Hospice and Lewy Body Dementia

June 19, 2011 at 11:08 am (By Amba) (, , , )

The first of two posts cannibalized from e-mails. 

This one, about our hospice experience, was to an e-mail list of spouses of people with the same illness J had.  Hospice is often the only way of getting paid-for help with the crushing burden of caring for someone at home with this illness, which is prolonged, progressive, ultimately terminal, and meanwhile both physically disabling and dementing.  My point is that this doesn’t make sense: for all but the last stage of the disease, the help that matters most could be provided for a fraction of the cost.  My secondary point is that our particular hospice’s policy on “boundaries” is an example of the clumsy overprofessionalization of human services, and that there’s a way to accomplish the same aim more gracefully.

Jacques was in Stage 4-ever and I didn’t believe he would qualify for hospice, but someone on the LBD forum warned me that I was burning out and strongly advised me to ask his neurologist about it.  The neurologist said he would absolutely recommend it, that Lewy is a terminal disease, and that J’s degree of helplessness warranted it (even though he was still communicating, he was not able to walk or to do anything for himself).  In practice it was a little tricky to define the category that he fit into — and in fact I don’t remember what it was — but the hospice doctor and nurses really, really went to bat for us.  They managed to keep him on hospice for a year, gathering little details — like the fact that I had to support him with pillows when I sat him up on the side of the bed or he would topple over — that would support their case.

It got a little weird towards the end.  The aides had begun to hurt their backs taking care of him (I never did because of my Feldenkrais Method movement training, which I’m going to return to now; that is what makes me want to develop a weekend workshop for aides and caregivers).  Then, because I was going to Chicago for a family gathering and (my job being in suspension) couldn’t afford a round-the-clock home health aide, I put him into the hospice inpatient facility for a respite stay for 4 nights in early to mid-September.  Even though it was Duke, they took lousy care of him, and the stress may have contributed to his getting shingles a couple of weeks later.  I don’t entirely blame them — they were not used to taking care of someone as heavy and paradoxically robust (though helpless) as he was.

The home hospice team were angry (the aides) and, I think, embarrassed (the nurse and maybe the doctor) by his bad experience there, and coincidentally, another recertification period was coming up and I think they were under pressure from Medicare to kick him off hospice — he was too “stable” (which they called “the S-word” — shhhh!  don’t say it!).  Just then, he got shingles, was hospitalized for a week on IV acyclovir, and although the shingles healed, as you know, he never recovered.

At home, at first, he had aides coming five days a week.  There was a kind of climax of activity and solicitude, a brief window of post-hospital, no-holds-barred Medicare largesse, and an expectation that he would soon decisively go one way or the other.  And indeed, a few nights after he got home from the hospital, on a Friday night, he had a lot of secretions in his airway and the hospice people thought this was it.  A nurse on call on the phone, a stranger to me, came and saw him and told me ominously that they were “death secretions” and I could expect to see “other changes.” But it was a false alarm.  He made a mini-comeback, and the hospice people sort of threw up their hands, rolled their eyes — and backed off, at the very time when you’d think they’d be most attentive and supportive.  The nurse told me wearily that patients with dementia like him could “go on like this for months” (and we know that can be true; on our e-mail list we’ve seen people be admitted to hospice and die within two weeks, or live on for three or more years, with many such “lifelike” death rehearsals).  They cut back his home health aide visits to one aide three times a week, they were no longer going to try to get him up (they were right about that), and the nurse sort of detached herself.  It felt to me almost as if at this point they were annoyed at him for not getting on with it.  None of his team were on duty when he died (on another Friday night), again a strange nurse on call came to “call” it, and afterwards his regular nurse and the doctor abruptly cut off all contact with me, as is their practice — a matter of “boundaries,” they say.  They turn you over to “bereavement” — well, Jacques and I had become lifelong friends with a couple of his surgeons, we were not big on “boundaries,” and I was probably as bereaved by not getting to have even one “closure” meeting with my hospice team as by anything. The aides were much more human; one came to visit me once, and our mainstay came to his little memorial gathering.  I gave her his watch.  At Christmas time I wanted to send each of them the maximum of $25 I had been told I could give them as an annual gift, but when I asked about this on the phone I was told no such thing was allowed, leaving me (unable to remember who told me that was OK — a nurse, I think) fearing that I had given the impression it was the aides who had told me that.  I didn’t want to get them in trouble for nothing.  They never asked me for anything.

So it ended weirdly.  I wrote to the nurse and the doctor once or twice since and got no answer.  But what the hell — it was a wonderful support system for us, saved my health, gave J a warm kind of social life to look forward to.

In retrospect, an intermediate level of palliative care, that could have been supplied for half the cost or less of hospice, would have been appropriate for much of that time.  In fact, if I could have accessed just a fraction of the cost of hospice from Medicare to pay for just the most important part of it — the two aides who came three times a week to bathe him, dress him, and get him up, thus relieving the strain on me (and the isolation for both of us) just enough to make the crucial difference — it would have saved Medicare an enormous amount of money.  One of my e-mails to the doctor was to suggest this, telling her (anonymously, of course) about some of the Lewy patients on our list who have lived for years in an apparent near-death condition.

Sorry to go on so long.  The main point I started out with was that it is well understood that Lewy is a terminal disease and you can often get hospice help sooner and for longer than you’d think — and even if there ideally ought to be an intermediate option, it is, under current circumstances, the best thing that could happen to you.

*     *     *

[A nurse, now caregiver, on the list wrote me that when she worked on hospice in the past, she’d kept in touch with deceased patients’ families for weeks or even months afterwards.]

How human things used to be!  I think it’s probably some MSW-school theory — “boundaries,” “closure.”  I can see that they want to protect hospice personnel from having their lives cluttered up by former patients’ families hanging on to them when they need to focus on current patients.  I can also see that in some cases that attachment could become a real problem.  But I think they could find a more human way of handling it — for ALL concerned.  They just cut off contact so brusquely (though they confide in you beforehand why they’ll have to do that and that they’ll find it hard, too).  It seemed to me that one simple good idea might be to have one (if they have to have a jargony name for it) “closure meeting” with the whole team and the family to debrief about the death (especially if the hospice team wasn’t there!! die on a Friday night, and all you can get is strangers!) and to say thank you and goodbye.

And, no, I didn’t know “bereavement” from a hole in the ground.  They were total strangers — professionals at “handling” grief.  The woman who called me was very nice and approachable, that wasn’t the problem.  I would gladly have met her if I’d had time.  It was that there was something demeaning about being “handed over,” with tongs.  Maybe it was harder and messier before when the “boundaries” weren’t so neatly and artificially drawn.  But it was also more real.

Funny story:  my close friends (the karate teacher and his girlfriend) came over after J died, and so did a hospice nurse I’d never met before, to certify the death.  My friends and I were a little giddy.  The nurse said something about getting in touch with “Bereavement” and I said, “What’s ‘Bereavement’?”  She said in the most lugubrious voice, “. . . Sadness.”


  1. Ron said,

    Your stories here remind me of much of what has happened to many professions: they’ve become conversations about themselves to themselves, and the “customers” are only obliquely referred to as people to be “serviced”. This sounds harsher than I mean it, but we’re testing the cultural limits of “professionalism.”

  2. A said,

    Oh, getting in touch with bereavement. The very language (is that language? is
    jargon language?) repels me. I’d rather get in touch with Samuel Beckett. The antithesis, I guess, of MSW-speak. (shudder)

    A happy father’s day to your father. I miss mine.

  3. Donna B. said,

    Double ditto to what Ron said. I would have used “clients” or “consumers” rather than “customers” since those are the terms I hear most often in the “helping” professions.

    Goodness, if I keep this up, there will be a shortage of “quotation marks” soon.

    I suppose had not most of the hospice personnel we dealt with when my stepmother was dying been relatives or friends, we might have experienced something similar. Perhaps one of the benefits of living one’s whole life in the same small town.

  4. amba12 said,

    Thanks. I am so incredibly lucky still to have him! They just went back to Chicago for the summer.

  5. karen said,

    I’m going to send this to the Hospice we have in our city nearby. I don’t really know their professional positions, having not dealt w/them or not having anyone close working for them, but this is such a valuable ~testimony~ and written in your usual fashion that can bring me to tears in a heartbeat, only to laugh in the next:0).

    Thank you for sharing your stories w/us, esp those about J.

  6. amba12 said,

    Thank you, Karen. I would really like to get the word around — especially about the first issue. Something short of (and less expensive than) hospice is desperately needed in cases like ours.

  7. mockturtle said,

    Ron, you are spot on!

  8. amba12 said,

    Let’s say I had been able to pay two aides $15 an hour each (more than hospice pays them, you can be sure!) to come three times a week for two hours. $180 a week, $720 a month, $8,640 a year. A year for the cost of 2-3 months of hospice. Medicare could throw in the incontinence supplies and an occasional few days’ respite stay and still save big-time in a case like ours. Granted, some people live a long time in the end stage, even without artificial nutrition (which in my opinion is cruel and pointless if someone is in a coma they’re not going to come out of). And some families simply cannot do the care at home with that relatively little help. My point is just that we could have managed for a long time with something less than full hospice, but hospice was all there was. Other people who own a home sell the home and give up everything they have to either pay for private care or qualify for Medicaid. It’s nuts.

  9. Ron said,

    Sadly, the people who know how to cut costs and the people who know how to give care….hate each others guts.

    FrankenCare is what we get…and we’re the ones who see the bolts in the neck.

  10. mockturtle said,

    When health care became an ‘industry’, we were in trouble.

  11. karen said,

    I told you about the conversation i had w/my sister- an RN working for Mental Health?

    She feels there’s just no choice on the part of Drs/nurses, etc to become what this society or ~TEH Rules~ say they have to be. I argued back about the passion of a healing profession that has lost it’s focus, it’s initial call- only to be seduced by $TEH Money$ & power- is twisted into an INDUSTRY(m-turtle, for sure)that cares little for the hurting and broken people it desires to help– & only for the consumer to be serviced in a detached, sterile and fragmented way resulting in anger and frustration, enough to go around- in as little time as possible(maybe that part is not to be helped- so many in need, so little time).

    I know i’m right. I rarely make that admission. I just feel it’s More Than>>> just an ideal or ideology. Clinics would be so nice- donation of time(pretty funny, amba- the above post of this one explains exactly why that’s practically impossible, eh?). My social, Catholic Conservatism rising(ideology, oooops)or my humanity radar going off in nostalgic whiplash?

    Were priorities easier to decide back in the 50’s- or maybe dedication was stronger or pressures not so great?? What? Society– communities took care of there own, or so i’m under the impression. We have such a disconnect when it comes to– our neighbor.

    Right now– i have a neighbor that i think has a detached retina(just a googled hunch)- and he’s quite the case. Full of pride and conflicting hypocrisies — heh– & broke?? Holy crap, puts ~hand to mouth~ in a whole new category. He says if he goes blind, it’s nothing a bullet won’t fix. I said better to have it checked out 1st and see if it can be healed before going all freaking Rambo/Atwood on us for it would surely suck pondscum to shoot yourself over something that could have been fixed. I offered to loan him money to get it looked at- he didn’t like that- it’s a pride thang. If he has something serious, he may well lose sight in his eye. Some people…

    It’s taken me so long to write this long-winded comment, pausing to feed the masses breakfast- that a miracle happened. My neighbor knocked on the door and asked for a little cash to go to the Dr’s to get his eye checked out!!!! What a blessing. Now, for a simple solution…

  12. amba12 said,

    A brother-in-law of mine had a detached retina. It was reattached — twice. Now it’s fine. If that is what it is, it can be fixed, but requires the person to take it easy for a while. Lifting heavy things, for example, can re-detach it.

    I think you convinced him, Karen! Good work.

    It would be great if the System were to blame for everything and individuals were innocent. That was Karl Marx’s assumption and look how that worked out. We seem to be our own worst enemies on every level.

  13. mockturtle said,

    Karen, I agree with your sister. Doctors and nurses are merely pawns of the INDUSTRY. A small practice will scramble to keep its head above water only to yield to the inevitable buyout by a large corporation. Just like banks. Non-medical professionals are running the show. The irony is that Medicare and Medicaid have, in large part, created this monster. But that’s another harangue.

  14. amba12 said,

    I had dinner with friends who believe in a single-payer system. I had dismissed that but I had to ponder. On the one hand, yes, profit motivates innovation. On the other hand, profit motivates prioritizing profit over any other value. Profit is often made by cutting costs at the expense of people. Nowadays, people need jobs so they can be motivated to be extra productive by fear. Reward is not necessary. Hospitals jack up what they charge insurance companies for, e.g., IV tubing, and keep to the bare minimum what they pay people like aides who often work hardest taking care of patients and have the most contact with them.

  15. karen said,

    But, mockturtle… these people ARE the INDUSTRY!!! W/out them, w/out their gift of healing– what is there but a corn-fed cow @the trough of INDUSTRY?

    I know all about feeding other industries– we farm. I know a little about feeding cows, too(smirk)&, trust me– they have to be well fed in order to ~put it in the pail~, so to speak. Yet, we opted out of the current, commercial industry to go organic w/a new set of rules. The rules, at times– are incoherent to the reality of individual situations, which is a whole ‘nother thread- but, if we are the ones being represented and our health care sucks– we can, together- change it.

    Love my optimism?? I think i’m having a roller coaster morning:0).

  16. Donna B. said,

    Medicare and Medicaid may be among the last bricks in building this monstrous health care industry — but doctors and hospitals themselves are responsible for the insurance foundation upon which it is all constructed: Blue Cross/Blue Shield.

    This was their solution to the problem of being paid in commodities and profound gratitude instead of cash. The main reason that single payer won’t work (as currently proposed) is that it is still based on an insurance model — and insurance is the problem.

  17. mockturtle said,

    Yes, that’s one reason–and I agree! Another reason is that it’s too large a country for a one-payer system. The bureaucracy would be out of control and fraud and abuse even more rampant than it is today [Trust me: Private insurance companies are far better at tracking costs than are Medicare & Medicaid.] I would much rather see a state-by-state program where the revenue would be collected at the federal level but apportioned to states. Each state would ration [yes, ration] their health care dollars according to its own unique population needs.

  18. mockturtle said,

    Each state would ration ITS health care dollars, not THEIR health care dollars. Hate not being able to edit a post after the fact…;-)

  19. karen said,

    Haven’t seen my neighbor again since this morning.

    Off to chores… (kinda funny story- i painted my nails w/Maeve last night and while milking this morning- the iodine dip changed my pearly colored nails to gold:0).)

  20. mockturtle said,

    the iodine dip changed my pearly colored nails to gold

  21. amba12 said,

    The Midas touch!

  22. karen said,

    My neighbor came to give us the low-down last night– he has diabetes really bad, so the specialist doc informed him and his eye ailments are a direct result. They never took his actual blood reading, mind– but, said that there is blood behind the eye he can’t see out of.

    They did a battery of tests @1100$/cost & then they laser(ed) the better eye to ~clean~ it for a cost of over 6000$. No insurance. Hopefully, he will find the proper assistance thru the state, i mean- aren’t they supposed to take care of people that have a hard time making a living anywhere near poverty level?

    He also needs a doctor and a good, thorough check up and nutritional advice.

    He’s 60.

  23. mockturtle said,

    Karen, is his diabetes being treated at all?

  24. karen said,

    Mockturtle- he didn’t even KNOW he had diabetes!!!

    You know– ignorance may be bliss- until it kills us, eh? When i googled eye problems/diseases- i thought that a torn retina fit the symptoms&never suspected that his eyes would go so fast. I saw him again today, and he seems up-beat, but he MUST find a doc ASAP and see what’s up and how to fix. Dietdietdiet- nutrition #1, exercise– he’s beyond heavy, mostly a huge belly- and he needs to care about himself. I’m hoping(& praying).

    Both my folks have sugar, my dad is insulin dependent. 3X/day. I’ve seen his sugar so low he’s been on the ground before- and it’s so scary. My dad is very active, both my folks are, and my mom is careful how she feeds them.

    At the risk of sounding down, but in hopes of a heads up from Randy… life is hard:0).

  25. A said,

    Lord, I had what may be a hypoglycemia scare today, came here for some distraction. And what do I get?

  26. karen said,

    Take care, A.

  27. amba12 said,

    *wince* sorry . . . I should put warning labels on ’em.

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