Friday the dog got sick - blood in the
urine - so MW couldn’t sleep for worrying about that. Moved from bed to closet
back to bed then wound up in the closet for most of the night. All total, maybe
three hours sleep.
Saturday morning the vet. saw the dog,
figured it was a UTI and gave medicine which calmed things somewhat. Went for
lunch with my family, ran some errands. Normal enough day. Slept pretty good
that night, too - only woke up once. Call it seven hours of sleep.
Sunday was the winner. Started in the
morning worried about a tender spot on her ribs (“It hurts when I press here.”
“Then don’t press there.”) That, MW thought, was a sure sign of cancer. The
whole day was spent worrying she had cancer. I mean the whole day. She starts
by asking me if I think it is cancer. I say no. She then asks why not? Over and
over again. All day long. (“Why isn’t it cancer?” “Well, I just read an article
about how HD victims have a lower cancer rate than the general population. Does
that help?”)
MW doesn’t like sitting around the
house when she’s depressed, so we spent the day at the park. This may sound
pleasant, but really what it means is she sits in a parked car for hours,
worrying about cancer. She lets me walk, however, so I had a grand time. Lovely
weather, beautiful park. Must have walked close to three hours. When I would
check in to see if she was ready to go, I’d get the question “Is it C?” (she
won’t actually use the word “cancer”. She abbreviates it with the letter “C”).
“No.” Then she would let me go walk some more.
That evening she did settle into the
closet and stayed there all night. Woke up around midnight and then 5 a.m.
asking if she’d slept, so not bad. Five or six hours of decent sleep.
NOTES: Last month I grew desperate
enough to call an HD helpline. Talked to a nice lady, but, as expected,
absolutely no help. The only advice she had was for me to get MW to a doctor.
Yeah. Thanks for that.
I hung up the phone feeling pathetic
and sick. Pathetic because I knew there was nothing anybody could do to help
and the only reason I’d called was to talk to someone. Sick because I came to
the realization that the only way out of this situation is, quite literally,
death - hers or mine - and I would gladly welcome either one.
Yup, poor pitiful me - but check it: I
am certain that I’m doing the wrong thing. The right thing would be to somehow
get her to a doctor and get her the care she needs. But I’m just not smart
enough, strong enough, or courageous enough to make that happen. I should be
able to figure out some approach, or issue some sort of ultimatum to get MW
treatment. And I have tried in the past; tried and failed so fucking miserably
- full scale atomic meltdowns that last for months type failures - that I’ve
given up hope entirely.
The third leading cause of death
among HD victims is suicide. As I write this now, I am absolutely certain
that MW will not commit suicide. She never brings it up, never talks about it,
would not even consider it an option. And, oh trust me, it isn’t as if she
could be thinking about it and not telling me. There is nothing she doesn’t
tell me. I’m all she has.
That’s good, right?
Indeed. Except everyday I’m made aware
by some action or speech that HD is corrupting MW’s brain. So today I’m sure
she’s safe. Tomorrow? The next day? When will I know this has changed if it
changes?
I am putting her life in danger by not
forcing her to get treatment.
Let’s approach it from the other side -
say tomorrow I get run over by a train. MW would be forced to go for treatment.
She would have no choice - she cannot take care of herself. Right now she is
incapable, but in no way suicidal. If I were to be removed, her life could be
saved or at least better managed.
It isn’t like I’m being a martyr. I
have no life outside of work and being a caregiver at home. Work is just a job
- a paycheck - not what you would call fulfilling or satisfying. Then there’s
care-giving. Nobel enough, I suppose. The Catholic part of me likes all the
self-sacrifice and suffering. But if my care-giving is ultimately doing more
harm than good?
What use am I?
All this to say I’ve starting drinking
in secret. Hiding bottles around the house. It helps a little - the Catholic
part of me giving a big thumbs up - but it can’t last.
***
Here’s an example of the useless tits
on MW’s family. My wife has a cousin who is a big-shot doctor. He owns a
hospital - owns one! - has a highly successful practice, board-member of the
state university, and he is on the matriarch’s side of the family so he know HD
is something he himself dodged like the No Country For Old Men coin toss. To
his credit, he did try once - a long time ago - to talk with MW and I about the
disease. As I expected, she had a breakdown right there in the restaurant - fled
crying. Fast forward to the present and, once he’d heard through the grapevine
that MW was having problems - he calls me. Okay, he did at least do that, but
the call was even less meaningful than my conversation with the HD helpline.
“Take her to a doctor,” he says. Fuck you very much, sir. You were there at the
restaurant. You know I can’t talk to her about this. What else? What else have
you got? You own a hospital - can you send the white-coats over in the paddy
wagon? Then shut the fuck up. Useless tit.
Bitter? Yes. Because he did the bare
minimum by calling me, fed me tired bullshit, then abdicated from the
situation. He must know better. He’s a professional psychiatrist. A doctor. I’m
just an asshole who’s read some internet sites and even I know enough that, if
I were serious about helping somebody in this situation, I wouldn’t leave it at
“see a doctor”.
We need help. Real help.
Boot-on-the-ground help.
All I hear is crickets.
***
Earlier this month - around the time I
placed the call to the HD helpline - I was this close to talking to one of the
lawyers where I work about the situation. My thought was to ask about getting
power-of-attorney and using that to force MW into a clinic or assisted living
facility. Fortunately I stopped myself in time. First, that’s fantasy. It would
never happen. Second - my God what was I thinking!? Tell somebody where I work
that my wife has HD? Holy shit. Holy shit. See? This is how desperate I’ve
become.
***
Lots of downtime today, obviously, so
this entry is extensive. A preview of what’s to come: New Year’s Day. Another
day away from work, alone with MW - and then I also have the rest of that week
and the next week off as well. I had taken this as vacation time to attend an
out-of-state wedding, but now MW doesn’t want to go. The terrible thing,
however, is that she won’t let me return to work. She wants me to stay home
those days. So we can talk about all the cancer she doesn’t have, I suppose. It
makes me physically ill to think about spending this time away from work. My
only hope is to convince her that we can’t afford to waste my vacation days.
I’ve been successful with this in the past - the argument that if either of us
gets sick, I’ll need those days - has a lot of power over someone who is always
getting cancer, but if I can’t return to work….
No comments:
Post a Comment