LIFE AS A CAREGIVER
My emotional experiences have ranged from deep despair, to feeling cosmically connected and loving; at home with all beings. Many times I have felt I was also going to die from the unrelenting stress of this disease day after day, year after year.
Parkinson’s is more than just a
movement disorder. It can effect behavior and personality in
some people. Not only can your loved one not move well, but
they may be hallucinating, up all night, and making bad
judgments that affect your future. They may be verbally cruel,
and may hide important things. And then there’s the falling
falling falling, day after day, night after night.
Sooner or later most of us will have problems
that seem to defeat us, changing what we assumed was the
course of our life, and challenging our idea that we are in
control of anything. His personality changes included
hallucinations and paranoia.
About Marcie-Doll
I went through a phase where I quit my nursing job and couldn't get out of bed. When I did finally get out of bed on a regular schedule, I would look at my clothes in the morning and dress myself, knowing I had to put a costume together that would be judged. My husband was deeply in his own world and didn't notice me. Sometimes I felt nauseous at the thought of getting dressed and appearing in the world of humans. I would be told to "smile," I was sure. I made people uncomfortable, this I was sure of. I practiced smiling to protect myself from being spoken to when I left the house. I couldn't stand being spoken to at that time. I would get dressed and the critiques of my appearance made their way into my consciousness. The critiques were memories of critiques from others that had lodged into my mind, making themselves known, and were now coming from my own mind.
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About the brain scan drawing: My husband
had had an fMRI years before, to rule out a stroke. I
remembered looking at his brain scans and feeling afraid and
vulnerable. Was his essence really located his brain? Would
this change? Now, these years later, some days I felt like I
was actually crazy and maybe I should get an fMRI to see if
there was something wrong physiologically. It was at this
time that I applied for and qualified to be one of the
subjects in a brain study on how experienced meditators
process pain. I have had a strong meditation practice for
years.
So, I got a free fMRI, and the neuro-scientists sent me
pictures of my own brain as a reward for doing it.
Marcie Vallette