As childlike as they are in so many ways,
unlike children, they will never grow up.
You are the caregiver and they
are the patient. It can be very easy to slip into
their world. It takes a conscious effort to avoid.
Do not get caught up in their craziness. Be the
alpha dog, be strong, be kind and above all else, be
Michael will say, “The rules did not say
‘Michael, do not do this’,” so he thought it would
Behavior modification is key.
Slowly, almost painfully slowly, along with
consistency, you can improve the quality of both
your lives. Nothing you, or anyone else
can do, will change this patient; the best we can
hope for is some sort of common ground through
positive cognitive behavior modification, a fancy
way of saying learning.
One of Michael’s things is food,
so when he decides to act up, and every one does, I
simply tell him his punishment will be chicken. Now
understand that punishment chicken is really no
different than regular chicken in the way it is
prepared, but in his brain it is a punishment
because I labeled it so.
Remember we are the pack
leaders, use what tools you have, improvise to make
a better life for both of you.
You will begin to see Asperger’s
everywhere and in most people. When you see it in
yourself, it is most distressing. Do not be
concerned; we all have it. I have come to understand
and respect mine other than loath it.
There were times at the
beginning that I thought I was really getting
through. I now realize that the best I can ever hope
for is some sort of recognition.
It was just after one of these heartfelt
talks that I asked, “Do you appreciate everything
that your brother-in-law has done for you?” His
answer, as is often the case, came as a question.
“Can I have an extra dollar to go to the store
Limits, guidelines, rules, call
them what you will, they are a must. The most
successful caregivers are the most rigid.
Every exception becomes their rule;
therefore, no exception equals no violations. Two
negatives always make a positive.
However, that being said and being constantly
tested, the human side does occasionally give in.
On just such an occasion, I had
prepared a gourmet breakfast, after explaining to
Michael that this was a rare treat, that he was not
to expect it again because it tested the limits of
his restricted diet, and that he was to add nothing
or ask for anything else. He says “Sure, sure, I
understand; but do I still get potatoes?”
This is a new disease, syndrome,
symptom, birth defect, brain damage ... The point
is, you did not cause it, you cannot fix it, and you
can only treat the symptoms.
Take time away from your charge.
You had a life before and you should have a life
now. In the end, you will both benefit from it.
not to fall into the trap of talking about your
patient as the main topic of discussion. This is
harder than you think. Our charges do so many
fascinating things that are truly amazing in so many
ways that others are very interested.
It is not possible for them to
think of anyone but themselves first. This not
personal, it just is.
Michael once told me that when
his parents die (they are holocaust survivors
currently in their mid eighties), it will be his
fault ”because people will say, ‘Think of how long
they would of lived if they didn’t have Michael’.”
He was serious.
We are rewarded those times that
they do remember and do get it right. We are
rewarded in that even though they do not appreciate
what we do for them, we do make a difference.
If you are that one in 10,000, it means you will
never be appreciated by the person you are caring
for. You will be the savior to the family, although
they will rarely visit.
The person you are caring for remembers
everything that is important in their world. They
have total recall and can retrieve that information
instantly. However, remembering other such mundane
things like putting dishes away, picking up
something that drops, taking medicine, turning off
the TV... that they choose not to remember. It’s not
malicious; it is just the way they are wired.
Michael can look at the TV Guide
once and in the time that it takes to read it, he
has memorized everything that is important for him
to see for that entire time; he can give time and
channel at will. “Michael, is that your empty bag of
grapes in the living room?” “I guess I forgot.”
(Grapes aren’t allowed in the living room.)
Change at best is difficult. Any change
in schedule or food or anything else is best handled
slowly and carefully. This is an area where the
effort really pays off. I had told
Michael I was moving the couch from the living room
into his bedroom. He liked the idea and I gave him
plenty of warning. Arriving home to find the couch
moved, he stood there and asked where the couch was.
I told him to look in his room. As he entered, he
smiled, looked me straight in the eye and asked me
what happened to the couch in the living room.
You are their conduit to the
other world. You are their life line. No one
understands them as well as you do and no one can
have as much influence on their lives as you can. It
is an awesome, most times thankless, responsibility
that I hope you appreciate and love as I do. For all
you do, THANK YOU!
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