Tuesday, April 30, 2013

"I love you too, dear - but not that way"

When Mama lived at The Village Nursing Home in NYC, she had many friends. This was a big difference from The Rafael Home in CA, where she had very little social activity or friends. In NYC, besides her friends, even the visitors of other residents would stop by & say hello to Mama & she loved it! She especially enjoyed sitting outside on the bench (right on 12th Street) & watched the people passing by - it was quite a diverse group. Some of them would stop & chat with her as they walked their dogs, pushed their baby strollers or on their way home from work. Some of them even called her by her name, "Anna with a Z."

One of Mama's best friends at the Village Home was Joyce. Joyce had suffered a stroke & was wheelchair bound. She had great difficulty speaking, but remarkably Mama was able to understand her most of the time. Joyce was a big smoker & loved to go outside just like Mama. They had their spats, but they were inseparable. This is the first conversation I heard between them when I met Joyce while visiting Mama. Remembering this encounter always brings a smile to my face & reminds me that these two old gals always told it like it was.

Mama's Bench in NYC

Joyce: I'm a lesbian... well, I used to be.

Mama: That's nice, as long as you're happy.

Joyce: (pause) My daughter is a prostitute.

Mama: As long as she enjoys what she's doing & is good at it.

Joyce: (looking at me now) I LOVE your mother.(She reaches over to hold Mama's hand).

Mama: I love you too, dear - but not THAT way.(Mama gingerly pulled her hand away & patted Joyce on her knee.)

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Saturday, April 13, 2013

Saying It Out Loud

I believe in being honest, sometimes a little too honest, but that's me. I'm not sure how to say this, maybe it's because I don't know if I've fully accepted it. The fact is that Mama, my best friend has died... there I said it! We all assumed Mama would die from Dementia, but a few months ago, a new disease crept into our lives called Myelodysplasia. I knew nothing about it, only that it's a form of leukemia Robin Roberts of ABC News had. She was much younger & fortunate to find a bone marrow donor. Mama was too old for that & chemo was not an option at her age. We only had one other alternative - blood transfusions. We'd call those days "transfusion confusion" that's what we'd tell Mama. She'd get confused going to the hospital so often for her transfusions, which were becoming more frequent. She'd say "Why do I need more damn blood? I have enough of my own. When are we gonna get the hell outta here? I'm hungry & my ass hurts!"



I've been avoiding saying it out loud - Mama is dead. You may have guessed from our last few posts, but I wasn't quite sure how to handle it & I needed to say it. As you know Douglass & I've been her caregivers for over ten years! The entire process has been surreal, but our daily ritual continues. We still check the phone for her calls, still check the time for our visits & still think we should be singing, playing cards, asking Mama questions & cursing with her to make her laugh. But, Mama is dead - her body is no longer with us & we are grieving.

I promised Mama that we'd continue with our blog. She loved performing for all of you & being interviewed. She particularly loved watching her videos & seeing her photos, she was always posing & sang along to her videos! We're sure it gave her another reason to keep going. We still have many of our conversations, videos, songs & photos that we'll continue to share.


Douglass & I will remain advocates for Alzheimer's & Dementia, but also for this disease which is new for us, Myelodysplasia. Please check out the site "Be the Match" for more info. 

Mama may have left her physical body which was failing her, but her energy is still very much alive. Her spirit, her sense of humor, her neurosis all still live thru me! Not a day goes by that I'm not in touch with her on some level. We always had a strong connection & she will continue to be our Dementia-Mama-Drama. She loved the attention, the recognition & showing others that we can still laugh & sing when everything seems unbearable. Mama, you are loved, you are missed & you are finally a star!


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Facebook: Facebook.com/Dementia.Mama.Drama
Twitter: @DementiaMama
   
                                                     

Having Your Daily Dose of MAMA DRAMA? If you're a Caregiver or an Advocate of someone with Alzheimer's or Dementia, show your support with Dementia-Mama-Drama Products. Click on our shop: Dementia-Mama-Drama Shop