Our shadows taller than our souls (home hospice experience #2)

Abbie Cat (under the blanket) watching D watch Buster Keaton.

Abbie Cat (peeking out from under the blanket) watching D watch Buster Keaton.

And our hospice experience continues. D has been home since Tuesday afternoon and we’re all trying to get our feet under us and settle into some sort of rhythm. We’ve got the bed and furniture set up and added a few items from her home, including some paintings and personal objects. That’s all well and good but most importantly, D’s kitty Abby has moved into her new home here. How very happy they were to see each other! Abby has settled right in and spends most of her day on the bed with D.

Naturally, there are challenges; each day brings its own set of “OMG, what do I do now?” moments. D is on some serious medications, including morphine and fentanyl, which do a lot to help her breathe easier and ease anxiety but don’t do very much for mental acuity. Combine these meds with the challenges that come from low blood oxygen levels and we’ve got some serious confusion on our hands. Some of it is to be expected – losing the thread of a conversation or being unsure of day, time or location but it also manifests itself in odd ways – sudden anger about things like the order she takes her pills (round ones go first, we’ve learned), for instance. We just roll with it and it all seems to sort itself out. My husband has depths of patience and caring that are amazing to behold.

We did have a fairly big deal to handle early on, though. D is a smoker. It’s her smoking that got her to this condition and it’s her smoking that will eventually bring her to her end. Knowing and understanding this, however, doesn’t mean her desire to smoke has gone away. As any smoker knows (and both my husband and I are ex-smokers) this is one terrible bitch of an addiction – one that defies any rules of logic or common sense. So, it wasn’t too much of a surprise that D wanted a cigarette not long after moving in here. Handling a request like this is certainly not in the hospice handbook! Husband consulted with her doctor and the visiting hospice nurses and their advice was unanimous and unambiguous: give her a cigarette. Their contention was the cigarette itself was not going to do her any true harm at this point but the anxiety and other symptoms of withdrawal certainly would. This was, needless to say, not a popular opinion among all of D’s family but my husband agreed with the experts and bought his mom a pack. Each day, they go outside and she has a few puffs on a cigarette. That’s all, just the one, and she’s so much happier. Hard to argue with this one.

As I see it, our job here is to help her feel as comfortable and anxiety-free as possible. Quality of life and comfort, to the best of our ability. If that means she wants her cat, she gets her cat. If she wants nothing but donuts for a day, she’ll get donuts. (Although we might slip some fiber or vitamins in somehow). It’s about D and her wants – not what we think she should want or what we’d feel better about her wanting. It’s her life and her death – we’re just the back-up singers.

Siobhan in cosplay costume

Siobhan in cosplay costume

Incidentally, while she may be a bit addled about where she is or what she’s doing at any given time, she’s completely on the ball in areas you might never expect. My daughter is an active cosplay fan so hits the “Cons” whenever they’re in town. This weekend brought a ComiCon type event so she dressed up as a character from the online comic Homestuck. My husband asked her to stop in and see her Gran before she left – I wasn’t so sure how that was going to play out – how would the lady who isn’t quite sure who’s currently living in the White House handle her granddaughter popping in wearing a black wig and horns? As it turns out, she LOVED it. No uncertainty or confusion about the horned girl – just delight. And delight is exactly what the doctor ordered.

It might get loud

We live in a quad-level home in suburban Detroit.  The kid’s rooms, much to their dismay, are both clustered right by ours on the top floor.  My son is directly across the hall.  Needless to say, I hear a lot of his friends saying “what?!?” when he’s whispering into Skype, trying not to be overheard.

Generally, there’s much to be overheard.  My kids are both musicians.  My son’s room is a crazy, overloaded space with a desk, two computers, a keyboard (he’s teaching himself), his bed, a full drum kit and all of the various sticks, pads and stray cowbells that seem to follow drummers around.  It’s not a big room and it would make me crazy to feel that crowded but he loves it.  If the clothes are mainly off the floor and there’s no odd smells of old food or overripe socks, we’re mostly okay with it all.

With the good comes the bad, though.  Musician children are great.  Sons that play drums, daughters that play viola: awesome.  Sons learning keyboards, also awesome.  Son learning keyboard by playing the opening piano sequence from Coldplay’s Viva La Vida over and over and over and over, well…

And over and over and over.

At the same time, I really admire it.  I don’t play an instrument.  Never had the patience or the drive – something I’ll always regret, I think.  So while the repetition of this particular bit of Coldplay can get old pretty quickly, the fact he’s willing to keep at it until he’s got it down means the world to me.  He’ll get it at some point and move on to the next one and the next one.  I can only sit back in wonder that this kid is mine ( and hope the next one isn’t Coldplay.)