Hospice and Lewy Body Dementia

June 19, 2011 at 11:08 am (By Amba) (caregiving, dementia, Hospice, Lewy body dementia)

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.

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[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."