Saturday, January 07, 2006

Mine's defective, can I have another one?

So Tam's slipping off her nut again.

This warrants some history: In January of 2001 Tammy become obsessive compulsive as a result of her battles with HD, and started making me wash my hands a lot. Since HD also made it hard for her to coordinate her movements, she a) couldn't wash her own hands, and b) spent all day lying in bed watching television, not getting dirty in her mind. Dirt was her obsession, but making me deal with it was her compulsion. Then something happened that made her distrust the kitchen, despite any amount of anti-bacterial cleansing, and thus began the days of the fast food meals.

As illogical as it sounds (but hey, we're not mentally ill) she would no longer eat anything prepared in the kitchen, and I had to truck in fast food three times a day. Not only that, but I had to take elaborate measures between getting it in the door and feeding it to her. To touch anything or to set the food down anywhere was instant game over -- it went into the garbage and I had to wash my hands, head back out, and start all over again. I doubt if I was putting in 30 hours a week at my 40-hour-a-week job, fortunately my employers (despite all their other faults) looked the other way and I still got full salary. Attempts to tell Tammy she had a problem were unsuccessful, in her mind I was the one with the problem for thinking that any of this was unreasonable behaviour. Those were not good days.

Finally something happened that made her distrust the car, then that was it -- she stopped eating. I called the Huntingtons Society for help and the social worker made it very clear. She had to be committed, against her will if necessary. After work that day I called on her mom (an ER nurse) and she came over to help me confront her. Tammy still wouldn't admit there was a problem, so we had to call 911. Both the police and an ambulance came; they talked to Tam privately and told us that she seemed okay to them. At that point I could have had a breakdown and they'd have had to haul me away, but Tam's mom gave the cop a good talking to and he grudgingly agreed that the doctors could decide. Tam was restrained and wheeled out on a gurney.

Her mom and I followed the ambulance to the hospital, where Tammy was placed, cursing and swearing, into that scary white room with the big dome window in the door. We waited for hours for someone from the psych wing to do a consult, while in the meantime Tammy wouldn't let us see her, telling the staff she hated us and never wanted to see us again. She was admitted following the consult, and in the wee hours of the morning we went home. I had a silent weekend from which I recall nothing except the call from the psychiatrist, who spent at least an hour with me discussing Tammy's history to determine the right course of medication. Then on Tuesday something magical happened, Tammy wanted to see me.

Over the next week she was sweet as pie, happy to eat, and looking forward to coming home. She began learning to use a walker with the physiotherapist, and the hospital wouldn't discharge her until we were set up with home care. Thus began the renaissance, and for the next two years life was good, until we had the neurologist fiddle with her meds to overcome, ahem, sexual side effects (how the hell do priests not do it year after year after year?). Tam's obsessive compulsive returned as a result, only this time the fear was of broken glass in the living room from a light bulb that had shattered years earlier.

She became increasingly convinced that her hands hurt from slivers of glass, and demanded an emergency room visit. We discussed her previous experience with ocd, and while the glass was still very real to her, she said that she'd stay at the hospital for her meds to be adjusted if the doctors found that there was no glass. Of course there wasn't and Tammy was seen by another psychiatrist. We pushed for admission but he said that there'd be enough hospitals in her future, issued new prescriptions, and sent us home. In the next week Tam was worse and insisted on going back to the ER to get the glass out of her hands. Again we waited hours for doctors to tell us that there was no glass, then hours more for the psychiatrist to send us home with new prescriptions. Tam got worse.

I called the social worker at the Huntingtons Society again, whom I now had a relationship with through the support group, and she said that the secret to getting admitted was to refuse to leave. The next morning I got up at 6:00 am, had breakfast with my parents, then took dad to the hospital for a cancer operation. I worked a full day, then cooked a farewell dinner for Tammy and her mother before heading to the hospital for "operation don't leave". With Tam and her mom in the waiting room I headed up to recovery to see mom and dad, only nobody was there and the desk nurse told me she had no record of my dad. Another nurse overheard the exchange, asked me my name, then took me down to the waiting room in surgery. Mom was there crying and praying; dad was in emergency surgery for complications and they couldn't tell us if he would pull through. I spent the next several hours bouncing back and forth between waiting rooms. At 3:00 a.m. dad was out of danger and moved up to recovery, at 5:00 a.m. Tam was admitted to the psych wing, and at 6:00 a.m. I went to bed; after what was still the worst 24 hours of my life.

The psych wing was horrible. The first time Tam was hospitalized for ocd she was in a regular ward where she could receive proper care. Two years later with her condition much worse, she was in a wing with normal beds and mostly non-medical staff. They weren't prepared for somebody who couldn't wash, dress or feed themselves; and who could barely even press the call bell. Her moms and I began making daily visits, coordinating to try and cover every lunch and dinner so Tam could at least stay fed.

After two or three weeks Tam was mercifully transferred to Freeport for a full neuropsych assesment, staying in a complex care wing with the advanced elderly whose needs were similar. Volunteers helped her attend numerous activities and workshops which Tammy loved, occasionally blurting out such sweetly morbid things as "This is where I'd like to be when I die." After a month or so the assessment was called off, since Tam was mentally stable and had no symptoms that weren't directly related to Huntingtons Disease. She was discharged into long term care, meaning she got to stay at Freeport while on the waiting lists for a nursing home bed. Little had I known that that farewell dinner was literally her last as a resident of our home.

In February of 2004 she was admitted to Lanark Heights long term care and our problems began anew. The new doctor thought that she was on the anti-psychotic meds for HD related movement disorder, and figured that since they didn't appear to be working, she didn't need to be on them. On her second weekend home I realized that some of her meds were missing and brought up the issue with the nurse. She told me she'd pass on the message to the doctor but the prescriptions didn't change and Tam's behaviour began getting worse. Her obsession now was with the quality of her care, on each visit I was subjected to endless litanies on how her roomate hated her, such and such a nurse was a bitch, the nursing home sucked, she wanted to come back home, etc. It got to a point where the home called to say that Tam was a real problem and couldn't stay there anymore, and I let them have it with both barrels. Finally the doctor called me and it was the first that he'd heard about the meds being a problem, apparently the nursing staff had been stonewalling me from him. It took a few weeks to get the meds phased back in, but her last two years at the home have been good and for the most part she's been happy there.

Then a month or so ago I noticed that her meds had been changed again, and sure enough her behaviours are increasing. The social worker at the home looked into it for me; the psychiatrist was called when they noticed that her behaviours had increased a bit (her decline due to Huntingtons is continuous) and adjusted her meds, but now her behaviours have increased a lot. The psychiatrist is only in once a month, so now we have to wait until the 19th before anything can be done about it. This will not be fun.

In the midst of all this, my phone has died again. I've been a Palm user for the last eight years and am not prepared to be without one. When my original unit died, I started using one we'd bought at work for a research project that was cancelled. I couldn't take it with me when I switched jobs two years ago, and my cellphone then would only hold a charge for a half day or so, so I sprung the big bucks to converge with a Kyocera 7135. It was nice to have a phone, pda, and mp3 player in my pocket but only have to carry around one thing. Unfortunately it died 13 months later, only six weeks out of warranty, but was an old enough design that they no longer offered repairs. I'd have to pay the full replacement cost, $300 more than the price of a Treo 600 after rebates. Of course I bought the Treo, adding a camera phone and video player to my all-in-one arsenal. I thought that I'd hate the chiclet keyboard after years of scribbling in my data with a pen, but it made for great one-handed operation.

Unfortunately my bad luck with smartphones quickly struck again, after little more than a month the screen got smashed. Since it wasn't a manufacturing defect and happened after 30 days, I was once again looking at the purchase price to get it repaired. Fortunately I do electronics for a living and found a new screen on the net, so I replaced it myself for about a hundred bucks. For the next ten months life was good, I even became an SMS demon thanks to that little chiclet keyboard. Then last week it started locking up at random, completely unresponsive until whacked, squished, or twisted. The warranty period's a year but my screen repair voided it, so I was planning to fix it myself again until King Kong happened -- the phone started vibrating in the theatre and I couldn't shut the damned thing off! So yesterday I went out and bought myself a brand new Treo 650, adding a camcorder, bluetooth wireless, and a hi-res screen to my arsenal.

Every time I've bought a smartphone there's always been something better on the market. The Treo 600 was out but pricier when I bought the Kyocera, and the 650 when I bought the 600. The 700w just came out and I'm behind the curve yet again, but for some reason the guys at Palm decided to run Windows on it instead of Palm OS. This virtually guaranteed that it would suck, and I'm happy to report that in fact, it does.

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