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."
My Story (with assistance)
Though no one can go back and make a brand new start...anyone can start
from now and make a brand new end.
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.
Story update: One month short of my 10th aniversary on my new job and I was
fired. I apparently was not able to express myself well enough to defend
myself on some charges made by a co-worker. I went back on the road driving
semi for one year and found that the frustration and hours were more than
I could handle. With my wife's feedback, I came home to work on my Motivational
book. After a month I found a job driving a school bus for summer activities
and by the start of the school year had a regular route. At this point I
am 3 years into my new job. While it is part time, I enjoy it. It gives me
the needed rest I need to keep focused mentally to accomplish it successfully.
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.
