Dad's Reno doctors, and then call Dad -- I'm not visiting him because I'm feeling coldish again -- and tell him to complain to the charge nurse. He calls back to say that the charge nurse is working furiously to arrange transport, to get his attending to fill out papers, and to figure out what the frack happened to give anyone the idea that he didn't want to go.

He could have lost his shot at the trial. Thank God the guy at Stanford called me!

3.

Fran fails the vision test for her Nevada driver's license, and proceeds to think up ways she can drive on her Illinois license. I try to discourage this. At one point, when I'm about to drop her off to visit Dad, I snap, "Look, Fran, the bottom line is that if you can't see well, you shouldn't drive." Just at that moment, she yells at me to look out: a car's coming, and I didn't see it.

Sigh.

2.

My sister calls me, in the middle of a walk that has become a sob-fest (see event #1) to say that Mom is doing better, is sitting up and coherent and interested in the world. They had a good visit. Yay!

The medical news isn't good at all, though. One of Mom's doctors told Liz that Mom has congestive heart failure and aortic stenosis -- these being my dad's two chief complaints also -- in addition to pulmonary hypertension and "bad" (his word) emphysema. They're going to do a stress test on Mom tomorrow; presumably this will be a chemical one, since I doubt very much that they'd be able to get her up on a treadmill.

Meanwhile, a pulmonologist told Liz that Mom has a lot of fluid in her left lung, and that Lasix hasn't helped drain it, so tomorrow they're going to drain it with a needle, both to relieve pressure and to test the fluid to see what's going on. For instance, has Mom's lung cancer come back?

With all this, there's still some talk of Mom coming home this weekend.

My sister says, "The first doctor kept saying, 'We have to decide how aggressive to be.' I don't know what that means."

"Do you want to know what it means?" I ask her. She says yes, so I say, "I'd interpret it as meaning, 'We may need to start thinking about hospice.'"

She says, "But they're also talking about maybe doing angioplasty."

I presume that angioplasty would be the option if the doctors, in consultation with Mom, decide to be aggressive. I suspect Mom won't want that, but we'll see. I tell my sister, "Find her advance directive. Keep it on you. Make sure the hospital has it. Review her wishes with her: ask again whether she'd want to be resuscitated or intubated, because she may have changed her mind since she filled out the advance directive. And make sure the medical staff knows what she wants."

I also ask my sister to ask a nurse if Mom's hospital has pet therapy. Evidently it doesn't, which is a real shame, because a visit from a nice shaggy dog is a form of spiritual care she'd not only accept, but love.

1.

I sleep very late, wake up feeling awful, and then get a call from my sister that Mom called her at the crack of dawn, saying that she'd dropped her cell phone and wanted to see if it still worked. But then another story emerged: Mom had a horrible nightmare, the worst she's ever had. She dreamed that she was asleep and woke up in her hospital room and was absolutely terrified, and rang for a nurse, and no one came, and she felt abandoned and grief-stricken and paralyzed with fear, and no one came and no one came and then a nurse finally came, and it wasn't a dream, the nurse was really there, and so was another nurse and a doctor, because Mom's oxygen had slipped off and they had to get her O2 levels back up.

My mother evidently told the medical staff, "That was more awful than I imagine being on the brink of death would be."

I tell my sister, "But it sounds like she was on the brink of death."

"I know," says my sister. "Maybe she was in denial."

This story shakes me deeply, because it contradicts everything I thought I knew about hypoxia, which is supposed to be -- and has been, according to all the patients I've talked to at my own hospital who've experienced it -- the state in which one feels blissfully at peace, sees the white light, meets previously departed loved ones waiting to usher one onward, and so forth. I've always imagined my mother, at the moment of her death, seeing her parents again, and finally being free from pain after years of suffering.

Every time I think of her feeling abandoned and terrified, instead of at peace, I start sobbing. The tears feel like glass shredding my heart.

Later, I talk to Mom and she tells me somewhat crossly, as if it's my fault for being a chaplain, that "two pastors" came to see her, and that she sent both of them away. I tell her that I hope she was polite, and she says, "Polite enough, but I made it clear I wasn't interested."

It occurs to me that the medical folks may have called in a spiritual-care consult because of Mom's waking nightmare. I wish she'd talked to them. But I can't make her, so instead I decide to go for a walk. I walk and sob, walk and sob, thinking about my mother being lonely.

I wonder if the day will get better.

To-Do, Ta-Done

I was going to post a semi-funny hour-by-hour schedule of what I've done over the last two days, except that at this point, I can't even remember what I've done over the last two days. But here's some of it:

* Met with my father's care team, who are going to put him on an appetite stimulant and give him a Pocket Talker for better bearing, but who have no idea what's happening with Palo Alto.

* E-mailed Dad's main cardiologist, the one who passed Dad's name along to Palo Alto, who also (as he informed me via return e-mail) has no idea what's happening with Palo Alto.

* Got the car serviced.

* Led a Literature & Medicine discussion group at our Local Big Hospital last night.

* Got Dad's Medical DPOA and Advanced Directive filled out, signed, witnessed, notarized, and photocopied.

* Wrapped and mailed out Christmas packages, and also mailed some packages for Fran.

* Got most of Gary's Christmas gifts (mostly online), as well as a gift for the child of a friend.

* Got Dad's Christmas gift orders straightened out during a long phone call, after a previous long phone call when I ordered the wrong things, resulting in Dad getting very cranky.

* Got phone bill straightened out during mercifully short call with Verizon, who for some reason had split Dad's cell off of our family plan into its own account, resulting in a large extra bill (which, luckily, we now won't have to pay).

* Met with a student who was upset about his grade -- understandably, as it turned out, since I've been so crazed the last six weeks that I just plain graded his paper wrong. I apologized and fixed it.

* Swam today, for half an hour.

* Went into semi-chaplain mode when my sister called me in the middle of a meltdown. She was sobbing in the corridor outside my mother's hospital room because everything was hitting her at once.

* Had my own meltdown in the shower, half an hour later.

* Was immensely relieved when I had a fairly decent conversation with my mother this morning, although part of it consisted of my crooning repeatedly, "I love my Mommy," while she ate her breakfast, as loud munching noises came over the phone.

* Despite munching, received phone call from sister asking what appetite stimulant Dad will be on and wondering if Mom can go on it too.

* Was informed by Gary that marijuana stimulates appetite (and would also help with Mom's nausea), and passed this info along to Liz; we both laughed merrily.

* Checked with nurses on appetite stimulant: none's been prescribed yet, but the one the nurses seem to favor is indeed Marinol, synthetic THC.

* Received e-mail reminding me that I'm an outside grad committee member for a music student and have to attend a recital tomorrow evening. I'd completely forgotten this. Thank God for e-mail.

* Received orders from Dad to cheer up Fran, with detailed directions about what to do for her for Christmas. Reminded him that he, Gary and I may very well be in Palo Alto for Christmas, but that Fran's planning on staying here.

* Dropped Gary off at Dad and Fran's apartment so he could hook up Dad's TV, in hopes that this might cheer up Fran.

* Sat by Dad's bed as plans to acquire car for Fran went into hyperdrive. She must have car before the rest of us leave for Palo Alto! (Of course, she might be able to build her own car, after mining the materials from scratch, by the time we leave for Palo Alto.) I must take her to the DMV tomorrow so she can get her NV license! I must approach their down-the-hall neighbor, the one who's bragged about the cheap cars he's gotten at weekly auctions, about helping Fran get a car this week!

* Knocked repeatedly on door of down-the-hall neighbor. No answer, despite (or perhaps because of) loud TV noises. Left explanatory note with request for neighbor to call Dad; Dad can handle this one.

* Imagined down-the-hall neighbor reading the note, rolling his eyes, and thinking, "Don't the daughter and son-in-law know how to buy a car?"

* Did a little knitting.

* Evidently gave Dad my cold, since he's coming down with a sore throat and congestion. :-(

* Listened to Dad patiently reassuring me that there's no proof the cold came from me, that he could have picked it up from anyone.

* Felt like the world's most horrible person for giving my elderly father a cold.

* With help of colleagues at work, found a freshman-comp writing guide (for next semester) for under $50 -- which seems to be the starting price for these things -- since charging freshmen $50 for one book seems like highway robbery to me.

* Took Gary grocery shopping, after he'd reminded me for the fifth time. Listened to cracks throughout the expedition: "Well, I used to know where that item was, but we haven't been here in so long that I've forgotten." "Yeah, it's a big bill, but that's what happens when you only shop once a month."

* Remembered that Fran wanted me to take her shopping last weekend, but that she let it go because of my cold. Felt like the world's most horrible person for not taking Fran shopping.

* Imagined Fran chewing on moving cartons for nourishment.

* In attempt to cheer myself up, bought adorable penguin PJs at VA Hospital store. Got home and discovered they were too small. Considered chewing on moving cartons for nourishment.

* And, finally: wrote incoherent, achronological blog post.

I'm sure there was more, but I've forgotten it.

Mom

My mother's back in the hospital with a set of three complicated pulmonary conditions. A home-health nurse came this morning, decided that Mom should be in the hospital (largely because she hasn't been eating), and called Mom's doctor, who agreed. The nurse then called the ambulance.

Mom's doctor told my sister that it's unclear whether the hospital can do anything; Lasix may or may not help.

My sister's at work, and will visit Mom when she can. She's in the same position I am, of trying to balance work and everyday life with family crisis, and having to make hourly decisions about priorities.

I'm going to finish up my class prep, bring Dad the Healthcare DPOA, drop off a birthday present for a friend, and then teach. But my phone's staying on today.

In Which We Split Hairs

One of the Stanford doctors called me this afternoon (I'd just been reading about him on the website, and was impressed that his undergrad degree was in English!). He was very nice, and very helpful about answering questions. But when I mentioned the life-expectancy issue, he said, "That would rule him out automatically." He hastened to assure me that the VA will fly Dad over there so the doctors in Palo Alto can make their own assessment, which was reassuring.

Sure enough, when I went back to the website, I saw this item in the list of exclusions:

19. Life expectancy < 12 months due to non-cardiac co-morbid conditions

All right, English majors, let's do a close reading of this, shall we? First of all, I believe that Dad's lowered life expectancy is because of his cardiac issues, not non-cardiac ones (to the extent that one can separate this stuff, the hip bone being connected to the leg bone and so forth and so on). Secondly, Dad and Gary both heard the doctor say "a year," whereas I heard "a year or less."

This is where I wish we'd tape-recorded the meeting, as several people suggested. I thought my Blackberry had that capability and then found out that it didn't, and because I was feeling so cruddy last night, I wasn't up to zipping out to Office Depot for a digital recorder.

But Palo Alto's willing to evaluate him, which is the first step. This is the timeline:

Once he gets there, it will take them 3-4 days to do a bunch of tests to determine if he's a candidate for the study.

If he's a candidate, his case has to be presented to a committee which votes yea or nea. I have no idea how long that takes.

If he's admitted into the study, he'll be randomized either to the control group or the valve. I'm assuming that wouldn't take too long, since it's done by computer.

If he's put in the control group, he'll be sent back to Reno for meds management. If he's chosen for the valve, he'll have the procedure a week or so following the decision, with another week of recuperation in the hospital, and will then be sent back to Reno (on their dime, I believe; I have to confirm that), although he'll have to return to Stanford every month or so for follow-up work.

This is all a best-case scenario, of course. Things could take much longer, or he might be bounced in the 3-4 days of testing. When I ran all this past him, he was very cranky about potentially having to go back to Stanford at regular intervals, but I said, "Dad, this is your chance, okay? You don't make the rules on this. They make the rules on this. If you want in on the study, you have to agree to their conditions, even if those are things you hate, like being on Coumadin" -- which we already know would be a requirement -- "or not drinking."

He grudgingly agreed. Poor Dad! He's used to bending every rule anyone throws down for him, and now he's running into a bunch he can't bend.

The doctor confirmed that Gary and I would be eligible to stay at Fisher House, although it's a little hard for me to believe that the place wouldn't be crammed with the families of service-connected vets, who very properly take priority. We can spring for a hotel if we need to, though. We've decided that we don't want to face commuting back and forth to the city.

I can't leave before Saturday morning, though. I have to give an exam on Friday night . . . although maybe I could have someone proctor it for me and FedEx me the bluebooks? Hmmmm . . . If so, we could leave Wednesday morning. Who knows if Dad will even have left then, though. The Palo Alto people are working on transport, but I have no idea how soon it might happen.

What else? Oh, yeah, the doctor we met with this morning told me to be sure I have Dad's medical power of attorney, which isn't the same as the general one. And it turns out that I don't. So I found the VA form for Healthcare POA and Advanced Directive on the web, filled it in as much as I could, and printed it out to bring to Dad tomorrow.

I also managed to get some of my own work done this afternoon, although I have more to do this evening!

Last Shot

The meeting went well. Our dear friend Sharon, who's had entirely too much experience navigating medical situations, came with me and Gary to lend another set of ears. Sharon and I were both wearing masks: she's getting over a cold, and I came down with a doozy last night. (I realized I was getting sick in the middle of a visit to Dad, and promptly left; I hope he doesn't get it!)

Here's the trial for which Dad's being considered. What's appealing about this is that it's precisely for people who can't tolerate surgery, and involves a much less invasive catheter procedure. Dad's a good candidate in that sense, because there's nothing else they can do for him. He asked the doctor what his life expectancy would be without the procedure -- a question I'd been planning to ask too -- and the doctor said gently, "A year or less. Maybe only weeks."

We were all very quiet for a second, and then Dad said, "Well, then, I have to do it. I'm not ready to accept only a year."

The trial description describes the primary outcome of the study as "freedom from death." You can't get much more succinct than that, although any ultimate freedom from death isn't the province of doctors.

Of course, Dad could still wind up in the control group; that's handled via computer, so the doctors themselves don't choose who goes where. If he's in the control group, they'll give him the very best medical management they can. I asked if, in that case, we can get a palliative-care consult, and the doctor said that he didn't know, but that as long as palliative care honored the medication regime, he thought it would be okay.

We still have tons and tons of questions the doctor couldn't answer, especially about financial matters. He was going to e-mail the Palo Alto people right after the meeting and try to set up a phone conference. At this point, though, I can't imagine that Dad won't want to go for it, since it's effectively his last chance.

On the ride home, Sharon and I agreed that, reading between the lines, the doctor seems to be concerned about whether Dad even has time to get to Palo Alto. "There was some urgency there," Sharon said.

Thank God Dad's so alert and so decided in his own wishes. I couldn't do this for him.

Meanwhile, Mom's still at home in Philly, but not doing well. She's having a lot of nausea and a lot of trouble breathing (my BIL took her to the doctor last week, and even on oxygen, her sat was only 91%). She's told my sister that she'd like a caretaker for a few hours a day, to do things like help her bathe, so Liz is going to look into that.

Mom can barely even talk on the phone. I wish I could be there, but I can't.

Right now, I need to work on feeling better myself, and on getting my work done. And on that note, I'm going to go downstairs now and make myself a pot of tea.

No PT. But Maybe Experimental Surgery.

First of all, thanks for all the supportive comments, especially from Terri and Anonymous. And Lee, I know I owe you e-mail!

Latest medical updates: Dad's medical team has decided, as of Friday, that he can't tolerate PT, because he has chest pains when he tries to walk. On Thursday, he told me that they were talking about sending him back to San Francisco. I had a small meltdown and asked the nurses to page Dad's doctor, who explained that they were collecting info from SF to see if, now that Dad's having chest pain, it would make more sense for him to have the surgery after all. I said that while it was of course his decision, I couldn't see putting him through the agony of open-heart surgery, and that if the VA couldn't do anything for him, it should send him home with home healthcare.

I asked the doctor if we were looking at hospice. He said no, Dad's not there yet, which was of course a tremendous relief. (Terri, you asked about advanced-directive matters: he's DNAR/DNI, and I have the forms to fill out so he can donate his body to a medical school, which is what he's wanted for years.)

Later during that visit, I was called out of the room by a nurse, who had instructions from some doctor or other to chew me out for bringing Dad orange juice. He's supposed to be on thick liquids, because he has swallowing problems after a stroke in 2001, and is at risk for aspiration pneumonia. In 2001, he was put on a feeding tube and told he'd need to be on it for the rest of his life: he refused. He wanted to eat and drink. He's been put on thick liquids before and hated them. He wants regular liquids. He knows the risks. Gary and Fran and I know the risks.

I explained all of this to the nurse. "He's 86 years old," I told her. "If you only give him thick liquids, he won't get any liquids at all, because he won't take them. How many pleasures does he have left? Let him have his orange juice. If he dies from drinking orange juice, at least he'll have been happy."

I also explained that I try to encourage safe swallowing as much as I can: I nag him to sit up straight, to tuck his chin when he swallows, to dry swallow after he's swallowed food or liquid. "And we haven't brought him any vodka," I told the nurse, "which he's been begging for." She laughed and looked rueful.

"Okay," she said. "Okay, I get it."

Yesterday, I got a phone message from a nutritionist who informed me snippily that if they put him back on a regular diet, they need clearance from me saying that I know he could die. "Aspiration pneumonia wouldn't be fun for him at all, but I guess there are worse ways to go." (Nice thing to leave on voicemail, huh?) She said he's not competent to make decisions about his diet, which is bunk: Dad's more clear-headed than I am right now. I got the message too late to call her back, which may be a good thing given the mood I was in.

Also on Friday, a physical therapist came and gave Dad some gentle exercises to do in bed over the weekend. Finally, something sensible!

This morning, I got a phone message from Dad saying, "It's important. Call me." When I reached him, he said, "Can you be here at 11:00 tomorrow morning?"

"Of course," I said. (I'll have to leave church early, but I can do that.) "Why?"

"A cardiologist was just in here. They're talking about sending me to Palo Alto."

"Palo Alto?" I proceeded to use very, very bad words, which made my father laugh. When I'd finally calmed down a bit, I said, "They're sending you to Stanford? Why?"

Evidently, Stanford and the VA are collaborating on a research study involving plastic heart valves. Dad may be a candidate for this, although he wouldn't know until he got there if he'd be part of the study group or the control group. "I'm inclined to go for it," he told me, "because it might extend my life." So he wants me there at 11:00 to meet with the cardiologist.

I think I'll bring Gary with me, so he can ask any questions I don't remember to ask. We're concerned about how long he'd have to be there, of course. We'd stay in SF again and commute the hour down to Stanford; we'd already discussed that possibility when the VA mentioned Palo Alto before.

Anyway, I told Dad that Gary and I will support whatever decision he makes.

Stay tuned for further adventures.

PT or no PT, Part II

Yesterday morning I talked to Dad, who said that the PT folks hadn't wanted to give him therapy because he had some chest pains. He was waiting to see the doctor on call.

At about 4:30 in the afternoon, I called him. He hadn't seen the doctor yet.

This morning, he called and said, "The news is bad." He'd had chest tightness this morning, and the PT folks now don't know if they can do PT at all. Dad said he'd had "a flurry" of people in to look at him, and that they were still coming, but that he had to go now because they were taking him to the vision clinic.

"What does that have to do with your chest pain?" I asked.

"Nothing," he answered.

My best guess is that the condition of his heart won't permit any exercise at all, but that the situation isn't grave enough for him to be in the ER. Otherwise, they'd surely take him to the ER. Right? Right?

I'll be going over there in a few hours to meet with his social worker, at which time I'll try to suss out the situation further. But first, I have to go for a walk.

Argh.

In Which We Go Temporarily Insane

Before I begin, let me assure my Dear Readers that -- after exercise, meds and a good night's sleep -- I'm feeling much better.

Now, backtrack to Monday morning, where I went to a meeting at work. Everybody at the university is mega-stressed out right now, given the budget situation on top of the holidays on top of the end of the semester. So before the meeting started, the four of us in the room had a small, impromptu support group where we vented about our stress levels. Several of us are having significant family drama on top of work pressures, and various people are struggling with insomnia, which has never been my problem. I mentioned laughingly that I had to refill my antidepressant script, and one of my colleagues shook her head and said, "Don't do that 'I don't need them' thing, okay?"

"Oh, no way," I told her. "Not right now."

And I meant it. Except that at 10:00 Monday night, I realized that I'd forgotten to pick up my refill. The pharmacy closes at 9:00. I'd put off refilling the script until the last minute, so I had no backup supply.

Yeah, okay. No biggie. Depression meds take a few weeks to start working anyway, which theoretically means that you should be able to miss a dose without disastrous consequences. I've done this before, and noticed a small dip but nothing major.

In this case, though, I'd also not exercised for the two previous days -- once because my schedule got too full, and once because my bathing suit disintegrated when I got to the gym -- and of course I've been under mega-stress since mid-October.

Yesterday I slept for many, many hours -- nine? ten? -- and woke up feeling very groggy. I sat around for a long time drinking coffee. Then I got ready to go to the gym, with an unripped suit. Just as I was getting ready to leave, the mail came, including a newsletter from the volunteer-chaplain coordinators at my hospital, happily listing a group of new chaplains, a number of whom will be working ER.

This is great news, because the ER always needs more coverage. But between the time when I read the newsletter and the time when I got into the pool, I descended into a state of desolation and paranoid certainty that I was being pushed out, that I was no good as a chaplain, that when I returned to my volunteer gig, there'd be no room for me (one of the other chaplains is working Thursdays, which started all this). I had the good sense to shoot off a brief e-mail to my supervisor, while I was still in the car, congratulating the program on their ER recruitment rate and asking if my shift would still be there when I got back.

In the pool, though, I sobbed during my forty minutes of laps, swamped by waves of grief and self-pity. It felt exactly the way I felt when I was a kid, during the many nights (years of nights) when I cried myself to sleep, wracked by the bone-deep certainty that I was a worthless person and that no one liked me, could like me or would ever like me.

Yup, I was a drama queen even when I was eight. See why I'm so sympathetic to psych patients? (If I were growing up now, I'd have been put on meds starting when I was three, but they didn't have meds back then. My mother, worried about me, occasionally dragged me to our family doc, who scratched his head and told me to exercise more, but that never took until I was in my twenties.)

The wave analogy fits perfectly, because this really does feel like a physical process, whole-body grief as unstoppable as labor or vomiting. The advantage of going through it in the swimming pool is that other swimmers can't see that you're crying, although having your goggles fill with salt water is more than a little annoying. (A friend of mine who's now on his second marriage told me once that after his divorce, he swam laps every day for months, because he could sob in the pool without anyone noticing.)

The good news is that even while I was going through this, there was some spot deep inside me that still felt calm, and Sane Susan was maintaining a soothing monolog. "C'mon, silly, you know why this is happening. It's your own fault for not taking your meds last night and for skipping exercise. You know what you need to do to get out of it. You're doing what you need to do to get out of it, right now. And you know you can survive this: you got through years of it when you were growing up, so one day of it now isn't going to destroy you."

And, sure enough, the swim made me feel better. So did getting an e-mail back fron my supervisor assuring me that they're keeping my shift open. "You've earned it." So did running into several friends in the locker room: a former student and a nurse who used to work in the ER, both of whom were sympathetic to elderly-parent stress.

And so, of course, did taking my meds last night. (When I talked to my sister on the phone yesterday and described sobbing in the pool for forty minutes, she yelped and said in exasperation, "Susan! Take your meds!" Yes, ma'am.)

At this point, I'm reasonably proud of myself for talking myself through it. But it definitely wasn't fun!

Note to self: From now on, refill meds when you still have a few pills left!

One Heckuva Taxi Ride

Yesterday, we got a statement from our local ambulance company for Dad's transportation to the air ambulance on his way to San Francisco. Mind you, this isn't the air-ambulance bill: it's the bill for the ground ambulance to pick up a stable patient and drive him to an airfield for transfer to an airplane.

Bill: $1,443.00.

Fortunately, the statement explains that Dad has insurance (thank God!) and that they just need his signature to process the claim. We can do that! No problemo!

There are a few things I don't get here. One is that I've read that paramedics make, like, $23,000 a year, which is criminal considering the work they do. They aren't getting this money, so where's it going?

Also, when Dad collapsed after getting here and was taken by ambulance to the nearest hospital, that bill was only (only!) $909. In that case, he needed medical treatment in our garage and on the ambulance: BP and 02 monitors, oxygen, an IV, etc. When he was picked up at the VA, all of that was already in place, right? So why was the second ride more expensive?

It must be distance. I know the first bill said that was a four-mile ride, and presumably the drive to the airfield was longer.

But, still. Dang!

How Will He Get Out of This One?

Figaro, our most athletic cat, performed one of his prodigious leaps this morning, from the floor of the bedroom to the top of the bathroom door. But then he had to figure out how to get down! Much pacing ensued, as you can see.

PT, or no PT?

Dad's still in the VA nursing home. He's been there a week now, and as of yesterday had received less than half an hour of physical therapy. I was planning to go over there today to ream somebody out, but he left a message this morning that he was going into PT and would probably be there until lunch. I'll go over this afternoon and suss out what the schedule will be, and how he's doing.

I also have to reschedule a meeting with his social worker, which in my befuddled state I set up in conflict with a faculty meeting on Friday. See, Dad has to be denied for Medicaid before the VA will pay for a bunch o' stuff. This won't be difficult, since to be eligible for Medicaid in Nevada, you have to have total assets of $2,000 or less (!), but since I'm currently in charge of his finances -- I who can't even handle my own! -- I've got to bring in the documentation.

And so it goes.

Belated Thanksgiving Post

I hope everybody had a great Thanksgiving!

Mine was bittersweet. We had a lovely meal at our friend Katharine's house -- she offered a toast to Dad's recovery, which moved me -- and then took leftovers to Dad at the hospital. He's now in the VA's rehab/nursing home/hospice unit, the "Community Living Center," where the staff seems more responsive to immediate needs than at the previous nursing home (people show up when you press the call light, and an LPN was very good about answering my questions about Dad's care), but where the PT schedule is much less rigorous. He'll have PT today, but then not again until Monday.

Dad enjoyed the meal we brought him. He'd gone on a self-described "hunger strike" at lunch, protesting the cruddy food (or, rather, the fact that they have him on a soft-food only diet, which he was okay with a few weeks ago, but loathes now; I take this as a sign that he's feeling better). We had a nice visit, punctuated only by the alarm going off as one of the Alzheimer's patients tried to leave the unit in his wheelchair. The guy in the room next to Dad's told me this happens several times a night; it drives him nuts. It makes me sad. That resident probably doesn't know where he is, but he's very certain that he wants to be somewhere else.

Driving home, I got weepy. There are any number of logical reasons for this. I haven't exercised for a few days, which always ramps up my depression symptoms. I was sad about the Alzheimer's guy. I hated leaving Dad in the nursing home, even though we hope he'll get out soon, and, most simply, I'm just worn out from the past month-plus of stress and travel.

But part of it, accentuated by Thanksgiving, was my perennial terror of being alone when I'm old. When I asked Dad what he was thankful for, he said that he was thankful for his support system, especially me and Gary and Fran. Because Gary and I don't have kids, and because he's older than I am, it's far from clear that I'll have a similar support system when, God willing, I get to Dad's age. The past few weeks have made me acutely aware of how important that is, and being at Katharine's house, with four generations gathered around the table, underscored the point.

And yes, I'll probably have friends when I become elderly, especially if I remain active at church (and I see no reason why that should change!). But I'm not sure that friends can be expected to go the distance family would, although of course not all relatives are ideal in these circumstances either. Even if we'd had kids -- and we had excellent reasons for not doing so -- there's no guarantee that they would have been loving and attentive in our old age. Fran's kids aren't; they've given her nothing but heartache.

My faith tells me that God is always with me, but my experience tells me that a lot of old people, especially old women, wind up alone and warehoused, desperately wanting to be somewhere else but having nowhere else to go. And yesterday made me newly afraid of that, even as I treasured the time I had with family and friends.

On a more positive note, I got a lot of knitting done yesterday, and this morning I taught myself how to knit cables. And this afternoon I'll swim, which will undoubtedly make everything look brighter!

Oh, my brother-in-law responded to the car-vs.-pole mishap by suggesting that I buy a used ambulance. Heh!

Homeward Bound!

During our lunchtime walk today, Gary and I found this labyrinth on a cliff overlooking the Pacific at Mile Rock Beach. Delighted, I carefully made my way in and then back out again.

Fittingly enough, when we got back to the hospital, we learned that we may be leaving the labyrinth of medical treatment: Dad's being shipped back to the Reno VA via ambulance at about ten tonight, and Gary and I will drive home tomorrow morning. Dad's blood pressure was low this morning, which evidently justified the medical transfer, and the Reno VA not only accepted him but had a bad right away. Hallelujah! He's going to a regular hospital bed, though, not an ICU room, and we hope he'll get to go home before too long. At any rate, he'll now be 200+ miles closer than he was!

We got a tremendous treat at the VA today when we ventured into another building to look for the PX. The hallways were lined with beautiful photographs from the Dog Tags project, portraits of veterans with their pets. The photos were very moving, and Gary and I loved looking at them. I hope the photographer, Don Crowe, publishes a book so that more people can see them.

On the downside, this morning I backed into a concrete pole in the VA parking lot and smashed several large holes in my right fender. Sigh. It's a pretty old car, and the lights still work, so I think the damage is primarily cosmetic. Things could be a lot worse. But the incident was still upsetting.

I hope we have good weather for our drive tomorrow, and not too much pre-Thanksgiving traffic!

The Coolest Patient

This morning, one of Dad's doctors told us that her team has voted him "the coolest patient on the floor," partly because of his nifty sunglasses. We bought them for him when he was in the oceanview room, where the sun got pretty bright, and he's been wearing them steadily ever since. The doctor also commented appreciatively on how good he is about letting medical and nursing students practice on him. Dad's happy to do that, partly because he really cares about education and partly because he's always happy to talk to new people.

The doctor teased him about how he always has his little radio tuned to NPR. "One morning I came in and your radio was off, and I knew you must be feeling sick! I was like, 'We may have to put him in the ICU!'"

Everyone, from doctors to janitors, notices when Dad's radio isn't on. "Hey!" said the guy who showed up to empty the trash yesterday. "Where's your music? You always have your music on. I can't dance if you don't have your music on!"

We hope to learn tomorrow what will be happening next: with any luck, VA-provided transport to a SNF, which Dad plans to leave as soon as possible. Everyone will be much happier when he can play his radio at home!

The only possible hitch is that he's reported new swallowing problems, a lump in his throat on top of the difficulties with swallowing he's had since his stroke in 2001. He had an upper GI last week, and I'm sure that would have shown anything abnormal in his throat, but Gary and I hope this latest issue can be resolved without more delays.

In the meantime, here's my other Cool Guy. I took this photo during our beach walk this afternoon. Gary hates having his photo taken, and took his revenge on me for this one by not alerting me to the fact that a wave was about to soak my shoes. Luckily, I was wearing waterproof Keen sandals and quick-drying fleece socks!

We had a fine adventure clambering among the ruins of the Sutro Baths. I have a morbid fear of falling and don't trust my balance, so walking along the tops of stone walls, even fairly wide ones, was a bit nerve-wracking for me, especially since the walkways were crowded with other tourists. Climbing up the steep slope from which I took this photo was actually easier: I don't mind heights if I'm going up, and especially not if I'm using both my feet and my hands to climb, as I was in this case. Gary commented admiringly, "You're becoming a climber in your old age."

Between the stone walkways and the scramble up the hill, we spent some time on a pocket beach which afforded the usual Bay-Area gorgeous views. Here's one of surf crashing against rocks. This is a very pretty place, and I wish I could bring the beach home with me.

After the Sutro-Baths adventure, we took a more sedate, level walk on Ocean Beach, always one of my favorite spots. Ours walks there drive Gary crazy, though: he's into walking as aerobic exercise, whereas I view these expeditions as a chance to pat every dog on the beach and look for interesting rocks. I didn't find any good rocks today, but there were tons of adorable dogs. At one point, I was patting two Corgis and two English Bulldogs, more or less simultaneously, and one of the owners told Gary, "You'd better get her a dog."

I don't want a dog (largely because a dog would make Gary and the three cats miserable) but I sure enjoy other people's!

After our beach walk, we went back to the VA and visited with Dad for a little while, and then went out to dinner with our friend Ellen. We went to a Vietnamese place that had been recommended by her sister, and that isn't far from the VA. I ordered soup; Ellen and Gary ordered crab.

Y'know those horror movies from the 1950s, the ones about giant radioactive crabs that, oh, invade San Francisco? We had two of those crabs for dinner. We had a lot of crab, and we all got very messy eating it. It's good stuff, but the meat isn't easy to extract, even when the crab you're eating is larger than your head.

And then the bill came, and it turned out that each crab had cost $50. *Gulp* But as I told Gary on our way back to the car, at least the dinner was an adventure.

A Restful Day of No Surprises

I slept really late this morning. I've been exhausted, which doesn't make sense on the face of it, since all I've been doing is sitting around hospitals, but I suspect that the stress and worry of the last month are catching up with me. In any case, if I need to sleep, I'm going to sleep; the last thing anyone needs is for me to get sick!

I had a luxurious breakfast of lox with soy cream cheese on a bagel. The route to and from the hospital takes me and Gary right past Adronico's, a wonderful grocery store with all kinds of yummy stuff, including a refreshingly wide selection of non-dairy cheese and ice-cream substitutes. We've been taking advantage of it!

When we got to the hospital, we visited with Dad for about two hours, which included his transfer to another room, and then went out for lunch and a walk. We'd planned to walk on the beach, but instead took a left rather than a right and wound up on the Coastal Trail through Lands End, which winds through beautiful trees (see photos above) and features fabulous views of the Golden Gate Bridge, as you can see here.

The trail also looks down on gorgeous scenes of crashing surf, including this lovely little beach. Oh, and I got my doggie fix, times about 500. We saw all kinds of dogs: big dogs, small dogs, young dogs, old dogs. I patted as many as I could. Gary doesn't care much for dogs, but even he was impressed by my favorite: an 18-month old female Caucasian Ovcharka, a Russian sheepdog the size of a small horse. Evidently the males are twice as large. This dog had feet like dinner platters, with lots of fur between the toes, and a stately sweeping plume of a tail. She was a beauty, but I'm sure she's a lot to handle! Her person adopted her from the SPCA; she'd been abused and abandoned, poor thing, but she looks very happy now. When I was patting and admiring her, her human told me that he's always glad when other people interact with her, because her breed needs more socialization than many other dogs.

We walked for about two hours, and returned to the VA to find Dad asleep, although he woke up about half an hour later. We stayed with him and listened to classical music while he ate his dinner, and then we left to come home and eat our own.

So, all in all, it was a calm, relaxing day. But I'm still exhausted!

Back in SF

Here's another view from Dad's hospital window. We arrived back in San Francisco last night, after a call from Dad saying that he was being sent back to the Reno hospital, and that the SF VA would handle the transport, but that they had to wait for a bed. We decided to drive down, but joked that Dad might not be there by the time we arrived.

Instead, it's now clear that we'll be here at least until Monday, and quite possibly longer. Dad's had neither surgery nor catheterization -- on the grounds that the first would involve replacing two valves, for which he isn't strong enough, while the second wouldn't accomplish anything at this point -- so they're ready to send him back to Reno. The question is where and how, since they've decided that he doesn't need to be in the hospital anymore.

If he goes home, we have to drive him, a prospect that fills both me and Gary with alarm verging on terror. He's been choking a lot: what if he chokes in the car? What if he passes out when we're in the mountains fifty miles from the nearest hospital?

But he may not go home. He may go to a Skilled Nursing Facility, or SNF, pronounced "sniff." The physical-therapy and occupational-therapy people have evidently recommended two weeks of rehab, and Gary and I think that's a good idea, although Dad's less than thrilled by the prospect.

Dad's very nice doctor told us that if he goes to a sniff, she and the social worker will try to arrange transport, but that I should be trying to make my own arrangements in the meantime. The respiratory therapist told us that if he gets sent to a sniff, he'll definitely be transported by van. Whom should we believe? I guess we'll find out when he's ready to leave.

Meanwhile, when a bed in a stepdown unit becomes available in the SF VA, he'll be transferred there to free up the acute-care bed he's currently in. On Monday, the OT and PT people will reevaluate him. If they decide he can go home, we all leave Monday. If they opt for the sniff, Arrangements Must Be Made, which could take until Wednesday.

My dad's depressed about hanging around his hospital -- despite the gorgeous view of the ocean -- and he hates the idea of the sniff. Gary and I are hoping fervently for the sniff, both because of the transport issue and because we don't think he's ready to go home yet, even with home healthcare. It hasn't escaped our notice that the VA flew him out here for procedures that weren't available in Reno, and then didn't even do the procedures. *Sniff.*

Meanwhile, here's a photo my sister sent me of our mom when she was about to go home from the hospital. Mom's been told that she needs a new heart valve but won't be getting it because she's too old to be a good surgical candidate. Does this sound familiar? She refused to go to a nursing home for the physical therapy her doctors have recommended, even though she's been falling a lot, and even though the stairs in my sister's house are so steep that they make me nervous when I'm on them. So Mom's home now; my sister says she's doing okay in some respects but not in others, but I don't have details.

So that's the news. I'll post an update if anything changes (which it seems to be doing every five minutes, in through here).

Thanks to everyone for the supportive comments. I'm sorry I haven't had time to answer them individually!

Now It's Mom

My mother's in the hospital in Philadelphia with pneumonia and the beginnings of CHF (congestive heart failure). This is actually a relief to my mother, who expects to feel better there, and also to me, since she's been falling a lot and I've been worried. My sister and I have very different approaches to calling 911, and I got cranky with her yesterday because it sounded to me like a call would have been appropriate then. I'm glad she called this morning.

I'm also glad that my sister and I only have one parent apiece to deal with in person. Part of the rationale for Dad moving out here was to give my sister a break from caring for both parents, and right now, she must indeed be happy about that.

Back Home

We're now back in Reno, supposedly until Thursday morning, although I never expect anything to stay stable for long these days.

We stopped for gas mid-trip, and I checked my Blackberry to find an e-mail from one of our priests saying that a prayer shawl for my father is waiting at the church. (The woman in our congregation who makes them doesn't like to be acknowledged in public, but I know who she is!) I was very moved by that, and so was Dad when I called him to tell him.

Must get back to class prep for tomorrow. What day is this? What state am I in?

Yet Another Plan

Gary and I got to Dad's hospital room, with its gorgeous ocean view, around 9:30 this morning. Within two hours, we'd met a cardiology fellow, the attending, and the chief of the cardiology service (the person we'd been told had categorically denied Dad the valve replacement), not to mention several different nurses and a respiratory therapist.

We'd come here thinking that Dad would have the angiogram on Monday, and that it was important that I be on hand for the angiogram. However, the new plan is to work him up very thoroughly, organ system by organ system (they're calling in a GI consult, for instance, to see if there might be some GI reason for his anemia). The chief told us that Dad will be in the hospital a minimum of a week while they try to figure out if he can have, or wants, the valve replacement.

"But I thought you said you absolutely wouldn't do the valve replacement," I said. "That's what Reno told us."

She shook her head. "I never said that." She did say that he's high risk, but we already knew that: this is now all a matter of weighing risk factors.

She also said -- first time we've heard this -- that anyone with any heart condition is going to do much worse at altitude than at sea level, which makes Reno more dangerous medically for Dad than Phlly was. He'd asked his Philly doctors about this and they said it wasn't an appreciably greater risk. Oy!

Anyway, when I mentioned my teaching schedule, the doctor advised -- and Dad agreed -- that I should go back to Reno to teach my Monday-Wednesday classes, and return to San Francisco on Thursday. The angiogram will be done Wednesday or Thursday, probably, but they can talk to me on the phone if anything crucial comes up. The chief doesn't think I need to be on site for that, although I would in the event of surgery.

So Gary and I will drive back over the mountains tomorrow. My friend Ellen is letting us keep the key to her parents' house so we can use it again next weekend. What a godsend! And there's even someone at church who can take my preaching date, so that's all worked out very smoothly. (I haven't been to church since October 12, and I'm starting to wonder if I'll ever be back!)

I wonder where we'll be for Thanksgiving. Well, we'll work that out when we get there. One day at a time.

Anyway, all things considered, it was a pleasant day. We sat in Dad's room and listened to folk music on the radio, and I knitted. For lunch, Gary and I went to the Seal Rock Inn, within walking distance of the VA, which we think might be a fun place to spend spring break, too. For dinner, we joined Ellen and her family for her birthday celebration at a nice Italian restaurant.

We're assured of good driving weather tomorrow, since the weather here is gorgeous this weekend. I hope we have good driving weather next Thursday, too. I'm certainly putting miles on the car this month!

Dad's View from the SF VA

Pretty nice, eh?

We're in SF!

Fran and I were at the hospital this afternoon when the resident walked in, smiling, and announced that Dad would be transported at 6:00.

It was then 3:20. I raced to Fran's place to drop her off and then raced home, where Gary and I put out tons of catfood, threw miscellaneous luggage into the car, and took off to try to get across the mountains before dark (which we did, just barely). We were treated to spectacular Sierra sunsets, and in Sacramento, I saw a huge, orange full moon rising in the rearview mirror.

Dad took off about two hours later than planned, and landed just as we were finishing a light supper -- I was ravenous! -- at our friend Ellen's house. We're now at her parents' house (they aren't here at the moment); it's a lovely place with Internet, thank goodness, so I can use my laptop and not just my Blackberry. This will make handling work logistics for next week infinitely easier!

Okay, get this: Dad tells me that the woman in charge of transport told him that if he's okay in San Francisco, he'll be discharged in San Francisco, and will have to make his own arrangements to get home. He was told that he can book a plane flight or take a bus. What the hell? First of all, one of the nurses told me they'd fly him back to Reno for rehab, which makes sense: lying around in an ICU for a week makes you weak, especially when you're 86! How can they tell him to make his own travel arrangements? If they flew him 200 miles for a procedure not offered in Reno, shouldn't they also be responsible for getting him home? Dad has family and resources, but what would a patient do in this situation if he didn't?

We would, of course, drive him, but I'd be nervous about having him in the car for four hours straight out of the hospital, especially given altitude changes over the mountains.

This has to be wrong, doesn't it? I said to Dad, "If this is true, I think it's terrible, and I plan to fight it." Dad said, "I think you'll find that they're adamant."

Well, one thing at a time. We decided (with Dad's consent) not to go to the hospital tonight, because it was too late. We'll go tomorrow morning. In the meantime, we're all safe and have beds to sleep in. Thanks be to God!

Autumn Still Life

Gary and I just got back from a walk, on which I took this picture. I liked the play of light and shadow.

Still Still in Reno

Dad's been pronounced stable enough to travel, and the cardiologist in SF has formally accepted him. I was at the hospital when these things happened this morning, and the very nice ICU doc said, "Are you ready to go? You need to be ready."

So I raced home, finished packing, and calculated how late we could leave and still have light getting across the mountains.

All to no avail, because a bed never opened up. The day nurse told Dad he'd probably go next week. The night nurse told him he'll go whenever a bed becomes available (which could mean tomorrow or over the weekend, theoretically).

Que sera sera, but this "hurry up and wait" business is becoming very draining.

Still in Reno

This morning Dad said he'd been told he'd be transported in two or three hours, so I canceled classes and got all hyped up on adrenaline again.

Then it turned out that he wasn't going today after all. The good news, though, is that he's off the dopamine, which presumably means he can go to a telemetry bed and doesn't need ICU. Also, he had an ultrasound of his carotid arteries which came out fine, and he got a blood transfusion to boost his hemoglobin count. He loves the Reno VA, and says it's the best one he's seen.

I could have reinstated my later class, but realized that I'd hit an emotional and physical wall: I felt like I was moving underwater, and like my sentences weren't quite coming out in English, and like my emotional barometer was completely out of whack. (This is reasonable after a month of insane stress, right? I'm not just being a wuss?) So I decided to keep the class canceled so I could come home, eat a hot dinner, pack, and crawl into bed. I managed the hot dinner: the other two haven't quite happened yet.

I want to thank everybody for all the amazing support we've gotten. One of my grad students gave me a beautiful stone heart, made of a mineral reputed to have healing qualities, and told me she'd prayed over it for me and Dad and then kept it close to her own heart "to keep it charged up." I've gotten many kind messages from other students. My colleagues are being very supportive. Church folk have been amazing: I got a call tonight from my church friend Bonnie, who's a nurse and visited Dad in the nursing home, asking if she could do anything to help. She's probably not working tomorrow, and Fran's decided not to go to SF -- partly to deal with her own health issues, including going to a doctor's appointment tomorrow afternoon -- so Bonnie offered to take Fran to and from the doctor and also take her shopping.

And, of course, my blog readers have been wonderful! Thank you for the messages you've sent, both public and private. I told Dad that Terri sent extra hugs and kisses and that Lee wanted him to post on the blog. He pondered a bit and then said, "Well, you can post on your blog from me that all hugs and kisses are lovingly received."

It's nice to feel overwhelmed by support after feeling overwhelmed by stress!

I asked Dad how he was feeling about everything. He says he's doing fine, and that his attitude is basically that he'll go along with whatever the doctors want. Fran seems to be holding up remarkably well too, partly because she's so grateful to everyone who's helped us out.

I should go try to pack now, and then crawl into bed. Please pray that we finally make it to the city tomorrow!

Irreversible Damage

The doctors in San Francisco have refused to do open-heart surgery on my father, because they feel the risk is too great in his case and because he already has irreversible damage to his heart that a valve replacement couldn't fix.

They're still willing to do the cardiac catheterization, though -- a much lower-risk procedure -- which might involve putting in stents, which might improve his quality of life. That procedure still has to happen in San Francisco, because Reno does diagnostic cath-lab stuff, but no therapeutic procedures.

The average survival time for someone in Dad's condition is two years. Being realistic, I know that someone who's eighty-six is a short-timer anyway, but I'd like his remaining time to be as vigorous and healthy as possible, and he's now lost his remaining chance of any dramatic improvement in quality of life. Of course, given the recovery time from open-heart surgery, it probably all evens out anyway.

Still, I was pretty upset when I heard the news. Fran told me when I went to the apartment to pick her up; Dad had talked to her on the phone. I thought it must be wrong, that one of them had misheard something. When I got to the ICU, I demanded that the nurse tell me what was going on. She said that Dad should tell me, but two doctors (both young and female) showed up very shortly thereafter, probably sent by the nurse, and explained everything. They understood why I was upset, but I still felt a bit like they were treating me like I was the problem.

Which, in that moment, I guess I was, since Dad was very calm about everything and Fran kept cracking jokes. (What's that I tell medical students? All family members react differently to bad news?)

Intellectually, I know that medical treatment reaches a point of diminishing returns, and I've always known my father was a bad surgical candidate; I was surprised when we were told he'd have the surgery. And I'm not a fan of torturing the elderly and infirm with horribly invasive and painful procedures, honest.

But emotionally, I felt like I'd just been punched in the stomach. Hope had been held out and snatched away again, and Dad had just been given two years to live. We'd just arrived at the "nothing more we can do for him" point. (The doctors said that there's a miniscule chance that when the SF team does the cath procedure, which is more informative than the other tests that have been done so far, they'll decide to go ahead with the surgery . . . but they emphasized that I shouldn't get my hopes up.)

I ranted a bit to one of the nurses -- she was Dad's nurse yesterday, but not today -- who nodded sympathetically and gave me a hug. I told everyone I was going downstairs to find the chapel. As I headed out the double locking ICU doors, today's nurse called out, "Susan! Wait! I want to talk to you!"

She followed me out into the hall and gave me a vigorous pep talk: reminded me that Dad's spent his life beating the odds (he was given six months to live in 1976, after all), told me what remarkable shape he's in given his age and condition. "He's the only patient his age I've ever had who doesn't have sundowners," the syndrome where elderly people become confused in the afternoon and evening. She told me what a "wonderful, smart" man he is, and how everyone in the unit goes into his room to get his views on political and economic events, and how proud he is of me and my sister. "I told him he should write a book, because he's had such an amazing life. I adore your Dad."

I adore my Dad too. I want him to be around for as long as possible.

She also ventured the opinion that "there are too many cooks in this kitchen." We're dealing with the cardiac team, the ICU team, and the San Francisco team, and they all have different opinions about what's appropriate. For instance, the doctors I talked to today said they hope to fly him out tomorrow, but other people on the medical staff believe that he shouldn't fly while he's on a dopamine IV, which is raising his blood pressure to a normal range. So we're definitely waiting for an ICU bed in San Francisco, but we may also be waiting for Dad to get off the dopamine drip, which so far hasn't been possible, because when they try it, his BP plummets again.

I appreciated the nurse's efforts to comfort me, but I still went to find the chapel. It's a pretty chapel, very small. The chaplain's office was dark and locked. I tried to pray, got distracted by noises from the hall, went back upstairs, and calmed myself with knitting.

Then I drove Fran home, and Gary and I went out for a decadent anniversary meal. I'm afraid I wasn't very good company tonight, either in the hospital or in the restaurant.

So, anyway, we're still in limbo. I don't know if he's going or when he's going. All I know is that if he goes, less will happen there than originally planned.

Birthday Boy

Not Quite Yet

Well, SF doesn't have an ICU bed, so Reno's trying to wean Dad off his dopamine drip so he can go to a telemetry bed instead. However, his nurse told me that she doesn't think they'll be able to wean him very quickly.

Stay tuned.

Road Trip

Dad was doing much better this morning: so much better that he'll be airlifted to San Francisco as soon as they can find a bed for him and arrange transport. That could happen as soon as this evening.

They'll do the cardiac-cath procedure there, too. They'd have to repeat it there anyway, and they don't want him to have two, since the dye puts pressure on his already compromised kidneys.

He has a 70 percent chance of surviving the surgery, but if he doesn't have the surgery, his chances of living another two years are only 50 percent, and his quality of life will be poor. Of course, his quality of life will be poor right after the surgery, too, but it represents his best hope of ever feeling better.

I'm waiting for the VA to call and tell me when the transport is happening. I have no idea how long I'll be gone, of course, which makes arranging for class coverage a bit dicey, but I'll figure something out in the next hour or two.

If there isn't a bed at the San Francisco VA, he may go to the one in Palo Alto. In that case, we'd probably still stay in the city, although of course the drive to the hospital would be much longer and hairier. We're greatly blessed by the fact that one of my best friends lives in San Francisco, and her parents have a house there which they aren't using at the moment, where she's told us we're welcome to stay. (Thank you, Ellen!)

I'll post specifics when I have them. In the meantime, Gary's home doing laundry and packing, and I'm at work, clutching my cell phone.

Please pray for good weather. I hate driving in any amount of snow, but snow over Donner Pass can close I-80.

Hope and Healing

Today is the Grand Opening of Hope and Healing, the website about faith and wellness for which I'm writing a monthly column called "Bodily Blessings."

If you go to their homepage, you'll see a link to my first column, which is about knitting. This piece is very dear to me, and the timing of the publication is poignant. Tomorrow's the first anniversary both of Bill's death and of the scattering of Scott's ashes. (Tomorrow's also my and Gary's thirteenth wedding anniversary, the nineteenth anniversary of the day we met, and Bali's second birthday . . . and Veteran's Day, of course. Talk about a bittersweet occasion!)

I hope you enjoy the column, and the rest of the site.

Dad's Condition

My father's in "guarded" condition (better than "serious," but not as good as "stable") in the ICU. He has low blood pressure, and his kidneys aren't working right, and the meds that would raise his blood pressure would also "nuke his kidneys," to quote the doctor's colorful phrase.

Ideally, the next step will be a cardiac catheterization to see what's going on other than the bad valve (which they know he has, and which could have caused the heart attack). However, at the moment his BP's too low for him to tolerate that procedure, so they can't go in until both the BP and the kidney issues have improved.

After he goes to the cath lab, the ideal next step would be valve replacement -- open-heart surgery -- which the doctor estimates he'd have a seventy percent chance of surviving. The problem with that, of course, is that they'd have to crack open his chest. He had a really tough time recovering from his four-way bypass seven years ago, and he's frailer now than he was then.

If they do the surgery, he'll be care-flighted to the San Francisco VA for it, since Reno doesn't have the proper facilities. But there are a lot of "ifs" floating around here, and the doctors have no idea what will happen. We're taking it day by day.

He was in excellent spirits this morning. This afternoon, he conked out and slept so deeply that neither the nurse nor I could rouse him when it was time to take his meds (the nurse was less worried about that than I'd have been if she hadn't been there). I like the medical staff, and I think he's getting good and appropriate care.

This morning, he decided that he wants to be DNR ("Do Not Resuscitate," medicalese for "if my heart stops, let me go"), so he's now wearing a bright blue bracelet announcing his code status. While the doctor, intern and resident were briefing him and me and Fran on all the steps and permutations and complications, Dad kept waving at the ceiling and saying cheerfully, "Hi, heaven, I'm on my way!"

This was purely a figure of speech; he's a devout atheist who believes neither in heaven nor hell. But later, when one of the doctors told me that he wasn't sure Dad understood his situation, I said, "He understands his situation exactly. That's why he was saying hello to heaven." (Don't these people listen?)

But with any luck, we can delay that for a little while.

Another Day, Another Hospital

Yesterday, Gary and I and four friends spent several hours moving unwanted furniture out of the apartment and wanted furniture into it. Then Gary and I spent several more hours unpacking. Then I went grocery shopping for Dad and Fran.

I got home around 7:00, ate dinner, and settled in with a pot of peppermint tea to grade papers. At 8:30 the phone rang: it was Fran, panicking because Dad had just had a strange shaking spell and she couldn't get him to bed.

I rushed over there; he was conscious and didn't want me to call anyone, but I called home health anyway. They advised me to call 911, and the ambulance crew actually got permission to take him to the VA hospital. Dad and I were joking, "Well, this is one way to get to the VA!"

At the VA, various tests revealed that he'd had a heart attack, and he was admitted to ICU. He was alert, joking and relatively cheerful through all of this. I spoke to him this morning, and he said he feels "chipper," although he had a central line put in last night, and that's been bleeding fairly steadily.

I didn't go to church this morning; I did something to my back moving furniture yesterday, and had a lot of trouble bending over to retrieve cat food bowls this morning, so I wanted to give my muscles some time to stretch out and rest. I'll pick Fran up around 11:00 and we'll go to the hospital to see Dad.

It was strange being in the VA ER. It's tiny -- smaller than the old one at my hospital -- and was staffed by one doctor, two nurses, and a few techs. I only saw one other patient there, who was also being admitted to ICU. Dad raved about the prompt service he got, and when I said, "Well, it seems quiet here tonight" (I didn't want to repeat my standard line about how you never want to be the center of attention in an ER), the tech drawing his blood shook her head and said, "This is medium busy."

Jeez. And they routinely turn away ambulances? I know that's a function of critical-care beds and not of ER gurneys, but still.

Also, my age is showing. The paramedics all looked like they were twelve, and the doctor looked fifteen, although he seemed as harried and overworked as any doc at my hospital. The nurse was my age, thank goodness.

Anyway, everyone was very nice, and Dad was pleased to have gotten an extra-large cubicle, although to me, it looked suspiciously like a code room (another thing I didn't want to tell him).

I am, as you might imagine, tired as well as sore, and I still have all that grading to do. We'll see how the day goes. I'll call in sick tomorrow if I have to, especially if my back isn't better, although I certainly don't want to.

Dad

Fran

Sabbatical

I forgot to mention that I'm taking a sabbatical from my volunteer work for the month of November, so I can concentrate on getting Dad and Fran settled. I just hope I get to go back in December, as planned!

When I was with Fran in the ER yesterday, some of the staff thought I was working, and when I explained that I've been spending nearly as much time there as a civilian as when I volunteer, they laughed. I'm just glad I've been able to take Dad and Fran to an ER where I know people (and know where the warm blankets are!).

Never a Dull Moment

Yesterday, Dad finally came home from the nursing home. Hurrah! Of course, the discharge procedure involved endless bouts of sitting around: waiting for the doctor, waiting for nurses, waiting for paperwork, waiting for an oxygen cannister for Dad to take home. With all of that, we didn't exactly get discharge instructions; a nurse shoved a shopping bag full of meds and a ream of paperwork at me and said, more or less, "Here you go! Bye, now!"

When we got to the apartment, we had to wait some more, for the home oxygen guy to show up. In the meantime, we tried to make sense of the shopping bag of meds: Dad ultimately decided to keep taking his old stuff from the Philly VA until he can get into the Reno VA. Then the oxygen guy came and showed me how to switch to a new tank, a complicated procedure involving tricky bits of machinery which I'm afraid I didn't retain very well. I like the concentrator much better: all you have to worry about is an on/off switch, not levers and washers and guages and the fear that if you bump the thing funny, it will take off like a rocket across your living room.

After the washers and guages, we moved on to yet another ream of paperwork. I just signed whatever was in front of me. (At this point, I'd sign a Ritz cracker if you put it in front of me.) During this process, Dad lay down to take a nap, whereupon the oxygen guy -- no fool he -- started giving me a stern little pep talk. "He needs his rest, and you need your rest. I see this all the time: families get completely overwhelmed. I've taken care of my own parents, so I know what it's like. You need to take care of yourself, okay?"

I knew that. I really did. But I was almost absurdly grateful that one of Dad's caregivers was taking time to pay attention to what I needed, instead of just asking me to sign reams of paperwork (which I was doing even during the peptalk), sort out a pharmacy's worth of prescriptions, and somehow "make" Dad follow instructions. (Yeah, good luck with that. You herd cats much? And how's that working out for you?)

After the oxygen guy left, I took Fran to the bank and then grocery shopping, and carried stuff upstairs for her and helped her put it away. Then I went home, exhausted -- I'd hoped to swim yesterday, but no such luck -- and tried without success to take a nap. Then Gary and I went out to dinner, where I inhaled gallons of liquid and acres of food (when I got home from Dad's apartment, I realized that I'd had nothing to drink since my morning coffee, and that I hadn't exactly had a large lunch, either).

Before we left for dinner, the home healthcare nurse called to say she'd be visiting Dad this morning, and could I be there? I said I would. She asked me to hide any meds he wasn't actually taking so she wouldn't have to list them on her sheet, and I said plaintively, "That means I'd have to go back over there tonight."

"Never mind," she said. "We'll do it tomorrow."

This morning I woke up bright and early and got a swim in before going over to meet the home nurse. Hurrah! And a good thing, too. When I got there, the home nurse wasn't there yet, but Dad and Fran were both upset. She'd had strange dizzy spells, one in the evening and one in the morning, and Dad -- whose mother died of a stroke, and died in his arms -- was terrified that they were TIAs.

Me: "If you thought she was having a stroke, why didn't you call 911?"

Dad: "I didn't want to scare her."

Me: "She has to go to the hospital."

Fran: "I'm fine now. I don't want to go to the hospital."

Dad: "You have to go to the hospital. I need you to be around for a while."

Fran: "I feel fine now."

Me: "You could feel fine now and then stroke out. Little strokes can precede big ones. You have to go to the hospital." (Yeah, I know, I shouldn't have scared her like that, but it's the truth.)

Fran: "I don't want to. Can we wait until the nurse comes?"

Me: "No. You have to go now." (thinking, You should have gone last night.) "I'll drive you over there and then I'll come back here to meet the nurse, okay?"

And yeah, I know: I should have called 911 myself. But Dad was afraid of another bill, and she really did seem fine, and I wasn't thinking clearly. In the event, we got to the hospital without any trouble, and they took her right away and ran a bunch of tests, all of which were normal, and she was discharged a mere three hours later. People spend longer than that in the waiting room! She's supposed to follow up with a neurologist, with whom I'll make an appointment next week (I called today, but the office closes early on Friday).

So that was a huge relief. In the meantime, I'd zipped back to the apartment and met the home nurse, a kind soul who thanked me for having already hidden one shopping bag of meds in the closet, and who patiently cataloged the other shopping bag of meds, and who's going to dispatch an army of visiting healthcare professionals for Dad. His dance card includes an occupational therapist, a physical therapist, a home health aide to help him shower, and a social worker who'll help him (and Fran) get set up with local services. I'm just glad that all these people are making sure he's okay. While he's getting home healthcare, though, he's under a weird form of house arrest: he can go to any doctor's appointment, can leave the house once a week to grocery shop, and can attend special events like birthday parties, but otherwise has to stay home.

Very strange. He had home health both in Mississippi and in Pennsylvania, and I don't remember anything like this before. But Dad didn't protest.

I'm very glad that Medicare will be covering this. Each nurse's visit costs $158; therapy visits are $200. We weren't given a price for the social worker, but I'm sure that's steep, too. Yowsa!

Anyway, he and Fran were in good spirits when I left them; the morning's scare had become something we could all laugh about. Let's hope it stays that way!

Tomorrow's the Grand Moving Adventure, in which we remove extra furniture from the apartment and move in the stuff that Fran wants from the storage unit. After that, unpacking can begin in earnest.

Stay tuned for more exciting adventures! And forgive the length and incoherence of this blog entry. My brain's not working very well right now.

And for your viewing pleasure: Cats!

Family Update

For those of you following The Saga:

* I've recovered from the Awful Stomach Virus, and today I swam for fifty minutes, which felt awfully good. I also saw my psychiatrist today and mentioned that I thought starting therapy again would be prudent, but that I'd like to do something other than conventional talk therapy. Art therapy would be great. Unfortunately, she doesn't know any art therapists in Reno who work with adults. Pfui! Well, I'll keep asking around.

* Fran's movers showed up at the storage unit yesterday. The unit we'd rented wasn't big enough, so we had to rent another one. Because I had to work and didn't have time to rent a U-Haul and schlep stuff back and forth, we just made sure that all of her stuff got into storage. Next steps: 1) Remove from the apartment extra furniture Dad and Fran won't need, including an extra bed, 2) Move into the apartment the furniture they'll actually be using, and 3) Unpack everything. This process will begin on Saturday, when I'll rent a U-Haul which Katharine has offered to drive for me. (Thank you! I hate driving U-Hauls!) Would any local readers like to help us lug furniture?

* Dad's champing at the bit to get out of the nursing home, but hasn't seen his doctor since Friday. Once the doctor puts the discharge orders in, Dad can leave the next day, after the social worker's set up home oxygen, etc. But since the DME companies don't deliver oxygen equipment on the weekends, he'll have to come home next week if he hasn't made it home by Friday. Dad has, as he describes it, put out "an APB" for the doctor, and I spoke to the social worker, who left a note for the doctor asking him both to speak to Dad and to call me. Fran and I are just hoping that Dad will be somewhat politic with the physician, with whom he's furious, since he can't afford to antagonize the people who have the power to let him go home.

* The cats are all well, although very disappointed that the sick humans who served as such lovely soft radiators over the weekend are all better now. On the other hand, that makes the humans more reliable providers of catfood.

Hallelu, Nevada's Blue!

Wow! I actually voted for a candidate who won! This hasn't happened very often! And he's the first President of a Color Other Than Lily-White! And he speaks eloquent English! And Nevada voted blue! Amazing! We're always red!

Ironically, Gary and I came home from a victory party at our friend Katharine's house to discover that the Obama/Biden sign in our yard was gone. But, y'know, that's okay. The person who took it can have it: we don't need the sign anymore. We have the real thing.

On a completely trivial note, I'm of course wondering what kind of puppy the two girls will be bringing to the White House. (I gotta say, I loved that moment in his speech; but then, I pretty much loved the whole thing. And McCain's concession speech was extremely gracious, marred only by the booing at the beginning when he mentioned Obama's name.)

On a serious note, I wouldn't want Obama's job for the world. What a mess he's walking into! I just hope he fulfills the emergency-worker oath to "leave the scene better than you found it."

Changing of the Guard

Gary's now quite a bit better, and I'm sick. So far, I only have the second half of the symptoms -- maybe I somehow skipped the prelude? -- with a low-grade fever.

More later.