A mostly true account of life with a guy, a recently-ex-teenager currently living and working in Korea, a couple of narrow dogs, retirement from a job as a tech writer, a recently-acquired obsession with stalking dead people, and MS.
Facebook seems to think I recently turned 103. I never expected to make it to 103. Honestly, I don't feel a day over 97.
I've been getting birthday wishes, out of the blue, for about the past month. I don't remember this happening in years past. It makes me wonder if they were afraid I wouldn't make it.
I got a real, hard-copy birthday card from Tin Man. I get one from their family every year. It always arrives exactly on my birthday, which I find incredibly irritating because I've never sent one to any of them. I'm sure they don't do it to make me feel inadequate; at least, I don't think they do. Scarecrow thinks I'm projecting my motivations onto people who are really a lot nicer than I am. He's probably right.
Scarecrow came back from the store last weekend with two turkeys; a small (ish) one to roast on the grill, and a large (ish) frozen one that was free with a ridiculously huge grocery purchase. Good thing we like turkey, because between that and all the other stuff, we sat down to a truly embarrassing amount of food. Last year we had Arkman, our six-foot-plus nephew, to help us out. I can tell you a turkey looks a whole lot bigger without him on the other side of the table! I told Robin not to make a big deal out of it. Really, a roast chicken – a roast game hen! – would be plenty, but he says he finds it entertaining. And he doesn't have to cook again for a month, so there's that.
The warehouse that accommodates Bob's Books also houses a craft brewery, and brewing beer is aromatic business. Some mornings we're greeted by the fresh scent of hops, herbal and citrusy. Some mornings it's yeast. Some mornings it's rich, sweet, toasted malt. The lovely fat essence of organic esters. The ingredients of a wholesome, nutritious beer that will really stick to your ribs.
I'm told that not everyone appreciates the whiffy aspects of brewing beer. My mom says my granddad used to brew beer, and my grandma wasn't crazy about the smell. Or the occasional bottle that would explode in the basement. I've always enjoyed the olfactory experience, myself. Good thing, because Scarecrow has been a homebrewer for 20 years, and the process is every bit as aromatic when carried out on a smaller scale. While I could do without the sticky malt residue that covers every surface in the kitchen after a brewing session – Scarecrow is a congenitally messy guy – I've always enjoyed the smell. Well, that, and the beer. The beer is almost always good. (If you've never tried it yourself, it's not hard to make good beer. Scarecrow's first batch was one of his best ever. What's hard is making beer that is consistent from batch to batch. But it's almost always good.)
Another advantage to having a brewery next door is that Scarecrow could get yeast from them. He'll miss that.
Update from previous post: Sparky is planning to spring my pop from the joint this afternoon. Apparently he's looking and feeling better, although he's very weak, easily tired and a little confused. They never found out where he was leaking this time, but seem to think they got it plugged up for now.
My brother (I'll call him Sparky – he's an electrician) called the other day to say that dad was weak and a little confused. Like, too weak to get out of bed. They got him in to the doctor, and found that his hemoglobin was way low. Again. He's sprung another leak.
They packed him off to the hospital, where they filled him up with blood. After that, Sparky said he was looking and sounding better. Now they need to find out where he's leaking.
Dad has a history of bleeding from holes in his gut. It has almost been the end of him on several previous occasions. If that's what it is, this time they probably caught it early. Who knows? He's 90 years old, for Pete's sake. He's got a lot of miles on the chassis. They're keeping him in the hospital for tests.
My mom, who is 88 herself and has more than her own share of medical problems, seems to be getting by on a combination of willful ignorance and denial. Sparky said she had a total emotional meltdown when he talked to her on the phone this morning, but by the time I called she had all the input filters firmly back in place. Whatever works, I say.
This photo was taken around 1930 in my grandfather's grocery store in Toledo, Ohio. Standing by the counter to the left of the picture, in the long apron, is my uncle Willie. Behind him, looking proprietary, is my grandfather. To his right is one of the neighborhood kids, and then two men who sold produce to the store. The guy in the back corner is my uncle Leon. The young man at right, wearing knickers, is my dad, the baby of the family. He turned 90 yesterday.
A WWII veteran, he went to the University of Toledo on the G.I. Bill and moved to Southern California for grad school at Cal Tech. A few years later, he and my mom bought a house near the ocean. In those days, mere middle-class mortals could afford such things. My brother and I grew up in that house. My mom and dad still live there.
He got up early yesterday and went for a walk, as he does most mornings. He went to the beach and back, a walk of maybe a mile, including a significantly steep hill. He says he has to stop and rest several times on the way up, but still. Mom says when he goes all the way down to the beach he sits in a chair for the rest of the day, but still.
He has his share of health problems. In May 2008 he was in intensive care with three holes in his gut. Nobody expected him to live through the night. He worked his way back, a little at a time. He still can't do everything he used to do, but he can do a lot more than anybody ever expected. The man is a force of nature.
Whenever I ask him how things are going, he always says, "Just another day in paradise!" He says every morning when he wakes up he thinks, "Another day! And I'm here to see it!" When I was living at home I sure don't remember my dad being such a relentlessly cheerful guy. For whatever reason, he seems to have come to really appreciate what he's got, and not waste much time thinking about what he's lost. Maybe I could learn a thing or two from the old guy yet.
Why don't you ever hear anybody lamenting the fact that middle age is wasted on the middle-aged?
I just finished reading Best Love, Rosie by Nuala O'Faolain, a wonderful Irish writer with the coolest name I've ever heard. It's about a woman trying to figure out middle age. Being about there myself, it got me thinking.
I remember being startled the first time I heard a woman my age refer to herself as middle-aged. Wait... she's the same age I am. If she's middle-aged, that would mean... Really? Middle-aged? Me? How can this be?
I still feel young, which is clearly at odds with reality, and getting odder all the time. People must think of me as old. I've got gray hair, and creaky joints. I'm quadri-frackin'-plegic, for criminy sake. But I still think of myself as young. When does the inside catch up with the outside? Does it ever?
I don't think I'm particularly phobic about the prospect of getting old. I don't agonize over every line and wrinkle. In fact, I can't remember when I last looked in a mirror. I don't dye my hair. I wish I could do a lot of things that I can no longer do, but that's more an MS thing than a getting old thing.
I remember my grandmother saying, in her Yiddish accent, 'I'm getting younger and younger, every day.' I never really knew what she meant by that.
It's hardly surprising. He's almost 90, after all. He's got a lot of stories to tell, and although I've heard most of them before, occasionally he comes up with a new one.
I, on the other hand, am not almost 90, even though some days I look it, and most days I feel it. Still, I'm becoming painfully familiar with the fixed smile and glazed look that Scarecrow and Tuffy get when I start to tell a story they've already heard, but they're too polite to say so. Nothing makes me feel old and absent-minded like getting caught repeating myself. Did I say that already?
Lately I find I forget what I've written about in previous blog posts. The titles don't even sound familiar. I tell myself it's OK. If I repeat myself, I'm just being considerate. After all, one can't assume that anyone who might be reading a blog has read every previous post. If being considerate happens to coincide with being absent-minded, this is one circumstance where I guess it's OK. There are way too many, after all, where it's not.
So if you've heard this before, don't stop me. I want to hear it again.
Over the last couple of days, Ernie's meds have been less and less effective at controlling his pain. This morning we decided he'd had enough, and took him to the vet for the last time. We are hurting now, but he's not.
That's what my 89-year-old dad always says, when he passes a neighbor on his morning walk. Since he does not actually live in paradise, I guess what he means is it's a nice day and he's enjoying life.
It's pretty amazing, really. One morning, about two years ago, my mom found him on the floor. Exploratory surgery turned up three holes in his gut, and a section of necrotic bowel. They did an initial patch up, but nobody expected him to live. When he survived the first surgery they went back in for a more complete fix, and, to general amazement, he lived through that, too. He was on a respirator, on dialysis, in and out of intensive care (mostly in) for about a month. Nobody expected him to live.
Dad had been very clear about his end-of-life wishes. He did not want extraordinary measures taken to keep him alive. He did not want to live hooked up to a bunch of machines. He wouldn't want to live like that.
We had had that conversation, my parents, my brother, and I, sitting around their dining room table. It wasn't awkward or uncomfortable. He had the Advance Directive and all the necessary paperwork. He just laid it out. We all thought we understood exactly what he meant.
Turns out, when the time came, it wasn't that easy. For each treatment option there was a range of possible outcomes, and we had to try to guess which he would find acceptable, if he were able to decide, and which he would not. What if he lives, but he's confined to bed? What if he lives, but is left with a significant cognitive impairment? What if...?
As it happens, we got to have that conversation a second time -- kind of a 'before and after' thing. Dad's happy we made the decisions we did. He doesn't have much memory of the weeks he spent hooked up to machines in the ICU. He says he realizes he could've wound up severely impaired in one way or another, and says he wouldn't have held it against us had the decisions we made resulted in a less favorable outcome. I don't know if that's true, but that's what he says. He says if the situation arises again, which could happen, he's confident that we understand what he would want us to do.
If the situation arises again, I wish I thought it would be easier than it was the first time.
For myself, I don't want to wind up hooked up to a bunch of machines either. Beyond that, I don't know that I'd be able to draw a line in the sand. As a kid I remember reading about a woman who was paralyzed in a skiing accident, and thinking I'd never want to live in a wheelchair. More recently I remember thinking I can deal with not being able to walk, as long as I can use my hands. The point at which I'd say 'I wouldn't want to live like that' has shifted significantly over the past couple of years. What if I couldn't see? What if I couldn't speak? Would I say 'If I ever get to the point where , I wouldn't want to live like that'?
No lines in the sand for me, thanks. This may not be paradise, but it's another day in Seattle. And that's OK.
Lately I keep catching myself dozing off during the day. No, wait, I don't catch myself dozing off; I catch myself waking up after I obviously dozed off, head nodding, jaw sagging, oh, sorry, was I snoring? It's bad enough when I'm by myself, just sitting with my laptop in the afternoon. It's mortifying when I'm with Scarecrow and Tuffy in the evening, reading a book or watching a movie. The other evening we were watching a Dr. Who DVD, the final episode of the season, and I woke up at the very end with no idea what happened. Audio books are a disaster. At least with a regular book, if you fall asleep, you can pick up at the page where you left off. If you fall asleep when you're listening to an audio book, it just keeps right on going and figuring out where you were when you fell asleep is a real pain.
It's such a stereotypically old lady thing to do. I remember being impatient with my grandmother, or my dad, or my mom, when they'd fall asleep watching TV. Scarecrow's dad would fall asleep in the middle of a conversation, practically.
Digression: Scarecrow's dad used to teach at a junior college. When he had an evening class, it was his habit to curl up underneath his desk for a nap in the afternoon. Seriously. Scarecrow's dad could take a nap anywhere. Anyway, on one occasion, an instructor with whom he shared the office was meeting with a prospective student and his parents. As they discussed the merits of the program, they heard an assortment of waking-up noises and Scarecrow's dad emerged from underneath the desk. I love that story. End of digression.
I was such a little snot. There is painful poetic justice in finding myself doing the same thing that once provoked my scorn and ridicule.
It could be an MS thing. Lately I've been really stiff. Any movement entails serious isometrics. It's hard work, and it makes me tired. Maybe it's that. Or maybe it's just getting old. Either way, I don't like it. So, should I try to do something about it? If so, what?
Really, other than the old lady stereotype, what's the harm in falling asleep during the day? It's not like there's anything I particularly need to get done. Why do I need to stay awake, anyway? Mostly, during the day, I'm just trying to find ways to entertain myself. If I'm tired, maybe I should just sleep. That much less time to try and fill. Choosing this option seems kind of nutty, but I'm not sure I know why.
OK, if I don't want to doze off in my chair, what are my options?
The obvious thing to try would be to get more sleep, or better sleep, at night. My schedule here is pretty much tied to Scarecrow's since he has to dump me into bed at night, turn me over from time to time, and haul me out in the morning. I suppose we could give this some thought.
I could explore chemical options. I already take drugs for fatigue, stiffness, nerve pain, depression, and bladder control. After much fiddling, we've got the drugs and dosages balanced so that everything kind of works. Do I want to risk bringing down this house of cards to stay awake through Dr. Who?
Ernie is 12 years old today. Twelve is not remarkably old for a greyhound, but it's getting up there. He's a little creaky getting up and down, his hind legs are sometimes wobbly, he sleeps more than he used to, and being as how he's a greyhound and greyhounds are world-class sleepers anyway, that means he sleeps a lot. But he's doing OK, considering.
He's had a tough year. Last January his buddy, Iris, died suddenly of a stroke. Then he broke his tail, and had to have it amputated. Twice he's had surgery to remove benign tumors from his thigh, leaving a gnarly-looking scar and saddling him with the name Burger Butt. (OK, I'm the only one who calls him that, but still. It's undignified.) And rather than adopting another laid-back greyhound buddy to keep him company and challenge him to some serious competitive napping, we inflicted a two-year-old whippet on him; a whippet who is cowardly, disrespectful, continually tries to share his bed, and steals his toys. Right out of his mouth.
It really doesn't seem right, somehow.
You shouldn't have to put up with so much, old friend, but we appreciate that you do. Happy birthday, big guy.
Well, I guess that went about as well as could be expected.
I talked to my mom and dad on the phone this morning. In addition to the usual status updates, I meant to have a chat about their transportation problems. After years of being able to go wherever they want whenever they want, mom can't drive, and dad shouldn't. Their public transportation options are very limited. They find this frustrating. Infuriating, even. I understand that, I really do. But they can't go taking it out on my brother and his kids, who are only trying to help. The plan was to talk about all that.
I wouldn't say the conversation was a total failure. I got an opening when my dad mentioned his visit to the ophthalmologist. Apparently his vision is not appreciably worse than it was at his previous visit, which is not saying a great deal. Apparently the ophthalmologist feels dad's vision is borderline for driving, although the DMV seems to think he can see just fine. Dad told me he only drives around home, he doesn't drive at night, he doesn't drive in the rain (not reassuring -- this is Southern California, it's a desert), he only goes "over the hill" to shop at Costco (a trip of 15 miles each way over a windy canyon road). If I was waiting for the opportune moment, this was it.
"Dad," I say, "I'm with my brother and the kids on this one. I really think you need to stop driving."
He didn't get mad. This is good, we're still talking. He didn't tell me I'm an idiot, which is usually what he tells my brother. We talked about how he hates to impose on family and neighbors for rides, but acknowledged that sometimes letting people help you is a good thing for both of you. We talked about his trip to the doctor yesterday, taking dial-a-ride on the way in and the bus on the way home. It was a nice day, the trip went mostly as planned, and cost $.35. We talked about using the power scooter he bought for my mother to get to and from the bus stop, and about taking the scooter on the bus. He hadn't thought of that, and sounded intrigued by the possibility. The upshot of the conversation was that he said, in the nicest possible way, something like "I know what you think. Thanks for your concern." All in all, I am not feeling like I accomplished a great deal.
My conversation with my mother was even less helpful. When I brought up her problems getting around, she said she'd let me talk to dad about that. When I said it sounded like it was a real problem for her, she said she'd let me talk to dad about it. OK fine. I know this whole situation really makes you mad. But Ma, you've got to stop taking it out on my brother and the kids. They're just trying to help.
"How is Tuffy doing in school this quarter?"
A Chat with Your Mother. I couldn't find a clip of Peter and Lou Berryman, or Cathy Fink and Marcie Marxer, but this rendition is interesting in its own way.
A Chat With Your Mother
(Lou & Peter Berryman)
There are pirates in their fetid galleons
Daggers in their skivvies
With infected tattooed fingers
On a blunderbuss or two
Signs of scurvy in their eyes
And only mermaids on their minds
It's from them I would expect to hear
The F-word, not from you
We sit down to have a chat
It's F-word this and F-word that
I can't control how you young people
Talk to one another
But I don't wanna hear you use
That F-word with your mother
And the lumberjacks from Kodiak
Vacationing in Anchorage
Enchanted with their pine tar soup
And Caribou shampoo
With seven weeks of back pay
In their aromatic woolens
It's from them I would expect to hear
The F-word, not from you
There's the militant survivalists
With Gucci bandoleros
Taking tacky khaki walkie talkies
To the rendezvous
Trading all the latest armor
Piercing ammo information
It's from them I would expect to hear
The F-word, not from you
There are jocks who think that God himself
Is drooling in the bleachers
In a cold November downpour
With a bellyful of brew
Whose entire grasp of heaven
Has a lot to do with football
It's from them I would expect to hear
The F-word, not from you
There's unsavory musicians
With their filthy pinko lyrics
Who destroy the social fabric
And enjoy it when they do
With their groupies and addictions
And poor broken-hearted parents
It's from them I would expect to hear
The F-word, not from you
When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.
So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.
My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.
I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.
Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.
Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.
The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.
When you were five or six, could you ever, ever, have imagined it would be possible to forget your own birthday? Back then, I started looking forward to it in February! We didn't usually have a party, but you got to choose what we had for dinner, and you were another year older, and it was a big deal!
It's my dad's birthday next week. Turning 89 is a big deal, especially since it didn't look like he was going to make it to 88.
It's not that I mind birthdays. I'm not birthday-phobic, or anything, and they're a lot better than the alternative. I just forgot.
Yesterday I had an appointment with the occupational therapist. It was mostly to figure out if I could get my insurance to pick up part of the cost of a shower chair, which they may or may not do. Since we were there, it was a chance to ask about some of the other questions the Red Queen has posed to us lately. I guess it's reassuring that there aren't any magic answers, that the solutions we've cobbled together are likely to be as good as anything the therapist can suggest. That's usually been the case. Still, it's worth asking. You never know. As bizarre as these problems are, we can't be the first ones to have them.
So I wasn't thinking about birthdays. It wasn't until I went to Facebook, and saw that Facebook had very thoughtfully reminded all my friends about my birthday. You'd think it could have reminded me as well, wouldn't you? So I could brace myself for it, sort of thing?
When we get home tonight, they should have the last of the sheetrock hung in the office and living room. A little mud and some paint, and it will start looking like a house again, instead of the inside of a barn. Not a moment too soon. Our building permit expires on Tuesday. I remember being incredulous when the contractor initially estimated that the construction phase of this project would take about six months. It's been almost a year. I'm ready to be done. As birthday presents go, this is a pretty good one.
Cake, or death? I think I'll go with the cake, thanks.
They sprung mom from the hospital yesterday afternoon. As usual, it was my brother who took off work to do the fetching and carrying and running around. He's a great guy, my younger sibling. We're all lucky he lives close enough to help, and that he does it without complaint. It's not like I could be any help if I were there -- I'd be underfoot, more like -- but I'm sure as heck no help from 1200 miles away. In fact I'm just one more chore, because he's got to call me and tell me what's going on. This is not an MS thing. It's an Aging Parents Living Far Away thing. It's a problem for which I wish I had a solution.
Anyway, she's doing OK. For now.
Since I can't do anything useful, I might as well do something fun. We're off to a UW volleyball game against Stanford. I'm still getting used to this whole spectator sport thing. It seems odd to critique the game played by these tall, slender, athletic people, when I myself could never play volleyball worth a darn. But for Pete's sake, what's up with all the service errors?
My mom fell down a couple of brick steps on Monday afternoon.
She was puttering around in the garden. It was starting to get dark, she was getting tired, and her vision has deteriorated to the point where she's probably legally blind. She tripped and fell.
She's OK, for a given value of "OK." She didn't mention it to my brother when he talked to her on the phone Monday night, but by Tuesday morning she was in enough pain that she thought she'd better see a doctor. Fortunately, to everyone's relief and amazement, she didn't break anything. They're keeping her in the hospital for a couple of nights so they can give her some serious pain meds.
My mom turned 87 a couple of months ago. She's had assorted cardiac and respiratory problems, colon cancer that left her with a colostomy, an infection that cost her the tip of her index finger. Despite several eye surgeries, she can't see worth crap.
She and my dad, who will be 89 in a few weeks, still live in the same house they've lived in since I was a toddler. It's mostly all on one level, but elsewise not particularly accessible. They get some help with housecleaning and heavy lifting in the yard, and my niece lives in an apartment on the property, in exchange for checking in to make sure they're vertical before she leaves for work. They do everything else themselves. My dad still drives, which makes me crazy.
My point (I'm just figuring this out myself) is not that I'm worried about a potentially dangerous living situation, although I am. There are resources available to them, ways to make their home safer, and even, dare I mention it? other residence options they might consider. Believe me, we're working on it. We're working on it. Suggestions along these lines are met with fierce, if not to say rabid, if not to say furious, resistance. They're a couple of stubborn, cranky old... well, never mind. That's not my point.
My point is that gettin' old ain't for wimps. Old age is progressive too, you know. When I think of what my mom and dad face, every day, day in and day out, without complaint (much), I feel like a total whiner. I mean, they're tough! I don't think they make them like that anymore.
But guys, for criminy sake, put a handrail on those steps, willya?
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