Two Weeks of Life

I was up far too late last night finishing this
book.

Eleanor Clift, the author, is a reporter whose husband was
dying at home under hospice care during the same two weeks that
Teri Schiavo’s feeding tube had been disconnected.

I had ordered the book when I read the review
in the New York Times,
because one of the things I wanted to use this daily blog to
write about was my experiences last year with the death of my
friend Bonnie.

I had expected to be more interested in the account of the
husband’s death than in the interviews with all the participants
in the Teri Schiavo frenzy. I was, but the Schiavo stuff was
better than I expected, especially the stuff about the role of
the Catholic Church.

For instance,
a small number of weeks before he died, Pope John Paul II had read
a pronouncement that getting food and water through a tube was not
an “extraordinary means” of prolonging life, which was interpreted by
some people to mean that Catholics were prohibited from ordering
the removal of feeding tubes. However, in his own end of life
care, a feeding tube was inserted and removed twice.

One of the links between the two stories is that Clift feels the
hospice movement didn’t do a good job of getting the message out
about what its aims were, when hospice caregivers were being attacked as
murderers by the Right to Life people.

My own experience with the hospice facility where Bonnie spent
her last month was very different from the one described in this
book, probably mostly because I wasn’t being a caregiver, so I
wasn’t getting all the training and support I would have needed
to do that. My difficulties communicating with Bonnie’s
caregivers are another post, but I was certainly glad to have
the internet to look up vocabulary like “active phase of dying”,
because I wasn’t getting good explanations of it from the
caregivers.

One of the points of this book is one I have been trying to make
since last year: that we spend too little time thinking
and talking about dying, which makes it much more difficult for
us to get through it when we finally have to.

Anyway, if you’re interested in any of these issues, this is a
well-written book. It could have used a bit tighter editing:
there are places where the same anecdote is repeated in
different chapters, But on the whole, it’s really well-written
and if you want to think about how to communicate with the
medical profession and how to make decisions about how to die
and what the religious contribution to the politics of all these
decisions is, you should read this book.

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Following up

I expect on a more or less weekly basis to post a short series
of paragraphs that update previous posts.

Tuner

Last Friday, I wrote about my new tuner. I
said that I was having trouble even getting it to slow down when
playing a recorder. I took it to my lesson that evening, to see
what a professional recorder player (John Tyson) could do with
it. As you would expect, he did much better than I did, with no
trouble getting the spinning lights to slow down, but it was a
great deal of effort for him to make them stop. (When you watch
a professional recorder player play with one of the needle ones,
it really looks like the needle doesn’t move at all.) At my next
lesson, he asked me if I’d been working with the tuner (not much,
because of the concert), and recommended doing so, because it
would be good feedback on getting an even tone.

Pruning Roses

On Saturday, I wrote about finally being able to get to the
rosebush in my
garden plot

. Unfortunately, we had an unusual cold snap this
week, with temperatures in the teens (fahrenheit) for several
days, and maybe in the single digits at night. So while last
week I worried that I was leaving it too late, if having the raw
cuts exposed to cold is a bad thing, maybe I should have waited
another week. And now I’m worried about how the poor little buds
did with the cold, too.

Link
to my pruning shears.

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Drugs

I said yesterday that the
pharmacy had the authorization, and was claiming that they would
fill the prescription for the insulin syringes in a small number
of hours. I called them several times, and they still hadn’t done
it as of 4 PM. So I called this morning, and they finally had them. But
this morning my fasting blood sugar was 201, which is much higher
than it ever is when I’m taking insulin. I’m going to try to get
time to write to the hospital ombudsman or whatever it’s called
these days. There should definitely be a system for getting
people medication in less than a week, and for expediting
medications that people are out of.

Getting drugs

I’m having enough trouble filling all my prescriptions this
month that I keep wondering about whether all the people who are less
literate and competent and mobile than I am, and have even more
prescriptions for the system to screw up than I do, ever get what
their doctors think they’re taking.

The short story is that as of yesterday afternoon my doctor claims to have authorized the
refill of my insulin syringes, and the pharmacy claimed
that they’d never gotten the authorization, and the doctor
claimed that there was no way she could talk to the pharmacy
directly.

The status this morning is that they admit to having gotten the
authorization, but won’t have it filled until at least noon. I
started trying to get this routine refill last Thursday, and have
been out of the syringes (and hence not taking the insulin,
although since that got refilled, I have plenty) since Sunday. I
have so far been to the pharmacy twice for this month’s refills,
and will have to go at least once more, and have probably spent at
least 2 hours on the phone trying to get all the refills.

The good news is that my fasting blood sugar this morning was
near the high end of the range it is when I’m taking the insulin,
but not off the charts.

One of the things I didn’t write about as much as I thought I
should last year was the difficulties of dealing with the health
care system. Last year, the difficulties I was thinking of were
largely those of my friend Bonnie, who
was dying of cancer, and presenting difficult problems to the
system. But refilling a prescription every month for a healthy
person who can walk or drive to the pharmacy shouldn’t be a difficult problem.