Wednesday, December 31, 2008

Dad Goes for a Ride


The weather was gorgeous here today, sunny and warm, so when I stopped by Dad and Fran's with some things from the grocery store, I asked Dad if he wanted to go for a ride in the car. First he said he wanted to; then he didn't; then, after some coaxing, he allowed as how he'd enjoy a scooter ride better. So he got dressed, and I loaded up one of the big oxygen tanks on the scooter, and away we went.

Here he is outside the apartment building; I'd asked him to smile, so of course he scowled instead, just to be contrary!

Here's a shot of his back (less clear than the first, since he was moving). You can see his funny hat, and also the teddy bear I gave him during one of his hospital visits, which Fran tucked into the back pocket of the scooter.

Dad maneuvered very well and showed no signs of falling off curbs, a tendency which had alarmed me back in Philadelphia. We didn't go far -- just a few blocks in either direction -- but I think it was nice for him simply to get outside, for a change! Fran said he ate a lot today, and I think that may be because he went out yesterday for his paratransit interview (which both of them passed), so I'm hoping that today's short expedition means he'll eat a lot tomorrow, too.

Here's a funny shot of him in his hat and sunglasses: Super-Daddy! (I didn't make the hat, if anyone's wondering!) Friday we're having lunch at the Senior Center with Katharine and her father. I have a lot of work to do tomorrow -- as I did today, although it didn't get done! -- but I'd like to think of some small outing for then, too. It would be great if I could get him out of the house once a day, to something other than a doctor's appointment.

Maybe we'll have them over to the house? That will be easier when he has more small oxygen tanks, though -- he's down to one (more should have been delivered yesterday, but weren't!) -- because a big tank and four people can't all fit in the car easily.

Oh, and my mother went home from the rehab place today, and sounds very happy about it. Yay!

One Alert, One Sleepy

Yeah, okay, I'll stop with the cat photos soon, I promise. But they're fun! (Maybe, admittedly, more so for me than for the rest of you.)

How much is that kitty in the window?

As you can tell, I enjoy these reflection shots.

Bali's Winter Ruff

Bali grows a thick gray ruff in the winter, and in this shot it shows up clearly.

Goldeneyes

Monday, December 29, 2008

Tiny Steps


In no particular order:

* I'm getting a centimeter or so of schoolwork done each day (the dreaded annual-evaluation portfolio, necessary but always exhausting).

* Today I finally got over my anxiety about the process of turning on a new oxygen cannister, and also found a backpack that will hold several of the small ones on the back of Dad's wheelchair.

* During the several hours I spent with Dad at the VA hospital this morning, I managed to find someone to notarize his anatomical-donation form, and also spoke to the patient-rep about the Palo Alto Van Fiasco. The patient-rep kept shaking his head and saying, "That's a really strange story." He's going to type up the incident and send it to his Palo Alto counterpart, who will, we hope, be in touch with the ambulance company. The rep didn't seem to understand much of what I was saying -- for instance, he told me that he's not a clinician and didn't know the significance of an oxygen saturation of 78% (I said, "um, that's way too low") -- but he took lots of notes, and I hope they'll be transmitted accurately.

* During the several hours at the VA, I did not succeed in straightening out various billing issues. Fee Basis sent me to Billing who sent me to EEC who sent me back to Fee Basis, at which point I had to leave to drive Gary to a concert, and called it a day. To be continued.

* My frustration with the billing issues was alleviated by getting to pat a very sweet service dog who helps his person with panic attacks, and also by a lively chat with a veteran -- a tall, scary-looking biker-dude type guy -- who was crocheting a colorful scarf; I pulled my knitting out of my bag, and we compared notes and talked about how much we love doing needlework.

* Since Gary and I were going to the concert, which started the same time Dad's last VA appointment did, today was partly a test of whether Dad and his gear could get safely and efficiently home from the VA in a taxi. The experiment was derailed, though, when Dad's doctor very kindly arranged a ride home for him in a VA van (even though I think he's technically not eligible for that service).

* The concert was gorgeous.

* After the concert, I went back to Dad's to straighten out some confusion about oxygen tanks, and to order more of the small ones from the home-health company; while I was at the apartment, Dad managed to get his electric scooter running, and was very proud of himself for turning it around -- with only minimal damage to furniture -- so he'll be able to drive it out the apartment door easily tomorrow, when he has an interview for the paratransit program. Fran and I are both pretty nervous about the scooter, given Dad's abysmal eyesight, but I was happy that he was happy to have turned it around. The paratransit people can transport the scooter, and Fran can't push the wheelchair, so there are times when the scooter will be helpful. (Dad tried to get an electric wheelchair from the VA in Philly, where they told him he couldn't have it because "you can walk." That was a while ago, and he can't walk these days unless he clings to furniture and creeps along crabwise, so I'm hoping he'll have better luck getting the equipment in Reno. The scooter's large and ungainly, and an electric wheelchair would make more sense.)

* Fran, after kvetching about how she wants to go back to Chicago because she hasn't been able to get out of the apartment in Reno, told us that she's not going for her own paratransit interview tomorrow. Dad and I tried to explain that the program would give her much more flexibility, but I don't think we convinced her. She's scared, overwhelmed and defeated. For instance, she said she didn't understand anything about how the oxygen tanks work -- although she understands the concentrator fine, and got Dad back on it after he got back from the VA -- and twice I said, "Please tell me what you don't understand, and I'll try to explain it," but both times she said, "Oh, I don't know," and changed the subject. Maybe she doesn't know where to start? I think she's depressed, and Dad agrees (and who could blame her?), but he also tells me that there's no way we'll be able to convince her to go to a doctor or therapist. Aaaargh.

* One of the frustrations at the VA today was learning that Dad has to be on Medicaid to be eligible for paid home healthcare (housecleaning and bathing help). If he wants it now, he has to pay out of pocket -- $20/hour, two-hour minimum per visit -- until his assets have declined to Medicaid-eligible levels. Gary's willing to help with cleaning, and Dad says he can bathe himself, but one of the reasons Fran's freaked out is that he fell in the bathroom this morning, although he got up again and doesn't seem to have injured himself.

* Fran's focused on what she can't do (drive). Dad's focused on what he can do (turn a scooter around in a miniscule apartment festooned with miles of oxygen tubing). I'm focused on what I have to do and haven't done yet (entirely too much work). Dad wins.

Saturday, December 27, 2008

Belated Christmas


Gary and I just exchanged our Christmas gifts, and I'm typing this on my Blackberry on a Universal Freedom Keyboard. Wheee! It's a great little device, and while I don't know all the ins and outs of it yet, I'm already delighted. It was a breeze to set up, and it's so much easier than typing everything with my thumbs!

Gary also got me a digital voice recorder (since I had nothing with which to record our meeting with Dad's doctor a few weeks ago), Shreve Stockton's The Daily Coyote (the book based on the blog of the same name), a lovely tapestry waistpack I'd requested, and a silk scoop-neck t-shirt from Land's End.

Oh, and the greatest thing! He found a PBS video called Healing Words about poetry therapy in a hospital: absolutely perfect for my narrative-medicine interests!

Yay, Gary! You outdid yourself!

The funny thing is that this morning I felt horrible, never less Christmas-y in my life. Swimming helped, though. So did getting to Dad's and discovering that I could deal, that I was still a competent adult. We are, to be sure, having Adventures in Gerontology: Dad's displaying some confusion, although we aren't sure if it's really cognitive or simply caused by deficits in sight and hearing. Fran's announced that taking care of him is too hard, and that she's going to give it another month and head back to Chicago if things don't get easier. Thing is, you can't have leases on two different Section Eight apartments at once, and she signed a one-year lease, so she can't go back to Chicago until it's up. Dad's tried to explain that to her, but she doesn't believe him.

Meanwhile, back in Philly, my mother's desperate to go home and seems to think that Liz is plotting to keep her in the nursing home, which must have been hard on Liz on her birthday. We just want Mom to stay another week or so for rehab (which is, of course, being broken up by the holidays, making the situation even more confusing for an elderly person).

So life remains challenging. But we're all doing the best we can: Gary chipped away at unpacking Dad and Fran's apartment today, and made enough progress that it looks more like a house than like a storage unit. I chipped away at bills, insurance issues, and end-of-life paperwork: among other things, Dad's advance directive is now attached to his refrigerator door by magnets, so that any ambulance folk who show up will see it and, we hope, read enough of it to discover that Dad's DNAR/DNI. That sounds morbid, but I've seen entirely too many elderly people who never wanted to be on ventilators brought into the ER on vents because the paramedics didn't have the paperwork readily available and were legally required to resuscitate and/or intubate.

With any luck, the situation will never arise. I'm not sure if we've been very lucky so far or very unlucky -- maybe both at once -- but I'm not inclined to push the issue.

Dad and Fran are both happy with unpacking progress, which should help ease tension. On Monday I'll take him to a bunch of VA appointments. On Tuesday he and Fran have their interview to be admitted to the paratransit system, which I certainly hope will happen, since it would make life much easier on all of us (or maybe only a little easier, but we'll take what we can get!). Fran reports that Dad's eating more than he had been, which has to be good news, although he's very tired and reports a sudden cessation of pain without pain meds, which alarms me because I know that happens sometimes right before people die.

One day at a time, right?

So, anyway, by the time we got back, I was feeling sufficiently festive to wrap Gary's presents. We put the Yule log DVD on the widescreen, and it worked really well, creating a great atmosphere for opening gifts. I feel as if maybe we've stumbled on a new Christmas tradition, and I already have ideas for how I want to handle next Christmas.

Bwah hah hah! And to all a good night!

Back Home


We got home late yesterday afternoon, after a surprisingly smooth trip with lots of lovely leg room (we were in the exit row on both flights). Christmas with Gary's family was pleasant, but -- naturally -- also very sad. I'm happy to be back in my own house, with my own cats and own bed.

I'm behind on everything, though: work commitments, exercise, e-mail, doctor and vet appointments, yada yada. Gary and I haven't exchanged Christmas gifts yet; I haven't even wrapped his. I woke up at 3:30 this morning, woefully jet-lagged, but so far haven't managed to do anything except drink coffee and call my sister to wish her a happy birthday.

And Dad's clamoring for me to go over there today and manage his life. Before Gary and I left town, Fran shoved a stack of Dad's mail at me and said, "Here. You take this." I shoved it back at her and said, "You guys need to deal with your own mail. You can see well enough to read it to him, right?"

When I spoke to him last night, he confirmed that she can read him the mail, but said that she can't figure out how different pieces of mail relate to each other, which is important when you're dealing with medical/insurance matters. I guess Dad can't quite connect those dots either. I hate my own paperwork, and am less than thrilled about having to deal with his. Gahhhhhh.

Meanwhile, Gary will need to help them finish unpacking, and there's still a possible Palo Alto trip looming, which limits the amount of time I have to get my heaps of school stuff done. And yes, I know I'm whining. Things could certainly be much worse. But I still hope we have a better holiday season next year!

Tuesday, December 23, 2008

Visiting Mom

Here I am with Mom. It was great to see her.

Liz in Knitgifts

My sister and mother both had some sort of stomach bug today, especially unfortunate since Gary and I were visiting. But we had a pleasant time anyway. Here's Liz, wearing both the shawl I made her last year -- which she likes to curl up in when she's sick -- and this year's Christmas scarf, which I gave her today.

Backyard Deer

A parade of three deer ran through my in-laws' yard on Sunday. I got this shot of two of them.

The funeral on Monday was sad and lovely, and well-attended.

Sunday, December 21, 2008

Safe in NJ


Hi, everybody. First of all, thank you all so much for the comments, e-mails, prayers and support. Gary and I both really appreciate it!

We had a remarkably smooth trip to Newark. We and our luggage both made our very tight connection, and we were in first class on the first leg and in bulkhead seats on the second, so we had something approximating leg room.

We spent several hours today at the house, mostly visiting with Gary's mom, who's hurting tremendously -- as you'd expect after a marriage of fifty-nine years -- but also thinking practically and sensibly about the future. She already has ideas for how she'll get around now that Adrian can no longer drive her, for instance. (She hasn't been able to drive for several years.) Even in these early days, she's looking forward as well as back, and I think that bodes well.

The viewing and funeral are tomorrow. My sister will attend the funeral and then drive me and Gary to Philly, where we'll borrow my sister's car to visit my mother on Tuesday while my sister's at work. Tuesday night we'll train back to Newark, probably after having dinner with my sister and her husband.

I asked Gary's mom if it would be okay if I left for a day or two to visit my mom, and she said, "Of course." I was very moved when Gary asked her if it would be okay if he came, too.

The only unpleasant moment today was when the family dog, a Scottie, bit me. But the bite barely broke skin and I cleaned it well, so I'm not worried. Gary's brother and his wife (who live with Gary's mom and own the dog) were mortified, but it really wasn't a big deal, and it made sense from the dog's point of view. She's upset by household crisis, she doesn't know me well -- although she'd been wagging her tail a moment earlier as I rubbed her belly -- and I was near her precious stash of "babies," toys she piles up and guards.

My father and Fran, meanwhile, seem to be holding their own back in Reno. I'm calling Dad twice a day to check in. Yesterday he sounded great; today he sounded, and said he was, very tired. On the one hand, that's understandable given what he's been through, but it's also what happens when his oxygen cannula slips out without his noticing it. So I'm constantly nagging him: "Are your nose prongs in? Is anything blocking the flow in the hose? Are you getting air?" I'm relieved that a home health nurse will be visiting tomorrow.

Tomorrow, if I have time, I also have to call the Reno VA to speak to the patient representative about how Dad was sent back to Reno. I didn't get a chance to post about that -- that particular crisis was preempted by the one with Gary's father -- but the short version is that rather than flying Dad back, or sending him back via ambulance with a nurse or tech, the VA put him in a van containing just him, a non-medically-trained driver, and one (count 'em, one) oxygen cylinder. Said van proceeded to head through a snowstorm in the Sierra.

The trip takes five hours in good weather; Dad finally made it back in eight, after the van stopped to chain up, and then stopped again when a chain broke, eventually continuing with the broken chain making a racket right under Dad's seat (he made earplugs out of tissues).

An oxygen cannister lasts about four hours.

Dad's O2 sat when he arrived in Reno was 78. It's amazing he was conscious, let alone cheerful and coherent.

Twenty minutes out of Palo Alto, the driver had looked around, said, "How long does one of those last?" and radioed someone to deliver another cannister. Dad called me while they were waiting by the side of the road for the delivery. But either the delivery never showed or they decided they didn't need it.

Furthermore, there was no food or water in the van -- they stopped at one point and Dad bought some frozen yogurt -- and the driver didn't have enough cash for the $30 chain-up fee: Dad had to give him money. Dad also arrived in Reno without meds or discharge instructions, which had somehow never gotten to him in Palo Alto. And frankly, it seems to me that the driver shouldn't even have continued if there was snow over the pass: he should have turned around and taken Dad back to Palo Alto.

The ER admitting clerk at the Reno VA, when she heard this story, handed me the patient-rep phone number and said, "You'll want to be talking to him." The ER nurse agreed, and added, "If it were my father, I'd be furious." Because the two hospitals also hadn't coordinated well enough to get home oxygen set up in Dad's apartment -- even though I was supposed to pick him up and take him home that evening -- he wound up spending the night in the Reno VA.

So Dad arrived in the van at 10 PM and was sent up to a bed at 12. Gary and I got to bed around 1 AM, and were awakened at 6 by his mother calling with the bad news. It's been a surreal couple of days. Right now, just being in a comfortable hotel and being able to watch TV feels like being on vacation, although we certainly won't feel that way tomorrow.

Friday, December 19, 2008

Gary's Dad


Gary's father died this morning, very unexpectedly. We're flying back to NJ tomorrow, returning the day after Christmas. With any luck, I'll get my own father settled back in his apartment today (he arrived at 10:00 last night, after eight hours in the van).

This is a terrible time for us, and especially for Gary's mom. Please keep us all in your prayers.

Wednesday, December 17, 2008

Movement and Machinations


Mom was transferred to the rehab place today, although I haven't spoken to her since she got there.

Dad's supposed to be put on an ambulance at noon tomorrow to head back home, but there's quite a bit of snow forecast for the mountains tomorrow, so we'll see if he makes it. Whenever he travels, he'll be brought back to the Reno VA, where I'm expected to pick him up and bring him home. Home healthcare and oxygen are being lined up from Palo Alto.

I told Dad that we'd probably bring Christmas dinner to the apartment, since we don't have a wheelchair ramp in our garage yet. He said he wants to come to our house, and he thinks he can handle the two steps up from the garage, but since that's where he fell last time, I'm alarmed. So tomorrow I have to see if we can get a wheelchair ramp installed pronto.

Meanwhile, I'm fussing about preparations. Gary loathes almost everything involving the holidays, so the last time we did anything approaching decoration was when my mother was here for Christmas a number of years ago. We still have lights for our front window somewhere. I want to see if Netflix has a DVD of the Yule log burning, with Christmas carols in the background; I thought it would be fun to put that on our flatscreen, pretend it's a fireplace, and put stockings for Dad and Fran in front. (I love Christmas stockings -- they were my favorite part of the holiday when I was a kid -- and it will be great to do some for other people.) And I want to try to do something festive with the table, although I entirely lack the Martha Stewart gene.

It would be great to have some other people over, but since all of this is happening at the last minute, that's not likely. To reduce stress on Gary, I've told him not to fix anything fancy, especially since Dad eats like the proverbial bird these days. Dad's gift to us is a smoked turkey breast and smoked salmon, which should have arrived by then, so we'll set up a buffet with cold meats and cheeses and a shrimp ring and, uh, maybe some mashed potatoes with gravy, which Dad adores, and I may try to buy some premade stuffing since he loves that too, and cookies for dessert. And salad, I guess. We need some veggies in there, right?

Don't ask me how I'm going to keep the cats away from smoked meats and shrimp ring. Oh, dear.

Can you tell I totally suck at entertaining? Like I said, Martha Stewart R Not Us. Help!

Study in Stripes

Rush Shipment

Harley Sees His Ghost

Tuesday, December 16, 2008

Catching Our Breath and Our Balance


Well, today was one of those crisis-evaporation days. Mom's doctor told her that she won't have any surgical procedures, that her heart's working better than they thought, so they're just keeping her on meds. She moved to a room without a heart monitor, and (from a conversation she had with me) seems resigned to going to a nursing home for rehab. She's happy about no surgery, though!

Dad met with one doctor, rather than the two we'd been told would see him. This doc said that Dad will have another test -- I don't know what -- tomorrow, and will then be shipped back to Reno for the week or two it will take a national committee to decide whether to let him into the study. Oy! If he wants up being a) selected for the study and b) randomized to the experimental group, rather than the control group, they'll fly him back to Palo Alto to have the procedure in January.

So he'll be back here for Christmas, and Gary and I won't be going to Palo Alto anytime soon.

I should be relieved about all of this, and of course I am, especially the part about Mom not needing surgery. I also feel weirdly disoriented, though. I've been in crisis mode for so long that having it yanked away suddenly has thrown me off balance. Mom's happy; Dad's annoyed and frustrated by delays but in good humor; I feel like I'm in a fog.

The prospect of a January procedure also alarms me, because I can't afford to be in Palo Alto at the beginning of the semester. So I'm hoping that if Dad's chosen for the procedure, it will happen at the beginning of January (classes start after MLK Day), so I can be there, but that means that I need to start digging into the huge pile of work I'd normally have ignored until after Christmas: annual-review materials, course planning for next semester, reference letters for students applying to grad school, written work by grad students whose committees I'm on, and so forth. This is especially true because there's no way of knowing when the next crisis will hit, and how much time and emotional energy it will eat.

Oh, and I have to write my Christmas homily!

But my brain doesn't want to do any of that stuff right now. My brain wants to melt into a puddle and sleep for three days.

This effect is exacerbated by the fact that I couldn't swim today, since the health club had no heat or hot water. We visited our friend Katharine, who had hip-replacement surgery yesterday and seems to be doing splendidly -- as Gary said, "It's so nice to visit someone in the hospital who isn't in horrible shape!" -- and then went to the grocery store to look for soy cream cheese for me to eat with the lox my sister and BIL sent for Christmas. (They also sent Belgian chocolate. Yum!) Our local Safeway had no soy cream cheese, although I can usually find it there. I'll have to make a Trader Joe's run soon.

I got a shred of work done this evening; I hope the pace picks up tomorrow. I also spent some time fretting about Christmas. Will Dad be in a hospital, a nursing home, or his apartment? We'll have to bring Christmas to him -- in all the craziness, we haven't gotten a wheelchair ramp for the house yet -- but we'll have to make sure we bring easy-to-eat food. I have one gift for Fran, and Dad's suggested others, but what small, useful thing can I give him to open on Christmas?

On the phone tonight, he said, "I don't want you to give me anything for Christmas. You've done enough."

"I've already given you those new slippers," I said. (This was a mini-saga back when he was waiting to go to San Francisco; the hospital lost one of his beloved fleece slippers, so we ordered another pair as an early Christmas gift, and hoped they'd arrive before he left for the city, and they did, but they were the wrong size, so we had to reorder them.) "And anyway, if I want to give you something, I'm going to give you something."

"Brat!" He sounded genuinely annoyed.

"It won't be anything big, Dad, but I want you to have something to open on Christmas."

"I can tell I shouldn't have even brought up the subject!"

I do want to give him some little thing, but I can't think what. I'll figure it out, though.

Just as soon as my brain starts working again.

Monday, December 15, 2008

The Latest


Dad had his pressure-gradient test today, and either passed or failed, depending on how you look at it: at any rate, he's still a candidate for the study, and will meet with two doctors tomorrow who will, I gather, decide if he's in or not. He's very cogent and seems to be in decent spirits.

My mother's less cogent, and according to my sister isn't a reliable narrator right now; this morning, Mom told me that a doctor told her she'd be dead within a year, but my sister has learned that no one said that. Evidently Mom told my brother-in-law that every morning she wakes up on a ranch, and asks the people there if Liz will be able to find her, and they say yes. I'm intrigued by this, because to the best of my knowledge, Mom's never spent any time on ranches; she grew up in cities and suburbs. Did she maybe take riding lessons when she was a kid, though? I'm straining to remember this, and will have to ask my sister.

On the medical side of things, her echocardiogram shows "moderate" aortic stenosis. There's talk of an angiogram to see whether she's a candidate for open-heart valve replacement. The last time I talked to Mom, she was learning towards the angiogram but leaning against the surgery, which would be my impulse too (although I'm not sure why she'd even want the angiogram if she doesn't want the surgery, especially since I gather that stents aren't an option -- but maybe angioplasty is?).

I'm confused. My sister's confused. My mother's confused.

The weather's not confused. The weather's still very snowy: it's been chains-over-the-pass all day, and at one point, I-80 Eastbound was closed because of an accident. I didn't leave the house today, because we have quite a bit of snow even down here in Reno, and I hate driving in the stuff. We thought there might be a break in the storms on Wednesday, but now Gary tells me that snow's predicted then, too, with another big storm rolling in on Thursday.

Well, I'll fly if I have to. The first step is to find out what happens at Dad's meeting tomorrow. If he gets bounced from the study, he'll be coming home, and we'll be staying here.

Harley Mama


My second Hope and Healing column, Harley Mama, is up on their website.

Enjoy! (Harley says, "Of course they'll enjoy it. There's a picture of me!")

Sunday, December 14, 2008

Today's Update


Thanks to everyone for the comments and e-mails about yesterday's post (and Mary Ann, thanks for that moving story about your own experience!). Today I asked Mom if she could tell me the story, and she said she could, but then she really couldn't find the words for it. I suspect, although of course I don't know, that this is a matter of dream logic and deep symbolism, which rarely translate well to the everyday world. Some of our internal stories are felt, not narrated.

I also asked Mom if she thought she was dying, and she said, "I don't know. I thought so before, but now I'm not sure." She didn't sound upset about the prospect, though, and again, that's the main thing.

We've talked before about her eventual death: she's always told me that although she doesn't want to die, she doesn't fear it, either. She's had a good life and her kids are doing well, so she feels like she can leave when she needs to.

My sister talked to Mom's doctor today. The lung fluid didn't show any sign of infection, which is good; we won't know if there's a cancer recurrence for another few days. In the meantime, Mom had some physical therapy today. The hospital's trying to decide if she should go home or to a nursing home (temporarily, for rehab). My sister knows Mom won't want to go to a nursing home -- she flat-out refused last time -- but doesn't feel able to care for Mom adequately at home, and Mom doesn't want to spend the money for a full-time caretaker.

Stay tuned.

Dad, meanwhile, is in fine spirits. Yesterday he kept calling to get advice from Gary about how to work the radio Gary lent him; with the help of a nurse, Dad finally managed to get an NPR station, so he was happy. (Yesterday he called us to ask what had happened with the auto bailout, since he hadn't been able to get news for two days.) He had PT today too, and walked a bit.

Long-time readers will recall that before Dad and Fran moved here, I got a cellphone for each of them and put the three of us on a family plan, so we can always talk to each other without charge. This is, in principle, a great idea, and obviously ideal for the current situation. The problem is that neither Dad nor Fran can hear their phones ringing, even with really loud ringtones (my sister found one for Dad that would raise the dead). Fran can hear the landline in their apartment, but not her cell.

Dad has to use his cell for long-distance calls from the hospital, and he likes Fran to use her cell phone to call his cell phone, but since she can't hear her cell and he doesn't want to call the landline -- he's been scrupulous about not using our shared minutes -- he's taken to calling me on my cell and saying, "Please call Fran and ask her to call me." Yesterday I pointed out that this arrangement was unnecessarily complicated, and suggested that he call the landline, just for a minute, and ask Fran to call him back using the cell. We'll see how that works out!

Gary and I are still in Reno; the mountains are snowy, and expected to remain so through Tuesday. Tomorrow, Dad will have the test that determines if he's even a candidate for the clinical trial. If he isn't, I guess he'll be on his way back home before we can even get over there. But for obvious reasons, I hope he gets to stay in Palo Alto longer.

I slept too late to go to church this morning, although I'd been looking forward to it. Luckily, we had a late-afternoon Advent Lessons & Carols service today, so I went to that. I got lots of hugs from friends, which was lovely. I've never liked Advent much, but this year, it fits my mood perfectly: all that stuff about waiting in darkness, and staying awake because you never know when the big things will happen. Advent has always felt like a weird, tense limbo season to me, but this year I'm in weird, tense limbo, so it works.

I'm supposed to preach on Christmas Eve and Christmas morning. I have no idea if I'll be here or in California then, although I should know in a few days. One of our priests told me that he'll step in for me if I need him to.

Oh, and I swam today, even though I had to use cruddy goggles because my wonderful (and expensive) vision-correcting Barracuda goggles have gone missing. I suspect I left them at the health club and someone there took them or tossed them; they weren't in the lost and found. I've also lost my gym comb and my favorite pen. Although I routinely misplace things, I'm doing so far more often than usual, and it's unsettling. In the grand scheme of things, though, all of this is minor. I'll happily forgo goggles and combs and pens if I can keep my parents a bit longer. (Is this bargaining, Dr. Kubler-Ross?)

Today's other activities included knitting and cuddling cats. Yay, cats!

Saturday, December 13, 2008

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!

Friday, December 12, 2008

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!

Thursday, December 11, 2008

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.

Wednesday, December 10, 2008

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.

Monday, December 08, 2008

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.

Sunday, December 07, 2008

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.

Saturday, December 06, 2008

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.

Thursday, December 04, 2008

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.

Wednesday, December 03, 2008

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!

Tuesday, December 02, 2008

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.

video

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.

Friday, November 28, 2008

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!

Monday, November 24, 2008

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!

Sunday, November 23, 2008

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.

Saturday, November 22, 2008

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!

Friday, November 21, 2008

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!