A Care Bear stare of a community

threatened to close in a time when we need these little models of humanity more than ever

As you know, if you read this newsletter, my sweet dad has fairly advanced dementia. We live with him now, and I’m sharing the care labor with my mom and my brother to make sure he is honored in this tender, roller coaster of a season. The biggest blessing of all is that we are all drawing from a deep well of mutual love to do this together—all four of the original Martins. My brother is a weirdo genius who knows exactly how to meet my dad and his brain where it is, a gentle giant who gives us frequent bear hugs, and tears up easily. My mom is also a weirdo genius, but of a different variety—skilled at researching anything and everything health related, great at finding funny videos on the internet that get my dad dancing (most recently, Mariah Carey’s “All I Want for Christmas”), and 56 years of marriage and many years of dating before that to lean on. And we’ve got a deep bench with our partners and children, all of whom find special ways to show my dad the love and care he deserves.

My dad shooting hoops with his son and grandson, a sweet moment of lucidity and connection.

The biggest blessing outside of our family has, without a doubt, been a day program called Alzheimer's Services of the East Bay (ASEB). As soon as we showed up there, we knew we were among unconditionally loving, multi-talented, and wise healers. They played my dad’s favorite Beatles song before chair yoga, set him on friend dates on the patio, and tolerate his wandering and agitation with a lot of patience and creativity. They don’t pity their clients; they delight and partner with them. It’s what community looks like.

We’d only been there for a couple of months when we leaned that it was closing down. Cue absolute heartbreak. It has been around for three decades—serving family after family with its special combination of clinical expertise, karaoke parties, and unconditional love. The reason? Basically structural bullshit. ASEB accepts anyone, regardless of ability to pay, which is part of what makes them great. But that means that they have lots of patients who pay via Medicaid; they get $76 per day from the state of California to care for these patients (a rate that hasn’t changed in 20 years) despite the fact that it costs them $250 a day to do what they do. The cost burden is too much, their ethical commitment too high, so here they are, shutting their doors down.

The good news is that they are planning to regroup and reopen in a less expensive location (maybe a faith-based setting in the East Bay, anyone know of one that might house a crew like this on weekdays?). To do that, they need to retain their liscensure, which isn’t cheap, so they’ve created this GoFundMe to make sure they can keep the dream alive. If you have the capacity, please give. Even a little bit of money will help this beautiful community pursue their dreams of sustainability and dignifying care, and it will mean a Santa’s sleigh worth of glittery generosity to me, personally.

I wanted you to hear about the place from the inside, so I asked Life Enrichment Director, Freddie Segura Glavey, if I could ask him some questions. Freddie is not only a warm, Care Bear stare of a human (he literally has heart-shaped glasses!), but a filmmaker and a dancer to boot. Meet Freddie…

Courtney Martin: How did you get into this kind of work and what does a Life Enrichment Director actually do?

Freddie Segura Glavey: I honestly kind of stumbled into this line of work. I was in a tough spot as a student at UC Berkeley, had wound up needing to pay rent on two separate leases and needed work. My friend who worked here brought me in as a Life Enrichment Aid and I fell in love with the people almost instantly. I was nervous of course but I spent so many hours outside of this doing research and learning as much as I could about this specific field of work. Now as a Life Enrichment Director, the role really focuses on making sure each day has something fresh and new. I am making sure the activity plan for the day is catered to the people scheduled to come in, supporting the Life Enrichment Aids and providing them any training necessary as well as supporting the volunteer team and making sure they feel comfortable on the floor.

I know you all do a lot of singing and dancing at ASEB. What are a few of the residents' favorite songs to karaoke to? What's yours?

The participants here absolutely love “You Are My Sunshine” and “Fly Me To The Moon” but what gets them up and dancing is always Elvis! As for mine, I honestly got a little choked up recently hearing them sing “Sing” by The Carpenters recently. That is usually the morning pre-exercise song and that whole room singing together is incredibly touching to witness.

What do you think the biggest public misconception is about people with dementia/Alz?

I think people fear not being able to understand an individual with this diagnosis. There’s a misconception about how a person looks and acts. And if you look at entertainment the constant medium that you see dementia mentioned in tends to be horror movies. Usually as a scapegoat with very little research into how to best represent it. There’s not a lot of knowledge of what it looks like when the environment is loving and continues to lift the individual up.

If you could wave a magic wand and change one thing about our care system, what would it be?

So many things come to mind but the biggest thing is accessibility. As someone who went without health insurance for a year because I didn’t know there was a 60-day period after graduating university where I could have enrolled, I do not understand why there are so many barriers to health. From vocabulary, expenses, knowledge etc the system that is supposed to be for the people, simply is not and it can become incredibly disheartening. And of course flexibility within that because everyone is coming from different circumstances.

You're also a filmmaker. Do you have a favorite film that touches on aging or care in radical or interesting ways?

You know I don't see too many films focused in care but the film I Didn’t See You There by Reid Davenport was a very powerful piece of work I've watched recently. It follows a man in a wheelchair with the camera giving you his point of view as he travels around Oakland and it puts the viewer in this seat of frustration seeing all the different ways that accessibility can be accounted for and considered and it simply is not.

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Again, please give to let this special community stay together and regroup. Here is the link. Thanks for being on this journey with me, and for understanding that the way we care for our elders is a reflection of our moral gravity as a society, a social justice issue, and one of the most urgent issues of our time.