As I have mentioned
in posts over the last 2 years, my mom passed away 2.5 years ago. Caring for
her in her final months was difficult, but doing it as an autistic person 5
days in a row the first couple weeks was impossible.
She was in the end
stages of pulmonary fibrosis. She weighed 70 pounds and was gradually
withdrawing from eating and drinking. She had reached the point where she was
scared to be alone. For. A. Single. Instant.
I tried to tell my
family that this much intensive care for 5 days straight was too much. I
couldn't process it. There was no fresh supply of spoons and I was on auxiliary
power.
I have recently
become acquainted with the Spoon Theory. Here is Wikipedia's definition: of the
spoon theory:
"The spoon theory is a disability metaphor used to
explain the reduced amount of energy available for activities of daily
living and productive tasks that may result from disability or chronic
illness."
Maybe they thought
because I was a woman and unemployed, it was my role to be the main caregiver.
I had feelings of wanting to harm my mother. This is difficult to explain as I
love my mother (I use the present tense as I know my mom is with God in
heaven), but I couldn't deal with the stress as a woman with
autism.
I had already
recently had a meltdown triggered by built up stress over the seriousness of my mom's illness as well as the fact she might die. Police came and yelled questions relentlessly
at me. There was the added threat of being sent to jail for melting down and
throwing a heavy picture on the floor that, unfortunately landed too close to an
officer's feet-he took this as me throwing a picture AT him instead of ON the
floor.
My seriously ill mother sat in the recliner with her oxygen tank as I was lead away in handcuffs. My older sister, who had just come home from an 8.5 hour shift, was in tears.
My seriously ill mother sat in the recliner with her oxygen tank as I was lead away in handcuffs. My older sister, who had just come home from an 8.5 hour shift, was in tears.
A meltdown is what
results in my being pushed-long past my ability to process, long past the spoons
being spent. People get hurt, myself included.
In a separate event not long after that, I left the police a
message on their website saying I loved my mom, but that I couldn't deal with
caring for her by myself anymore and sent it along with my name and address. I
asked my sister (who was working full-time) to lock my mom's door as well as
her own when she got home. I wanted everyone to be safe. I couldn't trust
myself.
The next morning a
policewoman came over. She listened to me. She spoke kindly. This is a rarity coming from my
history with police. She checked on my mom and informed me and my sister about
available services before leaving.
My aunts and sister
went with an agency that provided us with a subsidy. The lady they sent was a
Godsend as was Hospice.
I should have been listened to. My family should have understood that while my IQ is
above 70, much of my executive functioning is impaired.
They knew I was diagnosed at age 19 and witnessed a few violent meltdowns. When I am under constant sensory overload, it is
non-existent. I become a wild animal that will attack if it cannot crawl off
someplace quiet.
The wake was fairly
predictable. A lot of people in my family don't speak to me or make
eye-contact. They are NT and have refused to have anything to do with me since
I was diagnosed with autism. They have seen my meltdowns. They don't know how
to handle conversation with me as the "retard" or "freak
show" as some have called me either to my face or electronically. One of
my cousins has ADHD. Talk about the pot calling the kettle black.
I digress.
Nobody forced me to
attend. In fact, if there would have been children present, I wouldn't have
gone. It was a Thursday. There are no grandchildren and the cousins' kids were
in school.
I got 2 unexpected
hugs from 2 cousins-including the ADHD one. No words, but at least there was
some acknowledgement of compassion for my loss.
I tried to hug an
uncle. It was exactly like trying to hug a cigar store Indian. I have literally
hugged one of those and I prefer the Indian.
Don't expect your
autistic adult child to be your primary caregiver when you get old and/or sick. They may be able to help in part, but don't expect them
to bear the load in full. It is an unrealistic expectation as well as a danger
to everyone!
I was blessed to be
there for my mom in her final, bedridden months, but those first few weeks
brought unnecessary stress that could have led to disastrous consequences.
I spent a large
chunk of the wake stimming in the back of the funeral home and taking pictures
of the patterns in the stained glass windows.
A final caveat: A
man who used to work with my sister came to the wake from the city (Chicago ). He took two
buses and the train. All for a woman he had never met. He mostly sat alone
aside from me making a herculean effort to circulate (because that's what is
expected when you are the family of the deceased, right?)
He told me about a
special interest I have since forgotten as my memory is relenting to what is my
late thirties. I was told later he had trouble maintaining employment and
having shutdowns.
It turns out I
wasn't the only one at the wake who was an adult with Asperger's autism.
The past two years
have taught me much about the act of forgiving, pity, and standing firm in the
things I know to be true; even when it is not what someone else wants to hear.
I credit the Lord
(who gave me a wonderful mother) as well as my mother for what good there is in
me today.
I have hardly overcome the darkness and
won't until God calls me home. Knowledge and acceptance by those who are not
autistic is a requirement, not a charity.