Sure Enough . . .

October 14, 2009 at 6:53 pm (By Amba)

. . . I got the distant early warning from the nurse today that they may not be able to keep us on hospice.

J just isn’t sick enough. He communicates.  He has a good appetite.  He still gets out of the house (albeit not under his own power).  He doesn’t have pain.

(And I’m not broken down enough.  Not all used up yet, not by a long shot.  I could take care of him alone again if I had to.  After all, I was doing it just a month ago.)

They want to keep us.  They’re going to try.  They think we need and deserve the help.  But they have legal guidelines they have to follow, and we’re in a gray area at best.  Or should I say, at worst.

This is one of those silly situations where good news is bad news and bad news is good news.

Of course, the irony is that the hospice people usually see him at his best — because he’s so happy to see someone other than me.  He comes to life.  He puts on his “company face.”  He flirts, he kisses hands (I swear to God), he makes ’em laugh.  He loves the sociality and attention.  He comes from a village where there are people, neighbors and family members, around all the time.  This is a tiny step closer to that.

I’ve been prepared for this possibility; I was the one who never thought he’d qualify for hospice in the first place (especially since starting Namenda, the drug that has made him more present and calm if no less confused).  I swore that I would make the most of it while it lasted, and store some reserves.  It hasn’t been a huge change, anyway.  I’m still taking care of him alone most of the time.    There are just three things I will miss if we get kicked out:

  • Having someone else do some of the heavy lifting just three times a week.  It has reduced the repetitive stress to my shoulders, in particular, and I’ve felt the difference.
  • Free incontinence supplies.  This I will mourn.
  • Hardest of all will be returning to isolation.

Of course, we may see a bit more of our busy friends again, whom we’re now seeing somewhat less of because they assume we’re all right, they don’t have to worry about us, we’re being taken care of! And maybe we’ll make more of an effort to get out and see them if the alternative is hours and hours of four walls and each other.  Plus, the nurse said she’ll come visit us as a friend.  The volunteer might, too.

But I’m getting ahead of myself; it ain’t over till it’s over.


  1. realpc said,

    I can’t imagine how they could think you don’t need help. That’s really crazy. Your husband can’t do anything for himself.

  2. amba12 said,

    They don’t think we don’t need help! They know we need help, they think we deserve it, and they want to provide it. But they are bound by legal guidelines, and they can bend them only so much. Believe me, they are trying, within the law.

    We are simply in a gray area. At this point, J is chronically rather than terminally ill. There are no basic services for people in such conditions for the simple reason that it would go on too long and cost too much. I understand that. That’s why, if you don’t have long-term care insurance or much money, either family members do it, or you pauperize yourself and go on Medicaid and into a nursing home. There’s no good solution.

    But, as I said, I’m anticipating the worst to be prepared for it. It ain’t over yet.

  3. realpc said,

    I hope they find a way to continue providing the help. There really is something wrong with the current laws if people who obviously need help don’t qualify.

  4. Courtney Haynes said,

    I was so happy for you that the hospice thing was working well. I’m sorry to hear you find yourselves in an uncomfortable gray area as far as eligibility. I don’t suppose you could coach J to not be so darned charming when the hospice workers show up. :o)
    Have you already checked to see if he is eligible for some affordable health care workers from another source? (I expect you have since you are knowledgable and resourceful.) I hope your present situation lasts as long as possible since it is working for you both.

  5. PatHMV said,

    Well, if worse comes to worst, I hope the rebound effect on you isn’t too bad.

  6. amba12 said,

    I am and have been prepared, or at least I think I am.

  7. amba12 said,

    Thanks, Courtney. The nurse said that if worse came to worst, she would help us investigate what else is available.

  8. Donna B. said,

    I am so sorry to hear that legalities may be getting in the way of what you need. And, IMHO, what you deserve.

    Medicare is designed to care for the non-existent “perfect” elderly person who is healthy and mobile until 6 months before he or she dies.

    Ignore me… because I am bitter about medical issues right now. Don’t let me drag you down just because I think Medicare, Tricare, and Humana suck.

    I shall go crawl in my hole now and lick my bureaucratically inflicted wounds.

  9. realpc said,

    Medicaid can provide some really great services — the only problem is the patient can’t have more than $3,000. My mother had the “good sense” not to save any money, so now she gets great benefits.

    Those of us who are “irresponsible” enough to save for our old age may have to suffer the consequences.

  10. PatHMV said,

    realpc, there’s actually a quirk in those Medicaid rules. If you become eligible for Medicaid because you qualify for Social Security disability, then your spouse, at least, can retain significant personal assets. I don’t know all the details, just enough to know that if you can get Medicaid qualified because of SSI instead of just because of being poor, there’s some different eligibility rules.

  11. amba12 said,

    Pat, though, I suspect that if you’re already on Medicare for being old, you can’t ALSO be on it for disability. Similarly, I was told at one point that at this age, VA benefits are really just Medicare.

  12. Donna B. said,

    VA benefits have one great benefit that Medicare doesn’t — free medications. One can be on Medicare and Medicaid both, but it’s often limited to Medicaid paying the Part B premium. This is because Social Security payments are generally greater than the poverty line which qualifies one for “standard” Medicaid.

    It’s very difficult for an adult to get any Medicaid coverage unless they are near penniless and on SSI, SSDI or have a dependent under age 18.

    As far as being on SS or SSI, the SSI cash benefits are quite low compared to regular Social Security and you are right that one can’t be on both. AND, unless you are in need of a nursing home, Medicaid benefits are quite restricted, especially where medication is concerned. And, of course there’s the problem of finding a provider that will accept Medicaid.

  13. amba12 said,

    On medications, we are very fortunate. FIrst of all, J doesn’t take that many. But most of all, he has Screen Actors Guild as his secondary health insurance, and they have a mail order drug program with very reasonable copays. So that, which would be a huge problem for most elders, is not a big problem for us.

  14. Donna B. said,

    You are fortunate (as are we) to have a secondary insurance to pick up what Medicare does not pay.

    Yet… no insurance can pay for what is actually needed for any one individual. The plans must be “one size fits all” or it wouldn’t be possible to have them.

  15. reader_iam said,

    It seems to me there are plenty of consequences to go all the way around, in or out of, and quite aside from, the sprinkled quotation marks in this thread or the words–or to be more precise, the approximations–contained therein.


    Annie: A heartfelt () , and then some.

  16. realpc said,

    ” I suspect that if you’re already on Medicare for being old, you can’t ALSO be on it for disability. ”

    Not true! My mother is both old and disabled, and she gets SS and also SSI! So please check to see if J can get SSI — he might be eligible for a lot more than you think! My mother was old long before she became classified as disabled. I am not sure how it happened, or I don’t remember. But I know she gets both.

  17. realpc said,

    And of course this all varies by state.

  18. jason said,

    Oh, Annie… I’m sorry to hear this. I hope it’s a false alarm and they keep J (and by proxy, you) in the program.

  19. Norma said,

    I’m sorry you’re in this situation. You’ve given your readers a lot to think about–especially the loneliness of the caregiver. Thank you for sharing.

  20. Ennui said,

    Poop. Talk about perverse incentives. I hope it turns out well.

  21. amba12 said,

    Right! It says you have to be pitiful to get any attention!

  22. amba12 said,

    And if you can take care of yourself, well then, you can just take care of yourself!

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