The texture of love
by mymothersbrain
Sun-cooked car beneath my palms. Pea gravel on my knees. Love, I’ve discovered, has many textures.
Last week, my sister called Mom’s house to tell the caregiver she was on the way to pick them both up. The caregiver said, “Your mom went to bed already.” It was 6 p.m. The coloring books, the grocery store flyers, the scissors had been put away. My mother’s brain no longer compels her to color or snip junk mail for hours on end. When the brain says stop, she stops. Nothing more to do but sleep. When my sister told me this, dead leaves whispered beneath my feet. My heart stuttered. The days grow shorter, the tunnel we walk more narrow.
Mom needs to be kept active, to get some kind of mental stimulation, none of which is the care agency worker’s job. Her job is to cook a meal for Mom, to help her with toileting needs, to help her get up from the couch if she can’t do it herself. Medicaid won’t pay for more than that — and only for two hours per weekday of it, at that. There are people with greater needs, we are told; because my mother is mobile, can walk, can laugh (though less and less) her needs pale by comparison.
I asked the home aide once, “Did they tell you anything about Alzheimer’s patients when you started working here — about what the disease is and what it does?” They hadn’t. Not for aides to know why someone needs help, only that she needs help, and how to help. I got books — Coach Broyles’ Playbook for Alzheimer’s Caregivers, (a mouthful in Spanish: Plan de juego de el Entrenador Broyles para Cuidadores de Personas con la Enfermedad de Alzheimer), and The 36-Hour Day (Cuando el dia tiene 36 horas). Two copies of each, one for the aide, the other for the cousin who helps us with Mom. “Read them,” I said, “so that you will know what I’m talking about when we discuss my mom.” The aide said the books were interesting; my cousin said they made her cry.
Some days, the questions crowd everything else from my mind: Were it not for the hours she spends at daycare where she socializes with more than her family, would my mother’s brain atrophy more quickly? What will happen when we can’t care for her at home? We toured one place, my sister and I, a place that might accept Medicaid. The woman who showed us around was all business; that is, fifteen minutes after we started, she had to move on to someone else’s problem, someone else’s mother. But this is my mother, I wanted to shout at the curves under the dress, at the rose-cremed smile that didn’t reach the eyes — my mother! Still, I understood, reminded as I was of my news days: my camera trained on a man carrying a dead child washed up out of a creek after a storm, on a woman pacing the sidewalk in front of the house where family members were murdered. I could not function if I’d thought of them as my child, my family — mine.
No, mine is the crunch of green fruit that puckers my mouth, the rippled cloth on the table that won’t lay flat under my fingers. I prefer love when its texture is pressed linen, mirrored ocean. Some days, my greatest wish is to feel the slide of ripe apricot against my teeth.
© 2011 Beatriz Terrazas
Beatriz, your writing is so very beautiful. I just listened to “Tell Me More” on NPR at this moment (where you are a guest on tonight’s broadcast) and heard about your blog. I sought it out even as the show continued. Tell me more, indeed. My grandmother, who is dear to me, was diagnosed with dementia in May 2010, and she has been in a nursing home since last September. It’s beyond painful to see her fade, her dignity erased, her humor and spark diminished. (You mentioned in this post that your mother was laughing less and less. Yes, I understand that observation well.) And yet there are many moments of joy. Moments when we connect on the deep emotional level where we’ve always met. I am in New York and she in Orlando, and since March I’ve been visiting her every six weeks. Helping her with anything—eating, getting to the car so I can take her home for a visit, making sure she’s warm enough—is a gift. She’s given to me for so many years, all my life, and it’s a remarkable privilege to able to be there for her…
I too have been writing about this subject. About my and my family’s experiences as we help my grandmother through this journey. And I’ve been taking photos. As private as we are, expressing how it’s been for us has been a form of release. And a chance, maybe, to bolster others. The independent documentary photo magazine La Pura Vida recently published my photo essay, “Claudina.” In the spirit of “My Mother’s Brain,” I will share it here: lpvmagazine.com/2011/09/kristina-feliciano-claudina/
Thank you for your graceful writing, your candor and insights.
Kristina
Kristina,
Thank you for the comment and for the link to your story. I’m so glad you’re sharing it here, and with other readers in La Pura Vida. I read it, saw the photos, and can certainly empathize. It must be so difficult to perceive, as your grandmother did, that others are trying to imprison you and that you can’t do anything about it. Oh, that photo of Claudina with the dog and telling the dog that she was in prison is so very poignant. I will probably share it again on Twitter and FB. Again, thank you for reaching out. I’m always comforted to know I’m not alone.
Beatriz
I ran into your mom at the store about a year ago, she was with her caregiver, she told my wife and I, we make a beutifull couple and asked for permission to hug us both. We agreed and she gave us her blessing. My wife growing up in Town n Country had seen her before. It put a smile on my wifes face and made her realize what a blessing we have to be together as a husband and wife.It brought tears to her eyes. Your mom spoke what she felt and seeing us together made her happy. Most of us feel this when we see other people but thru our society are afraid to express it. That little hug in the produce section of the Shur Save went a long way. God has a way of letting you know he is watching over you and wants us to be happy. That day he used your mom to speak to us with a pure heart. Its unfortunate of what your family is going thru,but her words and her smile is embeded in our memory for life.
Beto, thank you for sharing the joy my mom gave you and your wife. She always loved your family!
thank you, Beatriz, for continuing to ask the unanswerables.
[…] A beautiful picture of love, though the canvas may be worn and ragged. Sun-cooked car beneath my palms. Pea gravel on my knees. Love, I've discovered, has many textures. Last week, my sister called Mom's house to tell the caregiver she was on the way to pick them both up. The caregiver said, "Your mom went to bed already." It was 6 p.m. The coloring books, the grocery store flyers, the scissors had been pu … Read More […]
The texture of your words reveals a heart that will never stop giving.
Thanks, Debbie!