Rock and a Hard Place [UPDATED AGAIN]

October 17, 2010 at 11:38 pm (By Amba)

J is sleeping, unconscious, semiconscious, most of the time.  Sometimes he can’t be roused at all.  Sometimes he will respond to a call but only with a grunt.  And sometimes he will wake up briefly, greet friends, make an expressive face, show pleasure in jazz being played, drink a little ice water and cough strongly as some of it goes “down the wrong pipe,” eat one or two spoonfuls of something soft, and then, exhausted by the effort of any or all of the above, sink back into sleep with unswallowed food still in his mouth.

What is making him so somnolent?  Pain?  Pain medication?  Or just the impact of the viral illness and its aftermath on his already so compromised brain?

I suspect the third, because the somnolence had its beginnings before he had either significant pain or medication for it.  But in my impossible decisions about what to do for him — made impossible by his extreme difficulty in communicating and perhaps even perceiving what he feels and needs — I am right now pinned between a close friend who suspects that pain medication is the problem, and thinks I should try stopping it to see, and the hospice people, who suspect that pain is the problem, and who probably think I’m not giving him enough oral morphine.  The hospice doctor explained to me that unless you “stay ahead of” the pain of postherpetic neuralgia, unless you treat it “aggressively,” it can settle in and become a permnent habit of the nerves.  Meanwhile, our friend fears hospice is too willing to nudge him towards death in the guise of the “comfort care” that would be completely appropriate for an unambiguously terminal cancer patient.

I see his point.  Hospice was wonderfully supportive of J’s relative well-being before shingles, and fought to keep him certified for the past year, on the grounds that he was helpless and his illness was progressive and ultimately (if not immediately) terminal.  I know people whose spouses had the same illness and were on hospice for as long as three years.  But now that he has taken a downward turn, the hospice people assume that he has begun to move toward death.  (They may be right, but never underestimate J.)  The Thursday before last, when I asked the on-call nurse to come over because he was passing out so alarmingly, she told me, “When they stop swallowing, it means the body is starting to shut down.  [ominously] You may see other changes.”  A week ago tonight, when he was unconscious, unable to cough or swallow, gargling and pausing in his breathing, and his feet were cool, the same nurse spoke on the phone of the “death rattle” and “death secretions,” and told me to call her if he “passed” during the night.  I was alone with him; I put on his favorite jazz, left a low light on, and fell asleep holding his hand.

In the morning on Monday he still sounded as if he was underwater, but his color was rosy, his feet were warm, and his breathing was regular.  That day, the social worker brought me a list of funeral homes, while a different nurse ordered us an oral suction machine (the night nurse had said it was pointless) and scopolamine patches to dry up secretions.  They weren’t needed.  By Tuesday morning he was swallowing, coughing, and dry, drinking a lot and eating a little, but also hallucinating, waving his arms and talking to people on the ceiling.  The day hospice nurse labeled this “terminal restlessness” and wrote into her computer system, “Goal:  safe and comfortable dying.”  Since then, he has cycled among somnolence, fidgety hallucinations, and a groggy lucidity accompanied by severe pain.  (When in that phase I asked him, “Does it hurt?” his answer was, “You’ll never know.”)

I’ve been trying to ignore both extremes and to follow J’s lead, pushing him neither towards life nor death, giving him pain medicine when he’s able to let on that he’s in pain, and not when he indicates he’s not.  (Times when I can’t get any kind of verbal or nonverbal answer to the question “Does it hurt?”, hospice would probably recommend medicating him, but I don’t.)  How surprising to discover that at such a time what’s most challenging is having to juggle the needs of other people than the one who’s ill:  the  young friend for whom J is the hero who always fights and prevails; the cousin who wants to rush to visit out of guilt that she didn’t when he was healthy; the friends and relatives who have strong and contradictory opinions about what to do for him; the old friends who need to unburden their own feelings and memories about J; the protocols of hospice and the mixture of professional and personal in the motives of its personnel.  All this is a rightful part of the job; it’s just the hardest part, because it’s “social work,” literally, at a time when you don’t feel very social.  But it is vital, because it keeps you half in the world of the fully living, maintaining the connections that are also sustaining you.

UPDATE: I tried to give our friend’s hypothesis a chance today by giving J as little pain medication as possible, to see what would happen.  What happened was that he was no more present, but plainly more miserable.  Whatever we do, he is withdrawing.  We might actually have more moments of real contact with him if we keep him comfortable.

UPDATE 2: He sure likes Chris’s homemade applesauce, though.

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14 Comments

  1. Peter Hoh said,

    I think you’re correct that the hospice workers don’t have enough experience with patients like Jacques. Their experience has created a template, and when it looks like he fits that template, that’s how they see him and that directs how they think he ought to be treated.

    Hospice workers are also rather familiar with family members who aren’t facing the reality that their loved ones are dying. That makes you fit a template, too, even when it’s not appropriate.

    Yes, you are between a rock and a hard place. Life ain’t easy.

    Wish I were close enough. I’d bring my crowbar.

  2. amba12 said,

    :)

  3. chickelit said,

    I am right now pinned between a close friend who suspects that pain medication is the problem, and thinks I should try stopping it to see, and the hospice people, who suspect that pain is the problem, and who probably think I’m not giving him enough oral morphine.

    What would J want you to do? Did he leave you any inkling?

  4. amba12 said,

    J wants to be comfortable; he also has a strong will to live. I’m trying to get a sense of where he’s going. My impression fluctuates with his condition. He woke up about 1 A.M. and ate a couple of spoonfuls of Brunswick stew (a southern specialty) and drank half a glass of Ensure. He said his face was hurting so I gave him a really minimal dose of medication. Now he’s sleeping deeply and, it appears, comfortably — like himself. In the best of all possible worlds, maybe the pain is easing up some.

  5. PatHMV said,

    Annie, a friend of mine just posted this quote on Facebook. I had never heard it before, but it made me think of you guys:

    “If you can find a path with no obstacles, it probably doesn’t lead anywhere.”
    ~~ Frank A. Clark

  6. Maxwell James said,

    From the beginning hospice been a somewhat awkward fit for Jacques. Despite the nasty turn he’s taken from the shingles, it seems like that’s still the case. As always, I think your instincts are probably the best – best wishes, and you both remain in our thoughts.

  7. amba12 said,

    Yep, yep.

  8. realpc said,

    I will pray for you and J, Amba.

  9. amba12 said,

    Thank you for that.

  10. wj said,

    Hospice can be a challenge. But having been thru this last spring with my mother, my biggest regret is that we didn’t get them involved sooner. It would, I think, have been a bit easier on her.

    You and J will remain in my prayers.

  11. amba12 said,

    Thanks, wj. Yes, hospice is great. I have been very grateful (if somewhat guilty) for their help. I don’t know that I would have made it this far without them. For one thing, after the fire a year ago we had just been admitted to hospice and as a result there was a place for J to go for two days while the landlord readied a temporary, too-small apartment where we could at least stay until the accessible one right next door was available.

    It’s a sad irony that this illness of J’s has made it clear that he was a more appropriate hospice patient than I knew.

  12. Stephanie said,

    I’m so sorry, Amba. What a tough situation. Sounds like you are doing all the right things, and trying your best in very trying times. Hopefully “right” the direction will become clearer soon.

  13. Danny said,

    So beautifully described, and it sounds so, so hard. Love to both of you.

  14. A said,

    I’m relieved for both you and J that there seems to be some clarity emerging re pain medication. You’re in my thoughts.

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