Thanksgiving, 2014
We’ve been terribly close to giving up
entirely on Mary the last few weeks. The trekking, the worry, the appointments,
the constant needs, the therapies that go well one day and disastrously the
next take a tremendous toll on her, but it’s overwhelmingly exhausting for her
parents, too.
It’s
enough to do in your body and soul. And we’re not young anymore.
But Mary keeps plugging along, sometimes
showing great improvement, at other times appearing to slide dangerously
backward. There’s no upward continuum with a severely brain injured individual.
The downs are greater than the ups and the disappointments frequently outweigh
the victories. What is crucial is that there is an incremental change upward
overall, and we see this even on the bad days.
It’s challenging for all of us. It’s just the way it is. It’s hard to accept
and hard to live with this awful, unsolvable fact; there is no cure, no pill,
no operation to alleviate any of Mary’s
problems. Nothing will possibly change a brain injury. They’re an enduring and
unconquerable foe, elusive, unseen, unpredictable and downright sneaky.
A sad aside that points out that even
doctors aren’t immune to insensitivity regarding neurologically and
brain-damaged individuals: I was at an appointment this week and while I was
dealt with in a professional manner, I found this doctor chivvying along a man
who clearly had suffered some brain-oriented disaster; “Come on, Mr. xxxxx, we
haven’t got all day,” as the poor old soul shuffled along moaning and trying to
keep up with this impatient medical man. I was horrified. Then I thought, well,
what do you expect in this day of cutbacks, no time, too much pressure on a
stretched service?
Respect. I expect to see respect for the
most damaged, confused, hurt and bewildered patients who often don’t have a
clue as to where they are or why they’re there.
It broke my heart, and I will never again
look at this doctor in the same way.
Mary’s trials with food continue to bewitch
and bewilder us. Some days she’s fine; other days she struggles to eat and
swallow. She’s maintaining her weight –
she’s tall and slender – but the entire process of keeping on the pounds is a
tiring one. She may have to be fed more supplemental fluids – similar to Ensure
– because it packs more of a nutritional punch and is a product that is frequently
used to feed those with gastric tubes (or peg tubes).
Food isn't always her friend: She nearly choked to death twice at the
family Thanksgiving dinner. She was excited to be there. She always loved
family gatherings, seeing aunts, uncles and cousins. She wanted a glass of
wine, she wanted turkey, she wanted the stuffing, the green beans (a no-no),
she wanted it all. And even though she got most of it, mushed up and cut into
tiny, minute pieces – it was too much for her.
She wanted to be normal, to show us she
could do it.
Ambition can be a dangerous thing. It wasn’t the first time Paul has stuck his
fingers down her throat to dislodge whatever was causing the problem. As you
watch, you feel your entire body tingle and numb with fear. You wonder, is this
it?
Mary can – and does – choke on the
littlest thing. Some days she grabs her coffee thermos and downs her favourite
drink without a hitch. Other times…. Exhaustion rears its head and weakens
every fibre of her being. At those times, feeding can take an hour and a half,
despite the fact her fluids are thickened, her food is mush. A lot depends on what’s
going on around her. This time it was a combination of fatigue and excitement.
We all miss our mouths at times when
we’re tired, spill coffee down our white shirts, drip and swallow the wrong way if distracted. But those missteps can be critical for a brain-damaged
person with muscle impairment.
It sounds horrifying, but we’re so
accustomed to the hazards of Mary and food and drink that we simply react while
others would panic. Panic is not an option.
This week during physio, Mary cycled three
kilometres on a stationary bike without stopping to even think about it. She
stood when asked, slid down the wall, took ‘good’ steps and showed great
promise. This doesn’t happen every time. But it happens enough that we hope
Mary can take part in a more intense process of rehab down the road.
She may never be without the need for
24/7 care. And nothing will likely change that short-term memory, a 10- to
15-minute window of knowing what’s going on and being aware of the people
around her. She will never cook another
meal, she will likely never be able to bathe herself. We know she will never do
her own laundry, make her bed, do her dishes or have enough memory to
accomplish the things we take for granted. This will never be and we can accept
that. (Well, we can’t. But we have to.)
But we do have a few goals in mind for
her, which, we believe, she can attain.
We hope, because she is so physically strong, that she will one day have
enough balance to walk on a smaller walker and shuffle about – albeit precariously.
This would be a huge improvement. This could prompt more changes in her.
And, because the hyperbaric oxygen
chamber therapy improved her eyesight, we hope she will be able to read more,
watch more TV, know what’s going on in the wider world.
Our hopes and dreams for Mary are
hampered by the intricate and extensive damage done by a lack of oxygen April
8, 2009. All of Mary’s life and dreams stopped that night. But ours didn’t. So
even though we’re tired a lot of days and fed up most of the time we’ll try to
keep some dreams alive for Mary – and more importantly, her daughter.
