Weekly update. . . March 28

Not a lot to say/share these days, but I'll try to give a quick update . . . Penny and Jim have been with us for nearly two weeks, since Bob's condition started to go downhill. Things have plateaued and are now stable again, but not great, and certainly not back to the point we were when we first entered hospice, or even just a week and a half ago, as they were around St. Pat's (pic is from that day—first beer, chips and guac of the season, out on the deck). Oh, to have those days again. . . funny, what you wish for, given current circumstances and perspective . . .

Bob sleeps much of the day now, and when he's awake he often wrestles with confusion and hallucinations; it's hard to witness, as he sometimes realizes what's happening, but can't stop them and gets frustrated. The real hard part is to see him so confused about the day, his meds, things that he used to be so freakin' anal about . . . his appetite has been okay, usually not much for breakfast or lunch but he still tends to eat a decent dinner, maybe a snack in between . . . everything is much harder for him—moving about the house, getting to/from the bathroom, in and out of bed . . . gets winded very easily, and hasn't been up for any outings in a while. I got an e-mail from a cousin of mine not long ago; I was touched that she remembered the story I'd told (back when Bob was at Bethesda) about not getting to tour the state capitol as a 6th grader. She told me she has a friend who's a MN state rep; offered to give us the grand tour of the capitol, any time he's up here, in session. Even though Bob's been in the capitol before, he thought it sounded like a cool "field trip." Two weeks ago, I would have said, "Sign us up!" Today, I don't think it's in the plans. . .

Our days are pretty mellow, lots of sitting around, reading, watching TV while doing loads of laundry, still doing leg wraps and dressing changes, a daily shower still is a welcomed event. I'm still cooking up a storm, messing around (literally) in the kitchen—when Penny allows me in my kitchen, that is . . . ;) It's comforting to have them here with us, they're an immense help in so many ways—meal preps, running to the grocery store or Target for me, Jim likes to take Gaia on a slow, meandering walk (she likes it too), Penny helps keep the place spotless, keeps watch over Bob in a way only a mom can. . . forever grateful for all they've done and continue to do for us. . . funny, for as quiet and uneventful as the days are, they still go fast. The routine hasn't changed much: wake up, maybe have a bit of breakfast (bowl of cereal and fruit, at the most), then meds, remove leg wraps/stockings, take shower, dressing change, re-wrap leg(s), get dressed. . . then loads of laundry, maybe a little lunch, afternoon meds, several bathroom trips peppered throughout the day, more laundry, clean house in between, walk dogs in between, run an errand or two, if needed. Then prep for dinner, eat, clean up, nighttime meds, dressing change, one more load of laundry, then bed . . .

Nights, however, are another story, as that's when the "demons" come out. Bob becomes restless and agitated, doesn't sleep for very long, very quietly or very restfully; the first several nights of the past few weeks were non-stop activity—up to the bathroom, back into bed, then up to the living room, back to the bathroom; back to bed, then out to the living room again, lather, rinse and repeat over and over, never allowing more than a half hour's sleep at any given time, for either of us. A desperate call to the hospice on-call nurse at 3 a.m. one night reminded me that we had been given a "little bag of tricks" (given to all new Fairview hospice patients) back when Bob was first admitted to hospice, of Haldol, Ativan (two anti-anxiety meds) and a few other treats, to help address the various side effects, physical changes, etc. that are going on. I had shoved them into a drawer and promptly forgot about the, hoping we'd never have to resort to them. . . Haldol has proven to be the miracle med to take the edge off Bob's anxiety, helps him sleep for a few hours straight; when he does get up for a bathroom trip, he falls back to sleep again afterward. Ativan also works, but Haldol seems to have longer lasting effect. So far, at least for a few days in a row, we both have gotten some decent sleep, though I still pop wide awake every hour or so and have to check on Bob. . .

So about that Etsy/photography site for Bob's work . . . I haven't forgotten, haven't given up on it. I'm still working on it, but it hasn't been easy to squeeze that in with everything else we have in the day (you should see the sheer volume of photos Bob has! Incredible!! Makes for choosing pictures to print than many times harder . . . ) That, and I've been having printer issues . . . anyhow, will keep you all posted when it's up and running because I am still working on it, bit by bit . . .

Right now, as I type, Bob is actually deep in sleep, snoring, even. Who would have guessed even

that is a welcomed sound . . . g'nite, all. xxoo j