News ArchivesRead News
Mothering and Daughtering
Tuesday November 20, 2012
Caregiver.com - She is standing at the kitchen sink ready for church: flowered skirt, knit top, matching blouse, stockings, comfortable shoes, makeup. It must have taken her a good three hours, but she is ready to go. I catch myself as I am just about to say, “Wow, I’m so proud of you. You did it all by yourself.” Moments before, I had said those very words to my son, Madoc, about putting on his own shoes, and he’s two and a half. My mother just turned 75. “Wow, Mom” I say instead, “you look great. Let’s go.” If someone would have told me I’d be living with my mother as I neared my thirty-fifth year, I would have shaken my head and laughed. No, you’re mistaken. Wrong girl.
I was the child she was going to raise “right.” The youngest of five, I internalized my mothers dreams of “success.” I worked in Hollywood, became an Associate Producer, went to Cannes, wore expensive sunglasses. I spent a lot of time on the phone with my mother telling her about who I had become, as though all of those things mattered to me. Secretly, I believed they only mattered to her. I was, if only for a brief time, the picture of her successful daughter. But the lifestyle really didn’t suit me. The long hours, the shiny, flashy, self-congratulating nature of the business was simply not me. So my husband and I moved north and started living our own lives. We renewed our vows. We made good friendships. We had a baby.
Fast forward years later, and I’m shaking my head. Not only is the fact that I live with my mother incredibly true, the other facts are these: she has Parkinson’s, I have a toddler, and this is a powerful time of learning for both of us.
I help my mother into the car and put her walker in the back next to my son. It’s less than a mile to the church, but once we get there, it’s still a long way until she can sit down again. We both take a deep breath.
“Is church where people go when they’re sick?” Madoc asks from his car seat behind us. “No, Sweetie,” I say, “That’s when we took Grandma to the doctor’s office. Church is where people go to—“ I don’t know what to say. Our church is just one of the things we left behind in California and this rural Utah alternative doesn’t support any of my or my husband’s values. My mother chimes in, “Church is where people go to pray.” I’m grateful for the simplicity of the statement, and since prayer is a big part of our home life, my son is content with her response.
Sometimes I’m really patient with my mother, even playful. On this particular day I’m too tired to be either, so we walk silently to the heavy oak doors of the church. From there, someone will help her through the day’s busy schedule of meetings and lessons and worship. Then someone else will give her a ride home. I’ve left my son in the car and am feeling uneasy about it, so I’m short with her. “Bye,” I say, “See you at home.”
Each step she takes, each movement she makes, is filled with pain. She is slow. Unsteady on her feet. Walks with a walker around the house. Sometimes just taking a bath leaves her exhausted and she needs to rest before moving on. I wish she were better at asking for help. But I know it is hard. When someone needs help with so much, it is hard to keep asking. She chooses her moments carefully. Usually it’s when my husband or I get up from the couch to get something from the kitchen. “On your way back,” she might say, “can you bring me a glass of water?” I feel like such a heel wondering how long she’s been thirsty.
At other times, when I take over for her, fill up the bathtub or button her shirt fo her, I wonder if I’ve just robbed her of something. Some nugget of dignity or self respect. Have I stepped in too soon? Did I just deprive her of the opportunity to learn some sacred lesson? The lesson of patience, perhaps, or of learning to ask for and receive help? Ironically, I find myself in the same predicament everyday as a parent. Teetering as I try to find the delicate balance of doing something for my son, or letting him do it himself. Most days I have no idea what I’m doing and I just have to go for a walk or take a bath and start again in the morning.
On another day we’re at the local super-center. Madoc is in the front of the basket I’m pushing. My mother is following behind in a motorized cart. It’s a very slow process, shopping. We’re looking for shoes and clothes my mother can put on and take off by herself.
I do most of the cooking and we eat a lot more organic produce and fewer microwave dinners than she is used to. In fact, she has slimmed down so much in the two years that we’ve lived together that she looks like a little girl playing dress-up most of the time. Any clothes that do still fit, don’t work anymore for one reason or another: too many buttons, zipper in the back, drawstring that requires tying. Basically, I realize as we’re inching down the aisle toward the women’s clothing, we’re shopping for the same type of clothes I buy for my toddler. Clothes that are easily put on and taken off by fingers that don’t have a lot of motor control or strength. Clothes that build self-confidence and foster independence.
Days like this require a sort of walking meditation: help my mother try things on, get Madoc a snack, go visit the goldfish in the pet section, breathe, then back to women’s clothing to check on Mom, go through the grocery list, then to the checkout counter to pay the cashier, push the debit button, pick up the pen my son has just flung to the floor for the third time, breathe, go get the car, strap my son in his car seat, bring the car around to the store entrance, help my mother into the car, return the motorized cart, notice that my car is still leaking oil and is now smoking. (I had hoped that problem had solved itself last week, but apparently, it’s still there.) Breathe. The journey of a thousand miles must begin with a single step. No one ever mentions the fact that the journey could be as simple as a trip to the local super-center.
I used to feel like I came late to the party of “knowing what I wanted to be.” It was a painfully endless worry of mine for years. Many hours of therapy in Los Angeles didn’t seem to help. Oddly, at this time in my life, the pain of not knowing what I want to be is absent. I just am. I stand in awe on a daily basis observing our life together. How poignant it is for me to witness the beginning of my son’s life and the end of my mother’s life at the same time. To help Madoc off with his shoes. To give him a bath. To help him climb into bed. To help my mother off with her shoes. To give her a bath. To help her climb into bed.
On some days the intimacy is too much for each of us and we ignore the fact that she needs help doing things. Instead, she does them alone, slowly, painfully. We agree, silently, that it is best. And on other days I am very involved with her care. It’s a delicate dance of the mother and the daughter. I wonder sometimes how long we will do this dance together, when she might be better served by someone else, or when I might wear out.
Right now, my son and his grandma are playing cars outside on the porch. At the end of a wooden car ramp my mother has placed an old washboard. “One for the money,” my son’s small voice sings, “two for the show; three to get ready; four to go!” This is something she must have taught him. The cars careen down the ramp and rattle across the washboard before landing on the porch step at their feet. I watch them from the kitchen window as they both laugh, my son putting the cars at the top of the ramp over and over and over again. Her patience with him is unending. They could not do this over the phone.
He feeds her spirit, and she feeds his. Witnessing that feeds mine. It’s not the picture any of us imagined. Living this close together is hard on all of us sometimes. When she wanted to raise me “right,” I think she had a much shinier picture in mind. I certainly did. But here we are together, mothering and daughtering under the same roof once again, knowing that for this delicate dance, however long it turns out to be, we have all grown incredibly grateful.
Recent NewsMay 24 - Survival Rates Differ Widely in Parkinson's, MSA, Lewy Bodies
May 22 - Discovery may offer hope to Parkinson's disease patients
May 15 - Study offers answers on life expectancy for people with Parkinson's disease, Lewy body dementia
May 5 - Parkinson's in a dish: Researchers reproduce brain oscillations
May 5 - ‘Hunger Hormone’ Could Help Treat Parkinson’s Disease
May 3 - Antibiotic doxycycline may offer hope for treatment of Parkinson's disease
May 1 - Impulse Control Disorders in Parkinson's Disease: Building Physician, Patient Awareness
Apr 28 - Does Parkinson’s disease begin in the gut?
Apr 28 - New empathy-creating digital device could be revolutionary for caregivers
Apr 24 - Treating Depression With Deep Brain Stimulation Works—Most of the Time
Apr 24 - Parkinson’s disease shows links to depression
Apr 21 - TOLEDO Trial: Apomorphine Infusions Reduce 'Off' Time in Parkinson's Disease
Apr 21 - New drug provides long-awaited breakthrough for Parkinson's psychosis
Apr 12 - Obstructive Sleep Apnea Affects Cognition in Parkinson's Disease
Apr 11 - Seattle boxing gym giving hope to Parkinson's patients
Apr 10 - A new rhythm
Apr 10 - Brain cells reprogrammed to make dopamine, with goal of Parkinson's therapy
Apr 6 - FDA allows marketing of first direct-to-consumer tests that provide genetic risk information for certain conditions
Apr 5 - Combatting the isolation of young onset Parkinson's disease
Apr 1 - The Kid is Alright