Saturday, January 31, 2009
It's been a long day, but -- with a lot of help from our friends -- the move went well. We got Dad's essentials moved into the new place and set up; the new apartment already looks better than the old one ever did, as far as I'm concerned.
Fran left first thing this morning; she was out of there at 9:15, even though her flight wasn't until 5 PM. I think Dad was sad about that, but it made things easier on the rest of us to have one less body in the small apartment.
The new digs are very classy. Dad has a big window, facing east, with lots of sun. He can see mountains during the day (also the playground of the preschool next door) and city lights at night. I think he'll enjoy it.
By the time we got him in there, though, at about 4:00, he was exhausted. Dinner's served from 4:30 to 6:00, but he said he didn't want to eat because he was too tired. Then he started kvetching about having to keep enforced mealtimes instead of eating when he wants to. "They should serve dinner until 8:00!"
"Dad," I said, "you used to eat late, but these days, you're in bed by 8:00. You've been eating dinner at five or six, so this should work."
He kept grumbling. He didn't want to go downstairs. I cajoled him into an Ensure, but then couldn't find any: it had evidently been left behind. Thank goodness we have all of February to get stuff out of the old apartment!
Dad asked plaintively why the staff couldn't bring him dinner in his room. "They'll do that if you're sick," I said, "but if you're healthy, there's an extra charge." Gary pointed out that there was probably Ensure downstairs, so I went down to do some scouting.
The sales director we've been dealing with the whole time was there today, so I stopped in to see her. "Trouble in River City," I said. "My father's rebelling at the meal times." (I'd warned her beforehand that he hates any kind of regimentation.) "I tried to get him to go downstairs, but --"
"Tonight we'll bring his dinner up," she said. "That's no problem. It's been a long day. And you and your husband must be starving: you've been moving all day! Are you hungry? Can we bring you something? We'll bring you dinner, too."
I thanked her profusely and we stopped by the dining room, where I ordered meals for the three of us. Then I went back up with the good news; it turned out that Gary had talked Dad into going down to the dining room, but of course Dad preferred not to. But now he was cranky because he wanted wine, and we'd left that behind in the apartment, too. Could he get wine with dinner? I said that I thought it was only served downstairs, but we could ask. (We're all moderately amazed that an assisted-living place serves alcohol. This certainly makes Dad happy, although his doctors may be less than thrilled.)
A few minutes later, one of the caregivers knocked and came in with three dinner trays. "I didn't know what you wanted to drink," she told me. I explained that my father and husband wanted wine and that I wanted water: was that possible? She said she'd ask.
We ate our dinners: pork chops for them and steak for me, with rice pilaf, cauliflower, and a very pleasant rice pudding for dessert. It was tasty and nicely prepared, certainly the best institutional food I've had.
Just as we were starting on the dessert, there was another knock on the door, and the sales director walked in carrying a tray with two big glasses of red wine -- pretty good wine, too, from Dad and Gary's reports -- and ice water for me. She complimented us on how much furniture we'd gotten into the room and how good it was looking already. (One advantage of this place is that Dad can leave his scooter out in the hall and even has a place to plug it in to recharge it, which leaves much more space in his actual apartment.)
I helped Dad find pajamas, and we moved some furniture to his specifications, and then we left him to get ready for bed, which he said he could do on his own. The facility gives each resident a call-button pendant, so he can get help if he needs it if he'll agree to wear and use the thing: he was rebelling against that, too. He told me he feels "put upon." I don't blame him, but I do hope he'll be happy in his new home if can bring himself to accept it. He thanked us for eating dinner with him. "I hate to eat alone." We reminded him that this is the point of eating in the dining room, where he'll be able to meet people.
I think this place is terrific; I'd happily live there myself, if I could ever afford it! But we'll see how Dad does. I hope he'll wake up tomorrow with more energy, happy to see the sunshine through his window, and that he'll meet some interesting people at breakfast.
In any case, Gary and I are very impressed. "They're giving us our money's worth," Gary said, and given the cost, that's saying something.
Heartfelt thanks to Sharon, Rob, Marin, Judy and JP for all their packing, carrying, unpacking, and arranging! We couldn't have done it without you!
The only downside to the day is that -- even though Sharon nagged me to take care of my back and not to do too much -- I wound up doing something seriously unpleasant to my back, and can't straighten up fully even after taking two ibuprofen. So we'll see if I'm able to move tomorrow morning. If I can't, at least I won't have to worry about Dad.
Thursday, January 29, 2009
Today Gary and I moved some of Fran's stuff into the storage unit her movers will be packing up, and then I took Dad to the VA Eye Clinic. Dad had a little meltdown about how he feels "put upon" because Gary and I haven't been spending enough time helping him pack and unpack. He pointed out that when we moved into our new house twelve years ago, he came out to help and spent his whole time helping us pack and unpack.
I pointed out that he'd come to Reno on that occasion specifically for that purpose, but that Gary and I have lives here that we need to balance with what we do for Dad. I also said, "Dad, we've been spending a lot of time helping you." And I reminded him that we only learned about this latest move two days ago, and that I'd gotten his financial-qualification paperwork delivered and had rounded up friends to help on Saturday and will be taking him over there to sign the lease tomorrow.
As the conversation progressed (over several phone calls later in the afternoon), it turns out that his main complaint is that he wants to see more of Gary. I pointed out to Dad that he really only moved into his current apartment on December 19, which is the same day Gary's own father died, and that therefore we need to give Gary some space for grieving, and Dad immediately apologized.
Meanwhile, Fran had a little meltdown too.
Emotions are running high. Dad's feeling abandoned, lonely and needy; Gary and I are frazzled to the core, and heaven only knows what Fran's going through. Dad's upset about the financial drain that assisted living will be for all of us (Gary and I aren't thrilled about that, either, especially considering the state budget crisis, but we still think the move is the best option for everybody).
Gary's agreed to go with me and Dad tomorrow to sign the lease, even though it's very early for him. He doesn't want me to have to wrestle the wheelchair into the car, since my back's been complaining whenever I try that maneuver.
Tomorrow night, Dad wants to have a farewell dinner -- takeout Chinese, which he'll pay for -- for Fran at our house. I predict that this will be a distinctly odd occasion.
But I got through the day. I wrote in my journal when I got up, and swam in the afternoon, and used a meditation technique I tried to teach Dad, of closing your eyes and imagining yourself someplace where you've been really happy. I've been drawing heavily on my memories of beaches in San Francisco, Hawai'i and Long Island! And since the weather was gorgeous here today, I made a point of enjoying the sunshine.
Mom's still in the hospital, at least until Friday, when she may be sent to a nursing home. I spoke to her on the phone today and she sounded more herself than she has in ages. I don't know how long that will last, but it was sure nice.
I've vented to several people today about Dad's meltdown. "He thinks we aren't taking good enough care of him, and we feel like we're doing nothing but!" Everyone nodded and said, "Yup. That's what happens with old people." So at least I know this isn't unusual or unexpected.
And now I'm going to a friend's house to knit. Yay!
Wednesday, January 28, 2009
Yesterday, Dad's physical therapist told me he isn't safe to live by himself, so in a flurry of paperwork I arranged for him to move into the assisted-living place (at least with basic stuff like a bed and clothing; we can move the rest more slowly, since we're keeping his old place through February) on Saturday evening after Fran leaves. I'm rounding up friends -- and hoping that one has a truck! -- for this task.
Also yesterday, my sister told me that she and her husband had decided to give Mom one more go at rehabilitation before going the hospice route. But this morning, Mom's getting more medical attention at the hospital. My sister had noticed that Mom was grimacing in pain and talked the hospital into doing back x-rays: Mom has three new compression fractures. A nurse sat down with Liz and suggested that Mom's dizziness and fall might have been from a stroke, so she called in a neurologist, who's evidently, in my sister's words, "very alarmed" about Mom's status and is ordering all kinds of tests.
The neurologist is worried because Mom clearly sees Liz but doesn't respond, instead closing her eyes, and also because she has "marked bilaterial" something-or-other, a technical phrase my sister couldn't remember but that indicates very abnormal reflexes.
Poor Mom, having to go through a bunch of new tests!
Tuesday, January 27, 2009
Last night I spoke to my sister, who said that she'd gotten a call from my uncle (Mom's brother). When he called Mom, she told him she'd be leaving the hospital today, and he wondered if she was going to a nursing home.
I called this morning. The aide held the phone up to Mom's ear so I could talk to her, and I could hear her breathing, but she didn't respond to my repeated, "I love you." I trust that she heard me, though. Then the aide gave the phone to Mom's nurse, who confirmed that there are no plans to transfer her anywhere.
I wonder now, as I did last night, if she was really telling her brother that she's going to die today.
In the meantime, hospice will be coming in for an assessment today or tomorrow and will talk to my sister, who'll talk to me. Somewhere in there, I hope to get an indication of when I should fly back. For a number of reasons, I'd like to be able to wait until next week, but that may not be possible.
Meanwhile, I need to bring Fran boxes and help her get ready to leave on Saturday (when I may need to drive her to the airport, although she could take a cab if she had to).
And Dad now says that he hasn't made any definite decision about assisted living, although I thought he had. I'm going to try to connect with his home healthcare team in the next day or two to see if he can stay by himself for any length of time, especially if I'm in Philly, or would have to go to a nursing home until we could get him into assisted living.
This is a crazy time, but at the moment, I'm at peace. I've gone through many other emotions, and will no doubt experience them again, but it's good to know that peace is possible! This morning when I woke up I felt buoyed, as if the prayers of everyone who's thinking about us were bright balloons holding me up. And feeding the cats this morning, I remembered bringing Harley home from the shelter as a tiny, indignant kitten. Mom was visiting and had come with me -- although she'd waited in the car, because shelters make her too sad -- and she held the carrier on her lap, with her hand inside to comfort him, the whole way home.
It helps me now to picture her being comforted by the hand of God as she makes her own journey. The nurse told me she's "still ornery," so maybe she's as indignant as Harley was. But he found a loving new home, and I have to believe that she will, too.
The sun's back out today after several cloudy, rainy days. That helps. I keep thinking about that condolence card I've seen, the one about how when the candle's blown out, it doesn't mean that darkness has won: it means that the sun is rising.
I'm sure I'll have plenty of times of raging at these cliches (which seem a bit pat to me even now, when they're working) but one takes the comfort one can when one can.
Oh, and I've decided to try volunteering at the hospital on Saturday mornings, although I'm not a morning person, and am scheduled to go back on 2/21.
Thanks so much to everyone who's left comments.
Monday, January 26, 2009
My sister just called. Mom's been pretty out of it for the last two days -- sleeping curled in a fetal position in her hospital bed, with an aide assigned to sit next to her and make sure she doesn't throw her legs over the edge of the bed -- and has managed only occasional coherent phrases to me and my sister. Today Liz spoke to Mom's doctor, who's going to call in a hospice consult.
Thank goodness. If we're looking at the inevitable, let it happen at home, in as much comfort as possible.
Today I'm wearing a bracelet she gave me -- the last gift she picked out for me herself, instead of sending a check -- and I've been looking at the things in my office she made or gave me. I realize that I'm already saying good-bye, although I hope that's premature. My gut tells me it's not, but my gut's been wrong about these things before.
Well, we'll see what hospice says.
Sunday, January 25, 2009
The other day I was flipping through a recent New Yorker and came across a quarter-page ad for the new MS in Narrative Medicine at Columbia. Pretty cool!
In other NM news, I was recently given, as compensation for my work with the Literature & Medicine program, a nice budget for new books. I've had fun unpacking them in my office this past week: physican/patient memoirs, novels and poetry collections about medicine, medical history, texts about medical anthropology. I now have the beginning of a solid medical-humanities library, and I can't wait to read all this stuff!
Yes, I know: I've been terrible about blogging. My friend Sharon actually called me the other day because she was concerned at not having seen a post in a while. I've been here; I've just been very busy!
So here are the latest updates:
* My mother's back in the hospital -- initially with a UTI, although now she has some cardiac stuff going on too -- and doesn't sound well at all. I called her today to congratulate her on forty-five years of sobriety, but she didn't have the energy to talk.
* Fran's indeed leaving on Saturday.
* My father told me not half an hour ago that although it "hurts his heart," he's decided that assisted living is the only way to go. So I'll call the director of the place near us tomorrow and get that process started. Luckily, friends have offered to help him move again. I have no idea how we're going to coordinate all this, but we'll figure out something.
* I miss my hospital volunteering so much that I've been dreaming about it, so I'm going to try to go back if there's an ER shift open on Saturday. I have to be free on weekdays to take Dad to appointments. I don't know if I can handle volunteering on top of everything else right now -- I'm not sure if I have enough to give at the moment, although maybe my recent experiences will translate into deeper insights and compassion -- but I really want to try (with God's help, as we Episcopalians say).
* Yesterday I had the massage given to me by my friend at church (and it was ninety minutes, not sixty!). It was glorious! What a wonderful break!
* Speaking of church, we had our parish meeting today, and I was elected one of our delegates to diocesan convention in October. It's up at Lake Tahoe this year, which should be very pretty: I hope I can go (if not, there are a number of alternates). I couldn't go this past year because it was the weekend after Dad and Fran got here.
* I'm -- already -- behind on work for school, so I'll cut this short to attend to that.
Tuesday, January 20, 2009
Check out the interior-decoration scheme in the Reno VA's Prosthetics/OT/PT waiting room. I'm trying to decide if Martha Stewart would be delighted or appalled.
I took Dad there today so he could get his new walker, which has a handy holder for an oxygen tank. Our latest problem, though, is that his eyesight's so bad that he can't read the gauge on the oxygen tank -- even with his various nifty magnifying equipment -- which means that he can't tell if he's turned the valve enough to release O2, or how much is left, which effectively means that somebody else has to be with him whenever he ventures out of his apartment, even if he takes the handicapped bus (which may become more difficult anyway, since one of the responses being proposed to the state budget crisis is to raise the fare on that bus dramatically).
Well, okay, but surely he can't be the only person on oxygen who also has bad eyes, right? Somebody must already have addressed this problem, right?
I called his oxygen company, who called their main distributor, who'd never heard of oxygen regulators for the visually impaired. Neither had the folks at Stanford, the folks at the Reno VA, or the people I spoke to at the state agency that handles services for the blind and visually impaired. Everyone I talked to said, "Wow! That's a great idea!" as if I'm the first person to suggest such a thing, which I can't quite believe.
So: if any of you know of any way for somebody with really low vision to make sense of an oxygen regulator, please let me know.
And if you're handy with equipment and have a creative streak and want to make, like, a zillion bucks -- because there has to be a market for this thing -- invent a regulator for visually impaired people. I won't even ask for a cut: just send me a free prototype.
Thanks. And pass it on. Seriously. If you have inventor friends, or friends who are disability activists, or whatever, please let them know that there's a need for this kind of device.
Sunday, January 18, 2009
My latest Bodily Blessings column, Blue Butterfly, is up at Hope and Healing. This is one of my favorite pieces -- and most poignant hospital stories -- so I hope you'll take the time to read it.
We got back home last night, after a fairly harrowing trip across the mountains in the dark -- with good weather, luckily -- after delays in oxygen acquisition made us late in starting out. Dad was very confused last night (although, as my sister said, anyone would be after what he's gone through), but felt much better this morning. He was a little confused again tonight, though. Not sure if that's sundowning, or what.
In any case, the procedure went well from a technical standpoint. The doctors were very happy, and certainly Dad's peppiness today bears out what they've said about the benefits of the valvuloplasty. We don't know how long those will last, of course, but at least theoretically, he can have it done again. In the meantime, we're scheduled for a follow-up visit to Stanford in mid-February.
It's still far from clear how well he'll be able to manage on his own. For instance, he has appointments at the VA this Thursday, and ideally could take the Access bus, but I have to teach him how to switch oxygen tanks, and given his terrible vision, I'm not at all sure he'll be able to read the dials. This is worrisome, to put it mildly.
I'm astonished by how difficult it is to get oxygen. The company that brought the concentrator to our hotel room wouldn't let us swap our empty tanks (from another company) for their full ones. We couldn't get new tanks, or get our old ones refilled, at the hospital. The caseworker, who clearly had never dealt with this situation before -- "I'm making this up as I go along," she kept telling me -- found a Silicon Valley company that also has an office in Reno, and they brought us two tanks which I'll return to their Reno location tomorrow or Tuesday. Meanwhile, I'm trying to arrange to get a portable concentrator for the February trip, although those only run three hours on batteries, so I'll have to figure out how to plug the thing into my car (which doesn't appear to have a cigarette lighter). At least that way, though, we won't have to switch tanks.
I've come to loathe oxygen tanks.
Also, although we like the people connected with Dad's study very much, we were in other respects decidedly underwhelmed by Stanford, which has to be one of the least organized places I've ever seen. On Friday, we were sent to three different waiting rooms, dragging Dad's personal wheelchair along with us, to wait for his transfer to a room after his procedure. First we were told he'd be going back to his old room. Then the nurses on his old unit sent us to another unit (which, it turns out, doesn't exist; since they work in the same building, you'd think they'd know that). Then we were given the correct version of the new unit, and waited there for an hour or two before finally being told that no, Dad was going back to his old room after all. So we trooped up there, only to discover that no, he was actually going to the unit where we'd just been waiting.
During this saga, we worked on our hospital-as-airport analogy. Aside from the driveway with drop-offs and pick-ups, there are lots of other similarities: the tile-and-glass decorating scheme, the fact that everything inside is overpriced, the fact that you have to schlep any valuable belongings of the patient ("Please do not leave luggage unattended"), the fact that you wait in small, crowded waiting rooms, much like airport gate areas, and periodically have to haul everything somewhere else ("Attention passengers on Flight Dad: your gate area has changed. Please collect your belongings and proceed to Gate WTF"), and, in the case of Stanford -- which evidently hasn't heard that the latest rage at hospitals is private rooms -- the fact that the rooms feel about as crowded as your average airplane cabin.
Also, the volunteer working the surgery waiting room came over as we were wolfing down sandwiches (we were hungry, but didn't want to miss news by going somewhere else) and told us that we weren't allowed to eat there. My mouth was full, so I just looked at her. It must have been quite a look, because she backed right off and said, "Never mind. Go ahead and finish."
Also, only once during our many hours at the hospital did I step into a restroom that was clean, rather than strewn with used paper towels.
And then there was the fact that Dad's nurses, although very pleasant, seemed clueless about why he was there. His nurse in the first unit kept talking about his new valve, until I said, "He didn't get a new valve. He's here for valvuloplasty." (Way to rub in the fact that he's in the control group, lady!) The nurse discharging him from the second unit kept talking about his stent and handing him stent instructions, until I said, "He didn't get a stent. He had valvuloplasty," at which point she snatched back the stent info and said brightly, "Oh, that's right! The guy in the other bed was the one who got a stent!"
None of this inspired confidence. I've gotten better service at all of our Reno hospitals, even though they aren't world-renowned academic facilities. But, as I say, the doctors and nurse connected to the study were excellent, very helpful and friendly and hyper-competent. I guess that's the most important thing. I sure hope, though, that the benefits of the valvuloplasty last a long time, because none of us want to go through that experience again anytime soon.
Thursday, January 15, 2009
We had a very smooth trip, for a wonder: hardly any traffic -- except waiting to cross the Bay Bridge, where the woman ahead of us paid our toll! -- and only two oxygen-tank changes. We made the 253 miles in 4.5 hours, which isn't bad at all, and Dad enjoyed the scenery through the mountains.
Stanford University Medical Center is an experience. First of all, the place is huge, and very busy, with a chaotic pick-up/drop-off area in front of the main entrance. Gary said it reminded him of an airport.
Secondly, there's a weird pseudo-resort feel. The grounds are gorgeous and there's beautiful artwork inside -- I expect no less of hospitals these days -- but there's also jarring verbiage: patients referred to as "guests," a booklet of "guest services," a "cancer concierge." The place is being marketed as an upscale spa, complete with a full line of logo items in the gift shop. You can buy Stanford University Medical Center t-shirts, sweatshirts, pens, messenger bags, backpacks, toilet kits, leather portfolios, and keychains. I half expected to see a t-shirt that said, "My loved one went to Stanford University Medical Center for last-ditch chemotherapy, and all I got was this lousy t-shirt."
The resort image fades the second you see a patient, bald and pushing an IV pole, wandering along the hallways, looking at the artwork. I'm really glad the patients have gorgeous hallways to wander, but I did find the gift shop a bit . . . distasteful? Although I joked to Gary and Dad that if Dad's procedure goes well tomorrow, I'll buy a t-shirt to commemorate the event.
On a more somber note, the cardiology fellow who explained the procedure to Dad says that the longest he's seen the benefits last in anyone is six months. (This is the control group, remember, not the experimental one.) Ugh. But hey, six good months -- or two months or three months -- is a good thing, especially when you're eighty-six.
Elsewhere on the kvetch list, Dad was very annoyed by how short his oxygen tubing was (they were about to fix that when Gary and I left). I was also quite shocked, when I went into a women's room on the main floor, to discover a woman in a wheelchair trapped on the other side of the door into the corridor. The doorknob was round; she has spastic hands, and couldn't turn it. I mean, honestly! You'd expect a world-class teaching hospital to fix really basic accessibility issues like that: all they have to do is put one of those lever handles on the door. But I complained about it, so maybe they will.
Oh, and I got university e-mail with a letter from the governer attached, explaining that because of the state budget crisis, he's recommending a 6% salary cut for all state employees. This makes sense, and it's a lot better than laying people off, but as I've said before, we really need a state income tax (which no politician will want, or be able, to push through). Gary and I will be okay; I'm not sure how this will affect the assisted-living computations, but we'll figure that out when we have a better sense of what's happening when.
So today, we drove 250 miles; then Gary and I checked Dad into the hospital, visited a little bit, checked into our hotel, napped (me) and walked (him), went to dinner at a pretty good fish place, visited with Dad some more, and then left, exhausted. None of us got much sleep last night, and I didn't feel very rested even after my nap. We're all going to conk out tonight!
Wednesday, January 14, 2009
So my big news today is that I finally decided to stop stuffing myself into uncomfortably tight jeans, and bought three pairs of Size 12 to accomodate my expanding waistline. They're all a little big, but they'll shrink, and they're comfortable.
In more trivial matters, I got my syllabi done and photocopied for next week (although I still have some prep to do on the road), swam, called the VA to ask for the application materials for the assisted-living-assistance program, and dealt with a seemingly endless stream of phone calls about scheduling, billing, and oxygen.
I have to say that for a world-class medical center, Stanford seems to be fairly chaotic. The scheduling and billing people are all convinced that Dad will be an outpatient, and no matter how many times I tell them, "No, he's being admitted tomorrow afternoon," they remain skeptical. So I keep calling the unfailingly competent and cheerful study coordinator -- who must be getting really sick of hearing from me -- to try to get things straightened out.
The oxygen situation, meanwhile, is preposterous. Dad's Reno oxygen company had to call their parent company in Florida, who had to call an outside company in California to get us a concentrator for the hotel room (we shouldn't need it, but if we do, we'll have to have it) and tanks for going home. But get this: the empty tanks have to be picked up in Palo Alto, as well as dropped off. When I explained that their entire purpose was to travel to Reno with us -- since we can't carry enough tanks for both legs of the trip, in addition to a wheelchair, three people, and luggage -- the woman said, "Oh well then, that won't work." So they're still bringing us the concentrator, but I'm going to have to get tanks from the Palo Alto VA.
How can it be this difficult to make arrangements for an elderly man to be able to breathe? When I kvetched about this to the study coordinator, she said, "You're lucky he doesn't need water." Yeah, really.
We have to be on the road at seven tomorrow, so I'm going to sign off now and finish packing so we can get up at 5:00 and get to Dad's by 6:30. Oy!
Oh, I got e-mail from the assisted-living place. Outside caregivers are fine, as long as they're licensed. Thank heavens for small mercies!
Tuesday, January 13, 2009
I took Dad to visit the upscale assisted-living place today. He was impressed by the facilities, but the financial aspects make both of us nervous: even a little extra care over the basic package (for instance, help showering once a week) costs an extra $255 a month, and that amount goes up steeply as the need for services increases. I asked if we could hire someone to come in from outside to help Dad shower -- which would be less expensive -- and they're going to get back to me on that.
We haven't gone to see the group home yet, and probably won't be able to do that until next week. But in the meantime, Fran apparently hasn't been able to arrange a place to live in Chicago and is waffling about leaving (although she's paid for a plane ticket), so we may have a bit more time to get things straightened out.
On the oxygen front, I conferred with three oxygen techs, all of whom said, "If you wrap the tanks in blankets and lie them down in the trunk, you'll be fine." The important thing's to keep them from crashing around, but that shouldn't be a problem, especially since the folding wheelchair, and as much of our luggage as will fit, will also be in the trunk. One guy told me, "You'd need two tons of pressure on the top of the oxygen tank for anything bad to happen." Obviously, the tanks would be a liability in an accident, but then any accident would be a liability on its own.
And as Terri pointed out in her comment on yesterday's post, people drive around with oxygen tanks all the time. How many people in the world are on oxygen? And how often do any of us hear of catastrophic accidents? So I've decided to be careful, but not to worry any more than I usually worry on the road.
It looks like the weather will be good for the trip out. We'll see what happens when we need to come back!
Monday, January 12, 2009
This week's a mix of getting ready for the trip to Palo Alto and getting ready for classes to start on the 21st. Balancing those two is proving a bit tricky. I intended to spend today working mostly on school stuff, but instead, I spent all morning on the phone trying to score a portable concentrator for the trip.
No can do. These babies cost $4,000, and companies that rent them out do so only to existing patients. Dad's oxygen company can get one, but that requires 2-3 weeks of lead time, since the equipment has to be shipped from Florida.
However, a very nice man in the Prosthetics Department of the VA has arranged for us to be able to get new tanks in Palo Alto, as well as a small concentrator that will plug into an outlet -- this in case Dad is discharged from the hospital but we're prevented from traveling by weather (always possible this time of year) and have to spend a night or two in a hotel. For some reason, this is all being coordinated through Florida too, and not Reno, so I have to call someone in Florida tomorrow. The VA guy also said that in case of disaster -- car trouble in the mountains, say -- I should get oxygen wherever I can and get the info to him so the VA can pay for it.
He volunteered, though, that he doesn't like driving with oxygen tanks in his own car. "They're dangerous. If you're in an accident, they're like having ballistic missiles in your car."
He told me that the safest place to keep them is in the trunk, and also pointed out that Dad's O2 requirements will probably decrease once we get to sea level, which will make the tanks last longer. So: Dad will be in the front seat, his current tank will be in the back seat with Gary monitoring it, and the rest will be in the trunk with the wheelchair and various luggage (we'll stop when we need to change tanks, obviously). I ordered an oximeter from Amazon and paid the exorbitant fee for overnight shipping, so we should have that tomorrow. It will be very helpful to be able to monitor Dad's O2 levels during the trip.
Although the weather's expected to be clear, we plan to have chains, blankets, food and water with us, as well as more than enough cash to pay chain monkeys. In other words, we're going to be better prepared and equipped than that hapless Palo Alto van driver.
Dad's hospital check-in time is noon, which means we'll have to leave Dad's house at 7:00. None of us are morning people, so this is going to be pretty miserable, but we'll do it. I'm also still not sure where we're staying; I asked the study coordinator to try to get me and Gary into the Fisher House attached to the VA, but given the short lead time, we may need to spring for a hotel. I can't call the lady in Florida until I know where we'll be, since she needs that info to deliver the concentrator. Details, details!
I also finally heard from the medical social worker today; he said that Medicaid waivers for assisted living can be hard to get, but that the VA has a program that will help pay for upscale places. This involves lots of red tape and a longish wait, but we can manage on our own until it kicks in. Dad and I are meeting with the social worker tomorrow morning, and then I'll take him to see the upscale place (or "the mansion," as he's now calling it).
In the middle of everything else, I am indeed chipping away at class prep, but it's not going as quickly as I'd like. I can bring my laptop to Palo Alto if I don't have everything done before we leave, as now seems likely.
And I'm going to drive werry, werry carefully, given both my precious human cargo and the missiles in the trunk.
Sunday, January 11, 2009
I had another mini-meltdown last night, sobbing on Gary's shoulder again -- he's been very patient with this pattern! -- and woke up at 5 a.m. feeling puffy and leaden. On my way to church, I glanced in a mirror and saw that I was doing a credible imitation of a zombie, with big dark circles under my glazed eyes.
At church, one priest said, "I think you need a hug," and gave me one. A friend asked, "Are you all right?" and when I said I wasn't, told me to call her whenever I need to vent. ("I'll just listen; if you don't want me to say anything, tell me to shut up.") Someone else, who's on our prayer chain and has been getting updates on the family situation, listened very empathetically during coffee hour.
I know these three people reasonably well, and consider the first two good friends; the third knows a lot from the prayer chain. I was very surprised and moved, though, by the reaction from a member of our vestry. She followed me from my old church, and we've always been friendly, but we've never been particularly close. After the service, though, she came up to me, gave me a hug, and said, "I want to do something for you. I want to help. May I arrange for you to receive a massage?"
I didn't even pretend to demur. "Oh, yes please," I told her. "Thank you very much!"
Go ahead. Twist my arm!
At Gary's urging, I told Dad that I had to stay home and concentrate on work today (although I'll be dropping some toiletries at his house after dinner). I slept most of the afternoon, but awoke feeling refreshed, and have actually, for a wonder, gotten some work done. There's a lot more to do, but it's a start!
Saturday, January 10, 2009
Today wasn't one of my better days, although it started off well. I swam for an hour, which made me feel extremely virtuous. Back home, I called Dad to apologize for the fact that we hadn't gotten around to having him and Fran over for dinner: he hasn't been inside our house since he moved here! He said, "Yeah, I'd noticed that," so I decided to have him and Fran over tonight, if I could get Gary -- the chef, after all! -- to agree.
I left Gary a note to call me (he was at an opera simulcast, from which he planned to walk home, and I knew he wouldn't have his cellphone on, if he even had it with him) and headed off to run errands. That's when things started heading south. I couldn't find the replacement cartridge for Dad's razor (it may be obsolete), and I couldn't check my course book orders because the UNR bookstore isn't open on weekends during intersession (duh!), and when I heard from Gary, he sounded exasperated about the short notice. We had no food in the house, and we still didn't have a wheelchair ramp in the garage. I told him that I'd go shopping and that Dad had sworn he could handle the two steps into the house (these are the ones where he fell October 19, so they make us nervous).
Then I called Dad to find out what he wanted. Fish and baked potatoes. We don't usually cook fish -- we both like it, but it's just not on our regular meal roster -- but I headed to the fish counter of our local supermarket and called Dad to describe the choices (I love salmon, but I skipped that, since Gary isn't fond of it). He chose mahi mahi, and I asked what kind of sauce we should have with it. Dad didn't know; he asked Fran and she wasn't sure; the fish clerk was talking in my other ear giving me suggestions and pushing bottles and packets of premade sauce at me. One of them was a lemon dill butter sauce, so I called Gary to see if he could make that himself, since he's a cooking purist and curls his lip at prepared stuff. He said he could, but I'd have to get lemons and fresh dill, and oh, could I pick up some coffee and bread?
I couldn't find fresh dill, so I bought packaged dill. I lugged everything home. Gary was okay with the packaged dill, but pointed out in annoyance both that I'd bought ground coffee, not beans (as purists, we grind our own coffee), and that I hadn't bought enough mahi-mahi. I'd asked the clerk for a pound and three-quarters, but she'd misheard me and had only given me a pound. And we still didn't have a wheelchair ramp! "I can't do it by myself," Gary said crossly. We'd been planning to go to Home Depot for a piece of plywood, but even if he could walk there, he couldn't carry the wood home, and I'm the driver.
I said I'd go back to the supermarket for more fish and the right kind of coffee. On my way, I decided on the spur of the moment to go to Home Depot to buy ramp materials. I thought I remembered how wide the doorway was. I bought a thick piece of plywood (one and 1/8 inch, which is what the lumber expert suggested), and some two-by-fours I thought we could cut down to support the ramp.
For a wonder, a Home Depot clerk managed to get an 8'x36" ramp, decorated with a red warning flag, loaded into the back of my little Ford Escort. I drove carefully home with my hazards on. Gary raised his eyebrows at the miscellaneous lumber, unloaded it, and told me that the ramp was too wide for the doorway (only 30 inches) and that if I'd just measured again before I left, I could have had it cut to the right size. What were we going to do with it now?
I'd call a friend who's a carpenter, I promised miserably. I wanted to crawl under a rock. Home Depot had taken so long that I hadn't had time to go to the supermarket for the extra fish and coffee, and I still hadn't picked up Dad's razor part, but it was now 5:00, and I just wanted to go get Dad and Fran and come back for dinner.
At Dad's apartment, I told him and Fran that I'd been screwing up all day, and he said, "Sit down, little daughter, and tell me all about it." So I did, and he and Fran told me funny stories about people they'd known who'd made stupid mistakes. I think it made him feel like a father again -- the one giving help, rather than the one receiving it -- so that was a good moment.
Then we got him loaded into the wheelchair and hooked up to an oxygen tank (I'd lugged four more down to the car, because I'm so paranoid about his running out of air), and we all trouped downstairs, and I got him and Fran into the car and wrestled the wheelchair into the trunk, and we drove home, where Gary had realized that instead of cutting the entire piece of wood down to thirty inches, he just had to cut off a corner so it would fit around the door. We had a wheelchair ramp!
We tested it in both directions first with me as a passenger, and that went fine, and it worked fine for Dad, too, although there's a bump at the beginning of the ramp -- the lip of the wood -- that we need to get flush with the floor if we can, since getting the wheelchair over the initial bump is difficult.
We had enough fish (and it was very good!), and long-suffering Gary allowed as how we can use ground coffee if we absolutely must. So dinner went well, and I felt at least somewhat forgiven.
After dinner, we made coffee -- from the remaining beans, natch -- and sat in the living room in front of the DVD fireplace. It was very peaceful and pleasant, although it didn't last long, because Dad got tired and wanted to go home. But we talked a little about music, and I discovered that Dad and I have very similar tastes; I knew we both loved folk music, but I wasn't aware that Williams' "Lark Ascending" is one of his favorite pieces of classical music, as it is mine, and that we share Brahms and Dvorak as favorite composers.
He also thanked me and Gary very movingly for all the support we've given him; he said it means more to him than we can possibly know. So after all my klutziness earlier on, the day was a keeper after all.
When Fran and I were in the kitchen, though, she told me that Dad's memory is getting worse. The other night he pulled the fire alarm in the apartment, thinking it was a light switch. Ouch. I have to talk to the home health people about this and see what they recommend. I sure hope he's not developing Alzheimer's, which I fear (for myself and others) far more than cancer or heart attack. But he seemed perfectly coherent and oriented when I was with him, or talking to him, today.
On Monday I have to start nagging his doctors and home oxygen company to get us a portable concentrator before we leave for Palo Alto, since that would make the trip much less nerve-wracking than having to load the car with tanks and stop to change them periodically. Gary and I are also looking into buying an oximeter so we can check his oxygen level during the trip (especially over the mountains).
With any luck, I'll be more competent at those tasks than I was at the simpler ones I attempted today, like buying coffee!
Friday, January 09, 2009
Today I spoke to the study coordinator in Palo Alto, who emphasized that many people are helped significantly by valvuloplasty -- although for varying amounts of time -- and that there's minimal recovery time; also, she said to tell Dad that if this buys him enough time, he could get the new valve after it's approved.
So he's scheduled for the procedure next Friday. We'll be driving down Thursday, and, with luck, driving back home sometime over the weekend. I don't start teaching until the following Wednesday, so there's a little wiggle room, although weather could throw a real wrench into the works. But we'll have to deal with that as it comes.
I felt more cheerful about the whole thing today, and so did Dad, who was delighted to learn that there's some chance -- however slim -- of getting the valve at some point.
My friend Sharon and I visited five assisted-living places today. (Sharon's been one of my rocks through all this: thank you, Sharon!) Three of them were quite grim, all dark with small yappy dogs. I don't know why these creatures correlate with lack of light, but there certainly seems to be a connection. One, in addition, stank of urine. Yuck.
However, two of the places were very nice. One's a private home with a maximum of eight residents and one current opening, where Dad could have his own room with a door leading out to a lovely patio. I was impressed by the questions the administrator there asked about his medical care and needs. The place was clean, bright, cheerful, and had no animals at all.
Upsides to this place: a homey, intimate environment, lots of personal attention, and they take Medicaid waivers (which I still have to research). Downsides: Dad would have to pay down his limited assets to become Medicaid eligible, and he'd have to get rid of almost all his own furniture. His room would be cheerful, but small.
The second place is one of those huge, fancy assisted-living facilities that look like swanky hotels, and where each resident has his or her own apartment (a studio, in Dad's case). There's transportation, an activities calendar, gorgeous grounds and amenities, a LifeLine included with the price, etc. This is the kind of place that I would have considered unaffordable, and that would be if we were paying the full price. Luckily, they have a low-income program.
Upsides: Dad could keep his own furniture and would have a lot of privacy, including his own bathroom and kitchenette (with a small microwave and fridge), although three meals a day, with a restaurant-style menu, are included in the price. Also, he could keep his assets.
Downsides: Somewhat less personal attention and extra fees with mounting medical needs. And they don't take Medicaid.
The price for both facilities would be $2,000/month. (Yeah, that's a lot, but at the swanky place, non-low-income folks pay a $4,000 registration fee, and their rent starts at $3,750/month.) For the first, Dad would pay out of his assets until Medicaid kicked in, however much it would kick in (again, I have to research this). For the second, he'd pay $1,500/month -- almost his entire Social Security check, although he does have some savings) -- and my sister and I would each kick in $250/month.
When Sharon and I went over to discuss the options with him, he was surprisingly open to the idea: willing to consider it, anyway, although he'd prefer to stay in his own place. It sounds like he's leaning towards Door #2, where he'd be able to keep a lot more of his own stuff. I told him that I'd be happy to live there, and I meant it. He's feeling guilty about the fact that Liz and I might have to help, but I told him -- and meant it again -- that it's easily worth $250/month to me to know that he's safe and well cared for. And my sister's fine with this plan.
So he and I are going to go look at both places sometime early next week. Sharon pointed out, gently, that choosing one of them now would be easier than having to go to one of them if something happened later.
Gary's balking at all this. Last night, when the only place I'd seen was one of the dark houses with a yappy dog, I'd decided that I'd support Dad's efforts to stay in the apartment as long as humanly possible: falling in a place where he was at least somewhat happy would be better than being protected in a place where he felt suffocated. But tonight, when I've seen nice assisted-living places, I have to confess that I'm leaning towards that option, partly because of the peace of mind it would bring me. Gary wants Dad to be able to stay in the apartment, though, if only so he won't be subjected to another move.
Ultimately, it's up to Dad.
We'll have to see what happens; the valvuloplasty could make a big difference. But in the meantime, I can breathe a little easier knowing that there are acceptable options out there!
Thursday, January 08, 2009
The doctor from Palo Alto called me this afternoon. Dad got into the study, but he was randomized to the control group. No new valve.
They are offering him valvuloplasty, and we'll probably take them up on that. The procedure could happen as soon as next Friday, which means I have to get all my class prep done by next Wednesday for classes beginning the following Wednesday. Yikes.
I'm also less than thrilled by having to make a lot of trips to Palo Alto (for the procedure, plus follow-ups at one, three, six, and twelve months) if he's not getting a new valve. But I'll do whatever I have to do. I just wish that the route there didn't take us over the mountains, which are dicey six months of the year.
In other news, I called assisted-living places today but didn't find many that take Medicaid (which, of course, Dad's not even on yet). Sharon and I are visiting three of the ones that do tomorrow afternoon. I also visited a group home that's literally a block from where Gary and I live; Dad's visiting nurse likes it, and the woman who runs it is very nice, but I think Dad would go bonkers there (it's a small, dark house with a small, yappy dog). Of course, maybe he'd go bonkers in any of them. I haven't seen the others yet, and proximity would be a definite plus.
Gary and I went to his place to tell him about Palo Alto in person. He looked like he'd been socked in the stomach (which is how I felt after the doctor called). Poor Dad! Everything's landing on him at once: Fran leaving, no hope of a new valve, the looming threat of assisted living. It's hard on me just thinking about all this; I can't imagine what it's like for him, in his already compromised state, to be experiencing it.
We're all feeling sad and discouraged today. I hope tomorrow's better.
Wednesday, January 07, 2009
Many thanks for all the supportive and helpful comments about yesterday's post (both the public and the private ones!). I'm still woefully behind on e-mail, and likely to remain that way for a while, but I don't want people to think I don't appreciate the reality checks and sanity boosters. You're all wonderful!
I'm in a better mood today, you'll be glad to know, altnough I put in almost a full workday dealing with Dad stuff. First, though, I got up early and swam, which is the best way to start the day, when I can manage it.
After I got out of the pool, I had new voicemail. Remember the e-mail I sent to Dad's cardiologist yesterday? Not only did he respond, but he left a message and gave me his cellphone number.
I'm sure I don't have to tell any of you how unusual that is, since doctors are very properly protective of their privacy. I was stunned. (And doctor, I promise I won't give it to anyone. Not even if they pay me. Not even under torture.)
Anyway, he had indeed written a script for Lasix, and said I could pick it up at the VA today. First, though, I stopped by Dad's apartment and became embroiled in an intense conversation between him and Fran. It was all respectful enough -- we were just trying to understand each other's point of view -- and I felt more compassionate towards her afterwards, although she's still leaving us in quite a predicament.
After eating lunch at Dad's apartment, I stopped by a Durable Medical Equipment place, where, lo and behold, I found the perfect wheelchair container for Dad's oxygen tanks: a long, thin backpack type thing, very lightweight and adjustable. It cost almost $100 with tax -- and that was with a 20% discount! -- but not having to drag the tank while I push the wheelchair will be worth it!
Very happy from that success, I went to the VA. In addition to picking up the Lasix -- and ordering some nose spray Dad requested, which they'll mail to us -- I stopped by Dad's primary-care area to try to get him an appointment with his PCP (he was supposed to go back there in three months, but the visiting nurse felt it should be sooner). The doctor was in with a patient, but his nurse took the message, and in the meantime I asked for a social worker. Only one was there today, but he had an opening in his schedule and could talk to me.
It turned out that he didn't know much about Medicaid and assisted care -- he said, "Thanks for asking these questions, because I need to learn about this stuff" -- but he did give me various Medicaid forms and the address of the local office (which is a block from our house!), and he also gave me a list of assisted-living places. Tomorrow I'll start calling and asking questions to see which of them would even take Dad. It feels good to have a place to start.
After leaving the social worker, I went to the eligibility office and handed in Dad's annual means test, which sailed through the computer with no problems at all. Then I set out to find the infamous Fee Basis office and present them with our bills.
After being bounced from office to office last week, I expected a real runaround. It turns out, though, that I'd never gotten near the Fee Basis office. I'd been in higher-profile, ground-floor administrative offices with excellent signage and lots of space. Fee Basis is on the second floor: two small, unmarked rooms at the end of a very long, dark hallway. It's well-hidden.
I believe it's well-hidden because the people inside view it as their duty to try to pay outside bills. The very nice guy I spoke to took the bills I handed him, listened to my precis of the situation, and said, "Well, I can't promise anything, but of course we'll try to adjudicate these." When I mentioned that we'd already paid a $909 ambulance bill, he clucked his tongue and said, "You should be reimbursed for that! We'll work on that!"
"I don't have the bill anymore," I told him.
"That's okay. Just give me the amount -- I have the dates of the hospitalization right here -- and I'll call REMSA [our local ambulance company] and see what we can do. Remember, I can't promise anything."
It's all good, though. If the VA can pay something, great. If they can't, Dad will pay and the costs will go towards the paying-down-towards-Medicaid-eligibility project. This way, at least we'll have tried everything, so Medicaid won't think we paid the bills ourselves to try to get there prematurely.
I made my way back to Dad's house. When I was in the hallway outside his apartment, my cell rang. It was Dad's primary-care doctor, calling to say that he'd gotten my note asking for an appointment, but really, wouldn't it be more appropriate for Dad to be followed by the cardiologist? I allowed as how it would, and he said he'd send the cardiologist a note.
In most cases, if one got such a call from a doctor (rather than the doctor's nurse), that would be the end of the conversaton. But this doctor went to tell me how much he enjoys talking to Dad and how fascinated he is by the Palo Alto study. He commiserated with our being on tenterhooks about that; I joked that we should have a beeper, the way people waiting for transplants do, and he said, "Yes, that's right!" And then he said, "Your father says you're a writer. Are you writing a book about all these adventures?"
"Well, I'm blogging about them."
He laughed. He told me about a patient of his who lived to be 100 and who was a survivor of the Bataan Death March, and who'd been working on his memoirs with a UNR professor. We agreed that if you can survive the Bataan Death March, you can survive anything. He said that he was sorry he'd only gotten to see me briefly the last time Dad was there, and that he hopes to get to talk to me more sometime.
Geez! How many doctors take the time to have conversations like this with their patients, let alone their patients' children?
Back in the apartment, Dad told me he'd gotten a call from the patient rep in Palo Alto, saying that they'd gotten my report about the Donner Ambulance Ride. They're investigating it and will discipline the driver.
That was fast! Is the VA always this responsive, or have we somehow gotten onto the "pay attention to these people" radar just by being willing to go to the patient rep in the first place? (I can imagine an internal memo going around the VA: "Attend to Alan Palwick's concerns, or his daughter will nag you to death."). But maybe I'm just being cynical, and they're always this nice.
Whatever the reason for all the attention, it's certainly lovely!
Oh, earlier in the day I'd gotten Dad to sign the consent forms Palo Alto FedExed us, just in case he gets into the study. I stopped by a FedEx office to mail them back (in the prepaid envelope provided) and then called the study coordinator to tell her I'd done so. She was very happy we'd turned them around so quickly.
Dad liked his new oxygen-tank holder, so we put it on the wheelchair and I took him for a spin in the courtyard, since it was warm and sunny out. I think he enjoyed being in fresh air, even if he was still breathing canned oxygen.
Oh, and some very good news: we learned that when Fran leaves, Dad won't have to pay her share of the rent, despite the lease. Also, if he goes into assisted living, we can keep the apartment for sixty days, with extensions available if necessary.
Fran and I got Dad to do his exercises today, too, and he got a little farther in the hallway with his walker than he did yesterday. Fran told us later that she'd seen a neighbor who said he was happy to see Dad out of the apartment.
So: good day, if full. Now I'm home having a quiet, restful evening while Gary's at an opera simulcast.
Tomorrow I'll be at Dad's in the afternoon for his OT appointment, but I hope to get assisted-living calls and schoolwork done tomorrow morning (and maybe a walk).
Tuesday, January 06, 2009
Dad saw both a physical therapist and an occupational therapist today, and I was there for both appointments. The physical therapist told me she thought we might be able to get him in good enough shape so that he won't need assisted living (this based largely on the fact that he managed to use his walker to get around a bit, including a short walk in the hallway outside: the Palo Alto folks had called earlier and were very interested in whether he could walk, so he was motivated). The occupational therapist originally agreed with that assessment, but then changed her mind when he had one of his infamous coughing fits: these go on for about half an hour and sound as if he's trying to hawk up an alligator, although I think they're more upsetting to onlookers than they are to him.
In any case, both therapists gave him exercises to do, and between the two of them, they're initiating many good steps: getting Dad a new walker with a holder for a big oxygen cannister, for instance, and evaluating furniture for his maximum comfort and safety (his preferred chair was too low). The call is out for a medical social worker to visit, and that person can tell us about getting a pocket talker and a LifeLine system, not to mention -- I hope -- clarifying details about assisted living. Dad will also be getting visits from a speech therapist and a home health aide who'll bathe him, and both therapists, plus the nurse, will be coming back this week.
Fran booked her plane ticket for January 31, even though we begged her to stay for an extra week or two so we'd have more time to get Dad settled; this means that we have three weeks to figure out what to do (barely time for Dad to get his strength back if he's able to), although one therapist advised us to hang onto the apartment, at least for a while, until we figure out what's what, even if he's not living there. This makes sense, if HUD regulations will permit it.
And, of course, Palo Alto's the wild card in this mix. We still don't know if he's in the study.
Anyway, after the two therapy appointments, I dashed to campus to get some errands done, and then dashed to the pool to swim. In the locker room, I discovered to my horror that my weight's at an all-time high, even though I've been exercising pretty regularly and have, as Gary's pointed out, been running around enough to burn off about 10,000 calories per day. I don't know if this is midlife metabolism change or what: my thyroid's been checked a number of times and has always been fine, but if the weight keeps ascending, I'll see my doctor.
Oh, and somewhere in there, I called Palo Alto to find out if Dad should be on Lasix, since he isn't at the moment and three nurses have queried this. Palo Alto said that yes, he should be, but his cardiologist here has to order them, so I shot off an e-mail to the cardiologist here.
After swimming, I went home and had a mini-meltdown in our kitchen, sobbing on Gary's shoulder. I'm angry at Fran, and I'm angry at people who tell me not to be angry at Fran, and I'm angry at the entire "shove them off onto someone else when they aren't fun, convenient or pretty anymore" attitude of our culture, and I'm feeling guilty because I haven't managed to get Dad out of the apartment more for social interaction, and I'm feeling guilty because I haven't spent more time with Gary during a really crappy time for him, and I'm feeling guilty and panicky because I'm so behind on school stuff.
Oh, yeah, and I'm furious at the Fashion Police.
Let me explain. Three times now -- in a team meeting at the VA, with the nurse yesterday and with one of the therapists today -- Concern Has Been Expressed that Dad likes to hang out in his pajamas all day, instead of getting into real clothing. Dad's response, when he's asked why he doesn't put on real clothing, is "Why should I?" As long as he isn't going outside, pajamas are fine (and when he does go outside, he gets dressed).
One therapist today, offering to take him out in the hall for a spin with his walker, said, "Oh, but you can't go out there in your pajamas."
"Why not?" asked Dad. "They're perfectly decent. If people can't deal with looking at me in my pajamas, that's their problem, not mine."
But oh, no no no! Not Getting Dressed is evidently a terrible moral failing, a sign of indolence, sloth, and various other deadly sins. The therapist actually said, condescendingly (I swear her nose was in the air), "Getting dressed is a state of health. Staying in your pajamas is a state of sickness."
"No," I told her. "For my father, staying in his pajamas is a state of normalcy."
I do the same thing. I don't get dressed until I have to leave the house, which often means after noon: until then, I lounge around in PJs and bathrobe, which, mysteriously enough, have never hampered my ability to write, read, grade, knit, feed the cats or myself, or perform other essential tasks.
I mean, honestly. My father has enough serious issues: why are his providers obsessed with what he wears? Don't they have more important things to worry about?
So, anyway, I vented to Gary, who patted my back and said soothing, sensible things, and then I felt better. We ate dinner, loaded a chair for Dad into the car, and dashed to Office Depot so I could buy one of those big desktop calendars, since Dad can only see huge things, and one of the therapists wants him to have a calendar so he can make sure all his home-health folks don't bump into each other. Then we went by the apartment and swapped out chairs. I gave him the calendar, along with a list of his daily exercises. I did his exercises with him. I figured out how to turn his answering machine on and tested it to make sure it works (it does). Then we came home, and I knit a little, and now I'm blogging.
I still have a gazillion e-mails to answer, and I've made very little progress on school stuff today (none, actually), but hey: I'm not sobbing on Gary's shoulder at the moment, so I'm better than I was a few hours ago.
Tomorrow, bills and means test and calendar in hand, I ride off on my loyal white steed, Fiona Ford, to do battle with the VAMC. Wish me luck!
Monday, January 05, 2009
I called Palo Alto this morning. The review board hasn't convened yet, which means that the soonest anything could happen with Dad is in a week or two, which means that I can't be there because I teach on Mondays and Wednesdays and the surgeries are always on Tuesday (this is if he even gets the surgery, of course). Also, we'd be responsible for transportation in both directions. So I'd drive him there over the weekend, try to get him into the hospital on Sunday (rather than their standard Monday), and then drive back to teach.
When I called Dad to tell him all this, it turned out that the home healthcare nurse was due to arrive in half an hour, so I raced into the shower, threw on clothes, and got over there so I could meet her. I like her a lot -- and she likes Dad -- and it turns out that she'll be ordering physical therapy, occupational therapy, a medical social worker, and bathing help. So many of my questions about how to get those services are now answered!
I walked her out so we could talk about Dad's care. She hadn't known that Fran's leaving. Dad's not safe to live alone, she said (no surprise), so if Fran indeed bails -- as she now seems dead-set on doing -- either Dad has to go into assisted living or the nurse will have to call in Adult Protective Services, who'll put him in a nursing home.
Obviously, we'll put him in assisted living. She recommended a nearby group home that she says is excellent and slightly less expensive than others: $1,800 a month, versus $3,000. Medicare doesn't cover this, and the VA probably won't either.
I'm hoping that Dad can pay some of this out of his Social Security, and that my sister and I can work out some way to divvy up the rest. Fran, when I ran all this by her and Dad afterwards (in a futile attempt to convince her to stay), suggested paying someone to live with Dad the way she's been doing. I'll have to explore whether that's feasible, and whether it would be more or less expensive than the assisted-living place.
Fran was trying to get Dad and me to feel sorry for her. It didn't work.
If he gets the new valve, maybe he'll feel so much better that none of this will be necessary. I can dream, can't I?
Sunday, January 04, 2009
Today is the second anniversary of the day we brought Baby Bali home from the shelter. Fittingly enough, a friend at church gave me some cat toys today: one of those fishing rods that dangle feathers, and a heart-shaped catnip pillow that reads, "Love Me, Lick Me, Bunnykick Me." The cats are very fond of the pillow and very adept at bunnykicking, as Figaro demonstrates in this video before Bali rudely interrupts him.
Saturday, January 03, 2009
Today I slept shockingly late, did a small amount of knitting, worked out on the elliptical for forty minutes, and went over to Dad's. He and Fran were having a rather tense discussion, not quite edging into a fight, about her departure (she thinks he should pay for her move back to Chicago, which he and I both find outrageous). I said some things that were honest but perhaps not terribly politic, although I tried to say them calmly; Fran stayed calm too -- she and I both have tempers, so I'm amazed things didn't get louder -- and for a wonder, we all got along for the next few hours. (My sister, by the way, was delighted when I reported my comments. "Good for you for confronting her!" Lots of good it will do.)
I reconciled Dad's meds -- replacing old Reno scripts with new Palo Alto ones (most of which are the same) -- and set up his med trays. I made a list of the meds, went to work to photocopy it, and put a copy on the fridge next to the advance directive.
My major accomplishment of the day, though, was The Dad Bag, a backpack containing an accordian file, which in turn contains manila folders with Dad's legal documents (copies of legal and medical power of attorneys, and of his anatomical-donation form), medical info (copies of the meds list), and financial records (his checkbook and register, since I've been writing his checks, along with VA eligibility documents, Social Security info, and the bills I'm going to try to persuade the VA to pay). I also have a folder for resource info: phone numbers people have given me and the little "Guide to Senior Care" pamphlet from the VA.
The accordian file also holds copies of my business card, which I've found handy to give to medical folk since it has all my phone numbers, post-it notes, a small stapler, some paper clips, and a pen. Elsewhere in the backpack are extra pens, a clipboard with a legal pad for to-do lists and notes, and power bars in case I get stuck with Dad in an ER in the middle of the night and get hungry.
The backpack has enough extra room for a knitting project and a water bottle. It's essentially a portable office/hospital survival kit, and will be easy to find and grab if I have to make a mad dash to an ER, or to Dad's apartment, in the middle of the night.
Getting this done was a huge relief, since documents had previously been scattered hither and yon. (I'm still not sure where the original of the general power of attorney is, but that's less important than the medical one, of which I do have the original, plus two copies.) If anyone can think of anything I should add, please let me know!
Now we have to go to PetSmart, and then I have to try to get some work done for my actual job. What a concept!
Friday, January 02, 2009
We had awful weather here today: high winds and rain mixed with snow. I was worried that this would complicate our lunch arrangements, and I was also concerned about Dad, who'd seemed very confused last night. When I spoke to him on the phone this morning, though, he seemed much more alert, so I was relieved.
When I got to the apartment, however, Fran announced that she's definitely leaving, and that if she can't get another Section 8 apartment, she'll live in a shelter/hostel. Our friend Katharine reported a later conversation which indicates that Fran expects to wait only a few months for another Section 8 apartment to open up: she still doesn't understand that she's bound to a year lease here, and can't get another Section 8 lease until this one's expired.
* begin rant *
Fran has a long history of bouncing back and forth between Chicago and wherever my Dad happens to be living, but in this case, it's really infuriating. Dad (who isn't exactly made of money, with Social Security income of less than $1,400/month) paid her plane fare and moving costs to Reno, has promised to pay any of her medical bills not covered by Medicaid, and has been her best friend for twenty years. The fact that she wants to abandon him because he's not "fun" anymore, and because she's uncomfortable with his physical condition, makes me crazy. Does she think this is a laugh riot for the rest of us? Plus, we're in effect her family, since she's estranged from her own.
Intellectually, I know that she's been under hideous stress, and that she's trying to escape back to an older, happier life that no longer exists, and that she's also desperately trying to avoid having to face both Dad's mortality and her own -- but since my father's the one being abandoned, my intellectual understanding only takes me so far.
Several friends to whom I've talked about this have made sympathetic noises and said, "Well, you know, you can't blame her." And that response makes me really crazy. I wouldn't blame her for thinking about running away -- I can't count the number of times each day I daydream about getting on a plane for Hawai'i -- but I will blame her if she actually leaves, just as I'd blame anyone who walked out on a household member who suddenly needed greater care: child or parent or pet.
Fran, to her credit, kept saying to my father, "I feel really guilty about this."
And my father, to his credit, kept saying (very, very gently), "You should." Good for him!
* end rant *
Whew. Glad I got that out of my system. So, anyway, we had to leave to meet Katharine and her father downstairs almost immediately after Fran dropped that bombshell. I was fuming, and struggling with my father's wheelchair and oxygen didn't improve my mood. (The home-oxygen company never got around to delivering the additional small, portable tanks we wanted -- although Dad has a concentrator and lots of large tanks -- so Gary pushed a big tank in a wheeled stand while I pushed the wheelchair.) We got out into the pouring rain, got Dad and Fran and the oxygen tank into the car, got the wheelchair into Katharine's SUV, which holds it more easily than my tiny Ford Escort does, and drove to the Senior Center from Hell.
Maybe it isn't always the Senior Center from Hell. Maybe everyone was in a bad mood because of the weather and accumulated holiday stress. But while the staff was nice and helpful enough, many of the other clients were, to our bewilderment, downright nasty. The man sitting alone at the table where we chose to settle first snarled at us and then bombarded Gary with a long monologue (okay, so he's probably lonely); when we were jockeying around trying to get settled, in a group containing two people with canes, one person in a wheelchair with oxygen, and three people with profound hearing loss, a man at the next table over yelled at us, "Sit down and shut up!"; and every time I went back and forth between our table and the cafeteria line, someone glared at me.
My two theories about this are: 1) Some of the old, infirm people who were by themselves may have reacted badly to seeing elders accompanied by younger, more able-bodied family, and 2) Some of the old, still relatively able-bodied people may have felt threatened by seeing more infirm elderly people, grim reminders of their possible futures. (This would tie in with my perceptions of what's going on with Fran.) I've decided that old age really is, in some ways, like second childhood, and kids are notoriously unkind to the most vulnerable among them. Insecurity makes mammals mean, whatever their age.
In any case, it was uncomfortable, and the place was way too loud for anything approaching conversation, especially given the cumulative hearing loss in our group, and the food was mediocre at best, although I'm sure they're dealing with budget cutbacks like everybody else.
Afterwards, we wrestled the equipment back into various cars and drove back to Dad and Fran's apartment. After Gary and I had gotten the wheelchair out of the SUV, Katharine beckoned me over to her driver's-side window and said, "Call me later. We need to talk. Your father definitely needs to be in assisted living, especially if Fran leaves."
That sent me into an emotional tailspin. Move him again? He's miserable in institutions. How much more of this can he take? We've already seen what passes for assisted living at the VA's "Community Living Center" (CLC), a place depressing beyond words, and what else could any of us afford?
Back upstairs, Dad wanted me to spend the afternoon with him. I dithered and then, in my own escape mode, said, "Dad, I'm meeting a friend for coffee at 4:00, and I really need to swim before then."
"You need to swim?" he asked, squinting at me.
"Yes, I do. My back's bothering me, and my mood's not great right now, and you need me on my feet and healthy."
He agreed, thankfully, and I drove Gary home -- he's handled Dad and Fran very well, but he's as exhausted as any of us, and is of course dealing with his own emotional and family issues -- and then swam. The other person in my lane at the pool was a friend from work, who probably got more of an earful than she wanted. (Asking me "How are you?" is a little dangerous right now!)
Swimming made me feel marginally better. Then I drove through heavy rain and the beginning of what looked like scary snow to meet my friend Nancy, a fellow volunteer chaplain and former pediatric hospice nurse. She'd suggested coffee after catching up on the last several weeks of my blog, but since leaving Dad's house, I'd been wondering if I should have cancelled to spend more time with him.
I'm so glad I didn't! Nancy was wonderful, a perfect friend and chaplain. She said, "I'm here to listen," and then validated every feeling I was having or might possibly have. She told me God forgives me for my less than charitable thoughts about Fran, and when I vented about Fran, she didn't say, "You can't blame her." Instead she said, "How dare she!", and later on, when I was doing the I-know-Fran's-really-stressed-out-too disclaimer, Nancy interrupted and said, "Susan, stop being fair and pastoral. That isn't your job right now. Your job's to be the daughter."
She offered to use her VA contacts to try to get information for me, and wrote down a list of questions. (Are there VA assisted-living places other than the CLC? Is there any way to get home healthcare without my father being on Medicaid, as one social worker told me? Can we get a social worker to come to Dad's house?) She promised to send me -- and has already sent -- the name and phone number of an independent home healthcare person she knows and trusts, who charges less than the $20/hour, two-hour minimum the agencies do. She worked with me to make a list of small, concrete, useful things I can do:
1. Sit down and write out a list of all of Dad's meds/dosages/frequencies. I meant to get this from the VA, but haven't yet. Then start researching the list to see what each med does, running it by Nancy when I need to.
2. Bump up Dad's oxygen, after notifying his doctor, to see if that clears up his recent cognitive issues.
3. After showing the meds list to a pharmacist, think about putting Dad on COQ10, an OTC vitamin that may help boost his hemoglobin.
Nancy also gave me a lovely and very unexpected holiday gift: a set of coconut-and-lime handsoap and lotion. I love the smell: it reminds me of Hawai'i!
It was a wonderful visit, which was a good thing, because when I got home (at least the snow had stopped!), I found a $3,857 bill from the cardiologist who took care of Dad during his first Reno hospitalization. This is on top of a $423.00 radiology bill from the same hospital visit and a $644.00 emergency-physician bill. On Wednesday, I have to go to the VA to hand in Dad's annual means test, which the clerk said the computer wouldn't accept before the 1/7 due date (!). I plan to go from the eligibility office to the Fee Basis office, where I'll argue that since the VA wouldn't accept Dad's ambulance that first time, the resulting bills should be the VA's responsibility. (I'll have Dad's Medicaid-denial letter in hand, since the VA has to be the payer of last resort in these cases; if Dad winds up having to pay after all, he'll be down to Medicaid-eligible levels in no time.)
After dinner, I called Katharine, who said, "I watched you struggling with all that stuff today and I couldn't believe it. Poor Susan! At least my father's able-bodied!"
We kicked around assisted-living ideas, since she's done research for her own folks. (Our most creative concept was to have our two fathers room together, although for various reasons, I'm not sure that would work.)
But I also voiced my resistance to assisted living. My father would hate it. It would make him miserable. He doesn't eat well in institutions; he does much better at home if someone's there to coax him. (Fran's been doing an excellent job of this, as I've repeatedly told her; Nancy said, though, that Dad's not burning many calories, so we shouldn't worry too much about his intake.) I'm probably not going to have him for too much longer, and I want him to be as happy as he can for the duration. If that means hiring home healthcare, calling him two times a day to check on him, and visiting at least once a day, I'm willing, at least for now. His apartment's three-tenths of a mile from my parking lot at work; I could easily go over there to have lunch even on days I teach.
I also said, and meant it, "You know, despite everything, I'm glad he's here. I'm glad I can spend time with him. It's a privilege to take care of him."
Now I just have to figure out the best way to do that, while also taking care of myself and not straining Gary's patience to the breaking point.