Home
A house is a place to store furniture. A home is a place to store memories.
Welcome to our
old friends and to those friends we have yet to meet. Come in and sit (clear
off a chair first)
a while and have a cup my wife's coffee (mud) or maybe one of her famous
homemade cookies (rocks). By
the way, we leave that dust there to help reduce the glare
from the light without the shade. I hope you find your visit here both
entertaining and informational.
I will shut up for while and let my wife tell you a little about us.
My Wife, Partner and Best Friend
A Cargivers Story
Are you feeling guilty, helpless, frustrated, overwhelmed? Except
in occasional emergencies there is not much that one person can do for
another, other than to help him to help himself. Because I am a caregiver
and one who gives because I care, please remember that the darkness is
not forever.
At the time of Toby's accident, I was teaching adult basic education classes
in an independent living skills center for people who had survived a traumatic
brain injury. I was smart enough to know how to educate and yet too dumb
to recognize my husband's symptoms. One day at work I was talking about
Toby's problems and two center employees said, "brain injury".
My immediate reaction
was disbelief and shock. I looked at the people being rehabilitated in
the brain injury program and thought, "Oh no, not Toby!" I know that in
the beginning things were easiest. Once we were in the medical community
someone always told us the next step so we went from family doctor to ophthalmologist
to neurologist to neurosurgeon to a second opinion and back to the neurosurgeon.
Until the night before his first surgery I did not fully realize the seriousness
of the situation. I had thought that rest and the right medication would
cure anything. At that point I was angry because I realized that my world
was about to change - my, how self-centered that sounds.
The first year was filled
with one surgery after another and recovery time inbetween. I was scared!
Most marriages
do not survive under the stress of a brain injury. I was determined to
make good on the wedding vows we had taken: "for better or for worse...",
"in sickness and in health...". At that point I knew that we could beat
the odds and remain together by taking one day at a time.
HOW DID WE COPE?
-
we got a puppy and he became
the focus of Toby's daily activities, take the puppy for walks and work
on obedience training. The dog was my confidante and was in tune with my
feelings whether I was laughing or crying.
-
I began to write in a spiral
notebook all the things I had to do for Toby. The list of "you owe me's"
was for my eyes only but I let my husband know sometimes when I was adding
to the list because I fully expected him to recover and repay me for some
of the things he owed me.
-
Sometimes I felt so alone and
helpless because no one understood brain injury. It was hard to talk to
strangers because there was so much to explain and I didn't want to talk
to people we knew because I did not want them to feel sorry for us. I maintained
close contact with my family and a couple friends. We rarely talked about
Toby's problems. In fact, most of the time we just had fun.
-
I told jokes; repeated some I
had heard and made some up, especially rhyming poems that included the
surgeon's name. My mother told me that my humor was frequently inappropriate
and I told her, "It sure beats crying."
-
I went to visit Toby each day
when he was in the hospital and we talked on the phone at least twice each
day. When we were in his hospital room together, we didn't always talk.
Sometimes I would read, watch TV, or rest but I was there drawing strength
from him and our relationship.
-
Our bond was what kept us strong.
When one of us needed someone to lean on, the other was having a good day
and could give the needed support. It was almost as though we took turns
leaning and supporting.
-
We also always let each other
know exactly how we felt. We never, then or now, end a phone conversation
or leave home without telling the other, "I love you."
Though
no one can go back and make a brand new start...anyone can start from now
and make a brand new end.
Check out my grandson...he adores me...grin....Well,
now I am going to just let you know that in February of 1988 my life did
change dramitically.
I had been and over the road truck
driver for 17 years and of course thought I would be able to go back to
work. The company however did not want me driving and the union took the
attitude that I should just take the Teamsters Medical Retirement and go
home to relax. First of all I was only 38 years old. Second, I did not
believe I had any disabilities, and third, I had already lost my battle
with the FAA to regain my pilots license. I was not in the frame of mind
to be told that I was also losing my career. The company sent me to doctor
after doctor looking for a reason not to put me back to work...and after
the 5th trip the union said that was enough. I did go back to work, but
within days turned in my resignation due to problems I was having being
able to get where I was suppose to be. It was on to plan B. I had
spent much of the second year of my recovery going with Jane to her place
of employment and seeing her work with other people with brain injuries.
I even got to help at times and it was a rewarding expierience. My
problem with being able to do what Jane was doing, was that my education
was lacking, along with my memory and brain overload functions being a
concern. (OK, a major concern)
Jane I believe
was the one who suggested we apply together at Exceptional Persons, Inc.
a non profit organization that serves people with disabilities in residential
settings, along with many other services. Jane and I were hire to
manage a 10 bed RCFMR Facility on an everyother week schedule. Jane
was my teacher, my mentor, my role model. I can tell you this now,
when we first started, Jane did 90% of the work. She taught me adaptive
techniques to remember the things I needed to accomplish. She was
there always as my safety net. Jane worked with me for 2 1/2 years
teaching me and encouraging me. The last 6 months we worked together we
worked in a 5 bed house in the Brain Injury Program. I then went
on to continue their for another year. I moved from that house into
a setting with 3 guys who were mentally retarded and worked there for another
year and a half. I went back to the Brain Injury program in the supervised
apartment setting and worked there for one year before becoming a Support
Coordinator supporting and supervising 4 houses, 10 staff, and 10
consumers. I worked in that position for one year before moving back
to residential programing. I now work with two gentlemen who are
fun, if not sometimes challenging.
I love who I
have become, I have my wife to thank for where I am today. She will
not say so herself as she gives me the credit, but I know. I have
a life that I would not trade for the old me. I have joys that I
never had before. I look forward to the rest of today and God willing
a new tomorrow.
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