VOICES: In Our Essay Series, Dementia Caregivers Tell All

By | October 23rd, 2024

What does navigating a dementia diagnosis really look like? Caregivers reflect — and share hard-earned wisdom.

When a family member is diagnosed with dementia, the people that step into the caregiving role are often those closest to them. Caregivers must suddenly navigate this entirely new field of dementia caregiving while still keeping prior commitments such as working a full-time job, raising kids, and maintaining a household. In our most recent VOICES essays, caregivers unpack this delicate balance that sometimes feels more like a juggling act, and the true emotional impact of dementia on them. Find four powerful essays below.

“Compassion in Caregiving”

Compassion in Caregiving

One of the more challenging aspects of dementia is that it can look different in everyone who is diagnosed — no two cases are alike. When Kay Adams’s mother was beginning to show signs of dementia, family members at first disregarded Kay’s concerns about the severity of her mother’s condition and how she may soon require significant levels of care.

“It’s taken over four years for my family members to finally accept that she has dementia, because the symptoms that Mom displayed along the way differed widely from the stereotypes most people have of this disease,” Kay writes.

Adams, a clinical social worker and dementia coach for 25 years, says her prior experience with dementia was from the distant role she had working with families. Experiencing the impact of dementia on her own mother and being met with initial resistance from family members forced Adams to put her coaching methods to use and develop new ones on the fly. 

Adams reflects that she’s learned the importance of using empathy and patience when educating others about dementia.

Mindfulness and Creative Listening in Late-Stage Dementia Caregiving

“Dementia’s Daughter”

Dementia’s Daughter

Author Sasha Neal, an audio visual producer and writer based in London, found herself taking care of both her parents who were diagnosed with dementia, while also raising two young children.

When a loved one is diagnosed, many caregivers struggle to have honest conversations surrounding dementia symptoms, behavioral challenges, finances and end-of-life care. Even when caregivers summon the strength to do so, sometimes these conversations are met with resistance or even denial from their loved one. 

Reflecting on the early stages of her mom’s journey with dementia, Neal writes, “I wish I could tell myself: Have the courage to look at what’s happening; really look at those little memory lapses and moments of confusion; have the courage to look Mom in the eyes and say, ‘I think there’s something wrong. Can we talk about it?’”

Despite wishing she had approached communication with her mother differently, Neal says she ultimately wishes she could give herself some grace and tell her younger self that doing all that she could, with the knowledge she had, was enough.

Looking After Yourself While Caregiving: 3 Things You Need To Know

“On Alzheimer’s, Purpose, and Bucket Lists”

On Alzheimer’s, Purpose, and Bucket Lists

Early-onset Alzheimer’s disease, a form of dementia in which symptoms appear before the age of 65, impacts around 3.9 million people worldwide aged 30 to 64. Dr. Zahydie Burgos Ribot, a licensed psychologist, was initially crushed when her husband, Pako, was diagnosed at age 46.

After Pako’s diagnosis in 2022, the couple sat down to make a list of all the places they wanted to travel together. “We now had a bucket list,” Ribot writes. “The urgency was palpable, and the intentions were set. Our emotions were positive and we felt a renewed energy and sense of hope. When you live with Alzheimer’s, you have no time to lose: the time is now.”

The couple has traveled all around the world, including a month-long trip to Europe and most recently to Glacier Bay in Alaska. While traveling requires a slower pace and a more planned-out itinerary than it did before Pako’s diagnosis, Ribot says their trips remind them of the love they share and that despite dementia “there is still time to feel joy.”

“Self-Discovery in Caregiving”

Self-Discovery in Caregiving

When Corey Hubbard’s mother was diagnosed with Alzheimer’s, he didn’t realize that what would become a seven year caregiving journey would also lead to positive self discovery. In the face of a challenging situation, Hubbard learned new, healthy ways to cope with his feelings in the early stages, which he describes as a “mix of fear, frustration, and helplessness.” 

For Hubbard, meeting with a mental health professional, exercising regularly, spending time in nature, and getting support from friends and family offered monumental benefits. In the midst of caregiving, Hubbard taught himself computer coding and picked up new hobbies like reading. He leaned into the extra time spent with his mom and shifted his perspective to focus on the moments of connection.

Inspired by his caregiving journey, Hubbard founded Glassbury, an organization that offers Alzheimer’s literacy workshops online and in person.

Hubbard offers the following advice to other caregivers: “Embrace the journey, take care of yourself, and cherish the moments of connection. The lessons learned and the love shared will last a lifetime.”

Sharing & Caring: How To Share the Work of Family Caregiving

Have a story to share?

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. 

Through VOICES we aim to create a community where caregivers can be vulnerable in sharing the highs and lows of their caregiving experiences, while providing wisdom to other caregivers who might be navigating a new dementia diagnosis. If you are interested in sharing your dementia care story, please reach out to lauren@beingpatient.com for details on how to contribute.

If you find our articles and interviews helpful, please consider becoming a supporting member of our community. Frustrated by the lack of an editorially independent source of information on brain health and Alzheimer’s disease, we decided to create Being Patient. We are a team of dedicated journalists covering the latest research on Alzheimer’s, bringing you access to the experts and elevating the patient perspective on what it’s like to live with dementia.

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