Monday, December 29, 2008

Tiny Steps

In no particular order:

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

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

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

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

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

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

* The concert was gorgeous.

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

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

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

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


  1. Wow, that's quite a full plate...prayers for stamina and strength.

  2. Susan, I'm sorry Fran is so frustrated. Prayers, that her feelings about the situation she finds herself in improve, ascending. Also for your work load.

    That scooter sounds like fun. A friend has one and it provides her with a lot of happy independance.

    Peace! Hope! & Joy!

  3. Anonymous6:52 AM

    Fran has had lots of changes(losses) in the past few months. Part of wanting to go back to Chicago is wanting to go back to the point in her life when she had a familiar life (which wasn't working well, or she would not have moved to Reno with your dad) but now (in hindsight) her Chicago life worked perfectly well. Depression is a concern, of course - how has your dad helped her with changes in the past? And maybe your dad could pay out of pocket for home health worker to do personal care and homemaking - it would alleviate one of Fran's concerns (bathroom falls ARE a real concern, in terms of harm done in a fall in a small space with many hard surfaces) and take one task (cleaning the apartment) off of Gary's list. There are so many things that only you and Gary can do for them, so pay for what you can delegate. Once your dad gets down to Medicaid home care coverage levels, he actually may get more help with other items, too, such as medical transportation.
    Keep breathing, take it one day at a time, and savor the moments of splendor.

  4. One of the things I appreciate about working for the VA is how it has completely altered my response to "scary biker dudes" -- I so love the VA population and the ability to give back to these folks


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