Sunday, January 24
Today is Don's 47th birthday!
We had a terrific party, as the pictures show.
I arrived around 11 AM and gave Don the present I had bought him:
a pillow with attached arm rests. He was still very sleepy from
the previous night, so we hugged a little and then he fell asleep
again. Around 11:30, we roused again. Jnani and Maha had said
they were going to start decorating the room around 11:15 or
11:30. I wanted to help, so we both went to the "party room."
The room, next to Don's case worker's office, was distinctly not
ready for a party. I put up the rainbow-colored decorations
Chauncey had given me (to make sure the party room was marked
as "queer space"), then emptied and washed out the waste can.
A little later,
Jnani and Maha arrived, a pattern I am becoming used to.
They brought streamers, beads, balloons, and flowers.
We nearly had the place ready when the "first wave" of visitors
arrived at noon. They were mostly Don's co-worker's from DMK,
and several of them helped us finish decorating the room.
Around one o'clock, we lit the candles on the cake Sara had
made, and Don leaned over it to blow them out. It was a
poignant moment. He blew out all the candles from the center
of the sheet cake to the right, leaving the ones on the left
burning brightly in the darkened room. "There are more candles,
V," someone said. "Are they trick ones?" he said, "Do they
relight themselves?" "Look left," someone else said. Eventually,
he did, and blew out all but one of the candles on the far left
of the cake. With one more reminder, he got that one, too.
Ryan, Don's boss at DMK, showed up a bit later. She and I discussed
how to set up a workspace for Don at home. I recommended they
get him an whole new system rather than trying to buy the chips,
memory, and software to upgrade his existing machine. Ryan and
Hashi agreed to work on things at DMK's end, while I make sure
Don has the right kind of phone line to ensure a fast and stable
connection from Bolinas to San Francisco. With little effort,
this should all be in place by the time he is released to home
care.
Visitors were supposed to come in "waves" to prevent over-crowding
the small room and overwhelming Don, so the DMK folks started leaving
about 1:15. The next shift was supposed to be from Commonweal,
but most of them were already there, so they just stayed. The
last group, scheduled for 2:00, arrived over the next hour,
including Bo (who brought and played his guitar) and Dave (who
brought Don a specialty pipe he had carved himself).
I was amazed at how well Don held up, being alert, interactive,
and conversing easily with all his guests, often having something
particular to say to each one. I was the one who was fatiguing,
and by 2:30, I had to step outside for some fresh air and quiet.
It was a beautiful day, sunny and cold.
I was outside on a deck when I hear Jnani's voice. She was
talking to someone about Don. I walked over to hear better.
She was telling one of the women who had come to Don's party
about his mental deficits. "He has almost completely lost his
deductive reasoning," she told the woman.
If true, this was shocking news, but it didn't seem true to me.
Don was able to play simple games, so his reasoning couldn't
all be gone. And why was Jnani sharing this information with
this particular woman? It wasn't someone who had been visiting
Don regularly or I would have recognized her. And why had Jnani
not mentioned this to me? Once again, I felt I was being
excluded from information I needed to know in order to take
care of my partner, and that the basis of exclusion was simple
prejudice or personal dislike.
When I went back into the party room, Don was making his way in
his wheelchair toward the door. He had grown tired after all,
so I wheeled him back to his room, where he settled into bed and
quickly fell asleep. This is the longest stretch of time I have
ever seen him go without a nap.
The party continued for another hour without the guest of honor.
I think we all felt a sense of accomplishment. The guests had all
gotten along with each other - or, as one person put it, "the tribe
congealed" - and Don had been radiant.
After his nap, Don continued to surprise me with his energy. He,
Jessica, Annie, and I played a game of Scrabble well into
the evening. (Could a person with no reasoning ability do so
well at Scrabble?) During the game, Annie asked me to recite
"Three Hags and the Moon" for her.
"It contains charicatures of you and two other people," I said.
"Are you sure you want to hear it?"
"Yes, I'm sure," she said. So I recited it. She was very quiet
afterwards.
Don was watching "The X-Files" with Annie when
I said I had to be leaving. "Will you call me
tomorrow?" he asked. "You bet," I said. "Between five and six,
when you've got your mouth full of food." We kissed. Funny,
though I had been feeling exhausted right up to that moment,
suddenly I had all the energy I needed to get home.
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1. The DMK Gang
2. Making a Wish
3. The Rest of the Gang
4. Bo and Sara
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Friday, January 29
There was a "family" meeting of all of Don's care-givers this
afternoon. All the people who have volunteered to be Don's
guardian angels while he adjusts to living at home were there;
Don's physical, occupational, and speech therapists;
and Dr. Doherty, Don's neurologist and the head of his rehabilitation
team. Don himself attended the meeting, though if it had been me,
I would have been mortified to hear my condition discussed in front
of all those people.
Afterwards, I asked if Dr. Doherty could speak to Don and me
alone as a couple. She did, and I finally got concrete answers to the
questions I had asked her almost four weeks ago. All that worry and
frustration was unnecessary, and she reassured us that our life
together could resume as normal.
It is a shame that we had to wait so long to find out, but a relief
to find out at last. Actually, it is more than a shame; it is a
national disgrace, but you can catch my rant on that elsewhere. Or
you can visit
this site.
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Some Caregivers
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Saturday, January 30
I was able to participate in two of Don's therapies today. The
first was with Jane, one of his speech therapists. She gave him
a series of deductive reasoning word tests, like, "Andrew is taller
than Mark, and Mark is taller than Tom. Is Mark the tallest?" and
"Mary's mother has a sister named Rose. Can Rose be called Mary's
aunt?" These were the kinds of tests Don had said made him feel
stupid because he had trouble doing them. This time, he got all
of them right but one, which he corrected when he was asked it again.
Talk about recovery! Jane was very pleased, and I was practically
in tears, I was so happy. "I missed one, too," I told him. From
behind the curtain separating the beds, a woman's voice said, "I
missed four," and a man said, "I missed three." These were the parents
of the young man in the other bed, who is recovering from a head
injury due to a snowboarding accident.
One of the other tests was to retell a joke. Don was disappointed
that he screwed up the set-up to the punchline. "I never could tell
jokes," he said.
After Jane left, we talked about the tests a bit. "You know, one
of those questions was ambiguous," I said. Don eagerly agreed.
"Yeah," he said, "'Phil has an uncle named John,'" he quoted,
"'Could Phil's father be said to have a brother?' That's ambiguous.
I guess you could say Phil's father might have a brother,
but it could be his mother's brother."
Pretty sharp, huh?
Later that afternoon, Matt and Patsy came for a visit. Don was very
glad to see them. He had a question for Matt, who is a doctor at
Santa Rosa in addition to being Don's friend. "Dr. Lowenstein
said he expects a 'full' recovery," Don said. "I was wondering
just exactly what 'full' means."
Matt said, "Last time I looked it up in the medical dictionary,
a 'full' recovery meant ... a full recovery."
I could see Don was reassured by this, but that he was still worried.
I think he sees the term "full" as being medically vague, or perhaps
dealing only with his physical strength, or perhaps only "good enough
to get by." "Listen to the doctor," I said. "That's full recovery,
both physical and cognitive. Yesterday, Dr. Doherty said you have
not stopped recovering yet. You haven't. Think about those tests
this morning. They were very hard for you just two weeks ago, and
today you got almost all of them right."
"Thank you," he said. "That's very reassuring," and he squeezed my hand.
Later that day, I joined Don and his physical therapist as they walked
outside. He did pretty well on the uneven pavement of the bicycle path,
though I was alarmed at how quickly he was walking, fearing he
wouldn't see or react to obstacles and potholes quickly enough.
It was also quite blustery, and I was afraid the wind would knock him
down. But Don is never as fragile as I think he is. He didn't
always step firmly, but he didn't stumble, let alone fall.
Later, inside, the therapist showed me how to help him going up
and down stairs.
Leah came by around 2:30 PM, and, by convention, I stepped out so
they could be alone. When I returned around 4:30, Leah had left
and Don was all eager to go to dinner.
I didn't realize the dinner plans had been moved up and
that we were supposed to be there at 5:30. We walked out to the
car, Don carrying his walker most of the way. He prefers to carry
it rather than push it. He says it feels like a tightrope walker's
balance bar.
Don was the navigator and got us there in good time, where we
were warmly greeted by Ashok.
This was originally supposed to be a group dinner for all of
Don's care-giver family on
Sunday night, but apparently Avatar's is closed on Sunday.
The only people who were able to make the schedule change
to Saturday night were Jnani and Maha. (It may also be that
Jnani made the schedule change and didn't get around to
telling anyone else. It would be typical of her: "I didn't
have a choice. I had to exclude everyone else.") Don
was a bit disappointed. He was hoping to see more of his
friends.
By coincidence, Don's ex, Waz, arrived for dinner a little later,
though he ate at the counter and not at our table. He came
over briefly, and Don "introduced" him to me. It seemed
he didn't remember meeting me before in Santa Rosa.
Jnani went over the notes from the family meeting, with Don adding
editorial comments about what he thought he did and did not need
supervision and "cueing" for.
Jnani also mentioned that Annie had called her
about something, but that Jnani thought it was something Annie
would want to talk over with Don herself.
We left the restaurant, and as I fetched the car, Jnani, Maha, and
Don went to look at the full moon over Sausilito. "It's a blue
moon," I told them, "so if there's something you want that only
happens once in a blue moon, now's your chance. Make a wish."
I had already made mine.
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