Thursday, January 29, 2015

"The Change" with Mama

Mama and Vin With Attitude
Even before Mama was diagnosed with Dementia, the parent/child role reversal was there between us. When I was ten years old Mama came home late from a doctor's appointment and I was worried... 

Vin: How was the doctor's appointment? You're late, what did he say?
Mama: He said I'm too nervous and I need to relax.
Vin: That's what he always says. But are you okay, Mama?
Mama: Yes, I'm fine but I'm going through "the change".
Vin: What change?
Mama: "The change".
Vin: What's the change?
Mama: Ask your father. Do you want some ice cream?

A few years ago in the nursing home, Mama's visits from the doctor were becoming more frequent. I began to worry even more. I asked her what the doctor said... 

Vin: How was your doctor's visit today? What did he say?
Mama: Oh, I'm sick and tired.
Vin: He said you're sick and tired?
Mama: No, he said I'm fine.
Vin: You're fine?
Mama: Yes he said I'll be fine when my son gets me the hell out of this place.
Vin: I'll ask the doctor about that one. Do you want some ice cream?

And so it goes. 

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Saturday, January 10, 2015

Where Does Dementia Come from Mama?

In the Beginning - Mama & Vin
In the beginning God created Mama. And He saw that she was good. Many many years later, Mama gave birth to her pride and joy... me! Whenever I would ask "where did I come from Mama"? she would say that I was the Immaculate Conception (don't ask!). Mama said novenas, lit candles and saw doctors. She was very religious and believed in miracles and I was going to be the miracle birth! I guess her prayers worked because she had me at a very late age with only one ovary (again, don't ask!). She dressed me in blue for my first few years to thank the blessed Mother for her miracle. Of course I was a long and hard birth! She loved to remind me of how much she had to suffer so that I could be born. She'd tell the story over and over until the very end and it wasn't just because she had Dementia. 

Just Another Day in the ER
Mama had intense anxiety, heart problems, blood clots and finally needed to have a pulmonary embolectomy, an extremely high risk operation. We didn't know that Dementia or Alzheimer's could be brought on as a result of such a serious operation. Who knew? The Doctor said it would be a 50/50 chance, but it was the only chance she had to survive. What did I know of the risks? I wanted Mama to live! The risks of Dementia were never mentioned back then... that was over thirteen years ago.

Transfusion Distraction - Douglass Doing Mama's Nails
Years later we'd become Mama's detectives constantly investigating her ailments and diagnosis. The doctors were dismissing many of her problems blaming them on her age or her anxiety. We knew better, we knew Mama and were her Caregivers and Advocates. When she started to need blood transfusions more frequently, we discovered that she had another disease, it was called Myelodysplatic Syndrome. I only heard about MDS through "Good Morning America's" Robin Roberts because she was going through it at the same time. The blood transfusions started to happen even more often and we finally realized that Alzheimer's would not be the cause of Mama's death after all. During our usual outings to the ER for her transfusions Mama would repeat "what the hell am I doing here? I don't need blood, I got enough of my own". Then we'd all start singing to keep her occupied. As horrible as the visits could be we all managed to laugh and sing and the hospital staff were amazed how we got her through it. She always attracted an audience, that's our Dementia-Mama-Drama!

My Blessed Mama
So, where did I come from Mama? As always she'd insist that I was the miracle birth. Where does Dementia come from Mama? She never had an answer for that, but then who does? We're finding out slowly and like Mama I believe in miracles and hopefully the answer will be soon. "In the beginning..." it only took God seven days to create the entire world, what's taking us so long to find a cure?

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