Heart, Hope, and Hurdles: A Caregiving Story

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Contact Information for Denise:

Email: denise@careyearsacademy.com

Phone: 773-343-6341

Links:•

Caregiving Reflections, a weekly newsletter: https://denisebrown.substack.com/archive

The Caregiving Years Training Academy: https://www.careyearsacademy.com

Main Theme: Embracing the Journey and Advocacy of Caregiving

1. The Beginning and Intensification of Caregiving

Denise’s journey began in 1990, but it really ramped up in 2004 when her father

was diagnosed with bladder cancer. Soon after, she took on the role of caring

for her mother with Parkinson’s until their recent passing. It’s a tale of

love, dedication, and resilience.

2. Coping with Sudden Loss

Denise opens up about the emotional impact of her brother’s sudden death in

2021. She candidly discusses the challenges his widow faced and the discomfort

surrounding questions about the cause of death. This part of her story is a

poignant reminder to honor lives rather than focusing on their end.

3. Emotional Turbulence and Family Dynamics

Navigating her father’s cancer treatment and her mother’s illness brought about

strain in family relationships. Denise shares her heartbreak, burnout, and the

frustration of feeling overlooked, especially during medical appointments.

4. The Realities of Caregiving

Denise recounts practical struggles like managing her father’s ostomy bag,

highlighting the gaps in healthcare guidance. She stresses the crucial role

caregivers play and how they often become experts in their loved ones’

conditions—what she calls having a “PhD in their care.”

5. Systemic Challenges and Advocacy

The narrative touches on the daily battles caregivers face, the lack of

resources, and the systemic issues that need addressing. There’s hope on the

horizon with new Medicare services for caregiver support coming in 2024, but

Denise underscores the slow progress and the need for broader solutions like a

universal basic income for caregivers.

6. Community and Support

Denise highlights the growing movement aimed at supporting caregivers, from

flexible work arrangements to community workshops. Effective communication of

needs and self-care remains at the heart of her message.

Closing Thoughts

Denise’s story is not just about caregiving; it’s about resilience, advocacy,

and the unwavering human spirit. Her journey is a powerful reminder of the

vital role caregivers play and the support they desperately need.