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Friday, October 5, 2012

AFO, 911 & Other Disasters

I feel like I've just run a marathon after spending this whole week dashing to seven different doctor's offices, first to drop off medical records release authorization forms, then to pick up medical records. And these darn offices are spread across the city. I tell you, I put some miles on The Green Machine, though I don't know how many for sure, as the odometer doesn't work.

On one my last mad dashes, half-way home it began to rain and I'm thinking, oh crap, because I've only got one working windshield wiper, and it's a pretty jerky wiper at that. So I turn it on and, of course, you know it, there's this rather loud CLUNK! and the thing dies. Now, this is not just the wiper blade that I'm talking about, those are easy to replace, this is the whole darn mechanism: the rod that goes down under the dash which snapped. Bubba had warned me this was about to blow. I thought I had a bit more time...

So there I am, driving in the pouring rain, with no windshield wipers. I can't see a thing. The rain, plus the fact that I really need a new prescription for my glasses, but haven't been able to afford it. I am half blind. And, to add injury to insult, the darn radio fizzles out. I tell you, my knees were weak when I got home.

At Rehab, the occupational therapist has gotten the idea to teach Bob how to dial 911. She says he needs to be able to do this, in case something should happen to me. Oh my, what dismal experiment this has been. Always, when she starts this drill, she places a disconnected telephone in front of him, then shows Bob a piece of paper with our home address written on it. I guess the idea here is that Bob is then supposed to pick up the phone, dial 911 and tell them our address. Sounds simple enough. Unfortunately, our address seems to be a foreign language to Bob. He tries to read it out loud, but only gets the number "1" right. He'll look at a "4" and call it "22". So, then, the OT will read it out loud and ask him to repeat it. Even then, he manages to mangle it. After a few attempts at this, the OT gets flustered, tells me "it's a good thing you have a landline, because the police can trace the call." and asks Bob just to dial 911 on the phone. At which point, he dials our house address...

This is part of the OT's new safety kick. She has given me brochures on expensive equipment, special phones, home monitoring systems and the like, all of which pretty much we can't afford. And she's regaling me with stories like the doctor she knew, who fell in the bathtub, hit her head, and laid there in the water for three days and then, all her skin peeled off from the water....  oh god... Like I don't have enough to worry about, without worrying that I'm going to drop over dead or hit my head on the bathtub---jeepers, guess I will be careful when I take a bath, now I have this terrible image in my mind each time I step into the tub....

Better news at physical therapy, Bob has been able to consistently push up from the wheelchair to a standing position. I am so very proud of him. However, he can only do this at the parallel bars as he needs to grab onto the bar, once he's standing, to keep his balance. The PT tried to get him to stand up "out in the open" in the middle of the room, but Bob would not let go of the wheelchair armrest, so was sort of half-standing, half-leaning backward and pretty much scared shitless. But back at the parellel bar, he was able to walk 60 feet!!!  And no more leaning to the left!

The PT also fitted him with an AFO (ankle foot orthotic) last week. This was supposed to correct Bob's gait problems, but didn't seem to do a darn thing... I had high hopes that an AFO might do the trick. This was a big disappointment.

And now, Bob has developed a new gait problem, that of his right knee locking on extension. So that his leg is stuck straight, knee nearly backward, and his foot seems to be glued to the ground and poor Bob is unable to go forward or backward... Now there is talk of some type of knee brace.

In the midst of all of this, I have been filling out a 14 page "general information" questionnaire for the new attorney, which included, among other things, 15 years of past medical history, names, addresses, phone numbers of every single doctor, hospital, health care provider Bob has seen, and that alone literally took three afternoons to track down... not to mention all those little things you store in your memory, like dates of graduation, etc., that Bob can't tell me and I don't really know so have to track down.

And then add to this mix, Bob's peg tube is continually clogging every morning and then the dryer broke down. So there I am draping wet laundry all over the wheelchair ramp. But God bless the repairman who showed up the very next day and did not charge me for a new thermostat.

Believe me, I have been overwhelmed and stressed out and, half the time, don't know if I'm coming or going... That kind of stress where you walk into a room and completely forget why you walked in there in the first place. The other night, I set up Bob's feeding pump and a half hour later realized I forgot to turn it on. So I turned it on. Then another hour later, Bob needed help adjusting himself in bed, so as always, I first look to make sure that feeding tube is clear of him but--when I look down, I realize there is no pump tube connected to Bob. Because I forgot to connect to the dang thing. And pump is running, spilling all the Jevity on the floor. Ga! Thank goodness for Boomer, who will eat anything, and helped me clean it up. And then, after all of that, I finally get Bob connected to the pump, and a half hour later, he says "um, wet". I go to check him, and find out I left his peg tube clamped and the Jevity exploded backward out of the spare port all over his bed..... aargh! So there I am changing bedsheets wondering where the heck my mind has gone.

Speaking of Boomer, I won't even tell you about the time I looked at the clock and thought, oh, it's time to walk the dog! So I grab the leash, I am out the front door, all the way down the steps when I realize all I have in my hand is a leash-- no dog.

All righty... I am one harried caregiver.... But! Tomorrow is another day AND I have all the paperwork done, now.  I think...

1 comment:

Anonymous said...

Absolutely noone deserves the kind of stress and hardship you and Bob have endured. I hope things get better for you soon.