Special to The Hawai‘i Herald
Editor’s note: This article is excerpted from a presentation that Jody Mishan delivered at the Hawaii Pacific Gerontological Society Conference in September 2008. Mishan revised it last month for publication in this edition of the Herald.
When my father was diagnosed with Alzheimer’s in 1999, I went to Florida and brought him back to Hawai‘i, where he lived with me until he passed in late November 2006. Of all the things I’ve accomplished in this life, caring for him was the most difficult, but also the most important thing I’ve done. And I was so proud of him, for
enduring the loss of his capacities one by one, with gratitude, humor, grace and love. He was a war hero, but even more heroic in his journey with Alzheimer’s. This is part of the legacy he left for me, teaching me values of courage, compassion, sacrifice, and a deeper love and commitment than I ever thought was possible, leading me to recreate my work and life.
During the early caregiving years, I was lucky enough to attend a poetry and journaling workshop given by the Alzheimer’s Association – Aloha Chapter and run by Frances Kakugawa, retired teacher and poet. Frances urged us to find “the divine” in caregiving. Out of our workshop came the book, “Mosaic Moon: Caregiving Through Poetry.” I’d like to share one of the later poems about my dad, written shortly before his death.
I would not have had the opportunity
To become a warrior
In advocating for a helpless person, rendered a nonentity
By a society of impotent and cruel Systems.
I had to fight
For his rights, for my rights.
It’s only when you are vulnerable and innocent
That the Systems brutalize you.
When I needed to pay caregiving bills, and could not work,
A government taxes without heart or logic.
No breaks, no compromise.
A medical system not giving equal care or attention
Once past 80 years old and demented.
A social system that doesn’t offer adequate services
Unless you’re poverty-stricken or wealthy . . .
Dad, from the day you lost your brain cells,
I have put on my war paint
And banged the drums of vigilance.
Fought the battles of compassion.
Sailed over the vast sea of patience,
A minefield of uncertainties.
As you entered the final stages of Alzheimer’s,
I was still Bruce Lee in the room of mirrors,
Expecting the enemy from every side,
Unable to relax my defensive posture.
Before all of this I was a warrior without skills or worthy battles.
You have given me this power and challenge. I am eternally grateful.
I took Dad to the ER one night when he seemed to have pneumonia and a high fever, the last time he ever went. The ER doctor never touched him in the almost 12 hours that we were there. No one touched him, except to take blood and temperature. Our CNA (certified nursing assistant) was with Dad when I was not, so we knew this. After all the tests, the doctor’s diagnosis was advanced Alzheimer’s and the breaking down of his body temperature regulation. They sent us home despite his high fever. But no one looked in his throat or felt his neck as they would have for any other younger patient without dementia. So I did what I always do — I wrote a letter to management and complained.
There are countless anecdotes from eight years worth of bad experiences and things that didn’t work. If I had not been present to protect him, he would have been sentenced to a lonely and impersonal fate, a fate that so many of our elders endure today without loved ones to advocate for them when they are helpless. First the illness of a loved one breaks your heart. Then it gets broken again and again when you discover the lack of quality and choice available in care support services. So I learned to advocate for change.
Caregiving is a battleground, demanding discipline, commitment, patience, compassion and selflessness — qualities that are hard for Baby Boomers in some respects. We perfected instant gratification, rebelled against boredom and bureaucracy, disdained authority and broke rules. Free love, sex and drugs brought freedom from stifling sacrifices that we saw our parents make and we vowed never to be trapped like that. We rallied against war and injustice. Years later, we find ourselves battling a system that’s flawed, anticipating an unprecedented Age Boom, in crisis mode, without enough personal savings or long-term care insurance. The quality of life for our aging parents, for us and for future generations is worth the fight. Baby Boomers have big mouths and will not accept less than the best.
Caregivers need tax breaks. We need more services and an easy way to find them. We need employers who understand. We need financial and legal counseling and assistance during and after the journey, something that is not yet in place unless one is rich.
There are visionaries and heroes in our Hawai‘i aging network, role models who are leaving a legacy. They work in education, health care, government, nonprofit organizations and business. They are our neighbors, volunteers, friends and family, making a difference every day. Whether it’s healthy aging, helping our frail elderly and disabled or supporting the dying through their final passage in life, significant progress has been made, driven by these individuals and groups.
A friend recently gave me his Plecostamus, a dragon-like catfish that eats the algae in fishponds and tanks. He said he was afraid it might die in his tank, eating only algae tablets. He heard that I had a koi (carp) pond in my house and brought it over. It’s only about 6 inches long, but these catfish can grow to 2 feet. Within a week, patches of clean floor started to appear on what was once a very dark bottom. Plecostamus was at work, cleaning and eating, little by little. Amazing what a small and determined specialist can do. The interesting thing is that it is nourishing itself as it does this and represents that hero in all of us, working for positive change.
It is amazing what we all can do with small bits of progress every day, small acts of kindness, not giving up, working in our kuleana and ahupua’a, in our homes, our jobs and families — small solutions that add up over time. We can clean up the systems, the long-term care pond. Big hearts and big mouths can win big victories.
Jody Mishan was coordinator of “Hawai‘i 2025: State Plan on Alzheimer’s Disease & Related Dementias (ADRD)” from 2012 through October 2015. Mishan said the ADRD coordinator position in the Executive Office on Aging — and other crucial aging requests — were not funded by the 2015 Legislature.
She is presently project director for a new three-year grant awarded to the University of Hawai‘i Center on Aging from the U.S. Department of Health & Human Services Administration for Community Living. Hawai‘i was one of 11 states to receive this “Alzheimer’s Disease Initiative: Specialized Supports and Services” grant.