BY RILEY WILSON
“I love you,” “you are beautiful” and “all that matters is to be kind” are three phrases Mary Kirkendoll remembers her mother repeating during the 15 years she cared for her.
Her mother, who many knew as “Sweet Mama Marie,” had Alzheimer’s and was living in California. In 2004, Kirkendoll made the life changing decision to bring her mother into her home so she could care for the one who’d always been the caretaker.
“All I could do was bring her back to Kansas and keep going,” Kirkendoll said.
Putting her mother in a nursing home was not an option for Kirkendoll and she was not alone in her determination to care for her at home until her mother’s death at 81 years old this June.
Over 300,000 people offer caregiving services to loved ones in Kansas, with nearly 44 million providing care nationwide, according to AARP.
According to a 2015 AARP caregiving report, 49 percent of caregivers provide care services to a parent or parent-in-law, and they do this for an average of 24.4 hours per week.
“It just completely changes your life and what you thought it would be,” Kirkendoll said.
While her mother was still physically capable, Kirkendoll said she and her husband, Mike, had to help with almost everything else, including eating and going to the bathroom.
Kirkendoll taught at Pittsburg State University before changing her career to focus on yoga. She opened a yoga studio in Eudora in 2016.
“If I’m going to be able to help my mom, be at home, live not such a stressful life, I have to make a different decision,” Kirkendoll thought to herself as she decided to become a yoga instructor.
It was a team effort for her and Mike, as each would take care of her mother when the other had to be gone for work.
Kirkendoll said her mother also went through stages of agitation due to forgetting. For example, being angry that she couldn’t eat after forgetting she’d already eaten.
“There was never any normal,” Kirkendoll said. "We were constantly like, ‘Oh my God. What’s happening next?’”
Caregivers often face challenges such as lack of training for medical-related tasks, exhaustion and stress. Additionally, caregivers often have trouble leaving their loved one in the hands of others for the purpose of a short break or vacation, which Kirkendoll said she experienced.
A year and a half ago, her mother had surgery and, with no medical training, Kirkendoll and her husband had to care for her after. She said it was daunting at first, but soon became routine.
While she and her husband faced challenges, she said it was important to have a positive mindset.
“Taking that on, for us, we had to change our mindset for it not to be a burden,” Kirkendoll said.
Kirkendoll said shifting her mindset to thinking of caring for her mother as a blessing made all the difference.
The need for caregivers
As people age, completing certain tasks can become harder to do independently. Care.com specifies six activities of daily living that may become difficult for aging seniors, such as bathing and feeding. The ability of a senior to carry out those tasks can help indicate how much care is needed.
According to the AARP caregiving report, helping a care recipient get in and out of bed or chairs is the most common activity of daily living requiring caregivers' help.
Amanda Cooper, activities director at Medicalodges in Eudora, said these seemingly simple tasks can become dangerous for an aging senior.
“It could be simple tasks like putting your shoes on in the morning," she said. "It could be making breakfast, bathing, because there are always safety risks that can be involved with that, too.”
Debra Zehr, president and CEO of LeadingAge Kansas, said helping with these tasks can take a toll on caregivers.
Additionally, she said caregiving can be emotionally challenging for caregivers, especially in cases of dementia and Alzheimer’s.
“Those are all time consuming, sometimes physically taxing tasks that go on around the clock,” Zehr said.
Aging seniors need caregivers for tasks beyond just physical needs.
Zehr said taking medicine correctly and getting the proper nutrition are two vital services caregivers should ensure seniors are receiving.
“Without these, the adult may become more sick or frail,” Zehr said.
Finding a balance
On the other hand, Zehr understands the need for caregivers to care for themselves.
She said it’s important for caregivers to ask for help and take time to maintain their own health.
“If the caregiver doesn’t have enough sleep and they aren’t eating and they aren’t managing their medications, then that’s going to have an impact on their ability to meet their needs and stay in an emotionally good place,” Zehr said.
Among challenges caregivers face, finding support is one of the largest, said Janet Ikenberry, director of health and human services at the Senior Resource Center of Douglas County.
Ikenberry co-facilitates the Caregiver Support Group that has provided support to caregivers for over 25 years.
“The real purpose of the group is for people to have an outlet to talk about their frustrations, their fears, even their successes in caregiving,” Ikenberry said.
Seventeen percent of caregivers reported their health was fair or poor, AARP research found, which is higher than the national average of 10 percent.
Ikenberry emphasized the importance of caregivers taking time for themselves to maintain joy and health. Whether it’s taking a walk outdoors, going to the doctor’s office or maintaining a nutritional diet, Ikenberry said it’s vital for caregivers to be mindful of what’s going on personally.
“One of the things that the group emphasizes is that the caregiver needs to take care of themselves, because if they don’t take care of themselves, then there’s no one to take care of the person that they’re caring for,” Ikenberry said.
The Caregiver Support Group meets from 2:15 p.m. to 3:45 p.m. the first and third Monday of each month at the Senior Resource Center in Lawrence.
Support for the supporters
With the complicated tasks on their plate, caregivers need support not only from other caregivers, but from friends, family and the government.
Kirkendoll said having the support of friends and family in Eudora helped immensely, crediting small town friendliness.
“People I didn’t know were bringing me food, making sure we were OK,” Kirkendoll said.
The Kansas Lay Caregiver Act took effect in 2018, which helps caregivers and their loved ones make the transition from the hospital back to the home.
Hospitals are now required to record the name of a patient’s caregiver if they have one and provide the caregiver with information including discharge timing, discharge and aftercare instructions, and how to carry out nursing tasks.
Kirkendoll said they also used the Program of All-Inclusive Care for the Elderly (PACE) for 24/7 care support. Through this program, her mother was able to receive care when Kirkendoll and her husband weren’t able to do so, like when they were out of town.
For those seeking help outside the hospital, AARP offers free online tutorials through the Home Alone Alliance program on how to complete caregiving tasks, such as wound care, managing special diets and aiding with mobility.
With the resources she had available and the people in Eudora, Kirkendoll remembers caring for her mom as a loving experience.
“I’m so thankful that this chapter in my life, at least, was here,” Kirkendoll said. “That stamps it with a joyful stamp.”
Reach reporter Riley Wilson at eudoratimes@gmail.com.
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