Rehearsals

Did I mention? The world needs more Arcadipanes. For those who don't know what an Arcadipane is, check back to the "America The Beautiful" entry...or wait till the end of this sentence, where I explain again that the Arcadipanes are the cool arm of d's family here in the States. If I didn't already have an awesome family back home (see "Tell Me About Your Parents..."), I'd be making Beagle-pup eyes at them right about now and begging them to adopt me. I'm sure we'd get around the whole thing about my atheism and their Catholicism fairly easily...right?

Today was a day which, once again, could easily have been overwhelmingly depressing. We met the Hospice nurse at the Healthcare Centre, where Rita, my mother-in-law, was still (or back) asleep at 11AM. I should mention, the Hospice nurse was named Karen. She introduced us to the Hospice social worker...who was also named Karen. Truly, I live in a world of Karens. d and I introduced them both to Larry, my brother-in-law. A little background was necessary there - and it's necessary here as well. Having heard d recite the story more times than is probably healthy over the last few days, it goes like this:
Larry is d's brother. He's 53, and he lives in the same Healthcare Centre as his mom, as the result of a catastrophic car accident back in 1999. He's in a semi-paralytic state - while it's estimated he's 85% mentally intact, he now has physical control - and then only some - of his left arm and his left leg. He can't eat, has a trache for assisted breathing, can't speak, and is basically living the stuff of nightmares, as an active mind trapped in an almost-entirely useless body. Besides their primary purpose of ensuring that Rita is made as comfortable as possible in her last months on this planet, a key point of engaging the Hospice team is to be there to help Larry with his grief when his mother passes. This was a lesson that was learned the hard way when his father (who also by then lived at the Healthcare Centre) passed away a couple of Christmasses ago. Hospice tried to help Larry then too - but one of the important things to know is that he does not do well with strangers, or with people taking too many liberties too fast...if you imagine being trapped in a body where the most basic freedoms of choice are denied you - the freedom to say "don't touch me, I don't like it", the freedom to express your rage or frustration, your grief and sadness, in anything like the way you want - then you should be able to understand his reactions. So they couldn't get near him at the time he needed them. This time, we're adamant it'll be done the right way, with a phase-in of these people, so that they can be there for him at a time when, facing reality, we won't be.

We all came back to Rita's room, and were joined by Nancy and Josie Arcadipane. So that's me, d, two Karens, two Arcadipanes and Larry, all crowded round Rita's bed, where, except for spasms of pain, she was regularly falling back into a fitful sleep. Josie and Larry were both in wheelchairs, adding to the crush. And the unmistakable wave came over me that this was a rehearsal of a death-bed scene, for the real version of which I wouldn't be present. Josie added to the atmosphere, by talking about going to a better place and the Good Lord opening his arms to Rita. It was a solemn and stomach-flipping moment, this unintentional rehearsal, and with simple words in which I don't believe, Josie still managed to make it better. How? Very simple - it's not my death-scene, it doesn't matter what I believe. Josie believes it, and Rita believes it, and right at that moment, that was the epitome of the Hospice principle brought to life - making the end of someone's time as comfortable as possible. So despite my atheism, there was power in Josie's words because they made things better for Rita, which there and then made things better for us all. I did say she was an example of the best kind of Christian.

As a bunch of us moved out to take Larry for a walk, so he and d could grieve together, Nancy again came into her own. Rita didn't properly understand the nature of the Karens, but Nancy (who has worked most of her life as a nurse), happened to know Karen-2, and she stayed behind to buck Rita up as she'd done a few days ago, and introduce Karen-2 as 'a friend of mine who's gonna be helping you and Larry.' I might be wrong, but there seemed to be something so simple and easy in that line that I'd be very surprised if it didn't sink in. She's a natural carer, is Nancy, just like her mom. Truly, I'm thinking a healthcare system crammed to the gills with Arcadipane women would be the envy of the world...

d and I went for lunch with Nancy, to catch up on some missing history. Details here would drag us off the point, but suffice it to say some chunks of mystery came into a clear focus and demystified for us. Then we went back to the Healthcare Centre. Both the Karens had gone, Larry was having a post lunch-bag nap, and Rita still hadn't gotten up. Part of the Hospice principle of course is that patients have control - if they don't want to get up, they don't have to. If they don't want to eat, they don't have to. We chatted a while with Josie, and something else came into clear focus for me for the first time. As well as making Rita's last months easier and more comfortable, part of the Hospice brief is to see that Larry's cared for when she passes. But here's the thing - this caring for Larry also feeds back into Rita's care, because the two of them have been entirely co-dependent now for so long - they are each other's reason for living, essentially - that the logic runs that seeing him cared for would ease her passing, and make it more likely that she would relinquish the hold on a now permanently-painful existence, going out on a great sigh of relief, as it were.

Josie said to me:
"I spoke to Rita not long ago. She said that knowing that Donna [d] is taken care of gives her peace...You've already given her peace..."

Hit me like a truck, that one. I'd understood the logic as far as Larry was concerned. Why it didn't occur to me that Rita would also be anxious to see her daughter settled, content and at peace herself, I have no idea, but it hadn't. Hopefully now, if the hospice phase-in works, we'll be able to do our best for her and give her the peace she needs to slip into a greater peace in which she has a complete faith.

We went out for another breath of air, took in the local historical society, (note to self: do further research on William Seward, seems fascinating), and went back to the Healthcare Centre once more. Met up with Aurie (Larry's long-term girlfriend since before the accident). Made plans to go for dinner with her. Then met Rita in the hallway - she'd been gotten up, rather against her will, and was grumpy. Hastily rearranged plans, and stayed to help her eat her dinner...which she thought was breakfast. Throughout the meal, and immediately afterward, she fell asleep, almost unrousably. Woke her up just long enough to get her to bed. Went for one final visit to the Arcadipanes, and ran into John, the last of 'our' generation of the family I had yet to meet. It occurs to me I should probably mention that all or most of the Arcadipanes I've met so far are seriously ill themselves - Josie's in the Healthcare Centre recoving from major heart surgery, Nancy has MS, Red, Nancy's dad, has Alzheimers' and dodgy kidneys, and John, this latest Arcadipane, has something utterly ghastly and painful that begins with "Tri-" and goes on for another fourteen syllables. And yet they're jolly, and funny, and thoughful and, which is more, effective pain relievers. John not only gave us a lift to a place he'd recommended we grab a bite of dinner (which, coincidentally, was the place we'd intended to go anyway!), he introduced us to the manager, and told him we were his cousins and that he should take care of us, before driving away with a cheery wave. The manager was great, and gave us both entirely wonderful pizza subs while quizzing us enthusiastically about all things English. The perfect end to what could have been a horrible day, but - again, largely thanks to the influence of these Arcadipanes - became probably the single best Healthcare Centre'd day either of us has had in about seven years.

I say again, the world needs more Arcadipanes. If you don't have one, you should really think about getting one. Today.

Blood this morning was 6.5. Still no treadmilling done, and the pizza sub was technically a bad idea, but given that we've walked quite a distance today, I'm not sweating it. Going to bed now to prepare for what could be quite a gruelling day, with a plane flight at the end of it.