2005 - 2006
Sunday January 2,
2005
Dear Friends,
Grant is definitely
changing. Since the last message, he has
said and done so many new things I'm afraid I won't be able to remember them
all.
First, he continues
to speak and say surprising things. For example,
when we put on the Passy-Muir (speaking) valve and asked him to just warm up
his voice and make any old sound, he came out with "Testing 1, 2,
3". We laughed and laughed. How
cute is that? He has said "I'm sorry I'm not myself" and "You
are my lifeline" and "My legs feel virtual, not real" and
"I sometimes feel my life is not worth living" and "It's good to
see you, even if it's only your outline."
For the years he
was apparently "out of it", I continued to talk to him and tell him
what was going on, but I was never sure he was getting any of it. For example, one of my projects last fall had
been to purchase a mobile home in
My uncle Bernie
told me the following joke when I was in
This reminds me, I
am going back to
It takes Grant an
extraordinary amount of effort to speak, so he can't do it for long - an hour
tops, and then he starts to get more and more unintelligible. He says speaking feels to him like shouting
at the top of his voice - that's the amount of exercise it feels like to push air
through the valve. But the more he does
it, the more he develops his lung capacity and hopefully, the easier it will
get. The doctor is also talking about
possibly using a thinner trach tube, which would concentrate the air more and
make talking less effort. As I have seen
now at CM often, the move to progressively smaller trach tubes is also the
preparation for removing the trach altogether and allowing the hole to
heal. This opens to door not only to
normal speech, but normal eating. Grant has not eaten regular food in almost
four years. I dare not think too far ahead here.
It is very
frustrating for Grant when he starts to get unintelligible. He says he is still thinking just as fast,
but he is less and less able to say anything because of fatigue.
It's not all good
news. His talking has revealed some disturbing things. He says he cannot
see. This explains why he has stopped
watching TV or wanting to read. He can't
see photos in front of his face, and moving them to different distances does not
help. He says colors are washed out, and
light bothers him. He cannot tell you how many fingers you are holding up and
when you ask him to make eye contact, he generally looks only in your general direction,
but you don't get the sense he really knows where your eyes are. He is going to have a complete ophthalmic
exam this week. He has been on many
heavy-duty systemic antibiotics that have bad side effects on eyes, so I am
worried. As Dr. Miner put it, "He
doesn't need another disability."
He says he is
depressed. He has a sad face much of the
time. He can smile, but the smile is just face movements. It's rarely a real smile. I asked him if he ever feels cheerful and
happy and he said no. He described his
view of his future as "Bleak."
His anti- depressants were recently discontinued, but they have now been
restarted. He says he doesn't feel any
difference yet, though. He does not want
to talk to any kind of counselor, and his views about religion have not changed
in the least, either. He is like Teflon
when it comes to religious arguments. He just doesn't "get" anything
appealing there. (His Teflon is much
thicker than mine.)
A third new and
worrisome piece of info we've gotten from his talking is that he cannot feel
his lower body. He used to be able to. Now he cannot tell whether or not you
are touching him anywhere below his hips.
But there is more
good news, too. He is on only 40% of the
full dose of the Baclofen, and we are starting to see some significant improvements
in his voluntary movement. It's hard to
tell exactly what he can do, because he is weak as a kitten from being in bed
all this time. But he is moving both arms, elbows, wrists, and fingers on both hands. His fingers are all gnarled up from joint damage,
but he might eventually move all his fingers normally if the joint damage can
be undone. Stretching and moving are
very hard for him, but physical therapists are unstoppable. They are making him
bend his arms and raise his hands to his mouth - the movements he needs for
eating. This kind of work was
unthinkable a month ago.
Furthermore,
although he cannot feel his legs, he seems sometimes to be able to move his
right knee up and down on command. The nerves for sensation and movement are
different, and you can have damage to one group without damage to the
other. For most of his illness, he has
been able to feel his legs but not move them; now things seem reversed, and he
can move (sometimes)
but not feel. He is moving
his right leg just enough to make me far too hopeful!
If he can keep up
this arm and leg movement, and get stronger, he might become able to reposition
himself in the bed, and then we won't have to worry about bedsores - and
eventually, (oh, joy!) we might be able to sleep in the same bed.
He has also started
to wink!
Love,
February 4, 2005
Dear Friends,
There have been a
couple of scares since the last message but things seem OK right now.
We went to the
opthalmologist January 6, the day before I went to
For a patient with
normal eye lubrication (i.e., without dry eyes), the remedy for a hopelessly
damaged cornea is corneal transplant surgery.
But, Opthalmologist #1 said, Grant is not a candidate for a corneal
transplant. According to #1, surgery
would never work for Grant, because the vascularization would just happen all over
again with a new cornea, and complications of the surgery might result in loss
of the eyes altogether.
#1 did only a
cursory examination of Grant's eyes, partly because the examination required
shining a bright light into Grant's eyes, and this hurts Grant. So Grant just
closed his eyes immediately every time the doctor shined the light. The doctor
got a little impatient, talking to Grant like a child, telling him he had to
cooperate, etc. Talking down to Grant in
this way practically guarantees that he will NOT cooperate -- as some of you
may know!
We left this
appointment very depressed and low. I
spent a lot of time in
When I got back, we
talked with Dr. Miner, who suggested another opthalmologist, an eye
surgeon. So we went to see him on Jan
27. Dr. Miner had put Grant on some eye antibiotics in the meantime, because
his eyes were all gunked up with pus-like stuff. By the 27th, they were looking a lot clearer.
When we went to
Opthalmologist #1, Grant was in a hospital gown, and looking pretty
forlorn. But for the appointment with Opthalmologist
#2, the Care
Opthalmologist #2
essentially agreed with the diagnosis of #1.
But he said Grant's left eye was much worse than the right, and he held
out some hope for improving vision in the right eye with glasses. He also said a corneal transplant was not out
of the question for the left eye. (He is a surgeon, though, and I would expect
a surgeon to be more optimistic about surgical approaches.)
As we waited for
the outreach van outside his office after the appointment, I said to Grant that
one eye was better than none, and he nodded with enthusiasm. I think we both felt a lot better.
So that's the news
on the eye front. Dr. Miner examined his
legs and said she was not worried about the loss of sensation, but she ordered
some tests.
The second scary
thing came up just today. Grant has
spent the last twenty-four hours vomiting.
He feels awful. He had a fever of
101, and which they got down to 99 today.
They drew blood, urine, did a chest X-ray, etc. (all the usual stuff)
and started him on IV antibiotics. He
is, of course, dehydrated and very weak.
He says it feels like the flu. He
did want to continue listening to his book on tape, though, and I think that's
a good sign.
The nurse at Care
Meridian had to get the IV started and got help from Grant's roommate's wife,
who is a critical care nurse. Grant is a
tough stick and the CM nurse was a little intimidated. The pressure was on, because
if they hadn't been able to start the IV, Grant would have had to go to the
hospital, and nobody wanted that. But
together they got it done!
Everyone at Care
Meridian is concerned about Grant being sick. They really love him there. The
nurse on duty today (an RN) told me she would come in every day to check on the
IV, because she lives close by, even though she will not officially be
working. (There are rules about IVs --
only RNs are allowed to touch them, but most of the other CM nurses are LVNs.)
Grant continues to
be more alert on the whole. Even today,
he consistently answered yes and no questions.
That's more than he's been able to do on his sick days in the past. So maybe we're moving forward slightly.
Love,
March 26, 2005
Dear Friends,
Grant came home for
his first visit last Saturday March 19, 2005, almost four years after his
illness began. I had a small open house,
mostly with my wonderful neighbors, who set things up, and decorated, and
handled all the refreshments, and generally welcomed Grant back to the
neighborhood with far more style and grace than I could have mustered by
myself. Thanks,
Grant was supposed
to be picked up at 11:30 at Care Meridian, and the event was going to start
around noon, but Outreach sent a small minivan at 11:30, and of course that
vehicle was way too small to accommodate Grant's chair. We ended up waiting an extra hour before a
bigger Outreach vehicle arrived, so everything ran a little late. The upside was that everyone was waiting when
we arrived. Four kids were at the corner
on the lookout, and they waved and ran over to the house, where another ten or
so folks were waiting. Grant had really
big eyes as his chair was lowered. He said he had a good time and wants to come
back again!
He was happy to be
home and see everyone (he can see better than he could
a month ago). He was pretty alert, and
answered yes/no questions very well. He
talked a little, though mostly unintelligibly.
His speech has not improved in the last few months; in fact, most days
it is worse than that first day in early December. It's funny how on a
really great day, EVERYTHING works: you can actually understand (more or less)
when he talks, and he can move his wrists and arms and fingers on command, etc.
Most days are not really great days. The average day is better than it used to
be, though. We can now more or less
count on him answering yes/no questions (by nodding or shaking his head), so
the care-givers can get an idea of what he wants (change tape, TV, rest, etc.)
-- assuming they ask him. He doesn't
seem able to volunteer anything, or ask for things on his own. He still does not use the call button or the
computer to signal. And if he is wearing
the speaking valve, he seldom says anything spontaneously.
His eyes seem
somewhat better. His vision at the party
was good enough to enable him to recognize some people. He also consistently
identifies some (though not all) colors.
He had an MRI a
couple of weeks ago, which unfortunately gave no information about why he still
can't feel his legs.
I got him an LCD
TV, which we have mounted on an over-the-bed table so we can put it as close to
his face as he wants. He has not been
interested in watching it, however, since he has been listening to a
I have my spring
break this week, and am going to
Care
Love,
Monday April 11,
2005
Dear Friends,
Grant has been in
the ICU at
Sandra Newell,
Martin's wife, went immediately to St. Louise ER and stayed with Grant a long
time. There was a young female doctor
working the ER, and this young doc suspected Grant might have had a heart attack. He also appeared to have a bowel obstruction;
had pneumonia plus the raging UTI, and was, in her words, "failing"
and "very critical". This was in the middle of the Terry Schiavo
vigil, and the young doc was intent on learning about "Grant's
wishes".
I was in
By Friday April 1,
Grant was looking stable and much better: no fever, breathing on his own. The bowel issue had spontaneously resolved. They
had done more tests and were now pretty sure he hadn't had a heart attack. The pneumonia was much better; he was using the
vent only for backup breathing. There
was one new issue: a new pressure wound on his left foot -- hospital beds are
made for little old ladies -- but that wound is small and he will still be able
to get into his wheelchair as it heals.
As of April 1, he
was still receiving heavy-duty IV antibiotics, though, and most of the Care
Meridian staff can't dispense IV drugs.
His blood pressure (BP) was on the low side also. So they decided to
keep him in St. Louise over the weekend of April 2-3. I got back from
Yet he had no
fever; his white blood cell count was normal; his chest X-ray was also normal. He
is as alert as usual (he says he is actually rather bored), and continued to be
interested in listening to his books on tape. I.e., there weren't all the signs
you'd expect of acute infection process.
They did a CT scan
of his chest today to see if maybe he has a mucus plug that could account for
his breathing problems.
I spoke with Dr.
Miner this evening, and she had obviously been thinking hard trying to figure
out what was going on. She now believes
there are two root causes of what we're now seeing: (1) His pulmonary doc
decided last week to try to treat the pseudomonas colonization,
and this is why the pseudomonas discharge is now being suctioned up. (2) He is
having trouble breathing and has had low BP because he hasn't received his
THYROID meds for two weeks. In the transfer
of info about his meds, the thyroid medicine was overlooked. Lacking this medicine can make him so tired he
literally cannot breathe well enough on his own, and he could experience
shortness of breath though there is no physical blockage.
So Dr. Miner put
him back on the thyroid meds, and we'll see if that helps. If the CT shows a mucus plug, they'll do a
bronchoscopy today and clear that up.
Dr. Miner hopes the thyroid med will begin to energize him also; she
thinks that the thyroid med alone might make all the difference.
So the last day or
so has been pretty crazy. I hope Dr.
Miner is right about the thyroid med. I
am very tired. The Newells and Kathy
Dougherty were on the scene while I was in FL, and I am very grateful for their
help and support. I am sorry I did not
inform the whole newsgroup sooner -- I am sure many of you would have wanted to
help also -- but in
Anyway, we are
hoping for the best. I'll keep you
informed.
Love,
Tuesday May 17,
2005
Dear Friends,
Grant has been
poorly the past few weeks. In my last report (April 11) he was still hospitalized with
aspiration pneumonia, vomiting, etc.
He was finally discharged and went back to Care Meridian around April 15
-- he has been in and out of the hospital so much lately I don't remember the
exact dates -- but was re-admitted to St. Louise for another twelve days April
23 - May 5. After returning to Care
When he vomits,
there is always danger of aspirating, so they are very careful about
re-starting his tube feedings. He had
nothing but clear fluids (no protein, not his usual formula) for at least three
of the last five weeks. So he has lost a lot of weight and looks feeble and
skeletal and much older.
He's been having
trouble breathing, and so has been on the ventilator full-time for a couple of
weeks now. While he's on the vent, we can't insert the speaking valve. But the nurses say he can still speak, since
he can push air through his mouth as long as the trach hole is sealed, and the
vent does make a seal. The nurses say he has spoken to them. But I have not
observed any speech; he seems just very tired.
He wears a monitor
fulltime now, and an alarm sounds whenever he is not getting enough
oxygen. Whenever they take him off the vent,
the alarm sounds eventually, and they have to "bag" him (give breaths
with a hand-held bag) until they can hook him back to the vent. It's an emergency procedure that would be pretty
interesting and exciting to observe on someone else. When the vent flow is
restored, the nurses describe what they've done as having "brought him
back".
It is not clear to
me what's going on at this point. He is
not very stable, but on the other hand, I think he's probably better off at Care
He has been
listening to lots of audiobooks as usual, and is awake enough most of the time
to answer yes/no questions, but seems depressed. When I visit and then say
good-bye, he makes a face like he is going to cry. If I then ask him if he wants me to stay, he nods. You who knew him know how independent he has always
been. He's got to know things are different
now; he hears the additional machines beeping.
He must be terrified when he can't breathe and there's all this sudden
commotion and alarms sounding and people yelling for help. And then they bring him back.
I have had some
serious conversations with the acting DON who is concerned about our "being
realistic about treatment plan".
The CM people want to know now if he's changed his wishes regarding his
code status. I talked with him about
that last week, and he indicated that he still wants to be full code (do
everything possible), so I guess he hasn't completely lost hope. But in St. Louise
last month when there was talk of emergency surgery, he indicated clearly he
DIDN'T want it. Luckily, what he says to
me doesn't matter, anyway; the hospital is a Berkelean world where nothing is
real until the doctor perceives it.
I don't know if
this time is just a temporary setback.
Maybe he's just weak from not having eaten much in the last few weeks. Things
sound grim, and it's not the best of times -- though I guess it's not the worst
either.
Love,
July 7, 2005
Dear Friends,
Grant has been
somewhat more awake in the last week, but on the whole far less responsive than
he was, say, six months ago. He had his fifth birthday
in hospital June 16 when I was in
Most days he
listens to books on tape, but now refuses to participate in any activities or
therapies. He communicates nothing much except for nodding when we ask if he
wants us to "change the tape".
Most of the time, even when listening to a tape, he simply moves his
head from side to side. It looks like he
is signalling "no" all the time;
his continual head movements are causing abrasions to the back of his
neck because he rubs against his trach collar.
Dr. Miner would like him to get out of bed (i.e., be hoisted out in the
lift) every day, and every day he refuses.
He hasn't been outside in months now.
He does not want to use the speaking valve, or the computer, or the
letter board. He does not want to get up in the wheelchair, even if that means
he will miss his outside doctor appointments.
Since his recent
hospitalizations (which he hated), he has apparently done some serious thinking
about his own future, and has made some decisions. He has now indicated not
only to me, but to to Dr. Miner, that he does not wish to be hospitalized again
for any reason, and does not want anyone to call 911 if he crashes. Grant will
allow the people at Care Meridian to use their own resources and equipment
(limited) to bag him and bring him back if they can. They will be allowed to
use any drugs they can administer at Care
But there are to be
no more "unscheduled" transfers to hospital. Dr. Miner has written
orders reflecting these wishes. She
believes now that these are his genuine wishes -- i.e., not merely the product
of depression -- since he has expressed these things consistently in spite of
new/increased antidepressants.
My thinking over
the years has made me wary of the notion that anyone's "genuine
wishes" can be fully known, even to the person supposedly experiencing
those wishes. I am particularly
suspicious that we can know our (or anyone's) wishes about life-and-death
matters, since I don't think anyone has data about those matters sufficient to
form fully coherent wishes. If you have seen
Grant in the last few years, you know the additional grave problems attributing
any wishes to him at all, since the vast majority of his communications since
his illness have been limited and ambiguous.
I also think it's
silly to think we can rule out depression in his (or anyone's) decisions; I
think given many people's circumstances, depression is completely rational. Of
course I suppose it's possible Grant is not depressed -- that he has evolved to
some advanced spiritual mastery, say.
I can think about
these issues until my head explodes. The bottom line is that I cannot imagine the
Grant I knew (depressed or not) choosing to prolong the life he currently has.
The upshot of these
decisions is that Grant will most likely, as Dr. Miner puts it, "succomb", sooner than
later. As you know if you've been
reading these messages over the years, Grant has needed IV drugs and/or
hospitalization to combat various infections once or twice a year with some
regularity since his illness began.
I am very sad about
all these developments, but I think I have to leave it all in the hands of the
universe at this point.
I hope Grant is led
by kindly light.
Love,
Wednesday, October 25, 2005
Dear Friends,
Grant continues
stable. The last few days, he seems to
be sliding back to sleepy-land, after several pretty good weeks. He was using the letter board better than
ever until a few days ago.
He has two new
bedsores, which means his wheelchair time has to be severely limited (not that
he cares). I am upset because the
Clinitron bed -- which is supposed to prevent that sort of thing -- seems not
to be working properly -- or maybe it's the fact that the temp in his room has
been 80 degrees plus. According to
Clinitron techs, their beds are intended for use only in climate-controlled
environments. Once the ambient temp goes
up, the beds heat up too.
The lucky thing is
that Grant claims not to notice either way; it's not bothering him. But I think
the bedsores reveal a real problem.
He has been listening
to lots and lots of audio books. A
friend of mine turned me on to OverDrive Audio, which allows SJ Public Library
patrons to download audio books free. I
got the software working on Grant's portable.
It is flakey, and I still can't get it to work on our backup Thinkpad.
OverDrive has better-than-average customer support, but the software is still
Version 1. Everything works fine until I
try to acquire the digital license to download play the material, which is copyrighted. From my reading, DRM (Digital Rights
Management) still
looks a bit TOO complicated.
I'm having good
success downloading radio programs for Grant via podcasting, though, so he has
plenty to listen to.
The advantage of
using OverDrive and podcasting is that the Care Meridian staff doesn't have to
manually change tapes or CDs. They can
just click on "Play" and if I make big playlists, he's good to go for
hours. He likes that part. I wonder if it's not also kind of bad,
though, because he ends up being a bit more isolated. He has the room to
himself now -- he has MRSA again, only now nobody seems very worried -- and the
CNAs know his audio stuff is set, so they don't spend as much total time with
him.
He is as usual
neither happy nor sad.
I discovered my new
cell phone has a speaker option, so I am now making the regular weekly call to
Grant's parents from Care Meridian with the speaker on. Grant likes to hear their voices. He generally does not want to use his speaking
valve, but he makes many cute kissing sounds into the phone.
Care
Love,
December 21, 2005
Dear Friends,
Here is a link to a
photo of Grant from the Care Meridian Halloween party. Is this cute or what?
http://instruct.westvalley.edu/lafave/Grant_pirate.jpg
or (bigger)
http://instruct.westvalley.edu/lafave/grant_pirate_big.jpg
Grant's been pretty
awake the last couple of months. He has
been listening to audiobooks like crazy, at the rate of about one per day. I have been
downloading the books from the SJ Library.
They have about 400 titles of the downloadable audiobooks. A lot of
those are self-help, romance, financial advice, classics, etc. -- Grant's not interested
in those. I started to download
alphabetically the titles I thought Grant would like, and we're already up to
the "L"'s! One subscriber can
download only 10 books per 21-day period -- that's not nearly enough for Grant,
so I'm using both our library card accounts. This format has been a big hit
with Grant -- he says he much prefers it to CDs or cassettes, because he can
listen for hours on end without having to rely on the CNAs to change tapes or
CDs.
He has yet another
bedsore on his foot now. It's the same
site as the one he got in the hospital earlier this year.
Grant and I went to
the movies -- to an actual movie theater in
Grant and I send
you all our love and best wishes for the holidays!
December 25, 2005
Dear Friends,
Grant died early
Christmas morning. A sudden vicious
infection, took him very quickly. He did not suffer much, as far as we could
tell. He appeared to be in pain at
first, so the doctor ordered morphine. Then Grant breathed irregularly for
twelve hours or so, and finally went peacefully.
He was surrounded
by friends and loved ones all day and night. The staff moved his roommate to
another room, so Grant could have privacy.
His favorite care
team happened to be working. When their shift ended, they cried as they said
good-bye to him. They all said they loved him very much, and told him they
would miss him.
When the outcome
became inevitable, the staff phoned other staff members who were not working
that day, and the off-duty gals also called and visited to say good-bye to him
(on Christmas eve day, when they probably had lots of other things to do!). His
parents and family also spoke to him by phone.
I felt very glad
and blessed to be there. I held him and
talked to him. Occasionally I would put
my cheek near his mouth and he would very weakly kiss me. He seemed pretty out of it, even though his
eyes remained continuously open. He was too weak even to blink, so his
dried-out eyes -- in a vain attempt to protect what was left of his vision --
spontaneously filled with liquid, and the "tears" spilled down the
side of his head, so he appeared to be crying at times.
My friend David
said, "On Christmas morning, he was released from his prison."
There won't be any
kind of viewing or funeral. I plan to
have a memorial ritual of some kind. I will let you know the details after the new year begins. A
lot of people are traveling this week. Perhaps Adobe or some one of his other
former workplaces will let us hold a service in one of their nice spaces. Churches never gave Grant much comfort. I
think that he felt most at home in the world at his computers, in his workplace,
and I know he was much loved there.
How can I thank you
all for all you have given us these last years? There are no words. I'll say thank you anyway.
To the astonishment
of the medical folks, Grant was given almost five more years of life after the
inception of his illness! He read hundreds of audio books. He was tenderly cared for by good
people. He played and joked with his caregivers,
to the extent that he could, by making faces and sticking out his tongue, and
moving his head eloquently. He never
lost his sweetness.
I think he has
earned super-powers. If there is
anything to karma, he is already a god in his next life.
Love,
Dear Friends,
Grant's memorial at
Adobe on February 2, 2006 (Groundhog Day) was wonderful. I can't imagine how it
could have been nicer.
If you weren't able
to attend — or you'd just like to see or copy the videos — they are available
in Quicktime format at
http://instruct.westvalley.edu/lafave/final_candidates/ending.mov
http://instruct.westvalley.edu/lafave/final_candidates/young_then_ill_Grant.mov
The second file is
especially large, sorry. Thanks to Bruce Bullis of Adobe for putting these
together!
Love,