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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