Wednesday, January 07, 2009

Full Day

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).


  1. This is an extremely full day, Susan! Thankfully, all the news sounds good. Hope the rest of the week goes this well for you. Still praying.


  2. Glad you're getting some good news and actions!

    One thing about assisted living -- when Dad was in one for a bit more than a year, I noticed that the men tended to stay in their rooms and the women tended to use the facilities, congregate in lounges, chat -- there was one tiny, frail lady who played the baby grand piano beautifully. I think many more men than women have problems being seen as incapacitated. Your dad, however, seems to be comfortable with being out and about and is sociable, so if you can get him out of his room and interacting, hopefully he'll do well.

  3. Anonymous9:23 AM

    Dear Susan,

    Thank you for taking the time to acknowledge the private messages as well as the public ones. I'm so glad you are getting the support you need.

    Congratulations on getting a swim, and good luck getting a walk as well,


  4. glad to hear that today was a day when things fell into place instead of falling apart! as you've learned, caregiving has both kinds of days, and sometimes just hours. Glad too that you were able to start the day with a swim and end with some quiet time at home - that helps to recharge your batteries. Keep going on, one day at a time, and take care of yourself, Susan.

  5. Stopping in and catching up... what a whirlwind you've been on. I admire your ability to assess people and situations.

    And I saw two people out and about today wearing pajamas! I certainly wouldn't have jumped to the conclusion that they were because of depression or another behavioral health issue.

  6. "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."

    Makes sense; indeed, rather makes clear why Fran will not be eligible for Section 8 Housing in Chicago when she arrives there at the beginning of the coldest month of the year.


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