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Caregiving Under The Microscope: Why Advocate? Why My Wife and I Do This.

  • Writer: Mark Fukae
    Mark Fukae
  • 2 days ago
  • 4 min read
Our new "Caregiving Under the Microscope" article delves into the deeply personal journey of caregiving advocacy. Discover why the fight for caregiver rights is so vital.
Our new "Caregiving Under the Microscope" article delves into the deeply personal journey of caregiving advocacy. Discover why the fight for caregiver rights is so vital.

By Mark Fukae, Director of Advocacy for Professionals Who Care and Founder, Caregiver Advocacy and Support Initiative (CASI)


It’s often said that one person can make a difference. Perhaps it feels like a cliché, a comforting thought whispered when facing overwhelming odds. But I’ve come to believe it with an unshakeable conviction. A single drop of water, insignificant on its own, can, over millennia, shape solid stone. Similarly, a single voice, a simple act of sharing, or the collective power of a community can forge profound change. My journey into advocacy, into believing in that single drop, began in the crucible of my own family's caregiving reality.


I have been an advocate for about a year now. But what truly pushed me into advocacy for caregivers? The catalyst came when my HR department stated, “you don’t have a leg to stand on LEGALLY” when they turned my work-from-home position to in-office full-time. There was, they insisted, nothing protecting me from attending work in person, despite my having had two accommodations in 2022 and 2023 due to caregiving for my mother. My mother’s end-stage dementia makes my presence imperative, as her physician had written a letter stating:


5/31/2024 To whom it may concern, Patient has end-stage dementia. She needs constant medical care and supervision. Patient lives with son, Mark Fukae, who is her caretaker. I would recommend if feasible to provide Mr. Fukae with the accommodation of working from home to be able to provide the medically necessary care and supervision for patient. Sincerely, Her Physician


And it is true. My mother constantly needs reassurance from me. She is deeply attached to me. While my brother and sister do their best to support in many different ways, they live far away. My mother lives with me and my wife, which means I am her primary, daily presence. Because she sees me daily for a few hours once I am back from work in the evening for meals and some television, she focuses on me. She knows I am available and present for her. My wife and all her caretakers do their best, but it always comes down to me. As frustrating as it is at times with her constant questions, her rearranging of things, her repeated need to know “the plan,” we understand that this is her only way to have some connection, stability, and the order she craves.


But with all that, the need to be present for her is now incredibly difficult, as I have returned to the office as per my employment policy. This pushed, and continues to push, me to address this injustice. Currently, there is no support for employee accommodation other than being physically disabled. But what about the stress and burnout and time restrictions of the caregiver? Aren’t we disabled by association with those under our care? Aren’t we functionally disabled by association? Yes, we are, but that doesn’t suffice in the legal or policy realm. And no HR department would want to touch that if someone brought it up. They would rather release you than make any accommodations. Morally, this doesn’t work, but since when do morals drive an economic engine?


Yet, despite these systemic failures, I persist. I am available, and I take the necessary actions to care for my mother. The daily routine, her laundry, her personal hygiene-my wife, our caregivers, and I provide it all for her. We pay our caregivers, but my wife and I do not get paid for our labor. This is especially true since we are her legal guardians for her health and welfare, and conservators of her money and social security, obligated to provide an annual report accounting for all that remains of my mother’s life.


But the main reason we do this is simple: we love my mother. Frustrating as it can be, it is the cross we bear to give her the best life possible under the circumstances that we can. She is a sweet woman, and her situation makes me reflect: who is going to take care of my wife and myself when the time comes? And it will come.


This personal journey, ignited by a corporate policy that failed to recognize my reality, has transformed into a profound belief: one person can indeed make a difference. Your single voice can be heard. You are not shouting out into the void. The universe does listen, and it responds to the ripples we create when we love and care for our wards.


Your Voice Matters. Take Action!


Your engagement is the absolute key to bridging this critical distance. Every share, every comment, every moment of engagement is a drop in the ocean, shaping the stone of policy and perception.

 
 
 
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