Mary Kirkendoll knows the anger, frustration and depression that come with an Alzheimer’s diagnosis.
For about 15 years, she cared for her mother, Marie Spanier or “Sweet Mama Marie,” who died in June 2019.
Kirkendoll said she and her husband felt alone and did not get help until her mother was far into the disease. For about 10 years, they struggled to know what to do.
“We didn’t really reach out to anyone about, you know, any caregiver groups, or ask for advice. We were just thrown into it, and we were early in our careers and we were finishing our degrees,” Kirkendoll said. “We sort of just learned as we went.”
About 55,000 people ages 65 and older are living with Alzheimer’s in Kansas, according to the Alzheimer’s Association. Over 86,000 family caregivers are also impacted by the disease.
Recent seasons of the NBC series “This Is Us” have spurred discussions about the impact of Alzheimer’s on families over the course of years. The show is now exploring more challenging phases of the disease in its final episodes that air Tuesday nights.
In a recent interview with People magazine, actress Mandy Moore, who plays matriarch Rebecca Pearson, describes why it is important to normalize having conversations about the disease.
“I hope that this show engenders more of a dialogue around dementia and Alzheimer’s in general,” Moore said. “It’s a terrifying diagnosis and helping to humanize and destigmatize what it means to find yourself or a loved one in this particular battle is a big deal.”
“There’s so much to learn”
For the Kirkendolls, the emotions in the early stages of the disease were challenging – both for them and her mother.
“I was in denial at that point because I wanted to be a normal college student, so I sort of ignored it until it was really apparent,” she said.
Kirkendoll said her mother would get frustrated at them for not understanding Alzheimer’s and for arguing with her.
Kirkendoll had a light bulb moment about eight years into the disease. She realized how frustrated she had been, and there was so much she could still learn from her mother.
It was her job, and she was 100% in, she said. Kirkendoll said that was a beautiful moment that changed everything for her, including their relationship.
It helped to not argue with her mother and to wait for the right time to bring it back to reality instead of inserting reality onto her, Kirkendoll said.
“Another thing I would suggest to people is not pushing them off and thinking they don’t have anything to offer anymore. Like my mom taught me so much in her final years when she had no memory,” Kirkendoll said. “I think for the American culture, we kind of put elders in the corner once that happens, but there’s so much to learn and continue learning, no matter what stage anyone is in.”
At the end of her life when her mother had lost her memory completely, she was sweet, loving and open, which resulted in the coining of her nickname “Sweet Mama Marie.”
“After a while, we just went along with her fantasies. When we were fighting it, it was frustrating for everyone,” Kirkendoll said. “It was really beautiful to watch her not have any layers, like we all have. It was amazing to witness the last few years.”
Kirkendoll thinks caregivers should reach out and talk to people going through the same thing or join a support group.
“I don’t know why we didn’t do that. We just were really busy, and we just tried to figure it out ourselves,” she said. “I think having a community around you where you didn’t feel alone and, for us, we felt alone for a good few years.”
Raising awareness
Courtney Goin has been a volunteer facilitator for the past nine years of a support group for the Heart of America chapter of the Alzheimer’s Association, which serves Kansas and Missouri.
She has seen an increase in advocacy for the diseases but thinks there is still a long way to go.
Goin thinks research funding for Alzheimer’s is lacking in comparison to other diseases, even though Alzheimer’s is a major issue. Early detection and diagnosis are an important way to keep people higher functioning for a longer amount of time, Goin said.
“A show like ‘This Is Us,’ that’s so wildly popular, brings awareness in the fact that, you know, go to your doctor if you think something is wrong,” Goin said. “Yes, there are no medications that will halt or reverse the disease, but there are medications and things you can do like diet and exercise that will slow down the progression of the disease.”
Janet Ikenberry also thinks discussing and showing Alzheimer’s through TV shows like “This Is Us” helps people be less scared of publicly talking about the disease.
Ikenberry facilitates a caregiver support group for people with family members with Alzheimer’s and other forms of dementia.
“Raising awareness about the topic in general and making it okay to talk about is not a bad thing,” said Ikenberry, who is also director of health and human services at the Douglas County Senior Resource Center. “Overall, that’s a positive thing for folks to be able to have that conversation and not feel like it needs to be whispered about or talked about behind closed doors.”
Ikenberry felt “This Is Us” had an accurate portrayal of what it can be like for a family to help care for an individual with Alzheimer’s but also thinks it can look different for every family.
“One person’s journey is one person’s journey. You know, there are similarities, sometimes you end up at the same place at a different point on the journey. It all kind of ends up at the same place, but getting there is different for everyone,” Ikenberry said. “Having that united front, and getting things in order, that is very wise and a good thing to do.”
Seeking support
Many of the participants in Ikenberry’s support group are caregivers or have had past experiences in caregiving.
The group has been taking place for 30 years and is different than most because it includes present and past caregivers.
Some of the group participants who previously cared for their loved ones before they died just want to give back to those who are going through similar experiences now, Ikenberry said.
Ikenberry thinks the most important mantra for caregivers to keep in mind is “remember to take care of yourself.”
When you are constantly tending to another person, some individuals can forget to take care of their own well-being and neglect their own physical health, Ikenberry said.
She said it’s important to get involved with the family member’s doctor and make sure they are receiving good health care. It is also good to get a diagnosis from a neurologist, in addition to seeing a primary care physician, she said.
During the support group meetings, participants introduce themselves, tell their personal experiences and talk about the person they care for or cared for.
The group also talks about the importance of getting legal and financial aspects in order while the person is still able to. The goal is to make members feel less isolated and alone.
The group meets from 2:15 to 3:45 on the first and third Monday of each month on Zoom. Any person involved in caring for a person with Alzheimer’s or dementia is welcome to join.
People who are interested should call Ikenberry at (785) 727-7873 to get the Zoom information.
Reach reporter Sara Maloney at [email protected]
