About autisticaplanet

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Welcome to a blog about an autistic adult woman in her late 30's using words and images to advocate acceptance as well as awareness of those with life-limiting sensory processing issues and resulting social and behavioral challenges. I write about inclusion ideas for those who remain in isolation due to their neuromakeup and share how my Christian faith keeps me going. Thank you for visiting.

Monday, November 7, 2016

I wasn’t meant to be a primary caregiver


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.
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.