Ambiance

Report from the Home Front

September 24, 2009 at 3:11 am (By Amba)

So, we’ve had one week of the benign home invasion called hospice.

When pitched into a new space I tend to clam up.  It’s as if there’s been a Cubist rejuggling of the anatomy and I can’t find my mouth.  Maybe it’s where my left elbow used to be?  Give me some time, my voice will find a new way out.

Probably it’s only a flurry at the beginning.  It’s like being rushed by a sorority, a special sorority for the moribund.  (A morority? Being rushed by an eternity?)  For a while, we had visits and phone calls every day:  a nurse, a social worker, a chaplain, certified nurse assistants, deliveries of free medication.  I was dazed.

It was wonderful, wonderful to have help and to have the isolation breached and the need acknowledged, to have a tough, cheerful nurse to frankly discuss J’s swollen ankles and occasionally labored breathing with, and two strong ladies to wash and turn him three times a week — I walk right out of the room!  If he has a complaint he can take it up with them!  I had thought I might collapse with deferred exhaustion; instead, I had a ferocious surge of energy.  You’ve never seen anyone rejoin the human race so fast.  My organism seems to have become wonderfully opportunistic.  Give me an inch and I’ll take Manhattan.  (I wish.) I’m pleased to discover how much resilience is left, but a little bit afraid that the speed of my rebound makes it look as if I didn’t need the help as much as I did.

Of course, the price of the help has been a tacit and awkward redefinition of J as a (broadly speaking) terminal patient, a category that he (who has been down for the count so many times) doesn’t fit into too well.  He’s more like a cat on his eighth life, a recidivist of it-ain’t-over-till-it’s-over.  Part of being in hospice is accepting and acknowledging, almost catechistically, that this is end-of-life care.  Otherwise the expense of caring for you so intensively couldn’t be justified, and it’s why I suspect we’ll eventually get kicked off (at least for a while).  When you enter any system, there are necessarily procedures and parameters and categories and definitions that have to be somewhat prêt-à-porter, though in the case of hospice it is a generous garment and alterations are included.  It’s not a Procrustean deathbed.  But it is not quite the same as sewing or growing your own death in your own sweet time.

I hasten to add that it’s worth it.  What’s hard to know is how much to resist playing the roles.  Resist too much and not only are you officially in denial, but worse, your performance may convince others that you’re just fine — or too proud a jackass to admit you’re not.  Resist too little and you hand over your treasured, ornery uniqueness and independence.  There’ve been times this week when I found myself at loose ends, just waiting around for someone to come take care of us — not an option before.  The ladies were coming to wash J, change the bed, and get him up, so I didn’t.  Or I couldn’t wait for them to so I did, thus rendering their work semi-superfluous.  It’s a puzzlement.

Today everything fell apart in a good way.  First of all, the volunteers who had pledged to come and meet us — being in mid-deadline I didn’t write it down, so I wasn’t sure if it was Friday or yesterday — never showed and never called.  Then today a deliveryman called up and said he was on his way over with a special, constantly changing, bedsore-preventive air mattress and pump that the nurse had ordered.  I hadn’t known it was coming so fast and hadn’t had time to think about it or prepare, to buy mattress covers, etc.  He was arriving in half an hour.  The bath ladies were supposed to come, but I hadn’t heard from them and didn’t know when.  The deliveryman was primed to explain and install the mattress.  I had no choice but to go into action and get J washed and dressed, as in days of yore (and, of course, 4 days a week still).  He was having a good day; he was able to stand up from the edge of the bed, leaning on the walker and with a mighty boost from me kneeling on the bed behind him, long enough to get his pants pulled up.  (Ow!  This is how I got rotator cuff tendinitis in the first place.) By that time the deliveryman had arrived, and I was pleasantly aware of having someone to display heroics for.

Once he was up there was still no sign of the wash ladies.  The honeymoon appeared to be over — and some part of me was going, “This is more like it.”  I called Duke Hospice and left them a message that they didn’t have to come today.  Then we ate a lot of fish eggs.  Then he wanted to rest before going to the swimming pool, so I covered the air mattress with a blanket to protect it from the cats, who were showing a worrisome interest in it, and Hoyer-lifted him back onto the bed.  We both fell asleep.  I woke to a gentle, steady hissing sound.  Sure enough:  the cats had poked a couple of holes in the fancy therapeutic air mattress and were now riveted by the sound of air escaping.  I felt like an idiot — I should have known this was inevitable and sent the damn thing away, or told the deliveryman to stash it in the back room till I could figure out a way to protect it.  Now we’d probably be liable for it.  All the while, I was being peppered with last-minute copyediting questions and PDFs of nearly-final articles to proofread for work.

I got enough of that done so we could go to the pool, and then we came back and had supper, just the two of us.  J tried to put sour cream on his ice cream.  It was the first day that’s felt normal to me since hospice began.