Not in an openly aggressive way (at least not since he frightened us both by shaking his fist in my face some months ago), but by saying and showing that everything I do, everything I suggest, is just wrong, wrong, wrong. I’m careless, controlling, moody, patronizing, childish, self-indulgent. If I try to tell him how I feel about things, he simply walks away. It seems to me that he has no use for me at all, just enormous, indignant need.
I asked him about his anger. Was he angry about not
being allowed to drive? Yes. About being unable to work? Yes. Unable to read a
book? Yes. Having constant back pain? Yes. Having to lug around his duodopa
pump? Yes. Whatever I asked about, he was angry about it. Then I asked who
he was angry at. Was he angry at the paid helpers? No, not really. Angry at his
children or his sister? Certainly not. Angry at my family? Not a bit of it.
Angry at me? YES, emphatically so. Why? For doing everything wrong.
This is not Jon. The man I met, loved, married, may
have been stubborn and dismissive at times, but never angry or aggressive. What
is going on?
It’s not about Parkinson’s anymore. This blog has
changed over the last year or so. I’ve tried to keep a focus on Parkinson’s,
like we originally intended, but PD just isn’t our main problem now. Which is
of course partly because Jon is now fairly well medicated with the duodopa
pump, so he’s physically better. Only as soon as one issue is dealt with, the
next one rears its hideous head.
Now the greatest challenge by far is Jon’s cognitive
decline. Ever since his diagnosis with Parkinson’s dementia a few years ago, he
has chosen to ignore the signs and carry on regardless. I was taken aback at
first, but came to see what a helpful strategy that was for him. Only now he’s
come up against the wall and can no longer kid himself that all is well. I think
that’s why the anger is erupting now, when his decline forces him to
acknowledge his condition.
Nobody should have to know about themselves that they
are slowly losing their faculties; that is the cruelest thing of all. But
understand it as I may try to do, I still get terribly hurt and feel
horrendously frustrated. I can’t even act natural around Jon anymore. Everything
I say to him has been weighed and considered: will he understand? Will he misunderstand?
Is the timing right? Is the wording right? Could I, should I go about it some
other way?
I’ve talked to those who ought to know, and they tell
me I’m not doing anything wrong, that dementia just takes some people that way.
The anger may continue or it may go away, but there’s not a lot anyone can do
about it. Well, we got Jon on anti-depressants a few months ago, and I wonder
if upping the dose might help a bit, but I daren’t hold out much hope.
Yesterday, I suggested that he needed a bit of
pruning, as in a haircut, a beard trim and eyebrow services. He said he’d only
have the beard trim, and only if I did exactly as he instructed. I hesitated,
trying to figure out a non-confrontational way to persuade him of the haircut.
He got fed up and decided to do the job himself. So now he has a big bald spot
on one cheek and a mouth still hidden under the overhanging thatch. Hair like a man going feral, of course, not
to mention the unibrow and the guitarist’s nails.
Why do I care so much? Why can’t I just leave it be,
do as he wants, trim his beard for him and let him grow his hair long? Sure, it
would look somewhat eccentric, but so what? Does his appearance reflect on me?
(Yes, I’m ashamed to say that I think it does a bit, though it shouldn’t.) Is
it worth the upset? Of course it isn’t.
So why am I nevertheless upset? I think it’s the sheer
volume of passive aggression. This morning we even had a fight about tooth
brushing. It’s getting ridiculous. I’m feeling stretched, undermined, rejected,
unappreciated, frustrated. Sometimes I even feel a little bit abused. Sorry if I’m
not taking that as well as I might. I reckon I need a break.
