Forgetting familiar faces, phone numbers, your way home, how to bathe, dressing yourself, these are all sad realities of people who have progressive dementia. When my dad’s decline started happening, I was just starting college. He drove me to Austin from El Paso, an almost 600 mile trek and got lost on his return home. This was a man who taught me how to read maps and had the best sense of direction of any man I’ve ever known. The next stage consisted of a personality change from the kindest most happy-hearted man in my life to a reactive and at times mean father. Those two extreme changes prompted me to call his doctor and beg him to put him on medicine for Alzheimer’s disease (AD), “Erica, you know that this is a diagnosis of exclusion and if I diagnose your dad with this abysmal and irreversible disease the outcome is not good”. Yes, I knew this, even with just a BA in English/pre-med, I knew that Alzheimer’s was a progressive disease and my dad would never be the same. I held onto the hope that a drug would fix him and keep him as my daddy for just a little while longer.
Now, 15 years later, he’s in a home, at peace, happy and my momma is able to live her life again. From the extensive conversations we had before we placed him in a home came this idea, that it takes a village. I believe it takes a village to get through everything challenging in life. We’re meant to have a tribe, a community, people who will not only catch us if we fall, but will always offer a hand to pick us up again and again.
Late last year, the conversation that struck the strongest cord was one my sister brought to our attention. The fact that neurodegenerative diseases, those that rob a person and their loved ones of the mind, but keep the body intact, lack a village, lack a community. For fifteen years, my mother took care of my dad, entirely by herself, with the occasional drop-in visits from my sister and I, some lasting months, but most lasting days. We talked about how if dad had been diagnosed with cancer, that the world he built, the tribe he had once had, would be at his aid. Those people from around the world who he went to college with, Vietnam, the Peace Corps, St. Josephs, Seton, housing authority, foster grandparents, all the lives he touched and saved, would have been calling, visiting, making food for my mom, helping take care of him while she took a breath, and showering him and her with love and support. I know this to be true because the second I I took a sabbatical to go back to El Paso to figure out his next step and I reached out to my friends via social media and the universe, we received that very support that had been lacking all of those years. The shift in asking also happened after my dad was diagnosed with leukemia last summer. Once he received a diagnosis outside of his Alzheimer’s, we started seeing more of a community form and also when we felt more inclined to ask for help from others.
When I talk about community as medicine, this is what I’m talking about. I wrote about this in 2011 and how if you know someone with Alzheimer’s to visit often and be cool. But that only happens if you ask. The power of asking for help becomes difficult when your caring for someone with Alzheimer’s, there is a pride issue there, I get it, I felt it. Once my dad had cancer, my mother wasn’t expected to do it alone. Yet, around the world, as more and more people are being diagnosed with this terrible disease, they’re lost and alone and without a village. That’s why a friend of ours wants to move her husband, who has Alzheimer’s, back to Colombia, so she could have that community to assist her. That’s why I believe caretakers, who know more about the disease than most medical providers do, need a place to breathe, exchange ideas, vent, talk about the latest research and ideas in the care.
I’ve been so fired up the past few weeks when I heard about an actual Dementia Town in Holland. This has been my inspiration for my dream to build a dementia village in or around the Austin area. I’ve been looking at land, emailing the founder in Holland, researching the specifics as much as I can figure out and putting it out there as a must do in this lifetime. Of course it will be called Benny’s House and will house a restaurant, a coffee/tea shop, grocery store, library, garden, a laundry mat, maybe some office space (for those workaholics), and a holistic clinic. It will take a village to build, but I know it’s one that will be full of life, love and community, just like I believe my parents and anyone with AD and their caretakers have deserved for a long time.
If you haven’t heard of The Roseto Effect, read about it here. The study showed how important social networks and communities are for our health and well-being. We’re in this together folks and none of us is getting out alive, so why not reach out to a stranger, why not talk to the homeless man on the way to the next SXSW venue? Believe in community, believe in the goodness of others and practice it as much as possible.
Thank you for reading.
(Photo from the community who helped me during a 500-mile pilgrimage)