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.”

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You Think My Life is Hard?

March 1, 2010 at 1:17 am (By Amba) (, )

It’s a breeze!  This is what it was like in 2005 (slightly bowdlerized just to be polite).


[We had just come back from Moscow, from a karate tournament, where J was an honored elder and we had lots of strong young help.  But he was exhausted.  It was our last such trip.]

9/21  J is better today, but it’s been an uphill struggle.  Monday was the first day he was able to walk to the bathroom rather than ride in the wheelchair.  [But nothing was happening since we got back], so I gave him a stimulant suppository which had no apparent effect.  Then we got dressed to go to [the acupuncturist’s] for the first time.  I’d doubted he had the strength quite yet, but he wanted to go . . . We got down two flights, him mostly bumping down on his butt, when he said, “I have to go to the bathroom.”  So we turned around and started back up, him quickly so exhausted he could barely crawl up the stairs.  It took a long time, and when we got into our doorway, him rubber-legged and buckling, he [had an accident].  That was the least of our troubles  I got his pants off and provisionally cleared away, but then he really couldn’t stand up any more.  I covered a stool with a towel and shoved it half under him, but he wasn’t on it all the way and was half falling off.  He was also shoved up against the stove knobs and his body kept turning a burner on, and the black baking pan the coffeepot was standing on got hot and he burned his arm on it.  All this time I’m struggling desperately to keep him off the floor, we’re both smeared with shit, and he’s yelling at me “You’re killing me!” . . . So finally I somehow managed to get the wheelchair through the door and shove it up the single step from the kitchen and under his butt without it falling backward down the step.  Then I was able to wheel him to the bathroom and wash him (and the wheelchair) off.  We were both exhausted and soaked with sweat.  Good workout.

9/22  We got out to acupuncture yesterday, but when we got back J was too weak to get up the stairs.  Close to the 4th floor landing he collapsed and just lay on the stairs, and we had to call 911 to get help.  The strong young cops who came could barely help him.

9/26-7  We dared to go out to PT today.  J got in the shower quite nimbly, then needed to lie down for 5 minutes.  He got down the stairs OK, taking only the 2nd of 4 flights partly on his butt.  When we got back, climbing the stairs was a grueling Sisyphean ordeal, but we made it without help.  I dragged the wheelchair up each flight ahead of him so he could rest in it.  On the stairs, I felt as if I was doing most of the work, pushing him up.  On the 4th floor landing we got into an actual physical brawl.  I was trying to get him to move his foot so he’d be positioned at least partly over the wheelchair before he started to sit down, instead of squatting on air at the top of the stairs with feet frozen to the spot and knees buckling.  He perceived this only as maddening nagging.  I don’t know how it started but he was pulling my hair and we were flailing away at each other, trying to slap, kick, pinch, claw and bite.  It was ridiculously ineffectual, like a fight in a dream; we must not have wanted to really hurt each other.  The upshot of it was that I sort of tackled him and threw him into the wheelchair, half-unintentionally.

9/27-8  We went out to acupuncture today.  By the time we got there, J was already spent, dreamy with exhaustion.  When we got back, I had him sit in the car with me waiting for a 6 PM parking place to become legal; I canted the seat back so he could nap.  Even so, from the time we left the car on Sullivan and 4th [less than 2 blocks from home] to the time we got upstairs was 1 3/4 hours.

I’ve figured out a new, solid way to boost him up the stairs, with my right shoulder.  I basically fit it under his butt, and lock my right hand onto the vertical metal bars of the banister.  He is essentially sitting on my shoulder.  This feels secure, though it puts a lot of pressure on my knees.

At the top of each flight, though, he’s exhausted and panicked and frustrated and humiliated and confused, and heads for the wheelchair like a cow to the barn.  I’ve placed it off to the right, the only and closest place I can put it.  But heading for it puts him with his front toward the chair, his butt hanging out in space over the staircase, and his quads failing.  And he tries to sit down.  On nothing.  . . . When I try frantically to redirect him, he gets mean — says in a threatening voice, “Don’t drive me crazy, Annie or I’ll rap you!” . . . The best I can do is try to stay detached, soothing and calm, the way you would with a flailing, boneheaded horse.

He’s dreaming now — laughing in his sleep.  The lucky bastard.

9/28  J had his neurologist appointment today.  So we had to get up early.  He woke up of his own accord before 7, bright and clear. . . . He remembered [people].  He recited Schiller.  He got into the shower rather nimbly, without a lot of coaching.  He went down the stairs with ease.  When we got home, he went up the stairs with ease.  That is, I just put my hands under his sitz bones and assisted, rather than putting my shoulder under his butt and doing most of the work.  I had him rest in the wheelchair at the top of each flight, but he didn’t need to.

So of course, in shock from being whiplashed from one of his worst days to one of his best, I fell asleep and got a $65 parking ticket.

Was it something [the Korean acupuncturist] did?  She let blood from his scalp and fingers, gave him some herbs, and said, “He’ll be better tomorrow,” which was hard to believe.  Was it his good deep sleep —  “sleep that knits up the ravell’d sleave of care” — with laughing dreams?  The cool dry weather?  Or just the universal perversity that when you call the repairman, the problem vanishes?


The neurologists were impressed with his condition.  They said he was better than they would have expected.  If they had seen him yesterday, they might have thought he was far down the path to total invalidism.

Yet, I know enough not to get my hopes up and start making plans for more days like this.  Just to enjoy this one, and use it to gain some traction myself.

9/29  J continues good.  He came up the stairs without a rest tonight after PT.  He did [have another major accident], but overall, that’s a net gain.  If I have to choose, I’d rather swab that deck than tote that barge.


Incredible, huh?  I know, I can’t believe it myself.

Life now is a breeze by comparison.  I’m glad I recorded all that and more, so I can truthfully say, “The worst is over.”

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