Tuesday, January 06, 2009

More Therapists Than You Can Shake a Stick At

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!


  1. All the luck in the world, Susan! Prayers ascending too. Seems like the more therapists the better. Good to hear that so many good folk are helping. I'm hoping that, as more people get involved in taking care of your Dad, things settle down and you have time to do the things you want and need to do. Prayers ascending for that too.


  2. You're not wrong to be angry with Fran. I would be, too. In fact, I am, for your sake. She's being incredibly selfish.

    The reason the caregivers are concerned about the pj's is that not getting out of them and into some daytime clothing is, for some people, a big flashing warning sign of depression. If hanging around in your pj's runs in the family, let them know. And give them any other indicators they should look for as an alternative.

    I'm keeping you, Gary and the rest of your family in my thoughts and prayers.

  3. Oh, Lord what a mess. I am so sorry you're having to cope with so much. It's unending. I'm with you on how our culture treats our elders and those who need our devotion and care. And, yes, geez, Fran. I mean, I understand she is overwhelmed but geez. Do tell them FIRMLY that hanging out in PJs makes Dad happy. And I'm glad he'll have so many people coming over--that in itself is social contact even if they are professional caregivers, and will offer some structure to your Dad. Also? If possible, don't worry about your weight too much right now. I know with all the traveling and the like you haven't been able to swim and walk as much as you have been at other times. You're wise to keep an eye on it in case there's a health problem, but it is nothing to pressure YOURSELF about, heaven knows you have ENOUGH pressure. Sending warm thoughts and prayers.

  4. First, you're absolutely fine--and well within your rights--to be angry, scared, miserable and utterly stressed out. So don't let anyone tell you otherwise, and don't listen to them if they try.

    Second, ditto what Omnibus Driver said about the pajama thing. I think i'd point out that your dad is wearing *clean* pajamas; if he's wearing the same thing every single day for three weeks at a time, or if he's covered in food and stains, then i can understand their concern. But if he's changing his underwear and wearing clean clothes, they've got nothing.

    And finally, stress messes up your metabolism and can cause weight loss. When your body is stressed, it does everything it can to conserve energy and store up in case the stress leads to starvation. Also, your eating patterns tend to change--maybe you are eating more fast/junk food, or maybe you're not eating as much, which again triggers that stress impulse to store up fat. On top of all that, you haven't gotten your regular swim in, either, and even though you're "running around," it's not aerobic exercise (this is how nurses can "run up and down the halls" at work all day/night and still not lose any weight).

    So i wouldn't worry about the weight gain until things have gotten a bit more stable.

    You've certainly had to be in Crisis Mode for quite some time now; i'm sure you're exhausted! I hope you and Gary are planning a nice vacation for yourselves (even if it's just to sit at home) once all of this has calmed down.

    (And also, it's okay for things to not go Back to Normal once things *do* calm down; you guys will need some time to cope, and grieve, and readjust first. That's a good thing.)

    Take care, Susan. I'll be sending thoughts and prayers your and Gary's way.


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