Wednesday, November 14, 2018

the teacher

I have always hoped, that with age, I would grow-up to become a wise woman,  I would become a sage woman.

In my internet browsing I found a lecture by Scott Stuart - Dimensions of Dementia: Deepening our Care.  In his lecture Scott talks about the worth of all people, and the value of all people, at all points in their lives.  Scott also talked about what we can learn from those who have dementia. They are still teaching us things, and we should be receptive to these life lessons. 

My Mother was a teacher, she was a very good teacher. What did Mom teach me, while she had dementia, although indirectly?

That raising children, which I believe is one of the hardest job in the world, is a piece of cake, compared to dealing with dementia!

She has taught me that dementia is not really like a Dementor, a character from the books of Harry Potter. Yes, dementia sucked out the happiness that was in my Mother and most of the happiness that was in our relationship. But the dementia-demon has not sucked out her soul.  Her soul and her tortured body were very much still there together, until she died.

What did my Mother teach me?  That you will always miss you mother after she is gone, even if she has been gone for sixty years. You can still miss her with all the emotional rawness as it was the day she died. It can be as powerful as it was sixty years ago.

What did my Mother teach me?  We are creatures of habit. We like certain things and we don't like certain things.  Mom never liked button down shirts or flannel sheets, and somehow she could still communicate that to me. Her aides just attributed that to her daily grouchiness, but I knew the difference.

When Susan lost her mother, she wrote in her blog:  "Along the care giving road something amazing happened, my mom gave me a gift of pure Love. My mom knew love and taught me to experience it too. My mom's illness was our greatest blessing, without it, I would not have a heart that is full of love."

Monday, November 12, 2018

I can't care

Again, Teepa Snow has succinctly put into words what it took me years to realize.
My mother had Vascular Dementia and maybe Frontal Temporal Dementia too.

She couldn't care.
She couldn't care.
She couldn't care.

The "I care about xxx" part of her brain was busted.

Please watch  Teepa's video, become educated.

Oh why does my Mother's dementia still hurt my heart so much?

Wednesday, October 17, 2018

a dog named Stormy

The family plot, where my Mother and Father (and other ancestors) are interred, is in the old section of the cemetery, most stones date from the early 1800's to early 1900's.  So I usually never see other living people when I visit this cemetery.  Once I was surprised by a walker on her daily constitutional. She quite snuck up on me and scared me to pieces.

Down the path there is a well with a hand pump where you can fill your watering can, to water the flowers you've planted on your ancestors' graves.  As a child I remember learning how use this hand pump, how to prime it, and how to fill the watering can without soaking your socks and sneakers.

Things change very slowly in this part of the cemetery, subtle changes.  A large tree was missing from the neighborhood, just a stump left. 

One day, a year or so after my Mother died, I arrived at the family plot to see a man planting a ginkgo tree.
Isn't this something usually done by the cemetery workers?
This man had a young golden retriever dog with him, who immediately came over to me as friendly as could be.  I walked the dog back over to his human. 

"Hi neighbor" I said.  It seemed a fitting, yet strange thing to say. Will be be eternal neighbors some day? I went over and introduced myself.
He was replacing the old tree that was destroyed by the previous winter storm.
His family plot is the one with the beautiful rose quartz headstone that I've admired since I was a kid
After a bit more conversation I went to plant the irises I brought.

The golden retriever came back and sat next to me, as I dug and planted.  He let me hug him and pet him. He sat on my father's flat stone, beside me. I couldn't plant, I just cried and cried, hugging this dog.  He put his paw on my thigh and let me weep into his soft fur. He stayed with me for a long time.  I wasn't just teary.  I had those big sobs that catch in your throat. I was a mess.

My father always had golden dogs, retrievers or mutts.
This dog was being so friendly, affectionate, and comforting.
His name was Stormy.

Sunday, March 11, 2018

naughty words

Again and again.
Just like dementia does, I'm going to remind you to watch Teepa Snow's videos.
Here she talks about our language skills and how they are affected by dementia.
Watch here.

Thursday, March 8, 2018

the last bath

It has been four years since Mom died.

There are still memories of Mom and her dementia swirling around in my head, things I want to write about. This story is about her last bath.

Mom caught pneumonia, was sent to the ER, admitted into the hospital, and died the next day. All so sudden.  You can read about it here.

The hospital called me early that morning, she had died during the night. I stopped by her assisted living residence to pick up some clothes. I hugged and cried with the staff. They had already been informed by the hospital.

When I saw Mom, she was lying peacefully on her back, all tucked into bed, intravenous lines removed and beeping heart monitor taken away.

The nurse was there with me, calm and reassuring.
"Did I want to bath her before we got her dressed?" she asked. "I will help you." We knew she was dying, they had kept her clean, did I really need to bath her? But, this was a gift, a special time with my Mom, one last physical act between us, one last time that I could touch her, hold her, and take care of her - a goodbye event - a ritual.

Still attempting to protect and honor her modesty, we bathed her bit by bit, uncovering and exposing pieces at a time. Sort of like how a masseuse reveals only the parts to be massaged. I washed her hair too, her short silky brown hair, I towel dried it and tried to brush it.

Her body was cold and deathly white on top and so very hot and purple on the bottom side. That she was so cold and so hot at the same time was something I was not expecting.

Mom never liked my help getting dressed. I would stand behind her, or off to the side, when helping her. She would kick me when I would put on her sneakers. I can remember "angry dementia Mom" saying snarky things like "did you get a good look" when I was helping her into a johnnie at doctor appointments.

Getting her dressed was both horribly sad and humorous. She was dead weight. She was like a rag doll, and like a Barbie doll, I couldn't easily bend her to get her dressed. Trying to hold her leg while putting on her socks just got me laughing.

It was heartbreaking, joyous, and humorous all at the same time. As I tugged Mom's jersey over her head or tried to pull her socks up I kept waiting for "angry dementia Mom" to pop up and start yelling at me. "What in the #%$# do you think you are doing? I don't need help getting dressed." But when I brushed her hair I could hear my "real Mom" say in a soft voice "Oh that feels good."

Thank you to the hospital staff for letting me have this time with my Mother, and supporting me through this ritual.