할머니 - Halmeoni (Grandmother)

September 13, 2023 / Dementia

By AACs' Deputy Director Leigha 소연 Shoup

Alzheimer's disease, a relentless and devastating disorder, not only affects the individuals diagnosed with it but also casts a profound shadow over the lives of their caregivers. With millions of people worldwide grappling with this ailment, Alzheimer's is a constant reminder of the fragility of memory and cognition.

A Personal Journey

For many families, Alzheimer's is more than just a medical condition – it's an emotional rollercoaster that can forever change the dynamics of family life. I personally witnessed this firsthand as my Halmeoni (grandmother) battled Alzheimer's for years. The gradual fading of her memories and the erosion of her once vibrant personality were heart-wrenching to witness. What made it even more difficult was the toll it took on my mother, who selflessly stepped up to provide care and support. Halmeoni's journey through this affliction was a testament to the toll Alzheimer’s disease takes on both the person living with it and those who love and care for them.

One of the most heartrending aspects of Halmeoni's journey was her struggle with time itself. Caught in a maze of memories that had lost their chronological order, she would often find herself unable to distinguish what part of her life she was reliving. Past and present merged into a tangled web of confusion, leaving her perpetually disoriented and lost in her own timeline. In the later stages of the disease, Halmeoni would often pretend to recall events, nodding and smiling in conversations even when the memories had long faded. This coping mechanism, while a testament to the resilience of the human spirit, was a heartbreaking reminder of the gradual erosion of her cognitive faculties.

Perhaps the most challenging chapter of Halmeoni’s journey was the moment when she could no longer be left alone. The need for 24/7 care became paramount, a somber recognition of the disease's relentless progression. The burden on my mother grew heavier, as she juggled her own life while ensuring Halmeoni received the care and attention she deserved. Yet, amid the heartbreak, there was a steadfast thread that never wavered. Despite her inability to recall names or connections, the word "Halmeoni" remained etched in the hearts of those who loved her. It symbolized so much more than “grandmother.” It was a title not even Alzheimer's could erase.

Halmeoni's journey through the labyrinth of Alzheimer's was a painful reminder of the indiscriminate cruelty of the disease. But it was also an amazing insight to the resilience and strength of families who stand by their loved ones, navigating the storm with unwavering love and devotion, and cherishing every moment of clarity that breaks through the fog of forgetfulness.

Witnessing my mom's dedication to being a caregiver while balancing the demands of her career and other responsibilities was a testament to her strength and love. It was not easy for her to juggle these roles. As Halmeoni fought with the disease, my mother fought with the struggle of being a caregiver. I witnessed their struggle and felt helpless watching my mother shoulder the emotional and physical toll of caregiving. It's a reminder of the interconnectedness of family, where the impact of Alzheimer's disease ripples through generations, underscoring the importance of support, understanding and compassion for both the person affected and those who stand by their side.

In the midst of the challenges and heartaches that Alzheimer's disease brings, there are stories that remind us of the strength of the human spirit and the enduring power of love. Halmeoni's journey was remarkable due to her lack of fear, despite the disorienting effects of Alzheimer's. While she might not have recognized her own daughter, her essence remained intact. It's as if her heart recognized a familiar presence, even when her mind could not. The bond between a mother and child is a force that transcends memory, and it was this bond that kept Halmeoni connected, even during the confusion.

When her daughter/caregiver walked into the room, Halmeoni's eyes would light up, and a spark of recognition would flicker within her gaze. While she couldn't place her daughter's name or her own relationship with her, there was an undeniable familiarity that she held onto. It was as if her heart whispered that this person was significant, even if her mind couldn't quite grasp the details. One of the most intriguing aspects of Halmeoni's journey was the daily reset that seemed to occur. As the sun set and rose again, her memory seemed to refresh, giving her a new canvas on which to paint her experiences. The challenges of the previous day faded into obscurity, and each morning, she was greeted with a fresh start. This peculiar reset always seemed to be the light amidst the encroaching shadows.

Halmeoni's story serves as a reminder that love and human connection have the power to transcend the limitations of memory. While Alzheimer's might have stripped away the surface details of her life, it could not diminish the core of her being. Her journey was a testament to the depth of a mother's love and the profound impact it can have on the lives it touches.

The Struggles of Caregivers

Caregivers play an integral role in the lives of those living with Alzheimer's, but this role comes with its own set of challenges. Statistics reveal that more than 16 million family members and friends provide care to individuals with Alzheimer's and other forms of dementia in the United States alone. The emotional, physical, and financial toll on caregivers can be immense. Depression, anxiety, and stress are common among caregivers, as they deal with the demands of caring for someone with a progressive and unpredictable disease.

Data and Statistics

In 2020, approximately 5.8 million Americans were living with Alzheimer's. This number is projected to rise to nearly 14 million by 2050 if no effective treatments are developed. Alzheimer's caregivers provided an estimated $18.6 billion hours of unpaid care in 2020, valued at around $244 billion. Women are disproportionately affected, representing nearly two-thirds of Alzheimer's caregivers. Many caregivers are also employed, leading to challenges in balancing caregiving with work responsibilities.

Impact on Caregivers

Watching a loved one succumb to Alzheimer's takes an emotional toll that is difficult to put into words. Caregivers often experience a sense of loss as they witness the progressive decline of their family member's cognitive abilities. The once-strong relationships are reshaped as roles reverse, with caregivers now becoming the protectors and decision-makers.

Physically, caregiving can lead to exhaustion and burnout, especially as the demands of the disease increase over time. The continuous supervision required, coupled with the unpredictability of Alzheimer's behaviors, can lead to sleep deprivation and chronic stress. This is why it is crucial for caregivers to seek out resources to help them cope with the stressors that come with being a caregiver.

Resources for Caregivers

Caring for someone with Alzheimer's is a challenging journey, but there are resources available to provide support and guidance:

Alzheimer's Association - A comprehensive resource providing information, support groups, educational materials and a 24/7 helpline for caregivers.
Family Caregiver Alliance - Offers information, resources and online support groups specifically tailored to caregivers of individuals with Alzheimer's and other forms of dementia.
Local Support Groups: Many communities have local support groups for caregivers. These groups provide a safe space to share experiences, advice and emotional support. You can find some of these listed on the Alzheimer’s Association website.
Online Communities: Websites like Reddit and Facebook have dedicated groups for caregivers of Alzheimer's patients. These online communities can be valuable sources of information and empathy.

Conclusion

Alzheimer's disease is an undeniable challenge, touching the lives of individuals and families in profound ways. As caregivers face the emotional and physical burdens of caring for their loved ones, it's crucial to recognize the importance of their role and provide them with the support they need. By raising awareness of the impact Alzheimer's has on caregivers and sharing resources, we can collectively contribute to a more compassionate and understanding society for those navigating this difficult journey.

Leigha 소연 Shoup is the Deputy Director of the Adult Advocacy Centers. Leigha holds a Master’s of Science in Applied Behavior Analysis and Behavior Therapy from Southern Illinois University, Carbondale, and a Bachelor’s of Science in Hearing, Speech, and Language Sciences from Ohio University. She is a Registered Advocate with Advanced Standing in the State of Ohio, a Credentialed Advocate at the Intermediate Level with the designations of child abuse intervention specialist and sexual assault specialist through the National Advocate Credentialing Program (NACP), and is an Anti-Oppression Informed Practitioner (AOIP). Leigha has over 18 years of experience working with children and adolescents with disabilities. She is a state, national, and international presenter on the topics of diversity, inclusion, and accessibility when working with multi-disciplinary teams to serve survivors of crime. In July 2018, she co-published Serving Survivors with Disabilities - An Advocate’s Guide, and in 2019 she co-authored with national experts a first-of-its-kind protocol for interviewing individuals with disabilities called Advanced Forensic Interviewing Individuals with Disabilities (Project FIND). She was the recipient of the Children Safety Award in Allen County in 2017. Leigha works at the state and regional levels to review and create best practices that are inclusive and accessible to under-served populations. As a member of the disability community, her extensive knowledge of educational and victim advocacy for individuals with disabilities propels her to learn and lead in this movement.