I’m In Shock.

September 11, 2009 at 11:25 am (By Amba) ()

It seems as if, just like that, J has been accepted into Duke Hospice.

It was recommended to me to have him evaluated for it, and his doctor was willing to refer him, largely for my sake.  The common perception of hospice is that it’s for the terminally ill with less than six months to live, but that’s no longer strictly accurate.  Having an incurable, chronic, progressive (even slowly progressive) illness that admits of only palliative care can be enough, though they reevaluate you every six months.  I thought that J’s relative alertness and general health might disqualify him, but his degree of helplessness, incontinence, and dementia may have overridden that.  The nurse who came to evaluate him seems to have assumed from the get-go that he was in.  (Seems.  I’ll let you know if they change their minds.  But it doesn’t look like it.)

This may mean that someone will come to bathe him and change the bed as many as five times a week.  It means that we will no longer have to pay even copays for covered medications.  (Screen Actors Guild’s health plan drug program has been providing them, already a great break; but in hospice, Medicare covers them 100%.)  When the intake nurse went out to her car and brought in three bags of bed pads and adult diapers, and said “You won’t have to buy these any more,” I thought I had died and gone to heaven.  If I don’t have to buy those, I can hire someone to take care of him once a week so I can go out.

It means that if he gets agitated in the middle of the night, as he occasionally does — demanding to go outside and see if I haven’t been lying and he isn’t actually in Greenwich Village — I’ll have someone to call for advice, and an emergency supply of anti-anxiety meds in the house.  (You know me, the anti-drug — but hey.)

They have a small respite facility, which means that if I ever need or want to get away for five days — for medical, family, or burnout reasons — and there’s a bed open, he could stay there and be cared for around the clock.

For a compulsively self-reliant, stoical type like me, the prospect of having these kinds of help is about as believable as being teleported to Oz by a tornado.  I won’t believe it for a while.  Then I’ll feel guilty for adding to the deficit.  And then I’ll get the bends.


  1. david said,

    What a blessing. For you both.

  2. PatHMV said,

    That’s such wonderful news!

  3. Randy said,

    Wonderful! Realize nothing said will stop you feeling guilty, so please remember someone said not to be so silly when you do ;-)

  4. michael reynolds said,

    I guess this is in the category of fraught good news.

    Big adjustment coming for you. Keep your sense of humor. Write about it. Don’t think you’ll adjust instantly.

  5. amba12 said,

    Wise guys. Literally.

  6. realpc said,

    Don’t feel guilty, you need and deserve this and a lot more.

  7. Donna B. said,

    This is excellent news.

  8. Charlie (Colorado) said,

    Mazeltov! I’ve wondered for a while about this.

  9. Peter Hoh said,

    I hope that you find the hospice nurses to be as compassionate and as skilled as the hospice nurses I have known.

  10. Bill Rogers said,

    Over the past few years, I have learned to follow your postings with appreciation.
    Although we have had a brief exchange, I do not know you personally. Yet, as I observed your heroic efforts to care for J, I have experienced growing concerns for you and your well being.
    While there have been inclinations to get in my car and drive from Charlotte, NC to check on you and J, I have my own medical issues in my senior years that limit me.
    Upon reading this news of hospice care, I experienced an audible sigh of relief.
    It is time for hospice care.

  11. amba12 said,

    The woman who came to do the intake was marvelous. Of course, she won’t be his nurse –we’ll meet her Moday — but it’s a good sign.

    I really am in shock. It’s funny that the thing I’ve fixated on as miraculous is the woman walking in with three bags of incontinence supplies, handing them to me and saying, “You won’t have to pay for these any more.”

  12. Peter Hoh said,

    We often take great comfort in small things. Comprehending grace in larger terms might blow our minds.

  13. amba12 said,

    Thank you, Bill. Thank you all for supporting this. I had thought of hospice as being for people who are terminal, and he’s so not. So I didn’t think he would qualify. But it’s appropriate in that palliative care is all that’s possible, and he needs a lot of just the most basic kinds.

    I got straight with them that at this stage he would still be treated with antibiotics if he got pneumonia.

  14. Melinda said,

    Not sure if “far out” is the right etiquette, but it’s the first thing I said reading your news!

    And Peter’s right…it’s the little things that get to you. And also they make you realize that you didn’t know just how much you were doing until you don’t have to do 110% of it anymore.

  15. wj said,

    I am so relieved for you! I suspect that initially the biggest plus will be just to know that you can take an occasional few days away will be a relief — even if you haven’t used it.

    And, of course, having an occasional helping hand at home will be wonderful, too.

  16. Ally said,

    Just back from total isolation on a backpack, this is the best news I could possibly have learned. You deserve it.

  17. Ennui said,

    Great news. And for heaven’s sake don’t feel guilty. You and Jacques paid in over a lifetime, right? That’s how it works.

  18. sail on said,

    Hallelujah! The best news for you & for Jacques.

  19. Rod said,

    Amba: I join the chorus cheering you on. We have outsourced a great deal of the care of the terminally ill to their families, and it is encouraging to realize that a support system is being created for the caregivers. Note that it is not over-the-top, ramped up super care, but little things like a break on medications, bed pads, and a weekly visit from a nurse. These little kindnesses can make the difference between surviving caregiving and being broken by it.

    You have earned a break.

  20. Mom said,

    A measure–but only one–of how we love, treasure, and admire you is the awe and delight with which we greet the news, Annie dear. I have awakened in the middle of the night (maybe a psychic response?) and been frightened for you, for the unending physical as well as emotional demands J’s illness has made on you; feared for YOUR stamina, mental and physical, shuddered at the limitless prospect of years of loneliness and isolation that your caring for J imposeds on you. And now this! This wonder! Under whose auspices does this come? Duke U’s? Allow yourself time to accomodate to the sea-change; I know you–you won’t let your guard down; you will take this bonanza one baby step at a time. But what a wonder, what a lovely, lovely prospect in myriad ways. May it go well!

  21. amba12 said,

    Thank you, Rod. Fascinating and ironic (no doubt, so intended) language: “outsourced the care of the terminally ill to their families.” That’s who always did it, traditionally! Who else?? I saw J’s cousins in Romania doing it. (That, and seeing my own maternal grandparents both die in nursing homes, must have influenced me.) The big difference — well, there were two big differences. The really big one was that families were extended, so there were a lot more people around. When I began visiting Romania, J’s paternal aunt Rosa, who must have been in her 80s, was bedridden with a broken hip in the house at the back of the courtyard. There was no question of having surgery and rehab; when an osteoporotic older woman fell, she often spent the rest of her life in bed. Her daughter Lilli, J’s 15-years-older first cousin, who was then in her early 60s, was tending to her. Also present in the same house, however, were two out of Lilli’s three daughters and their husbands. The third daughter plus husband lived a block away with the husband’s parents. The daughters had little kids, and since the young adults both male and female were required in Communist Romania to work, Lilli was also taking care of the two daughters’ little kids, her grandkids. But there was a safe, enclosed courtyard where they could play for 3/4 of the year, and she had constant company and help. (N.b. As brutally hard as she worked most of her life — born privileged yet a hard-working homemaker, then forced by the Communists to work in a factory spray-painting furniture with a toxic spray gun that froze to her hands in winter, Lilli is still alive at 96. She lives in Germany with the same two daughters, and their grown kids live nearby.) Rosa, if I recall correctly, lived for two years after breaking her hip.

    On J’s mother’s side, his cousin Erna took care of her mother Anni (J’s aunt) at home with metastatic breast cancer, an illness that also lasted at least two years. She had moved to another city with her husband and one child and was much more isolated. Life for some was becoming more “modern” in that respect. Erna and her grown son now live together in Germany (people do live with or near their parents all their lives, in Europe).

    (An interesting side note: I had to go back and correct my automatic habit of saying “West Germany.”)

    The other big change is that we keep people alive much longer. They just didn’t have that option in Romania in the 1970s. They did have antibiotics, to an extent so limited it’s hard for us to imagine, but when an elderly person got pneumonia that was usually it. There were people who lived well into their 90s nonetheless — they were just tough sons and daughters of bitches.

  22. amba12 said,

    Hi Mom! Yes, it’s Duke. J’s doctor is at UNC and they also have a hospice program, but Duke was recommended to me because they have this respite facility (which happens to be right across from one of the swimming pools we go to, in Hillsborough). They don’t have a problem working with UNC docs. After all, it ain’t football.

    Thank you for your sweet good wishes. I think I’m really the one in hospice here. It was clearly done for my sake, which is also for his sake in the sense that (as described in my previous comment) his care really needs to be spread around a bit among more than one person — he will be cared for better — and also, I will be preserved. This clearly could go on quite a lot longer and it won’t get easier. Just the physical demands could do me in if I continued to try to do it mostly alone.

    An interesting change in my thinking as a result of this change, which I am wary of: I had not really been thinking of J as a sick man, but as a man who happened to have an illness. A subtle distinction, I know. It’s a kind of denial but it had its benefits. I continued to expect certain things of him. I realized I’ve already given in just a shade more to thinking of him as the “patient.” I don’t much like that though there’s a truth to it. I’ll have to try to strike a balance.

  23. Dad (harry gottlieb) said,

    Annie: In this world of huge suffering, there has been so much good news for us in 2009. There was the birth of greatgranddaughter Lucy; There is the joy of Elizabeth’s new church job in Denver, and now this grerat news about you, Jacques, and the Duke Hospice. What a blessing!


  24. amba12 said,

    And don’t forget Berj’s eye!!

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