Life, the universe, and lunch

Behind the backs of those we love

So twice in the past week, the topic of going behind the backs, or
against the wishes, of those that we love, those living with
Huntington's Disease, has come up. A friend in the support group was
approached (ambushed) by his children and told that they have to have
a 'family meeting' to discuss the 'future of their family' without mom
present. He e-mailed the rest of us in the caregivers support group
for our opinions. My hackles went up immediately and I let him have
it, or rather, let his kids have it with both barrels. Then today I
heard another story of how another 'living with' I know was outed
behind her back to the friends in her social group -- despicable. I
just can't believe that both of these things have happened, are happening.

Why do some people think that those living with are not qualified to
have their own opinions, make their own decisions, about their care
and quality of life? Sure there's a lot of things about my
relationship with Tam that are pretty messed up, things I keep
secret -- the partying, the swingers; things I do to 'balance' my
situation that I know won't meet with her approval. But those are my
things, when it comes to her care, her quality of life, I always
involve her in the decisions. I know recently she asked me about
rescinding the DNR on file at the nursing home and I haven't got to it
yet, but we also never finished the discussion, and will be getting
back to it with her mom in a proper family meeting, one that
includes her. And we've been very up front with her about the whole
feeding tube situation, pushing it off as long as possible and
involving her in every discussion, every meeting (in fact the three of us
are meeting the surgeon to discuss it further on Friday).

There are so many things this disease takes away from them -- why
do some self righteous folks take away even more under the conviction
that they're helping???

posted by ...K @ 11:37 PM