Communicating with Mom: PSP and Talking

“Maybe I would have listened. But maybe, too. I would have just closed my eyes. Maybe I would have tried to memorize the smell of bug spray on my mother’s skin, or the way she absentmindedly braided my hair, tying it off on the end with a stalk of green grass” Jodi Picoult

When I make pie dough I mediate. I pile a cup of flour on my counter, cut up a stick of butter into tablespoon size chunks, and I cut it in. Slowly, and deliberately. I cut the butter into the flour until it is time for water. Pouring from a small measuring cup by tablespoon increments I slowly mix in the water until magically I have a ball of dough. Making pie dough reminds me of my mom. Not my mom who is in the nursing home, trapped in her own body, increasingly struggling to communicate. No, making pie dough reminds me of my Mommy. My Mommy, who made balloon buns every Christmas, who loved reading and going to the beach. My Mommy, who always knew what to say when I felt tired and sick and didn’t know if I could keep on keepin’ on.
The thing about PSP is that I still have glimpses of my mom. I still have pieces of her, but, in between these pieces is a woman who I don’t know anymore. Just when I think my heart can’t take anymore, PSP delivers something else on our door. Another new memory of my mom that I have to place beside all the other memories of my Mom. The woman who was and the woman who is. But, just like PSP has left me reeling from the losses, the despair, and all the bad memories the PSP has also given me gifts.

Communication

One of the many horrible parts of PSP is that it robs people of the ability to communicate. But, despite the lack of ability to communicate, the person is frightenedly cognitively aware. For those persons reading this that know me or who have read other things, I have written- the lack of ability to communicate with my Mom the way I used to is for me, one of the worst parts of PSP.
I miss talking with my mom. Hell, as an adult, I did it almost every day for an entire decade. Of course, I miss talking with my mom. But, I also hate that my Mom can’t talk with us. There are days when I spend hours trying to figure out what she needs, what she wants. The trying to figure it out is defeating. It is worse when she or I give up. Somedays, Mom is able to talk, whole sentences. On these days, I drink in her words because I know it could be the last time Mom tells me she loves me or the last time I hear what she is thinking. But more and more I am losing this gift, and more and more I sit as close to her face as I can and try my best to figure out what she needs. I watch her face as I guess…sweater? Bathroom? Smoke? And when her eyebrows lift to the sky, and her face turns into her new PSP smile I know I got it.

We now communicate in yes and no questions, thumbs up for yes, thumbs down for no. We now communicate in mumble jumble. Luke and I in her room, she is in a recliner, he is in her wheelchair, I am seated next to her chair on the floor…

Mom tries, ”your mumble jumble.”
Luke leans closer he says, “Ma, your what?”
She tries again, ”your mumble jumble.”
I start guessing, “you’re going somewhere? You’re in pain? Your…”
She doesn’t smile.
“Ok Mom, try again.”
”your mumble jumble.”
“is that a g? your g…” I reply.
I look at Luke, Luke looks at Me, Mom looks at both of us.
“I’m sorry Mom we are trying…try one more time.”
”mumble jumble gur mumble jumble.”
All of a sudden, I look at Mom, “yogurt! You want a Yogurt.”
Eyebrows raised, PSP smile, nodding.
Luke looks at me, “How did you figure that one out?”
“I am the Mom whisperer.”
“No you’re not, I am.”
“Did you figure out yogurt?” And I run from the room to get my Mom a yogurt.

Other times, simple communication takes longer. Before the nursing home, she was trying so hard to tell me something. If I had to guess I would have said it was probably the nuclear codes or something equally important. I worked at it for over thirty minutes and was getting nowhere. Then from the kitchen, Luke pipes up (yes, for some reason it is always Luke and me), “Jenny, you like word puzzles this should be fun for you!”
I look up, “umm…”
and he looks and me and says, “yeah when it is your dying mother not so much, huh?”

When the usual methods failed, I started with the alphabet. One letter at a time, give her time, nod yes if this is the letter and don’t if it is it not. It didn’t work. I moved on. Ok, Mom, I am going to try again. A…nothing, B…nod. Then, A…nothing, B…nothing, C…nothing, D…nothing, E…nothing, F…nothing, G…nothing, H…nothing, I…nothing, J…nothing, K…nothing, L…nodding. Then A…nothing, B…nod. Then, A…nothing, B…nothing, C…nothing, D…nothing, E…nothing, F…nothing, G…nothing, H…nothing, I…nodding. And again and again, until we had B-L-I-N-D S-P-O-T. I was still confused. Until from the kitchen, “Blind Spot, she wants to watch Blind Spot”

Eyebrows raised, PSP smile, nodding.

But then, there was the day I visited after she recovered from the flu- almost six months after the alphabet incident. I walked into her room, and she looked up at me from her recliner, “Hi Jenny, what is new with you?” We had entire conversations that day. Driving home I wanted to scream from my car to anyone who would listen, “I talked to my Mom today.” Sadly, no stranger would really understand what this meant. So, I sent texts to the people who have loved me through this. Ryan, L.R., Kate…”Mom said seven whole words in a row today! She was talking so good.”

Yeah, I miss talking with my mom. Even now, I will be at home living my life far removed from my Mom’s daily existence, and something will happen, a thought, an article I see, a political event, news from my doctors, something funny, or something sad and I will ache for her, I will reach for my phone and get ready to push the “mom and dad” button. Then it will hit me, a.) mom doesn’t live at home anymore, and b.) she can’t really talk anymore. So I pace the house, I talk to Ryan, I send Kate a message, sometimes I will go to Ryan’s moms house just because she is a mom, sometimes I text L.R., mostly I pace and I talk to everyone but my Mom, and while it is a nice distraction- it is not my mom. Then the next time I go to see her, which these days has been two or three times a week, I will tell her whatever it is I wanted to tell her. Depending on the day, my mom will answer, or if she can’t or if she is having a bad day the PSP will answer.

When I learned that more than likely I was heading for intestinal resection, I didn’t know how I was going to do it without my mom. Not that I don’t have support- I do. I have so much support and love it could fill entire cities. But, none of that support or love is my mom’s. I talked to everyone I could think of, and I just wanted to talk to my mom. But, it was not a good week for mom, and I had to tell her what was up. So outside, I knelt down next to her wheelchair as she smoked and explained, “I got my MRE results. Things are not so good. Benson said that I have some small fistulas and an abscess. I also have some serious inflammation and narrowing. He said that we can do Stelera and see but that I might need surgery anyway.” Mom listened. Then with all of her strength, “oh Jenny.”

I just wish I could process with her; I wish she had been with me when I had the test…but, my Mom has PSP, and I have to be strong for her. My mom has PSP, and somehow I have to figure out how to replace her with everyone else. Kate drove me to the illeoscopy, Ryan’s mom was the first to know about my MRE results, I am planning for surgery recovery without the reliance on my Mom, and it will be okay.

I am my mother’s daughter as are Kate and Emily. Luke is my mother’s son. I would like to believe we all got the best pieces of her in different configurations. Luke has her kindness. Emily has her sensibilities and politics. Kate, like Mom, was born to be a mom. Me, well I have her love for reading and her philosophies. I also look like Mom. Emily and I both do.

When Mom dies, she will live on in the four of us. She will live on in Jazzy. She will live on in the stories I tell, the way I live my life, and the love she radiated into the universe. She lives on today in each of us and in each of the pieces of her she gave to us. That is why when I need to talk to Mom, I talk to three other people and the combination of their support, love, and advice equals the one person who gave us each the best pieces of her.