Thursday, February 28, 2013

Temple Grandin: Rising to be Compressed

Probably everyone has heard of TEMPLE GRANDIN, Ph.D. She is the amazing animal husbandry expert with autism.

"When I was age 3, I had standard autistic symptoms such as intolerance to being touched, inability to speak, tantrums, and stereotypic behavior. I would stiffen and pull away when people touched me, and I was oversensitive to both touch and sound (Grandin 1989a, Grandin and Scarino 1986) Magnetic resonance image (MRI) scans have revealed that my cerebellum is undersized, and I have a slight balance problem.  I will describe here a deep touch pressure device ("squeeze machine") that I developed to help me overcome problems of over sensitivity to touch, and that allays my nervousness. Reactions of other people to the squeeze machine, including children with autistic disorder and attention-deficit hyperactivity disorder (ADHD) are also reported."   How Compression can help

There is so much in this little paragraph.  The symptoms, the intolerance, the imbalance and brain issues and the comfort of compression.

And that brings me to the comfort of compression.  The comfort I am speaking of it the compression of a hug, a touch, a squeeze of your arm.  The compression I am speaking of is the compression of life between generations, between work and family, between family and family.  It is compression of time and compression of love.

My mother has some things in common with Dr. Grandin.  Her memory is challenged and her cerebellum is certainly affected.  Her balance once challenged, has improved.  But her gait is definitely slow and wide.  She knows everyone and almost all fine details, but she struggles with time and sometimes place.  She knows who Marco Rubio is and what The Affordable Health Care Act means - at least as much as any of us do.

 So the compression in her case is the move to a retirement community.  She did not like any part of it, comparing it to jail and calling the residents inmates.  She felt trapped and alone.  She felt compressed, in a not good way.  She felt confined and "dumped" by her family.  Although we all visited every day, she felt duped and abandoned. She said we were plotting against her.  I felt the Betty Davis compression of Baby Jane.   I assure you the entire family weighed in on the support of my mother and she is better now for having  gone there.

The staff get her up every day and give her breakfast and medicine. They make sure she has a bath and they wash her clothes.  They prepare meals ( with choices I might add); and,they have healthcare, activities and music.  They also have my mother on the floor with the memory challenged.  Our healthcare system which is modeled after the industrial revolution of assembly-line care, is not staged for a little bit impaired. Its all or none.  Either you are on the memory unit or not.  I bet you, she is the only one on the third floor who knows who Rubio is.  He should go thank her.  She talks to everyone and repeats his name frequently. And his website is as dark and gloomy as her attitude!

The other compression that is ongoing is the emotion of the family.  She is mad at my father. My brother and I feel helplessly hopeful; my kids are asking if I have plan for my care.  We are all compressed to add the emotional support.  We all are adding in the stop off at the apartment to see Mom.  We all have so much going on: entering the peak of our working years, hoping for the peak of our retirement years.  

My Mother needs support, though not the all or nothing support.  She doesn't need to be in the memory care  full time.  She needs part time support to ensure her meds are taken appropriately and her daily upkeeps are done  timely.

She needs to have conversation and interaction and walks in the sunshine and porches for the rain.  She needs my father, her spouse of almost 60 years.  And he needs her. And the system isn't designed for a spouse with different needs.  Nope.  We have to compress the elderly in a box of convenience.  Did I address the issue of healthcare being stuck in the assembly line management style?  Oh yes, I did.  I say we should compress that idea, and use the Affordable Healthcare Act to change the way we treat people, and focus on their humanity alongside their medicare number.

Wish we had a research paper on the efficiency of providing what the client needs and not what is convenient for the provider. This is the quandary of the transition back to families with generations in the home (what a great idea that was) or the transition to real transition and not choices of block one or block two.  Imagine if we approached not only elder care, but education as a service for an individual and not for a giant system of mass production.

This sounds like a Ted talk community conversation  that I should hold.  Hello TedTalks, call me, I have many thoughts on redesigning "retirement".

So back to compression.  I had to travel out of town all week and guess what I am thinking of?  Who is going to see my Mother?!  The move to the retirement facility put her squarely in the path of my home to work commute.  I have seen more of my Mother in the last two months than I have in the last three years.  She is accessible and can be part of my day. She can be a smile on the way home and a hug at lunch. Compression of my day  includes seeing her on my way home.  Compression of how many years into a few minutes of a visit. I thought the days of a her being in my life had changed permanently.  But luckily for all of us, she is improving.  She still needs help. She still needs her whole family.  And my Father needs some compression too.  Because sometimes compression is a good thing.  Indeed a good thing.

Thank you Temple for helping us understand that.