October 9, 2010 at 12:37 am (By Amba)

It would be absurd to say J is “hovering between life and death.”  He’s still very much on the side of life.

But it’s as if he’s pondering whether it’s worth the effort to stay here.  If he doesn’t have the strength or the desire to make the effort, he will slide.

I’m waiting to see what he decides.  Waiting to follow his lead.  Like dancing.

UPDATE: More and more I think he’s not coming out of this.

The hospice nurse on call Thursday night gave me “the talk” about how to stop swallowing means to start shutting down.  “You may begin to see other changes . . .”

J is just somnolent.  He wakes up and communicates lucidly for about one minute, maybe takes a few spoonfuls or sips of something, then the effort seems to exhaust him and he either loses consciousness with his eyes wide open — you can wave your hand in front of them, call his name and get no reaction — or his eyes roll up in his head and close again.

It’s brutally hard, maybe impossible, for me to take care of him in this state.  I used to say when I had to turn or move him, “I don’t have anyone to help me but you,” and in fact only his cooperation, however minimal at times, made it possible for me to care for him (mostly) alone.  I’d have him reach across himself to hold on to the bed railing while I tugged on a draw sheet under him to turn him on his side.  Then when it came time to roll him to the other side, I’d have him bend his knees and just think about rolling onto his back; that alone would incline his body to go that way (a Feldenkrais insight).  Then I’d have him raise his arms straight up toward the ceiling so that their weight, going in the same direction as his knees, would help me roll him over as a unit.  I could pull him up towards the head of the bed, when he’d slid down too far, by tilting the bed head downward and tugging on the sheet while he lifted himself slightly using the “trapeze,” the triangle that hangs on a chain from a bar over the bed.  He can’t do any of those things now; he’s completely inert, and I can barely budge him.  Even if he understands and is willing for a moment, he passes out again before he can complete the thought.

I hate to put him back in the hospice inpatient facility, because it was probably his bad experience there while I was in Chicago that got him down enough to trigger the shingles (although it had to be something, sometime).  But this may be impossible for me to handle without much more help.  Maybe they’ll provide more home help.  Or maybe the facility is better at taking care of a really sick person than one who’s conscious and just “parked.”  Maybe he won’t know or care where he is.  This apartment has never been “home” to him anyway.  Those moments when he wakes up and sees me and the cats could be partially recreated in the facility.  Family members can sleep there, and pets can visit.  Buzzy, at least, would eat it up.

UPDATE 2: Well, I’m adapting, figuring out how to do some of these new things, or old things in new ways.  Also, two friends met through karate — young parents in their 30s — read about our situation on Facebook and came over to see how they could help out, and are coming back tomorrow.  That helped immeasurably.  I had help laying J down and sliding him up the bed, and even better, I had the kind of company where you start pulling out books and Googling things and showing them to each other.


  1. reader_iam said,

    But it’s as if he’s pondering whether it’s worth the effort to stay here.

    Annie, please forgive me if this is offensive or hurtful, but isn’t this what he’s been doing, in some ways and in some sense, for many, many decades now, since the earliest, the central disruption of his Life, so long ago?

  2. reader_iam said,

    And–again, please, please forgive me if I’m being offensive (yet it’s OK if you wouldn’t)–about your use of the word “hovering”! Is the implied conflicted, tangled anguish in this post more about him or about you? What is “hovering” (a word which has more than one meaning, and often layers its meanings within individual people’s experiences) and regarding “whom” is the hovering intrusive and scary? I know I’m not putting it well and, regardless, feel free to knock me on my ass if I’m poking, even intruding, where I ought not.

    From the day I “met” you, I found the story of Jacques, and of you, and of Jacques&you, so compelling. So compelling. But while I have steadily been concerned about Jacques, I’m mostly worried about you. (I suppose that one could say that, in my mind, I’ve been doing a certain kind of hovering, me own self, however sporadically, the past several years.) This post of yours, in tandem with a few others, increases the worry.

    Whatever Jacques “decides” this time, you’re not going to take it as the definitive comment, the overriding judgment or the last word on your relationship and all the loving care you’ve poured into his life, are you?

    Warmest regards ….


  3. amba12 said,

    I meant “hovering” in the sense of “suspended,” “could go either way.” Not intrusive and scary. Sort of like a hawk balancing on a thermal — depending on which way it angles its wings, it may slide off to the east or the west. Or to make the metaphor more fitting (I love to torture metaphors), in this case the hawk would have to flap its wings to fly east, upwind.

    Anyway, there’s a sense of suspended animation right now, of holding my breath (to talk frankly about me) to see which way he’ll go, this time. Is this going to be it, or is he going to come back again, as he has many, many times before?

    Yes, he has been hovering, in a sense, since he lost his home and family — the quintessential displaced person — and while he waited for the restoration to his rightful position, the landed, no longer dispossessed position from which he could function, that in his mind depended on his book being made into a movie, which, with heavy irony, may actually happen only now, when he is barely aware of it.

    But he has never been hovering in regard to life. He was completely at home in life if nowhere else. He always had one eye on death, he was certainly less in denial about that than most of us, having buried friends with his own hands, but no matter how it tried, and it has tried several times, it couldn’t get him.

    He always said he hated death, but I don’t think he fears it. And his state of mind is gently protective. He can go live in his childhood if he wants, and often does. Right now he mostly wants to be comfortable. So that’s what we’re going for.

    I feel sort of ready for anything. The only hard thing is so totally not knowing what it’s going to be, just now. If he wants to go on I’m down with it, if he’s ready to let go, if I have to I can do that too.

    If I remember correctly, a gypsy (and not just ANY gypsy, the mother of the bulibasha of Sibiu), once told us he would live to be 82 (the age he is now). Then she drew a card for me, caught her breath and said “Ooh! O suta fara doi!”

    One hundred minus two.

  4. amba12 said,

    P.S. I appreciate your “hovering.” It feels sheltering.

  5. wj said,

    I think one of life’s great mysteries is when and why someone decides that living is no longer worth the effort. (And, obviously, this only applies to decisions, not external events. Although I think that the “decision” can be conscious or unconscious.)

    Especially at the end of a long life, I can see a couple of possible reasons:

    1) someone who is in pain can just decide that the struggle is no long worth it. They just let go.
    That, approximately, is what happened with my father. Several decades of heavy smoking trashed his lungs, and a man who had been very athletic spend the last decade or two of his life having to haul around an oxygen tank. But eventually, he decided (thanks, I believe, to the growing pain) that it was time to go. So one day after lunch he said to my mother “I know what I’m doing,” went in and lay down on the bed, and never woke up. Less than a day later, he was gone.

    2) I have seen others who just lost interest. They had done everything in their lives that they wanted to do; and had no continuing interests to keep them engaged. So they just ran down.

    No doubt others can come up with additional scenarios. But those are the two that I have encountered most often.

  6. amba12 said,

    It’s amazing when people “call it,” or make a decision like that.

    I’ve heard of and seen cats hold on and wait to die until someone (in two cases, I) came home.

  7. A said,

    If you can’t change his position, pressure sores can develop pretty fast, as I’m sure you know.
    You need daily assistance, whether hospice workers come to you where you are or J must go where there are more hands to help. Thinking of you.

  8. amba12 said,

    I know. I’ve been changing it, but am just barely able to.

  9. Randy said,

    I hate to admit that I’ve hesitated responding to your recent posts for fear of saying the wrong thing or saying something the wrong way. FWIW, what the hospice nurse said rings true. A makes a good point. Am concerned you may end up physically injured now that J. is incapable of assisting. I understand it is not what you want, but it sure sounds like the hospice is the best place for both J. and you at this time. As you say, you and the cats can visit as often and long as you like, and in his infrequent lucid moments he will know you are there.

  10. amba12 said,

    Don’t worry, Randy, reader, I’m not fragile or hypersensitive (at least as far as I know). You’re extremely unlikely to say anything that offends me (particularly with Ruthmary setting such high standards for offense). My first trauma response is to become numb rather than raw.

    I definitely need more physical help, one way or another, whether it’s at home or in the hospice facility. It’s the weekend, and the team that knows us best is off duty. I’ll give it one more day before conferencing.

  11. reader_iam said,

    !!!!!!!!!!!!!!!!!!!!!!!!!!!—>Update 2

    :,,,, )

  12. PatHMV said,

    I remember when my grandmother was in the hospital, in a drug-induced coma while they tried to figure out how to take on the infection that seemed to be killing her. One day, I was alone with her in the room when she came to, a little bit. She couldn’t communicate because of the respirator, of course, but you can communicate the most important things with your eyes. We were very close; I was her first grand child, and born on her birthday. I told her, in tears, that I wasn’t ready for her to go. She told me, with her eyes, that she wasn’t either. A few days later, they amputated her leg, and she got beat the infection almost immediately, and had several more very good years. Sometimes, people hold on not because they’re not ready, but because they know others are not yet prepared to go on without them.

    Annie, I haven’t been writing much, but know that I’ve been paying attention, and you and J are never far from my thoughts.

  13. amba12 said,

    I have to say he seems just a touch better tonight, or at least to have stabilized in this new place. Maybe it’s just that he rallies to be social for a couple of minutes when faced with people other than me. I’m like a part of himself, plus I’m always nagging him with medicated yogurt and ice water and questions about whether it hurts. But he seems just a wee bit more present or conscious.

    I’m also trying to get his Sinemet (potentiated L-dopa) into him, against the advice of hospice who want to prioritize comfort care only. I think the dopamine helps him swallow and sit up and that kind of thing.

    I’m trying to follow his lead.

  14. PatHMV said,

    The one thing I’m very sure of about this situation, new old friend, is that YOU know what’s best for him better than anybody else. There’s a time when you have to listen to outsiders with less emotional attachment, but I don’t think that you, as connected to him as you are, are the type to cling so tight that you will refuse to recognize the signs that it’s time. If you think he needs his Sinemet, then my money’s on him needing his Sinemet.

  15. amba12 said,

    I also had advice and “noodging” from our Feldenkrais/physical therapist friend, who urged me to keep giving the Sinemet to make it easier for him to swallow everything — including the comfort and antiviral/antibiotic meds the hospice people want me to prioritize! — as well as nutrition and fluids. Also, when he started to fall asleep with food in his mouth, I began appealing to his sense of humor, clowning around to get him to *GULP* with me.

    I want to give him every chance to do what he wants and needs to do, whether it’s stay or go.

    (For the record, Pat and I have taken to calling each other “new old friend” because we met recently after being blogfriends for several years — Pat went out of his way to come here on the way to visit his brother at Virginia Tech.)

  16. reader_iam said,

    Somewhat irrelevantly (and specifically NOT relevant to Jacques taking it; this is a recollection inspired by this post, NOT a comment on it, much less on Jacques or Annie):

    Among the key tasks, especially in latter times, when I was working as a part-time aid to a woman with Parkinson’s back in my college years and, occasionally, afterward, was to make sure she took her Sinemet on schedule. I am not going share here, much less go into detail now, all that went into what all of that was about, but what I will say is that it was an interesting experience to help someone realize they needed to swallow in order to, well, be able to swallow (among a whole number of things, of course). Even then, such real-life, confounding challenges of struck me as having surreal qualities, so profound ones.

  17. amba12 said,

    That’s tickling my mind with a comparison and I can’t yet put my mind’s finger on it. Maybe it’s an M.C. Escher drawing.

  18. Icepick said,

    I’m also trying to get his Sinemet (potentiated L-dopa) into him, against the advice of hospice who want to prioritize comfort care only.

    It’s a question of knowing the patient, as opposed to the professionals who (presumably) know the medicine. I ran into this problem repeatedly this last summer with my wife and her dozens (seeming) of doctors. (There were at least 19 that I knew of that actually saw her, not counting the unseen lab guys or the docs-in-training following the other docs. I’m pretty sure I missed a few, though.) The “pros” refused to acknowledge that they had zero or little knowledge of the patient herself. So unless they can provide a medically valid reason to not use Sinemet (such as negative reactions with other meds), keep it up.

  19. amba12 said,

    Yup. To be fair, they didn’t tell me not to give it. They just didn’t give it much importance. Suddenly I had ALL these meds to give him just when he was forgetting how to swallow: acyclovir, Augmentin, gabapentin, senna to avoid constipation from the low-dose morphine for the nerve pain . . . I had to get as much of it into him as I could with a limited window of opportunity. What they didn’t acknowledge (reader’s point!) is that Sinemet is the one that widens the window.

    God bless hospice, up to this point they have not held back anything to keep J alive and functioning — prescribed antibiotics, for instance — but they are oriented to helping people die comfortably, and they are not supposed to harbor people who aren’t on track to die. They have a little of that “death panels” pressure on them and, God bless them, many of them resist it! But it is too expensive for a longer-term option; there ought to be “hospice lite.” Imagine what the state would have saved by merely paying for the help I get from the CNAs — two people, one hour, three times a week.

    I am right on the cusp: I don’t want to try to force J to live, because he hasn’t got a lot to look forward to. But neither do I want to push him towards death. It’s his call.

  20. Maxwell said,

    Sometimes, people hold on not because they’re not ready, but because they know others are not yet prepared to go on without them.

    That was the story with my dad too, who had several improbable escapes from the cancer that eventually killed him, mostly to give the rest of us (especially my mom & brother) more time.

  21. amba12 said,

    I should amend that: he has more than ever to look forward to — Freeman Hunt’s husband, a very gifted director, wants to make a movie of his story, which is exactly what he always wanted — but he has mostly lost the ability to look forward to it. And losing the rest of that ability is what he doesn’t have to look forward to.

  22. amba12 said,

    There seems to be quite a surprising amount of will involved in the timing of these matters.

  23. wj said,

    I can understand telling someone that you are not ready for them to go. But I wonder if that is really the right thing to do.

    Certainly nobody should tell someone else that it is now time for them to go! But telling them that it is their decision, whichever way that they decide, seems like the better way. Not a condemnation of those who do say, “I’m not ready for you to go.” Just an alternate point of view.

  24. realpc said,

    “I don’t want to try to force J to live, because he hasn’t got a lot to look forward to. But neither do I want to push him towards death. It’s his call.”

    I would imagine that, on some level, he really knows what is going on. His mind is all there, somewhere, and I think he can make the decision. Maybe he’s been hanging on because he’s afraid you would be lost without him, which is true. So if you can reassure him that you will be ok, and will always love him no matter what, then maybe he can let go.

    I mean, I really don’t know, I’m just guessing. But did you ever think he might be staying alive mainly out of consideration for you?

  25. Peter Hoh said,

    Don’t have much to add, other than to say that you and Jacques are in my thoughts and prayers.

    Trust yourself. Like Pat said, your gut feelings are in tune with J.

    We found the hospice nurses to be great. Frankly, I suspect that if we had started on hospice earlier, my father-in-law might have lived longer.

  26. amba12 said,

    real, I think he’s been staying alive because his constitution is so strong, and because I and the cats and good jazz and the karate dojo and good food still gave him a little bit of a reason for living. But it wasn’t much of a life anymore, even before the shingles.

  27. amba12 said,

    Peter, I just spoke to the hospice nurse and learned that I can keep him at home and get a daily visit from at least one certified nurse assistant, who can help me turn and bathe him. I feel better about that than about putting him back in the hospice facility that caused him so much distress. I suspect my leaving him there while I went to Chicago precipitated the attack of shingles; they weren’t really equipped to take care of someone his size who was still well enough to need to get up and sit in his wheelchair every day; they plunked him in his wheelchair undressed, on his tailbone, and he got a pressure sore in 4 nights that he hadn’t gotten in 4 years.

    I wish I had been able to afford to leave him home with a round-the-clock caregiver, as I always have before. But I’m not torturing myself over it. He might have gotten the shingles anyway, just from general decline or the change of season or . . . It had to be something sometime.

  28. Peter Hoh said,

    It’s great that you are going to be getting a daily visit.

    Hospice provided my father-in-law with an air mattress that constantly changed to reduce the chance of developing bed sores. It’s hard to describe — it had some sort of programmable pump and there were different channels that inflated or deflated, so that the points of greatest pressure were constantly changing.

  29. amba12 said,

    Jacques was provided with one of those by hospice early on — but the cats immediately punched a hole in it. Now we have a plain one.

  30. realpc said,

    “I think he’s been staying alive because his constitution is so strong, and because I and the cats and good jazz and the karate dojo and good food still gave him a little bit of a reason for living. ”

    My theory is more romantic. I think he stayed because he wants to be with you, and because he’s afraid to leave you alone. The reasons you gave might be part of it, but you are underestimating how connected your souls are. His brain isn’t working, but his mind is. If your car is all rusty and falling apart, you can’t drive it anywhere. That doesn’t mean there is anything wrong with the driver, just the car. J’s mind is still a good driver, but he can’t make the car do what he wants.

    So all the subtle and intelligent thoughts are still there, he just can’t express them.

    This is the spiritual, and alternative science, point of view. The mind and the brain are different things. The mind uses the brain to function in this world.

  31. Melinda said,

    the cats immediately punched a hole in it

    Good thing it wasn’t a water bed.

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