Posts Tagged ‘Kudos’

This community gave me the strength to go on…

I still remember the blow I absorbed when, in the first year after
Dean’s TBI, we assembled at the Denver VA facility to hear the
pronouncements of the medical staff regarding their opinions about
Dean’s potential for continued recovery. It was very intimidating to me,
to sit in a roomful of doctors and therapists, and listen to what they
had to say.

And it was dismal news… Dean was older (over 60 when he had his fall),
he suffered a severe TBI that complicated matter, he hadn’t progressed
much to date… and the real stunner… of course, he wouldn’t recover
much more because he was fast approaching the 1-year anniversary of his
injury and *everyone* knows that recovery stops after 1-year.

At that point in time, I was naive enough to think the medical
profession knew more than I did about TBI treatment… and perhaps some
do… but, let me tell you, I realized *that* day that I certainly knew
more about Dean and his recovery than those pontificating fools at the
Denver VA.

At the 1-year mark Dean was still in a wheelchair, we were dealing with
horrible, horrible behavioral issues, he was very confused and his
short-term memory and long-term memory were poor, he was
wheelchair-bound. It was a difficult time both physically and
emotionally.

And the Denver VA staff were so certain in their pronouncements that
that was what the rest of his life would be like. It was like letting
the air out of a balloon… deflating hopes and dreams slowly and
inexorably. (Do they all go to school learning how to do this?)

I’m *so* glad that I found this community because this community is what
gave me the strength to go on… to continue to seek whatever treatment
for him that I thought he could benefit from. Therapy continued for a
little while but mostly Dean recovered just by living in the world and
participating more in it. I found lots of puzzles (at the correct
ability levels) for him to work on… as he progressed in assembling
them, I found simple airplane kits, etc… Dean started assuming
responsibility for chores at home. He now empties the dishwasher, he
does our laundry, he works on the lawn, etc.

And now, coming on the 4-year mark, as many of you know, he drives to
the post office to get our mail and is even going to the grocery store
sometimes to pick up milk (and all that entails — finding the correct
brand, handling money, etc.)

In Dean’s recovery there came a point where the burden of therapy and
recovery shifted from the medical community to me. I think that point
came too soon (because it was so frightening to me to shoulder that
burden — without much previous experience), but looking back, when Dean
entered the “real” world, in my mind, I think he made the most
significant improvement. I often didn’t see it at the time but looking
back… it’s amazing what he’s done.

The hardest part is trying to think like a therapist and see what he can
continue to benefit from. It was much easier when I found the solutions
of simple puzzles to engage him… and then the toy aircraft kits… but
now… he needs more… and I am again out of my comfort zone….
searching and looking for something more meaningful… still within his
abilities but stretching them… (and stretching my abilities to help
him!)

Even though the solutions aren’t coming to me as quickly as earlier in
his recovery, ideas still come along… and I try them out on Dean one
at a time. This is life, it’s messy and it’s not cut-and-dried but it’s
still a wonderful life. Dean’s here with me and, when I look back to
those early days when we weren’t sure if he would survive his fall, I
definitely want to be *here* with all it’s difficulties than anywhere
else.

- Lucy (Caregiver) and Dean (Survivor)


My family trusts me as the expert about my needs

Most importantly it was you, Patrick who set me on the way to discovering these issues… essentially the controllable aspects for me.

I followed your suggestions for educating my family, and you communicated directly with my husband early on, and since then I have simply been TRUSTED as the person with the most accurate information about my needs. And my family no longer feels hurt by my reactions, especially my withdrawal to recover.

It has been now over 3 years since I first started implementing your advice,

Patrick, and I must thank you again for helping me carve out some pieces of

happiness here and there. Keep up the good work! You are changing lives

every day here!

-ZK


Deacon Patrick’s Round the World Progress

Deacon Patrick's Round the World Progress