Saturday, February 28, 2009
This morning I sat down to calculate how much care Dad needed and how much it would cost, which turned into a ridiculous exercise in rabbinical interpretation ("needs help with transfers" and "needs help to get to meals" are two different categories, but since the help Dad needs to get to meals includes help with transfers, do we need to check off both categories -- with their attendant expensive points -- or only the second?). My first effort put him off the chart, but I managed to scale back to a level that might be feasible if the VA comes through with a decent pension and if my salary doesn't wind up getting cut in the budget crunch. These are both big ifs.
The most expensive category -- incontinence -- is also the newest; disorientation is new, too. I found myself wondering if Dad could have a UTI, which could cause both of these symptoms and is treatable. An infection would also help account for his recent exhaustion. Elderly people often don't have traditional UTI symptoms, and the infections can be extremely dangerous: Gary's father was admitted to the hospital with a UTI twelve hours before he died, and that was the diagnosis that put my mother in the hospital most recently, too. In her case, the infection had gone into her bloodstream, and someone at the nursing home told my sister that this by itself would account for her disorientation, which can take a long time to wear off.
I called a VA advice nurse, who agreed with me that Dad should be seen. So I went to his place, woke him up from his nap, and said, "We're going to the VA now to get you checked out for a UTI."
I took him to the ER, since nobody else is around on weekends (and since it would take weeks to get him in to see his primary). They weren't very busy, luckily, and took him right away. The ER doctor agreed with me that we should look for something treatable, even though they can't do anything about Dad's "end-stage heart disease." I hadn't heard that phrase before, and it chilled me. My head knew what we were dealing with, but my gut hadn't quite gotten the message yet.
But, lo and behold, Dad does have a UTI! (He also has tremendous amounts of fluid in his lungs, but the doctor told me they can't do anything about that, because it's a function of his untreatable heart disease; he's already on lots of Lasix.) So we went home with antibiotics, after the doctor had told me that yes, a UTI could account for the symptoms he's been having.
I was inordinately proud of myself for making the right call, and Dad was glad that he has at least one condition that we may be able to make go away. While we were there, we also got new dressings for his skin tears -- his skin's very fragile, and he's covered with bruises and scrapes even though he's not on blood thinner -- and some foam to protect him from his plastic oxygen cannula, which had rubbed raw spots behind both ears.
We only spent a little over three hours there, which made it a very successful ER trip indeed. I was especially happy because I felt like such a fool after calling 911 in Palo Alto.
Once we got back to Dad's facility, though, things got more complicated. I got him back to his room, doled out his meds for the week (including the twice-daily antibiotic), and gave him tonight's meds with some Ensure and applesauce, since he has to take the antibiotic with food and dinner was over. So far, so good. Then I went to instruct the caregivers to make sure that a) he takes his meds for the next ten days and b) he takes them with food.
The caregivers explained that they can remind him to take his meds, but they can't give him his meds, or even stay to watch him take his meds, unless a) they have a meds list signed by his doctor and b) all the meds are in their original bottles. If I've put the meds in trays, the caregivers don't know what all the little pills are. In other words, unless they're managing every aspect of Dad's meds, it's strictly hands off. And if they manage everything -- you guessed it -- the cost goes through the roof. This isn't just facility policy: it's state law, probably because of the strict division maintained between assisted-living places and SNFs.
Aaaaargh! How can it be this complicated to make sure that an old man with an infection takes his antibiotics? The caregivers nodded sympathetically. They think the system's crazy too, but they're bound by red tape and liability issues.
I'll talk to the nursing director about this on Monday, but I don't expect anything to change. In the meantime, I'll call Dad twice a day to remind him, and they'll remind him too, and I'll probably wind up going over twice a day (at least for the first few days, until, with luck, his head clears a bit) to make sure that he's taken the pills.
I'm really glad we only live two and a half miles away.
Friday, February 27, 2009
Today I spoke to the homecare social worker, who agreed that the PT had behaved completely inappropriately, but also said she'd given us completely incorrect information. Group homes -- the good ones, anyway -- are more expensive than assisted living, not less, and there's something like a two-year waiting list for the waiver program that would make them affordable. So if Dad can't stay where he is, his only option will be to go into a nursing home, apply for the waiver program, pay his assets down until he's on Medicaid, and wait to see if he gets into the waiver program and can move out of the nursing home into a group home.
Gary and I talked about the possibility of paying up to $800/month ourselves -- although that would be very difficult for us to maintain -- to keep him where he is. What could we get for that? Could we get enough services?
In the meantime, I swam, gave a presentation to a local elder-college group, had the final inspection of the old apartment (which went fine, and my key ring is now pounds lighter!), and called Dad to see if he wanted to go to a concert with us tonight. He decided he did. He'd gone to the exercise class at his facility today and enjoyed it. Much cheered, I told him that Gary and I would be there around five to have dinner with him and take him to the concert.
But when we got there, he was sitting semidressed in his wheelchair. He didn't want to go down to dinner, let alone to the concert. I managed to coax him into eating some applesauce and an Ensure and checked his temp and BP -- both of which were fine -- and also rebandaged a wound on his arm that had reopened. He bleeds very easily these days, and his arms are horribly bruised.
As we were getting him changed into his PJs, he had an accident, so we summoned a caregiver to help get him cleaned up. This is the third time this has happened, so she's recommending Depends. Lots of people there wear them, but Dad won't be able to get in and out of them himself . . . which already, by itself, puts his care level above what we can afford (at least, if I'm reading the contract right: there are complicated point systems for different kinds of care, and numbers of points translate into drastic jumps in cost).
I'm afraid that putting him in a nursing home will kill him, although my sister and Gary both think that's starting to look like the only option. I don't know what to do. Thank God we're meeting with the social worker on Monday.
Oh, and before he could go to a nursing home, he'd have to be admitted to a hospital for three nights. I'm sufficiently worried about his sudden downward spiral that I'm tempted to take him to the VA ER anyway, just to see if they can find something that can be treated, but he'd fight me tooth and nail on that.
On the plus side, I had a decent conversation with my mother today, and gave a well-received presentation to a local elder-college group, and swam.
Thanks to everyone for the comments, especially about how these dreary narratives are helping you. That helps me, because I feel like the most boring person on the planet right now!
Thursday, February 26, 2009
After I heard from Dad's physical therapist this morning, I called the sales director at the facility -- she's one of the people I really like there -- to tell her what we'd been told about Dad needing more care. She promised to confer with the two nursing directors and schedule a meeting with me.
I spent most of the morning on the phone dealing with other Dad issues (mostly trying to reschedule various VA appointments), as well as attempting to straighten out some insurance issues of my own. Then Gary and I went to Dad's old apartment to get his remaining belongings out of there (except for some stuff we're leaving for the social worker to give to folks who might need it). We tossed a lot of stuff and packed up the rest. I became weepy when we threw out his old tools. They probably aren't operational or safe anymore, and even if they were, he'd never use them again, but they represent his loving and never-ending repairs on the sailboat he lived on for twelve years -- the happiest time of his life, it seems to all of us now -- and it was really hard for me to consign them to the trash.
We had to make two trips, and after we dropped the first load off at our house, we went by Dad's place to check on him, since he hadn't been answering the phone. He hadn't answered because he hadn't heard it, although he seemed more or less okay otherwise. On my way out, I stopped in to say hi to the sales director, and she called the two nursing directors into her office, and we had the meeting right then and there.
It turns out they were furious at the physical therapist for talking to me and Dad (and getting me, at least, pretty upset) without talking to them first. They don't agree that Dad needs to be in a group home, and they felt they should have been consulted about any extra needs he had before someone else told him he had to move again. They'd already called the home-health agency to complain -- although they also said the PT is very good at her job -- and they promised to work with us to keep him there within our budget. This is going to be a challenge, since my estimate is that he needs a minimum of $500 of extras a month (and the outside home-health agencies I've been pricing aren't much better), and even the base price already has us strapped. But Gary and I had already decided to keep him there at least another month, just because we're all so tired of moving. I could hardly find a good group home and get him moved in before March 1, anyway.
I felt somewhat reassured after the meeting, although of course it's hard to tell how much of their motivation was concern for Dad (and me) and how much was desire to keep business in a tight market. They may not be able to sort that out themselves. Also, Gary and I agree that there's a clear and consistent good cop/bad cop dynamic: one of the women in this trio is a real hardliner about charging every penny for every service, whereas the other two seem more willing to be flexible. Again, I don't know how much of that is simple personality differences, and how much is strategy. But I felt like they'd heard us and like Dad would be getting more attention: for instance, they said he'd expressed interest in the daily exercise class, so they're going to send someone up to his room every day to invite him down.
We went back to the old apartment, finished packing up, and headed back to Dad's place to bring him some clothing he'd left behind. I'd known that he was going down to dinner, and I'd expected the caregivers to bring him back up to his room and make sure he'd successfully switched from his portable concentrator to the big one.
To my alarm, we found him in his scooter in the hallway outside his room. Our best guess is that he drove himself back upstairs after dinner; a caregiver we talked to later said she'd told him to press his call button when he needed to go back to his room, but that he hadn't done so. When we found him, his concentrator was beeping a "no breath" alarm because he'd taken off the nosepiece, because he was trying to take off his shirt, which probably means that he thought he was aleady in the room and was trying to change into his pajamas. His call button had fallen on the floor next to the scooter. I doubt he'd have been able to retrieve it by himself. Someone would have come along eventually, of course, but he never should have gotten stuck there in the first place.
I got him back on air, and while Gary carried things up from the car, I got him into his wheelchair. The PT told me he's now having trouble transferring, and I think so, too; I'm not at all sure he'd have gotten into the wheelchair safely without me there, although of course he insists he's fine. When I got him into the room he asked me to help him arrange his meds for tonight and tomorrow morning, and I discovered that he'd never taken this morning's meds.
So Gary and I are concerned, to put it mildly. I'm wondering if we should try to get him into a group home sooner rather than later. Gary's wondering if we should go straight to a nursing home, although I'm loathe to take that step.
When we spoke to the caregiver, she seemed pretty upset by how we'd found him, and said she'd make sure someone checked on him after dinner from now on. She also said that he'd expressed worry about extra charges, so he may have tried to get himself back after dinner to save money. I have to make him understand that there won't be extra charges we haven't agreed to (a point the three women emphasized in our meeting). I'll call the sales director tomorrow and see what's going on. We're already meeting with a social worker on Monday, and she's supposed to be working on expediting our application for a VA pension. Even if we get it, it's not likely to be much, but every little bit helps.
I feel wretchedly inadequate to this situation: although I spent almost all day working on Dad's behalf, he couldn't see any of that, so I think he feels neglected, and I feel as if I should have done a better job of shielding him from financial worries so he won't do dumb things and endanger himself, and I also feel caught in the middle between the assisted-living staff and the home-health folks. (The assisted-living staff pointed out that this is precisely one of the reasons the PT should have handled the situation differently.) And I'm hoping I didn't get the PT in trouble, because I like her.
What. A. Mess.
Here's last night's homily. It was very well received (by the sixteen people who showed up for the Ash Wednesday evening service: oy!). Two people asked for copies, and afterwards I had a good conversation with two of our priests and one of our deacons about eldercare issues.
I hadn't preached since September. It was nice to be back in the pulpit!
We embark tonight upon Lent, the most solemn season of the church year: the forty days leading to Jesus’ death and resurrection. These forty days resonate with the forty days Jesus wandered in the wilderness after being led there by the Spirit. They also echo the forty years the Isrealites wandered in the wilderness after being led there by Moses, who would take them to the Promised Land. We, too, are heading toward a Promised Land, but however many times we have made the journey, the path remains no less strange and steep, strewn with rocks.
Many Christians think of Lent as a time of rules and strictures, an oppressive time. Eat this. Don’t eat that. Give up what you love. Embrace what you dislike. To show how much you love Jesus, make yourself really uncomfortable. Carry a cross, and make sure it’s a heavy one.
There’s another way of thinking of this, though, and I was reminded of it recently while reading My Grandfather’s Blessings by Rachel Naomi Remen, the Jewish physician Sherry has quoted in several of her own homilies. Remen’s grandfather was a rabbi, and when she was very young, he explained the Passover story to her. She didn’t understand why the Isrealites were reluctant to leave their slavery in Egypt. Her grandfather told her, “the choice people have to make is never between slavery and freedom. It is always between slavery and the unknown” (372). Freedom means embracing the unfamiliar, learning new skills and customs, being unsure.
This principle was vividly illustrated by the ER patient I visited, a former inmate who told me how difficult it was to readjust to life outside prison. “Inside,” he said, “you don’t have to make choices. Outside, it’s nothing but choices. I’d go to the store to get cheese, and there’d be an entire wall of cheese, and I’d just stand there, paralyzed. There was too much cheese.”
Of course, too many people in the world don’t have any cheese. This patient’s predicament would sound luxurious to them, and may sound luxurious to those of us planning to give up cheese –- or chocolate, or alcohol, or Sudoku –- for Lent. But the purpose of our Lenten disciplines isn’t to make us suffer: it’s to free us from old habits so we can see the world afresh, so we can gain new perspectives and make more conscious choices about how to serve God by caring for our neighbors and ourselves.
Sometimes we see those perspectives most clearly when we are least prepared for them. One afternoon last year, I went on my standard walk around our neighborhood. Gary and I live in an area that was mostly wild land when we moved here ten years ago, but is now covered with new houses. Between the developments there are still strips of wild land, rock and sage and grasses. Depending on the time of year, I may see rabbits, lizards, or snakes. One summer, I saw a rattlesnake not fifty feet from the nearest house, basking on the paved walkway. In the snow, I’ve seen what might have been coyote tracks, although I’ve never seen an actual coyote.
Whatever wildlife I meet, this is familiar territory for me, and it usually feels very safe. But on this particular day, I set out later than usual. As I turned around to come back home, dusk began falling. The dark settled in more quickly than I expected. The familiar shapes of fences and rocks along the path became transformed by shadow into objects I’d never seen before. Not too far away, a little higher in the hills than where I was walking, coyotes began yipping, and the neighborhood dogs answered with long, eerie howls. My response was completely a matter of mammalian biology: as trite as it sounds, the hair rose on the back of my neck, and I felt a sliding sensation down my spine. I hurried home much more quickly than usual.
That walk made me remember how wild the world we live in really is, and how quickly we can find ourselves in strange, often frightening territory, even though we seem to be in a place we’ve visited many times before. Dusk can fall on our lives in any number of ways: after the diagnosis of a serious illness, after a death, in the aftermath of natural disaster. We’re in the same geographical place we’ve always been, but everything’s different. We no longer recognize everyday landmarks, and we’re newly aware of lurking dangers. There are predators howling in the darkness. They’ve always been there, but we’ve never had to think about them before.
The walk was a spiritual experience, a wilderness encounter. It shook me out of my complacency and once more showed me the grandeur and mystery of God’s creation. For weeks afterward, I thought about the haunting call-and-response of the coyotes and their domesticated cousins. Sometimes at dusk, as NPR broadcasts and cats crying for dinner filled the house, I reminded myself of the canine chorus. I knew I could hear it if I were brave enough to venture outside. But I chose to stay indoors, in familiar comfort. I maintained my safe routine.
I wasn’t allowed that comfort for long. Lent came very early, in October, when my elderly father moved here from Philadelphia, where my mother and sister still live. As many of you know, my father’s arrival marked the beginning of a wilderness journey we still haven’t completed. He went from the airport almost directly to the hospital, and spent the next two months in four hospitals and two nursing homes in Reno, San Francisco and Palo Alto. My mother had her own string of hospitalizations, and is now in a nursing home. Gary’s father died very suddenly, necessitating an emergency trip back East over Christmas. My father’s live-in companion and best friend of twenty years decided to move back to Chicago, and Gary and I found ourselves moving Dad into assisted living on four days’ notice.
The past five months really have felt like a wilderness, a thorny maze of worry, grief, and frustration, all in the shadow of increasing darkness. I’ve had to give up old habits: relaxing vacations out of town, the illusion that I’m in control of my own schedule, putting off tasks in the serene belief that I’ll be able to do them at the last minute without unexpected interruptions. I’ve had to learn unwanted new skills: how to deal with patient representatives, home-health companies, insurance issues. I know entirely too much about oxygen tanks, wheelchairs, and advance directives. I’m exhausted. Gary’s exhausted. Our bank accounts are exhausted.
If this is freedom, I’m not sure I want it. I want my old, comfortable life back. But this ordeal has also been a spiritual experience, a wilderness encounter. It has shaken me out of my complacency and once more showed me the grandeur and mystery of God’s creation. I’ve marveled at the loyalty of friends, the skill of medical caregivers, the generosity of strangers. For the first time, I understand why Jesus tells us that his yoke is light: caring for my father is certainly one of my crosses, and not one I always handle well, but I’d never put it aside. It’s a privilege. I’m grateful to do it.
And these months have, of course, forced me to confront mortality: to remember that we are dust, and to dust we shall return. As I walk towards Jesus’ death, I am also walking towards my parents’ and my own, towards my personal Good Fridays. The journey would be unbearable if I didn’t know that Easter is waiting, too.
Until then, I travel in the wilderness, as all of us must at some point in our lives. Lent is training for that expedition, God’s own Outward Bound program, repeated every church year to keep us in condition for the journey. Giving up the comforts of home and hearth, learning to carry only what we truly need, we set out into new terrain. And there we find life, and love, and the Good Shepherd who will protect us from the howling dark.
My Dad's physical therapist just called to tell me that she doesn't feel he's safe in the assisted-living facility, which is too large for his needs; she doesn't feel we're getting the services he needs (especially for what we're paying), even though she likes the place. I tend to agree.
She's recommending that he go into a group home, which is one of the options we'd been exploring before. The upsides will be more personal attention, possibly for less money. If we can get him a place with his own room and phone, that would be great. I gather that under those conditions, he'd even be amenable.
The downside is that we'll have to move him again. He's not even fully out of his old apartment yet: Gary and I were going to work on that today.
I'm very tired. But if we can find someplace that will work, it will be worth it.
I'll post my Ash Wednesday homily tonight. I meant to do it last night, but it got away from me.
Sunday, February 22, 2009
Yesterday I swam and got some schoolwork done. Today I woke up early and managed to work out and stop briefly by Dad's before church. I came home feeling very virtuous and planning to get a lot more work done, and hit a wall.
Or a semipermeable membrane, anyway. I did get grading done -- including class prep for tomorrow -- but not as much as I wanted or needed to do. Right now I should either be grading or writing my Ash Wednesday homily, but instead I just want to sleep. That's probably understandable after the latest Stanford trip, not to mention the sheer emotional turmoil of the last five months. The problem, though, is that all the tasks piled in front of me really do need to get done.
This coming week in particular is Hell Week -- multiple obligations every day -- and I can't get out of them. Or, let's say, the ones I could get out of (like preaching) are the ones I don't want to get out of, and the ones I'd rather get out of (like meetings at work), I can't get out of.
I'll probably opt for sleep over productivity, since I always do, and since I'm always more productive when fully rested, anyway. I'm just not sure I have enough hours to do what I need to do.
Three more weeks until break, not that it will be much of a break. I think I can, I think I can.
Gahhhh. On which note, time to stop wasting time blogging!
Friday, February 20, 2009
I deleted yesterday's post because my sister wasn't comfortable having our family financial situation on the internet; in retrospect, she's right. I want to thank everyone who commented, though, particularly on said financial situation. I appreciate the advice, and will look into it!
Meanwhile, my faithful reader Jean posted a comment about how nice it was to read about a long trip that didn't include an oxygen disaster.
Um, well . . . .
I wrote that post in the early evening yesterday, after Dad and I had eaten dinner -- such as it was -- and gotten settled in the hotel room. About eight, though, he started complaining of having trouble breathing. His portable concentrator was displaying an alarm signal saying that he was breathing faster than it could deliver oxygen. His BP was fine when I checked it, but when I bumped the portable up to 5 liters a minute (more O2 than he's ever needed, even when he was in the ICU after his heart attack), it displayed the same alarm signal.
So I became alarmed and called 911, over Dad's furious protests that he felt fine now, that I should listen to him instead of looking at the machine, and that he didn't want any of us to have to spend the money on an ambulance or ER bill. "If you have to drag me to the hospital, why can't you take me?" I told him that the paramedics have tools and equipment I don't.
So I called 911, and the paramedics showed up in about thirty seconds and decided to take Dad to the hospital "just in case." Once he was in the ER, he did splendidly (at one point he was even 100% on room air, which is unheard of), but they kept him anyway, since he was having his echo at 8:00 a.m. Everyone's told me that I did the right thing, but I still wonder if I overreacted.
The echo wound up happening around 11:00. In the meantime, I'd gone back to the hotel room and managed to sleep fitfully from about 11:30 to 5:30, and Dad had slept fitfully in a busy, noisy ER room. All the medical folks were great, but I have to say, Stanford's ER is really crowded and singularly dingy; it felt like a high-school lockerroom. And to get into the waiting room, you have to go through a metal detector while a security guard searches your belongings much more thoroughly than I've ever been searched at an airport. My knitting/nail scissors, which have sailed through lo these many plane flights, were taken and held for me until I left the ER.
The echo-tech brought the machine to Dad in the ER, which was convenient, and I gather the results were pretty good; the valvuloplasty is still working, although this raises the question of why he's been so tired. He was discharged around 1:00, and we left for home.
It was a long trip. There was a lot of traffic -- several accidents plus a high volume of people heading into the mountains for the weekend -- and since neither Dad nor I had gotten enough sleep, neither of us was at our best. Small annoyances became magnified, and we both snapped a lot. My car cabin is noisy, and so's the portable concentrator, so Dad was having more trouble hearing than usual. I'd say something, and he'd say, "What?" and I'd raise my voice to repeat it, and then he'd get angry at me for yelling at him. We both ate in the car (Power Bars for me, Ensure for him), but he couldn't manage the pull-tabs on the Ensure, so I had to brace each can between my knees and tug at it with one hand while clutching the steering wheel with the other. Most of the time this worked fine, but one can gave me trouble; I finally got it open, but part of it spilled in the process, and I wound up sitting in a puddle of strawberry Ensure for the last part of the trip.
Also, Dad always coughs and chokes when he eats. All kinds of medical folks have tried to address this problem, but he's not interested in a pureed diet and wants to eat what he wants to eat, so those of us who love him have just gotten used to several minutes of strangling noises whenever he eats. In the car, though, this meant that he'd take a sip of Ensure or a bite of the ice-cream sandwich I bought him at a rest stop (he loves ice-cream sandwiches!), choke for five miles, take another bite, choke for the next five miles, and so on.
Halfway through the trip, my sister called me to say that my mother was going back to the hospital: her potassium level was very high, and her doctor decided this was best dealt with in a hospital, not the nursing home. I called the hospital when I got home, but she'd just gotten to the ER and her nurse didn't know what was happening with her yet, so I'll call again when I finish this post.
Anyway, needless to say, Dad and I were both exhausted by the time I got him home. The good news is that his own portable concentrator arrived while we were gone, although we were both too tired to try to unpack it.
The other good news is that I get to sleep in my own bed tonight. Thanks be to God!
Later: I just called the hospital; Mom's being discharged back to the nursing home. Yay!
Wednesday, February 18, 2009
Well, my parents have switched places. Mom's been gamely going to physical therapy for the last three days -- since my sister told her that doing well there is her only hope of going home, rather than staying in the nursing home -- and has been markedly more cogent. Today we had the most normal conversation I've had with her in months. She asked about my trip to Vegas yesterday, was interested that I'd had a poem accepted, and asked me to read it to her (I didn't have it with me, but I sent a copy to my sister, so she can read it to Mom). She sounded a little weak and blurry, but my goodness, what an improvement over only breathing into the phone and not saying anything!
Dad, meanwhile, is having trouble; he fell the day before yesterday, although he said he was okay (and seemed okay), knocked the hand controls off his scooter yesterday by running into a wall (the maintenance guy at his assisted-living place is trying to get a replacement part), and was very lethargic today. Evidently he went to breakfast, but when I showed up around ten this morning to arrange his meds for the week, he was drooping over in his wheelchair, drooling, and didn't respond when I called or shook him, although I could see him breathing. He eventually came to, but only when I'd gotten the healthcare staff in there. He said he just felt really tired.
After I did his meds, I dragged him down to lunch, which he'd have skipped otherwise. Then I went out and bought a blood-pressure cuff: when I went back after work, his BP was fine, and he said that a visiting home-health nurse had said that his O2 sat was 96%, but he was exhausted again, lying fully clothed in bed, and the staff hadn't been able to get him to go downstairs for dinner. I nagged him into drinking an Ensure, but he needed me to bring him his PJs and help him undress. He seemed to feel better when I turned the O2 from 3 to 4, even though his sats had supposedly been fine.
Meanwhile, we're planning on going to Palo Alto tomorrow. Dad says he wants to go, even though I keep asking him, "Are you feeling strong enough for this?"
We'll see what happens tomorrow morning. At least we don't have to worry about @#(*@#%& oxygen tanks.
Tuesday, February 17, 2009
A little before noon yesterday, I sent my new poem to The Yale Journal of Humanities in Medicine. Half an hour later, the poetry editor wrote back to say they'd take it.
Dang. I was prepared to wait months!
Since this is an online journal, I'll post the link to the poem when they post it.
Monday, February 16, 2009
We got quite a bit of snow yesterday, and 80's been chains-over-the-mountains all weekend, so we were right not to try to get to Palo Alto.
Dad's doing well: yesterday he used the portable concentrator and his scooter to get to breakfast and dinner -- he didn't have lunch, unfortunately, although he always has Ensure in the apartment -- and after dinner, he used the scooter to explore the facility a little bit. Hurrah for independence! Gary's suggested that we try to get a motorized wheelchair from the VA; I asked his doctor about that a few weeks ago and was told that it was very difficult, but I can't remember why. Maybe because he can still use his arms, which in theory means that he can push the wheelchair himself? Anyway, thank heavens he has the scooter! When the weather's nice, he'll even be able to go outside by himself, onto the beautiful patio overlooking the mountains.
Things in Philly are less positive, unfortunately. Mom's being discharged from the rehab aspect of the nursing home on Tuesday, because she simply isn't making any progress. She wants to go home, but my sister -- with full support from me, Gary, and Dad -- has reluctantly concluded that this is impossible, that taking care of her there will just be too difficult. At $20 an hour, around-the-clock home care is too expensive, and two flights of very steep stairs separate my mother's bedroom, on the second floor, from my sister and brother-in-law's, in the basement. Mom's bathroom is next to her bedroom, but at this point, she can't even use that without significant help.
Yesterday, I called her four or five times in the space of fifteen minutes. Each time she picked up, but I couldn't make her hear me (or answer; I'm not sure which). I had to content myself with saying, "I love you, Mom," and hanging up, hoping she'd heard.
This morning around 3:00, she fell out of bed at the nursing home. She's okay, but my sister's very glad this didn't happen at home, where she'd have lain there for four hours before anyone realized what had happened.
So the decision seems clear: Mom has to be admitted to the nursing home as a resident. My sister still feels guilty about it, though, and Mom's going to be miserable and feel betrayed. She just wants to go home.
I'm glad I'm not in my sister's shoes right now, although I could wind up there soon enough.
Every day without a crisis here is a good day. Yesterday, I even wrote a new poem, and plan to send it out when it's had time to age a bit.
Saturday, February 14, 2009
Well, yesterday Gary and I did something that may have been foolish -- and that was certainly extravagant -- and bought Dad the same kind of oxygen concentrator he's renting. We found a new one on the internet for a mere (haHAhaHAhaHAha) $2,995; because it's new, it comes with all the gadgets and warranties. A used one would cost $2,700 without a warranty, and a very used one would cost $2,400 without a warranty, so it seemed better to go with the new equipment.
Luckily, we can take the money out of savings and don't have to take out a second mortgage on the house. I feel like I've bought a car. Dad is, of course, very grateful, and is trying to be good about learning to use the machine and becoming more independent (since if he needs to be escorted to every meal, the assisted-living cost goes up $495 -- haHAhaHAhaHAha -- a month).
Just doing our part to stimulate the economy.
The new machine should arrive sometime next week, if Dad's doctor faxed the O2 prescription to the company on Friday as I requested(they're in Colorado). I just hope Dad gets a good long period of use out of it.
Meanwhile, road conditions on 80 seem to be justifying our decision not to go to Palo Alto this weekend. Lotsa snow up there!
In other news, I volunteered at the hospital today for the first time since late October. I've never worked a morning shift before, and I'm not a morning person, but it went okay. It was a pretty quiet shift, but I had lots of requests for prayer and handed out lots of blankets, so I stayed busy. I also ran into someone I knew from church and someone who recognized me from a lecture I gave at the med school. Two nurses and one PA seemed actively glad to see me; the other folks I knew either didn't remember that I'd ever been there or didn't realize that I'd ever left.
At the end of the shift, I bumped heads with a social worker who was less than sympathetic to a homeless patient. She was doing that "Oh, he just wants to get a place to stay" routine, and I pointed out that in the winter, this is entirely reasonable (it's entirely reasonable anytime, but especially in the winter). I'd already given him a list of shelters, but I was hoping that she'd help with a shelter referral; it's not like I was trying to get him admitted to the hospital. I was annoyed by her automatic assumption that he was trying to play us, especially since I'd talked to the guy and she hadn't even met him yet.
Part of the problem may have been resistance on the part of a paid professional to being asked by a volunteer to see a patient. I've run into this before. One social worker, years ago, flat-out told me that she'd only take referrals from doctors, who often don't know crucial things about the patients' living situations. Physicians, oddly enough, have usually been very open to my giving them information, if I can catch them for three seconds. There's weird social-class/workplace-hierarchy stuff going on here that I can't even try to decode, although I might be more effective if I could. But hey, it's supposed to be about the patients, not about the rest of us.
Anyway, having pissed off a member of the staff, I seem to be back in the swing of things. PITA for Christ! PITA for Christ! Yeee-hah!
Thursday, February 12, 2009
One of my faithful readers asked if I'd send her Dad's address so she could send him the occasional note or card. (Thanks, Leslie!) The problem with this is that I have a deeply ingrained instinct against giving out street addresses; and, anyway, Dad can't read anymore, because his vision's really bad.
But if anyone wants to e-mail me a nice note for Dad, I'd be delighted to read it to him! I actually think this is a fabulous idea.
Please keep your messages secular, since he's completely anti-religious. All kinds of people are praying for him, and I'm more grateful for that than I can say, but we'll keep it our little secret, okay? The goal here is not to raise his blood pressure precipitously!
I won't be offended if anyone doesn't do this -- we're all super-busy, and writing to someone you don't know is a little awkward -- but I'll be very touched if anyone does.
My e-mail address is susanpal (at) aol (dot) com.
Although I'm almost afraid to say this, maybe things are starting to look up (on this side of the country, anyway; my mother's condition is still pretty dicey).
Yesterday morning I went over to Dad's to wait for the portable concentrator, which arrived right on time. Dad's now on Prozac -- yay! -- although of course it won't kick in for a few weeks, even if it works for him. But we're taking steps to address the problem, and that's a relief.
After I left his house, I went swimming -- double yay! -- and then had a pretty good day at work. Somewhere in there, I decided not to attempt the trip to Palo Alto; we're expecting lots of bad weather over the next few days, and my back's still very cranky (a situation that would hardly be helped by five solid hours in a car, even in good weather), and, as Gary put it, "we could all use a mental-health weekend."
So this morning, I slept scandalously late and then took Dad to the Reno VA for the tests (bloodwork, EKG, chest x-ray) that didn't need to be done at Stanford. This was also an ideal opportunity to test the portable concentrator.
The official verdict: we love it. The portable concentrator is a thing of beauty: small, lightweight, easy to use -- it's controlled with a touchscreen, so there are no pesky wrenches, screws or gauges -- and able to operate on a battery, from a wall outlet, or plugged into a car's power source. Furthermore, you can switch from one of these power sources to the other with no interruption in service. It's what oxygen technology should be: practical, reliable, and user-friendly.
Which is, of course, why it costs $4,095.
And the rental price, at least from Dad's DME company, is $100/week, and we couldn't rent it continuously even if we could afford to, because it's in such high demand that we were lucky even to be able to get it for a second week. Pfui.
We were glad to have a reliable source of oxygen at the VA, because when we got there, it turned out that the requests for Dad's tests weren't in the system. Stanford had called them over to the Palo Alto VA, assuming that since the system's centralized, they'd show up in Reno too. They didn't.
So I called the Stanford people, who called Dad's cardiologist at the Reno VA, who was in clinic all afternoon. His nurse said she'd try to grab him between appointments so he could enter the requests in the computer. Dad and I sat around for an hour or two, and then got word that the requests were in and that we should race to various labs before they closed.
No problemo. All the tests were completed in half an hour, even though they were in different parts of the hospital. Yay!
And it was still light, and we had the wonderful portable concentrator, so we decided to take advantage of it and go for a scenic drive. I took Dad down to the rich part of town, with lots of gentleperson farms and horse paddocks, and then wound back home via Windy Hill, which has a gorgeous view of the valley. We had nice view of mountains, too. Dad said wistfully, "I wish I could hike. I live in this beautiful place, and my health won't let me enjoy it fully." He enjoyed the drive, though. He's been spending so much time cooped up in his room that just getting outside was a treat for him.
With Gary's permission, I brought Dad home for dinner. It was very pleasant. Dad loved the food, and we listened to classical music, and after Gary showed Dad the balaclava I made for him, Dad decided that he wanted one. I was very moved, because he's always been uninterested in my knitting, but he was very definite about wanting a balaclava. His favorite color is red, and I have some red superwash wool he likes very much, so I hope to start the project sometime this weekend.
We took him home and discovered that Fran had left him a phone message -- which made him all kinds of happy -- and Gary put up a wall clock for him, and then Gary and I went shopping for a small dinner party we're having tomorrow with Dad and two friends. He won't be able to complain about not seeing us this weekend!
The only downside today was that I wrenched my back again wrestling Dad's wheelchair into the trunk. We may need to invest in one of those ultralight transport wheelchairs, because I just can't handle Dad's chair, even though it's pretty lightweight too. I've now taken a muscle relaxant and an anti-inflammatory along with my usual evening meds, so with any luck, I'll be able to move when I wake up tomorrow.
It was so good to see Dad enjoying himself, even if it was in a quiet and wistful way. I hope this trend continues!
Oh, and Saturday morning I'll be working a shift at the hospital. Yay!
Sara Wilson from the Fresh Air Fund sent me this call for summer counselors. So if you're a college student who likes working with kids, enjoys a camp environment, and needs a summer job, why not apply? Not only will you have a fun summer gig, but you'll be participating in a venerable Rickety Contrivance of Doing Good!
Tuesday, February 10, 2009
It now looks as if we may not go to Palo Alto this weekend, since the weather's supposed to be crummy. We might be able to get over there, but getting back could be problematic. Dad can have some of the follow-up tests at the VA here; we'd have to get him to Palo Alto for an echocardiogram sometime, hopefully next week.
This is inconvenient; it means another week's rental of the portable concentrator, which is supposed to be delivered tomorrow, and it would throw some of next week's plans off. And if next week didn't work, I don't know what I'd do, since the week after that's completely impossible, schedule-wise.
But I guess I can't worry about that yet; I'll just have to see what the weather's doing.
I know Dad got to the VA and back this afternoon, but because I was so busy today, we only spoke briefly -- by the time I was free, he was asleep -- so I don't know how his appointments went. I'll find out tomorrow, when I go over there for the concentrator delivery (since I have to be trained how to use it).
In the meantime, I haven't knit or gone swimming for days. I'm barely keeping up with schoolwork and am dangerously behind on everything else, including various doctor's appointments for both me and all three cats.
Sometimes treading water is the best you can do.
Monday, February 09, 2009
I talked to Dad last night, and he sounded better. This morning I left a message with his primary-care doctor at the VA about getting him in to see someone about his depression. The PCP called me back around noon, and when I explained what was going on, he said he'd work on a referral.
Ten minutes later, a VA psychologist called me, and shortly thereafter, she'd set up two appointments for Dad for tomorrow: he's seeing a psychiatrist at 3:00, and her after that. This isn't the usual order, but it's what was open for tomorrow.
Nice to see that government bureaucracy can move quickly on occasion! Dad and I are both very grateful that he has such a proactive primary-care doc. The PCP had evidently walked into the psychologist's office to explain the situation, rather than relying on phone or e-mail. Thank you, doctor!
I can't be with Dad tomorrow, because I'll be teaching at the med school, but he's arranged for the paratransit van to pick him up and bring him back home, and someone from his assisted-living facility will go with him. Gary and I have to pay for that -- I think it's $20/hour -- but I want Dad to be seen quickly, and this is the only way it will happen.
Meanwhile, we're waiting to see if the weather will permit us to travel to Palo Alto on Thursday. If not, some of the tests Dad would have had there can be done at the VA here, although his echocardiogram has to be done at Stanford. We could drive him down the following week for that, although the long weekend this week would give us more wiggle room.
Today Dad asked when he's going to see me next. Tomorrow I'm busy all day with class prep for Wednesday, teaching a narrative medicine class at the med school in the afternoon, and facilitating the hospital Lit & Med discussion group in the evening. Wednesday I'm busy with teaching, so Dad probably won't see me until Thursday. Although he's been interested in and proud of my medical-school projects in the past, Dad grumbled this time. "Why do you do all this extra work?"
"Because I enjoy it," I told him. (The med-school stuff also gives me service points for my annual review.) The implication, though, was clearly that I should devote every spare moment to him.
A speech therapist is going to visit him tomorrow morning to work on his swallowing; his occupational therapist was there today, and patiently led him through the oxygen drill again. She also reminded him that having people transport him to and from meals raises his bill, which is good motivation to get him walking, or at least using his scooter. I haven't wanted to emphasize that because I don't want him to feel guilty about money (my sister and I have to pay any extra expenses), but I'm glad the therapist mentioned it.
If nothing else, he's getting lots of attention from lots of people. I just pray that it eventually helps him feel better.
Sunday, February 08, 2009
Okay, so here's the deal with oxygen. When you're switching tanks, you use a wrench to turn off the flow and then turn a screw to unclamp the regulator from the tank. You lift off the regulator, put it on a new tank -- making sure that the prongs on the regulator go into the holes in the tank -- and tighten the clamp. Then you use the wrench to turn another screw on top to open the tank.
Your tank's now ready to use. To get oxygen flowing, you turn the dial on the side to whatever number of liters per minute the patient needs (three, in my father's case).
I only recently learned that the wrench is only necessary when changing tanks; I thought I had to close the tank between each period of use. I've now learned that just turning the dial to zero is sufficient.
This is good news, because it means that ideally, Dad only needs one tank a day for his meals (in his room, he's on the concentrator, which always stays on) and doesn't need to fuss with wrenches and clamps at all. He only needs to turn the dial, which he can see with a magnifying glass. Yay! Simplicity!
His occupational therapist went over this with him, and Gary and I have reinforced it. We made up big signs that we put in standing sign holders, so he could read them easily:
When you go DOWNSTAIRS:
1. Turn the dial on the tank to 3.
2. Take off the nosepiece from the concentrator.
3. Put on the nosepiece from the tank.
When you come UPSTAIRS:
1. Take off the nosepiece from the tank.
2. Put on the nosepiece from the concentrator.
3. Turn the dial on the tank to O.
We went over this last night, and I set him up with a new, full tank, so all he'd have to do today would be to turn the dial or have someone turn it for him.
In the meantime, because the wrenches are small, we've attached them to colorful, easy-to-find objects. One's on an elephant keychain hanging from his oxygen stand. Another's attached to a string of dayglow-orange whiffle balls hanging out of a bright red flowerpot on a shelf in his bookcase.
A little while ago, he called me and said, "None of us can find the wrenches!"
Annoyed, I gave him careful instructions about how to find the wrenches. "Dad, look at the oxygen stand to the left of the bed. See the elephant keychain? Okay, good. Now look at your bookcase. See the red flowerpot? See the orange whiffle balls hanging out of it?"
This worked: he found both wrenches. Success!
Only after we'd ended the conversation did I realize that he shouldn't have needed the wrenches today. I called him back to figure out what had happened. It turned out that although someone brought him back up from breakfast, no one turned the tank off, so it ran out of gas by lunchtime.
"They didn't know to turn off the tank after breakfast?" I asked.
"We couldn't find the wrenches!"
"Dad, you don't need a wrench to turn off the tank! You only need to turn the dial to zero! We've gone over this! I wrote you instructions! Do you have the instructions? On the stand-up sign holder?"
"I don't know where it is. Tell me again."
I told him again, unable to hide my frustration. We keep trying to make things easy for him, and it keeps not working. I suggested that he have the caregiver read the instructions too, since she's evidently even less skilled with oxygen tanks than I am. He said she'd be insulted if he gave her instructions. I said, "Well, she needs them!" (For this they're trying to charge us $255/month?)
Dad sounded miserable. He started telling me how stupid he was -- he never talks like that -- and I realized that I'd been berating an elderly depressed person. Brilliant, Susan. Panicking, I apologized and told him that he isn't stupid.
"Yes, I am."
"No, you aren't. You're my Daddy and I love you."
"I'm your stupid Daddy."
"You aren't stupid, Dad. Tell me something you like about yourself."
"You love me."
"Yes, I do. And so does Liz, and so does Gary."
"There. That's what I like about myself. That's what's good about me."
"Dad, there are lots of good things about you!"
I feel awful. He feels awful.
And if the facility tries to make us pay $255/month for help from people who know less about oxygen tanks than I do, I'm going to tell them that they'd better train their staff before they send out the bills.
Saturday, February 07, 2009
Today my friend Arthur, who's on the committee trying to bring the World Science Fiction Convention to Reno in 2011, e-mailed me to say that Seattle, the major competition, has withdrawn their bid. It now looks highly likely that Reno will indeed host the convention, barring a last-minute bid from some other city.
This would be seriously cool, since Gary and I could attend WorldCon -- something I never get to do, since it always conflicts with the beginning of the fall semester -- and lots and lots of our friends would be coming here. I hope it happens!
For more information, see the Reno in 2011 website.
This morning my sister forwarded me e-mail with this announcement:
If you know any seniors who need help providing food for their animals due to economic hardship, there's an option for short-term assistance through Meals on Wheels' "We All Love Our Pets" initiative. With support from the Banfield Charitable Trust, grants are available to local Meals on Wheels agencies to provide pet food to clients. For more information, visit this page.How heart-warming is that?
You can find still more information here.
Thanks for all the comments asking if I'm all right, everybody! I am all right, more or less; I've just been over-busy and under-efficient this week. My back still hurts. Yesterday I went to the doctor, who assured me briskly that I'm only having muscle spasms (not a slipped disk or anything of the sort). He put me on Celebrex instead of ibuprofen, to spare my stomach, and ordered physical therapy. I have no idea when I'll have time for that, especially since we're driving back to Palo Alto next Thursday. I'm also supposed to take muscle relaxants whenever I don't have to drive, which basically means that I take one at bedtime.
I also saw my shrink this week. She wants to see me again in a month and gave me stern orders to keep up my exercise regimen (which I've been doing as best I can, given the back pain).
Dad's having a tough time adjusting to assisted living. His memory's worse than usual, and he has no energy, and even small tasks seem to overwhelm him. Today he, I, and the sales director (more or less independently) all arrived at the conclusion that he's depressed, so I'm going to talk to his doctor on Monday about getting him back on meds. He's been through so much lately, and he's really hurt that Fran took off without even saying goodbye to any of us, and hasn't called him since she's been back in Chicago (we know that she arrived safely, at least, because we called a friend of hers). He and Fran have been best friends for twenty years, and he used to talk to her every night. No wonder he's depressed!
I'm trying to get him to exercise more, encouraging him to follow his PT instructions to walk a little bit with his walker every hour. A nurse, a caregiver and I are also trying to get him to go on the "scenic drive" the facility offers tomorrow. Right now, he only leaves his room for meals, and sometimes not even then, and that's no good.
Gary and I are getting the room set up, though: it already looks better than the apartment ever did (partly because there's a bunch of stuff still in the apartment we'll have to toss), and I think Dad will like it if he can get out of his funk.
Meanwhile, I need to talk to the nursing director about whether they're going to be charging us more to help him with his oxygen ($255/month, to be precise). I asked about this before we signed the contract and was assured by the sales director and the nursing director that helping people change tanks was included, but now one of the nurses has decided that he needs too much help for it to be free. She and the director were supposed to discuss this and get back to me, but I haven't heard anything yet.
Mom's more with it than she was, although she still has some odd ideas. She's convinced that the nursing home kitchen shuts down every weekend, which it certainly doesn't, and is also looking forward to driving again -- which, of course, isn't going to happen -- so she can travel along the coast. She knows who I am when I call, though, and she's fairly cheerful, which is a nice contrast with Dad.
My sister and I are sad and exhausted. I've been very cranky with people at work and at church (probably a depression symptom too), and I owe lots of people apologies, although I think everybody understands that the last few months have been difficult.
Part of my own funk has come from not being able to look forward to some of my usual escapes. We aren't going to Hawai'i for spring break this year; we probably aren't leaving town at all, although the medical student I'm working with has very kindly offered to let us stay in her condo (ten miles from here in the mountains) for part of break, just for a change of scenery. I've also decided to save money by not going to WisCon this year. This is hard -- especially since two of my favorite writers, Ellen Klages and Geoff Ryman, are the guests of honor -- but seems prudent.
Today, though, I started planning my trip back East in June for the Narrative Medicine Workshop offered at Columbia. The med school is underwriting the trip (amazing in these days of financial crisis), and while I'm back there, I'm going to visit family in Philly and then head up to Amherst to visit my cousin Val and my friend Deirdre. I'm really looking forward to this, and since I've now booked my flights (flying into Philly and out of Boston), it feels like it's really going to happen. But when I told Dad about it, he said, "You're going away for two and a half weeks?"
Gary pointed out later that I shouldn't have told him about it so soon. But the way things have been going, he'll forget again soon enough.
Sunday, February 01, 2009
Well, I really did a number on my back. This morning I woke up at about five with hideous back spasms whenever I tried to move. I screamed whenever they hit, which of course woke Gary up too. He brought me food, ubuprofen, and the muscle relaxant I took during my last back episode (luckily, I had some left; they expire this month, but I'm taking them anyway).
It was several hours before I could move without significant pain. I managed to roll over and sit up so I could drink coffee; then I crawled on my hands and knees, literally, to the bathroom ("She's out of the gate!" Gary said), and then I managed to hobble a little using a hiking staff as a cane.
Now I'm propped up in bed with my briefcase on the floor next to me and Harley lying at my feet. Gary's out hiking, but I told him to keep his cellphone on in case I need to call him.
Dad's new phone is working, so I've spoken to him a number of times today. He was up at 6:30 and went down for breakfast; he liked the food but wasn't thrilled with the company. I just called to remind him that it's time for lunch. He said, "There's nothing I can do about that unless they come get me," and I said, "But Dad, you can push your button so they'll come see what you need." He'd forgotten about that.
I told him I didn't think I'd be able to drive today to get over there. Perfect timing, eh? My back went out only when my body knew that Dad would be all right without me.
Amazing things, bodies!