Preserving the Dignity of Our Aging Parents
Provide autonomy and choices whenever possible
There will eventually come a point in time with aging parents when the world tilts and roles begin to shift. It's the period when, as children, we begin to feel more like the parent. And for our parents, like it or not, they can begin to feel as if they're being treated like children. None of this is comfortable. All of it feels sad.
This transition can happen gradually, as cognition and physical ability change. Or, in the case of a medical emergency, the balance of decision-making and independence can be transformed overnight. In all cases, navigating the new landscape is fraught with emotion and confusion and, for many, requires strategies that can help preserve dignity and hand back power in the relationship. Making matters worse, adult children are often put in the position of having to say no to their parents, whether it's due to physical balance, safety issues or other reasons. In every case this is usually a complicated and frustrating journey for all involved.
As my father began to succumb to the ravages of dementia, independent tasks and activities gradually disappeared or were taken away. The ability to travel alone was the first painful step. As a retired businessperson, he had enjoyed donating his time and talent on the boards of charitable organizations, but that eventually ended. Next up on the chopping block was his ability to drive and, after that, manage my parents’ finances. For both of us, the conversations were painful. Each diminishment felt like a wound.
So, how could I find ways to demonstrate that he was still my father and I his child? Beyond simply feeling love and devotion, I wanted him to understand that I still viewed him as an accomplished person, someone whom I respected and admired.
The biggest ways I could achieve that goal were to focus on the small things. I found that I could reaffirm that he had choices in his life by asking questions, sometimes as simple as did he want to wear the gray pants or the black ones?
I canvassed a number of caregivers to see what worked for them and what tips they had to offer. For most everyone it came down to the same formula I had hit on: providing choice in every possible situation, from what to eat, to whom to visit, to which game to play, to whom they might want to talk to on the phone.
"Being able to offer an array of options regarding the small, daily things is essential,” says Tracy Turner, a social worker and bereavement counselor. “Another way to engage is to draw on your parent's decades of life experience and wisdom, whether it's asking a question about child-rearing, events from the past or their opinion on a topic or news item.”
Watching my mother's life become more circumscribed in her independent living facility, I witness my mom's frustration at not being able to do things for herself as her skills and abilities lessen. I've found that some of our best conversations are when I ask her to tell me specific stories from the past or ask her to recount some of her experiences raising me and my sisters. “Did you ever struggle with …?” is an opener that I like to use. It feels to me both intimate and inviting. It signals that I'm about to tell her about something I am experiencing in my life or marriage and I'm asking her how she handled it. These are conversations I will remember long after she is gone.
Memory is a funny thing as we age. Like for so many of us, my mom's older memories are more vivid in her mind. The stories she recalls most clearly and loves to tell are of summers in Arkansas, watching her mother teach piano, her father's hole in one on the golf course and, yes, even getting pinned by old boyfriends. We got a giant giggle when I suggested we Google some of those past loves to see where they are now. Those moments of connection with her past reconfirm her sense of a full, well-lived life. They remind her that she is so much more than the less mobile person she is now, at 87.
Heather O'Leary, 53, of Manchester, New Hampshire, takes care of her mother, Kathleen McCullough, who suffers from COPD, arthritis and other health issues. “Straight talk about her situation works for us, and we communicate about everything,” says O'Leary, who helps her mother with the tasks of daily living, such as bathing, dressing and remembering medications. “We talk about how we can work around her limitations, and I let her try things on her own. I only step in when she says she can't do something.”
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Provide purposeful work
It was important to Kathleen Cairnes to make sure her mother, who lived with her before she passed away, had meaning, purpose and responsibility. Cairnes wrote menus on the kitchen blackboard so that her mother could choose what interested her and tasked her with folding laundry on the couch. “I even put her in charge of changing channels on the TV, so we could watch our favorite shows."
Life changed overnight for J. Appell when her father suffered a stroke and she returned home to Belgrade, Serbia, to help him get back on his feet and relearn simple tasks. Just when things began to turn around, her mother had a stroke, plunging life into chaos once again. “Trying to keep their independence was important to them and to me,” she explains. “Often caregivers take things over and start doing things out of good intentions, but they unnecessarily add to the decline of those they care for."
Appell created a giant wall calendar so that her parents could follow the new routines. Large print and photo instructions on walls helped them remember medications and important tasks for the day. She installed shower safety bars and put a list of emergency numbers over the phone, along with loading a laptop with an automatic answer feature in the Skype app. While her mother no longer cooks, she is able to clear the table after dinner. And Appell continues to modify the routines as her parents decline in health. “The independence recipe is ever evolving, as is the level of care,” she reports.
Give control with some oversight
Sometimes it's the invisible things that help return power to ailing parents and maintain their dignity. Kathy Silhavy's mother in Cartersville, Georgia, still pays most of her bills because it makes her feel in control. “I have the stamps,” Silhavy says, “so I'm able to check her bills before they get mailed."
In the end, each of us knows our parents intimately. One size doesn't fit all in caregiving, and finding the balance with different personalities and within the parent-child relationship is often a complex dance.
Toward the end of his life, my father lost the ability to speak. I could read the pain on his face at his inability to find the words. In those moments all that was required was a hug. “You are my dad, and I love you so much,” I would say. “You will always be my dad."
Lee Woodruff is a caregiver, speaker and author. She and her husband, Bob, cofounded the Bob Woodruff Foundation, which assists injured service members and their families. Follow her on Twitter and Instagram.