Dementia and A Call To Return To The Village

When my dad was at his worst, I was desperate for friends and family. I moved back to El Paso on two occasions to try to help him, but mostly provide respite for my mom who was his main caretaker for 13 years at that time. I was proud, too proud, a trait carried on from the women in my family, so asking for help or assistance was not in my operating system. My mom wasn’t asking for help either, we felt we could carry the burden forever.

Until we couldn’t. The second return back home showed me how badly my dad needed outside help. That is when I began to write, vigorously, in journals, on this site, on the socials. I realized my need for others was greater than my pride and suffering alone. The moment I reached out, my village found me. I was helped on all sides. If we had an issue with the VA, experts told me step by step what to do to solve my problem. If he ran away, I posted on FB and called out to my police officer cousin to send out the troops. When he became manic, my mom’s neighbor called me up and told me that it was time to give up care and find a safe place for him and my momma. The village ran to our rescue, time and time again and it brings me to tears in gratitude, knowing they saved us.

Dementia is an interesting monster. In someways, I feel the person with the disease intends to forget their demons. In the case of dementia or at least in my dad’s case, his illness was more for us. It was for me to learn how to let go of pride, to be vulnerable and allow others to render aid. For my momma, I know the lessons were vast, but she can tell her story when she’s ready.

What I also learned is that I need others. That it truly takes a village, for any and all circumstances. My friends, family, strangers in person and online allowed me to find peace in company and it provided a sense of community that I now work so hard to establish wherever I go. My dad was like that, he was the community builder of each and every connection. In Chicago, we would host parties and gatherings all the time. When we moved to El Paso, they were less frequent, but he still always loved a good time among people.

A month after he passed, the meeting I was hosting went on, though I couldn’t be there. I wrote a letter to the attendees, doctors, medical students, nurses, PAs, PTs, energy workers, healers all types who came together and ate, drank and shared stories. I heard it was great. Here is part of the letter that my co-host Melisa read:

“Community as medicine, that’s my passion these days, that’s why I told James Maskell I would start this meet-up in Austin. My dads sole purpose and proudest days were spent working as a medical social worker in Chicago coordinating care that included doctors, nurses, home health aides, dieticians, physical therapists and other modalities coming together for the benefit of the patient. This is what I hope to accomplish with our group, creating a cadre of like-minded professionals who connect, consult, share best practices, refer and build relationships for the benefit of our patients. Reach out to the stranger next to you, learn stories, exchange information and find out how you can help each other and your patients.”

I’ve always been fascinated with Redwood Trees. They are the tallest known species of tree in the world and can grow up to 350 feet, some historically even taller. Redwoods, born of resilience, have a strong line of defense against disease and fire. They stand strongly from a few hundred years up to 2,000 years. The most amazing part about them and perhaps the reason they resonate so loudly with me, is their roots. Their root system can extend outward up to 100 feet, creating connections with their brothers and sisters around the forest, making them stronger, more resilient and ready to take on the world sharing it’s magnificent and powerful glory along the way.

Let’s take a cue from nature on this one. And from the disease that will take over in less than a couple decades. I believe that my dad’s Alzheimer’s disease was a call to return to the village. If we had a community, if more than our two neighbors knew him, his disease, his inclinations and how to keep him safe, it would have saved us so much pain and heartache. I see it all around me, I see my friends, my patients, their suffering, they’re inability to understand this terrible disease and their need for community.

But above that, we need community, connection and compassion now more than ever. We need to get out of our comfort zone and turn off our pride and really get to know each other. Have peaceful and open conversations about the future, our fears and our vulnerabilities. Like I said in my letter to that man who sits in the president chair, “In fact the immigrants from all parts of the world that you speak of are actually the kindest, most compassionate, salt of the earth folks that I have had the pleasure of working with and treating. Actually, most patients, immigrants and American-born, have this disposition. They are all human beings and when you peel back their skin, they want the exact same that everyone else on this planet wants, love, validation and a chance to make a life for themselves and their family.”

I believe with my entire heart this can be done with acceptance, compassion, community and allowing our roots to reach out to those around us, carrying us through the flood, the fire and overwhelming fear into the love and the light.

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