VOICES: How Caregiving Shaped Me

When people step into a caregiving role, they might find themselves struggling to maintain their own identity. It can be easy for a caregiver to forget who they are outside of the role, but there are ways to find support.

“Juggling the Responsibilities of Alzheimer’s Caregiving”

Juggling the Responsibilities of Alzheimer’s Caregiving

As Alzheimer’s progresses, many caregivers find themselves coming to the challenging realization that their loved one may not be safe living at home. Dementia caregiving expert Teepa Snow encourages caregivers to have a discussion with their loved one about moving into a long-term care facility early, if that is an option financially.

Many caregivers, like Anica Leon-Weil, feel a sense of guilt for moving a loved one into long-term care, but Snow encourages them to reframe it. “They [the person receiving care] would have been in a better place with me not being so distressed — [but] it feels like I’m trying to get rid of them, versus we’re trying something different because we seem to be struggling here.”

Leon-Weil was juggling being a new mom, owning her own business as a licensed therapist, and caring for her mother who was living with Alzheimer’s. She tried to honor her mother’s wish to remain in her own home by installing security cameras, hiring a live-in caregiver, and setting up Meals on Wheels services.

As time went on and her mother’s condition worsened, Leon-Weil reflected, “It became clear that no one was thriving; we were all barely hanging on.” She said the decision to move her mother into a long-term care facility was ultimately the best choice for her safety and the wellbeing of their family.

“Finding Strength in Caregiving”

Finding Strength in Caregiving

Frontotemporal dementia, the most common type of early onset dementia, typically begins between ages 40 and 65. Kristin Medica’s husband was 36 years-old when he finally received his diagnosis after years of showing symptoms and being misdiagnosed.

Medica found herself, a newlywed, and mother to a young daughter, navigating caring for her husband, working full-time, and trying to make sense of this new journey. Online spouse and caregiver groups were like a guiding light, she said.

“Multiple times a day, I found myself drawn to these groups, trying to better understand my husband’s struggles nearly as much as my own. I felt an indescribable connection to my new peers,” Medica writes. “They helped me feel less alone. By hearing their stories, I came to better understand my own. They helped me see that this journey was also about me, my needs, and how much it changed me and my life; that it wasn’t selfish to admit that, and in fact, it was necessary.”

“Becoming a Caregiver in My 20s”

Becoming a Caregiver in My Twenties

Maddi Sidery was only 20 years-old when her mother was diagnosed with early-onset dementia at age 52. In the midst of stepping into a caregiving role and taking on legal responsibilities for her mother, Sidery was enrolled full-time in university, working a job, and caring for her younger brother. 

“We are often stronger and braver than we realize,” she writes, “and it’s only after emerging from our toughest moments that we can look back and say, ‘Wow, I can’t believe I got through that.’”

While searching for a way to create structure in her own life and not neglect her own well-being, Sidery discovered “time boxing” — a management tool designed to dedicate specific chunks of time to various aspects of her life and reduce distractions. 

Breaking her life into six categories — time spent with Mum, social time, time for herself, legal guardianship responsibilities, university, and work — Sidery found she thrived with clearly defined structure.

“This structured approach allowed me to get everything done while being fully present with her during our moments together,” Sidery writes. “Allocating time specifically for Mum not only strengthened our relationship but also helped me gain clarity on what truly mattered.”

“Lessons I Learned as a Caregiver”

https://www.beingpatient.com/voice/lessons-i-learned-as-a-caregiver/

Sandra R. Kiser, an author and speaker dedicated to increasing awareness of Alzheimer’s, is an expert when it comes to caregiving advice. As a caregiver to both her mother and brother who lived with Alzheimer’s, Kiser’s advice came from her own lived experiences.

“Lesson one is learning to pack your patience,” she writes. Initially frustrated by her mother’s ability to make items in the house disappear, Kiser had to remind herself of her mother’s challenges with cognitive decline. “I would ask Momma if she had seen the missing item, and she would say no. It occurred to me that she didn’t even remember if she had moved it.”

In her essay, Kiser describes the journey she embarked on to arrive at the point where she feels able to dispense with caregiving advice, and how being able to rely on other people in her caregiving team was crucial.

Get in touch and share your story

VOICES is Being Patient’s series of essays written by people who are or have been a caregiver to a loved one living with Alzheimer’s disease or another form of dementia — a collection of caregiver stories that shed light on both the challenging realities and joyful moments of caregiving. Do you have a story to share about caring for someone who’s living with Alzheimer’s, dementia, cognitive decline or brain trauma? Reach out to lauren@beingpatient.com for details on how to contribute.