Dignity in Alzheimer's Caregiving: Molly's Story
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By Molly Carpenter, Special to Everyday Health
When I was 17, my high school asked us to volunteer with a local service group. I chose to offer my time to Mcauley Bergan Center for aging adults in Omaha, Neb. The duties were pretty straightforward: I was to help with basic activities, such as serving food and offering companionship to the seniors. As a young girl, I was close with both my grandmothers, and so the work felt comfortable and familiar.
In the year that I volunteered, I got to know the elderly people in the program. But I connected most with Betsy, an elegant 82-year-old woman who dressed as if it was Easter Sunday every day: pastel-toned polyester suits with matching pillbox hats, kitten heels, and pearls. Betsy was in the early stages of Alzheimer's disease.
One afternoon, as I was setting up for an activity at the day center, I noticed Betsy standing by the couch with a stricken look on her face. She motioned toward the restroom and asked me to follow her. Normally, Betsy did not need help in the bathroom, so as we walked together, I became unsettled. Once I was in there it was clear what was wrong. Betsy had had a bad accident. “Oh no, oh no, I can’t believe this,” she mumbled, embarrassed.
In that instant I faced a choice: I could call for a nurse and leave Betsy at a moment of need, or I could help her myself.
It never occurred to me that as a volunteer I’d be put in this position. I was only 17 years old, and no one had prepared or trained me for something like this. But I knew I didn’t have a choice.
I took a deep breath and tried to remain calm, as if this was all in a day’s work for me.
“Don’t worry,” I told Betsy.
When it was all over, we both breathed a sigh of relief, and I began my lifelong passion and career working with seniors and as a caregiver advocate.
A Career in Caregiving
In college, at the University of Nebraska in Lincoln, I majored in family science with an emphasis in gerontology and received certification to work with the elderly patient population. Over the 15 years since, I’ve worked in nearly every capacity of the geriatrics caregiving industry: at facilities, in family homes, and even in a senior wellness program.
In my current role at Home Instead Senior Care in Omaha, the largest provider of home care in the world, I’m part of a team that is devoted to arming our 65,000 professional caregivers and the families we serve with the information they need to do a great job for each and every client. We interact with families on social media, during workshops and create training, tools and resources to help Home Instead CAREGivers, as well as family caregivers, cope with situations and problems that arise each day.
These tools primarily are in the form of interactive education sessions, in person or on the web, that aim to educate family caregivers on topics ranging from Alzheimer’s disease to basic caregiving skills. We also developed a book and app to provide immediate access to useful information and resources for those caring for people with Alzheimer’s disease or dementia. I helped to create caregiverstress.com, a site that helps caregivers understand and cope with the emotional toll caregiving can take on families and on themselves. Although I am not involved with direct caregiving every day, I am very fulfilled knowing that the work I do positively impacts professional and family caregivers.
Listen and Learn: A Caregiver's Mantra
Caring for a loved one suffering from Alzheimer’s disease and other types of dementia is challenging at best. In the beginning, taking care of that person will be maddening and frustrating and terrible. And frankly, you won’t be very good at it. I wasn’t.
So how do you stay in control but still allow your loved one to maintain dignity? My answer has turned more pragmatic over the years. You do it by listening.
I’ve found the best caregivers are the ones who give themselves permission to enter into the world of the person they’re caring for. What that means is looking for signs – the life someone once led, their passions, daily routines, and memories, all still matter. But now they are more important than ever.
Four or five years ago, I worked in the Alzheimer’s unit at Brighton Gardens, an assisted living facility in Omaha. Each day at around 3:30, Theresa, one of the residents, would get extremely agitated and tearful. In this state, she was inconsolable and impossible to control. The other constant was that she’d continually mention a man named George, her husband.
Eventually, my colleagues and I found out that throughout their decades-long marriage, 3:30 was always the time Theresa started to prepare dinner for her husband and children. Theresa was simply concerned about making sure the meal was on the table for her family.
So I started a routine. “Theresa,” I’d say to her each day just before 4 p.m. “Are you thinking about dinner tonight?” Then I’d take out a cookbook and we’d sit and look at it together.
Conveniently, perhaps, it was also the time that the staff needed to start preparing the dining hall for the meal we served each evening to around 30 residents. Theresa would help set the tables, she’d fold napkins, and pour water from the pitchers. Some days we would even try preparing a recipe or maybe warming the rolls. And on the days I wasn’t there, my colleagues knew exactly what to do to be sure Theresa was happy.
At the heart of all caregiving is empathy. Not empathy in the way most people use the word, synonymous with sympathy, but empathy is the truest sense. Successful caregiving starts when you put yourself in someone else’s shoes, when you learn to try and see what they see, and when you create a relationship based on respect and dignity.
Molly Carpenter, M.A.,is an author, speaker, trainer, and family caregiver. She currently works at Home Instead Senior Care, where she is part of a team devoted to providing resources and training to Home Instead’s 65,000 CAREgivers. Carpenter was instrumental in developing a person-centered approach to Alzheimer’s care that has since been adopted globally by the company. She is the author of , an essential handbook to help caregivers understand, manage, and help alleviate dementia-related behavioral symptoms. All proceeds from Carpenter's book go directly to dementia-related charities through the Home Instead Senior Care Foundation.
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