Karen Coma has fond memories as a child of spending Mother’s Day in Los Angeles. “We had a great back yard and would spend time on the patio or swimming in the pool. Dad would barbeque and we enjoyed being together.” Karen, a Charlotte resident, thinks a great deal about memory these days — some precious, some bittersweet.
“Well, that’s inconvenient,” replied Ethel Lange, Karen’s mother, upon first learning of her Alzheimer’s disease diagnosis in 2014. “Her response is so my mother,” shares Karen. “She’s never drama and always a pleasant response.” Born in 1928 and the youngest of six children growing up on a farm in rural Missouri, Ethel’s family was hard-working and raised cows and crops. “Dad took a job with IBM in Kansas City and then we moved to Los Angeles when I was 10 years old,” offers Karen. “Mom did some clerical work as she could type and file. She was good assistant to those she worked for. Our house was always extremely tidy and everything in its place. She loved to garden, be outside as well as read.” “Grandma Ethel is the sweetest lady,” adds granddaughter, Stephanie. “She would talk to anyone and everyone and be your friend.” Before her diagnosis, Ethel enjoyed visiting and playing cards with her neighbors. She wanted to know everything about your life and I remember enjoying just sitting with her and talking about school or my job and showing her pictures of events.”
Karen’s dad passed away from heart-related issues in 2013. “I have two siblings but was appointed as the executor and helped my mom through his affairs,” says Karen. “In dealing with the financial aspect of things, it became obvious that mom was having cognitive challenges. Her short-term memory was impacted and she was not able to keep track of information easily.” Shortly thereafter, Karen made an appointment for her mother to see a neuro-psychologist who confirmed her concerns.
Ethel moved from her home in Fort Mill, S.C. to long-term care community in Charlotte, N.C. shortly after being diagnosed. Her condition then became such that her family needed to move her to assisted living in another Charlotte area community. Ethel fell on March 11. They knew she was hurting but still able to walk. “I took her to the dentist that day,” says Karen. “During the trip she complained that she hurt but kept on with her normal positive outlook.” Upon returning from the dentist to her room, the staff brought in an x-ray machine and it showed that Ethel had broken her hip. She had hip surgery mid-March just before the COVID-19 lockdown and remained in skilled nursing care for a few weeks. With her short-term memory issues, Ethel could not remember injuring her hip, the surgery or why she was in a hospital bed. “I wrote a note for her to have in her lap ‘Ethel broke her hip. Ethel had hip surgery.’” She required 24-hour nursing care during that time to keep her quiet and keep her in bed as she is not one to sit still. Karen adds, “her memory loss really flares when she’s out of her element and out of her space.”
“The pandemic has been really hard on our family especially when it comes to visiting my grandmother,” shares Stephanie. “Holidays have been the worst. We would usually go visit her or bring her to our family celebration, but due to the pandemic visitation has been so limited. It’s sad to say but I have not hugged my grandmother in over a year.” Karen, notes, that Ethel does not remember when she visits, so it has alleviated some of the guilt associated with not being able to visit her in person. “So when I do visit her, I really try to make it about her. Take her something special, tidy her room.”
Karen knew Katherine Lambert, CEO of the Alzheimer’s Association, Western Carolina Chapter through another organization in which they both had participated. “Several years ago Katherine invited my husband Steve and I to join her Walk to End Alzheimer’s – Charlotte team. After further evaluation, Steve [Karen’s husband] suggested that we get involved with the Charlotte Walk but create our own team. I think Katherine was initially surprised by our decision [to form our own team] but did not realize we had a connection to the cause through my mom.” The following two years (2018 -2019) Steve and Karen co-chaired the Charlotte Walk. “After chairing for two years – what it taught me was – Wow – the Alzheimer’s world is huge. There are a lot of people suffering. While there is currently no cure, there are lot of people working to fix it from scientists, to care and support and educators. The ability to attend the Walk and talk with people -hear their stories – not so much sharing mine but to be able to listen to theirs, that helps me know that I’m not alone in this journey.”
Alzheimer’s disease does not discriminate and impacts those on every economic level. “My parents scrimped and saved their entire lives so my mom can afford to live the ways she does,” says Karen. “Many people have to take care of their loved ones themselves as it’s their only option financially. I can’t imagine doing that day in and day out. It would be so hard.” While the Alzheimer’s Association’s efforts with research are critical, Karen believes that the more immediate impact is the caregiver support resources being delivered. “Caregivers need support, they need rest and they need to vent. Having specialists available a phone call away or the providing the ability to join a support group where advice can be given is so important.”
“My involvement with the Alzheimer’s Association actually began in Memphis, TN,” says Stephanie. “I participated in the Walk to End Alzheimer’s – Memphis in 2018 and joined it due to my mother’s involvement as its Walk Chair in Charlotte, and enjoyed hearing all about it. Little did I know I would later become a committee chair. The Memphis Walk is considerably smaller than the Charlotte Walk, and I thought what a great way to continue spreading awareness and seeing if we can grow the Memphis Walk.”
“Stephanie has been incredible support,” asserts Karen. “She volunteers with us and just moved back from Memphis. She’s been a part of the Walk team and knows Grandma. She sees what I do and my emotion as well. I worry, ‘Is she just taking notes so she will know what to do when or if I’m in my mom’s position?’” “I try to be my mom’s sounding board,” adds Stephanie. “I listen to the problems and help as much as I can. Caregiving is tough, sad, frustrating, but always rewarding knowing my mom is providing the best care and support she can for her mother.”
“I said good-bye to my mom a long time ago,” admits Karen. “She still knows who I am and while she’s still the same person, she is so different. It’s a very shallow person there. I don’t want her to have the bad part. I don’t want her to not be eating. I don’t want her to not be ambulatory or know what is going on in the world around her. I’d rather her pass away from something other than from the final stages of Alzheimer’s disease. A softer, kinder passing would be easier.”
Even though she will be traveling this Mother’s Day, that will not interfere with Karen’s plans to visit her Mom beforehand. “I will get a card to her with some flowers and cookies – she has a sweet tooth and sweet is last remaining taste sensation. Being able to visit with my Mom in person is so important to me – to be able to touch her and hug her. Each time I wonder if it will be the last.” “I never know what will happen when I see my grandmother but I always have to show up with a smile and go with the flow,” comments Stephanie. “If she asks about the weather 10 times, I will answer it 10 times. You can’t get frustrated or annoyed, she doesn’t remember and enjoys my company and that’s what matters.”
“While it’s very difficult emotionally, I know there’s a reason why my mom is still here,” concludes Karen. “It does make you question why. Then I realize that it’s not really for my mom probably, it’s for us the living – she is here to teach us. To teach us to approach each day as she would have – kindly, patiently, with a listening ear. Those are lessons I take from my mom as that’s the way she lived her life.”
Honor the mothers in your life this May by joining the Alzheimer’s Association’s multi-faceted fight against Alzheimer’s.
Attend an education program
We offer educational opportunities for anyone interested in learning about Alzheimer’s disease and other forms of dementia. Education programs cover a variety of topics relating to memory loss and aging and are intended to help anyone with concerns or interest. Join us for a free live virtual event.
Become an advocate
Alzheimer’s disease is one of the most critical public health issues in America. This is why we are unrelentingly advocating for public policies that increase critical research funding and support all those affected. Now is the time to join us. Help persuade policymakers to make Alzheimer’s a national priority by signing up to be an advocate.
Join us for Walk Day
Families facing Alzheimer’s and all other dementia need us now more than ever — and with your help, we can be there for them. Every dollar you raise through Walk to End Alzheimer’s allows the Alzheimer’s Association to provide 24/7 care and support while accelerating critical research. Register today for one of our 17 North Carolina walks to help those in your community and beyond.