Preface: My mother has a rare brain disorder called primary progressive aphasia (PPA) is a language disorder that involves changes in the ability to speak, read, write and understand what others are saying. It is often associated with memory loss and dementia, and though mom has only rarely not known who I was for a short time, she does have some difficulty with other memory issues. She needs round-the-clock care, and thankfully for us, she’s was able to get inside a memory care unit in Fargo, N.D.
I’ve been detailing my nearly nightly calls with her for quite some time on Facebook. So many friends have asked me to publish, that I’ve just decided to do it. If only because it may help someone else going through the same thing.
This is my most recent post and my next submission will be the furthest back I can find. Then, perhaps, I can bring you, the reader, slowly back to present day. A window into this world of the unknown.
When Mom answered the phone, I started singing, “I just called to say I love you,” and she busted out laughing, then sang along.
Some studies find music can help brain disorders. I don’t know why, but it does seem to help and more importantly, to comfort.
We chatted a bit, and the conversation kept circling back to my visit! It seems she is just as excited to see me as I am to see her. We sang “One Bread, One Body,” “Be Not Afraid” and “How Great Thou Art” -— and she did well.
One of my friends lost her mother last night. She is also suffering similarly. And she is devastated.
As she told me at the time that her mother passed, I felt like an invisible stake pierced my heart. Wh? There’s nothing to say, really — only that just as we focus on things like time, they are entering the timeless.
I’m trying to console as best as I can, but I’m also secretly observing the process … just short of preparing. I’m in a sort of heightened state of awareness.
What will it feel like? How will I remain inside of a parentless existence?
All of this fuels my intention to be present and open to experiencing all that I can, with what I have, from where I am, for as long as we have left. …
It makes me feel proud for sucking the marrow out every single time I talk to her. For pushing aside all of the life’s distractions, for closing my eyes and pressing the receiver to my sweaty ear and for listening to her words with my heart and mind.
I remain hopeful in between our talks, and I’m grateful for all that I’ve been given.
Me: “Do you love me no matter what?”
Mom: “I do!”
Me: “Thank you!”
Mom: “Thank YOU.”
Me: “Good night, buddy”
Mom: “‘Good-night, peanut.”
Everything is now, isn’t it?