In 2017, my dad, who had dementia, was put on hospice and became bedbound. At the time, he and my mom lived in a senior community where certain things worked:

• They didn’t become invisible, which tends to happen to older folks in the U.S.
• Independent and assisted living options were available to cater to Dad’s changing needs.
• Meals were included for all residents.
• There were common areas besides the dining room where people gathered for activities.
• Mom had access to a room to host singalongs, which gave her purpose and helped to keep her mind sharp.
• Residents got free rides to the store and devotional services.
• Health and beauty practitioners regularly visited the community to offer services.
• There was a small eldercare agency onsite to provide help in a pinch.

But from where I stood, the things that worked were out-weighed by what didn’t:

• The energy of the place seemed to age my parents faster.
• Because residents were all older / in poor health, it was harder for neighbors to help neighbors.
• The meals were neither nutritious nor delicious, so my niece, sister or I cooked for my parents.
• Because their room and board were bundled, my parents paid for 1500+ meals they didn’t eat.

Though unrelated to the community, home care for my parents “worked” the worst:

There were high turnover and no-show rates with low-wage care aides, who typically prepped meals, did light cleaning and most importantly bathed my father and helped him to eat and drink.

Moreover, agencies had strict rules on what their aides could do, or do without an extra charge. Had family not been around, my parents would have had big gaps in their care or paid a lot for nothing special.

To stop Mom and Dad from being left in the lurch when their care aides didn’t show, and from paying too much for basic services, I became their full-time caregiver.

Soon after, we moved into a standard apartment building with mixed results:

• The place had a more lively energy and my parents’ spirits perked up.
• My parents saved over $1500 / month in housing costs.
• The apartment layout let us easily see (and say hi to) Dad in bed from the living room.
• My mom became the sole “old lady” in the building and lost socializing / singing with her peers.
• The building didn’t have regular programming to bring residents together.
• I had to chase down in-home services, like podiatry, that my father needed beyond hospice care.
• Without an eldercare agency onsite, I often enlisted my then 89-year-old mom for help.

After months of working out kinks with new home care agencies / aides and in-home service providers, it was looking like I could swing a part-time job. But two things stopped that: my dad was taken off hospice and he developed a small bedsore after going back on.

No hospice meant that my father’s Medicare-funded visits from care aides stopped, so I picked up the slack. And after my father’s hospice care resumed, he needed basic wound care that required a non-hospice nurse. But agencies in my area billed $75/hr for nursing services in 4-hour blocks, which would have rung up to around $300 for perhaps 15 minutes to clean a wound and apply a bandage.

Multiply $300 by 3 times a week (minimum), and soon wound care is costing thousands of dollars a month. And that says nothing about the near impossibility of coordinating the nurse’s and aide’s schedules so that the latter could hold my father steady while the former tended to his wound. Given all that, I stayed at home to be there when an aide arrived, and did wound care myself with regular input from a hospice nurse.

When I became my parents’ caregiver, I expected some difficult months until my father passed and getting a job after that. Things played out differently: My father lived for years beyond what doctors expected, and my exhaustion became so great that I fantasized about killing myself.

It seemed absurd to be on the brink of death by a thousand cuts in a building full of people, many of whom I imagined would have been happy to help me occasionally. But the only neighbors I knew well were kids and their mothers who had burdens of their own.

Cracking from the weight of 24/7 caregiving, I daydreamed often about Nairobi, where my parents had moved my family from Ann Arbor in the ’70s, and where Jomo Kenyatta, first president of Kenya, had roused me with his rallying cry: HARAMBEE!

HARAMBEE! (Ha-rahm-bay) “Let’s ALL band together” to build the nation! HARAMBEE!

After returning to the States with Harambee in my blood, I engaged in many community-building efforts, including in my former condo in Atlanta. I started with one step:

I hung a sign-up sheet in the mail room promising to share news and information about our neighborhood and building. I collected around 100 email addresses in a building of about 100 units. I sent messages, as promised, and was soon organizing well-attended events.

People were eager to connect with their neighbors.

Informed by my childhood and life as a community builder and caregiver, I dreamed up Vertical Village Alliance, then parent entity Village Company 360, to spread the spirit of HARAMBEE! in the U.S. so that we can ALL give and receive care to and from our neighbors.

More specifically, …

Though it took a turn that I never imagined, my choice to become a caregiver wasn’t fully selfless:

While I very much wanted to support my niece in caring for my father, it’s also true that I was between jobs and balking at looking for one without a clearer vision of soul work that I could do on the side or make into a job for myself. Caregiving was a way of dodging a job a bit longer.

(I also treated caregiving as a spiritual practice, never imagining that it would deliver my soul work.)

But whether I’d chosen it or not, the truth is that caregiving would have been my fate: my family couldn’t have afforded paying $95k+ per year for the level and duration of care that my father required.

My family isn’t unique in that way. The high costs of long-term care mean that family members—predominantly women and particularly women of color—provide it most, often at a cost of hundreds of thousands of dollars in lost wages and Social Security benefits. And harming their own health.

My mom got a laptop for her 91st birthday and uses Zoom. At 94, she wants to sing again with friends and master her smart watch. Besides no one helping the process, is there a reason why she couldn’t get techy pointers from neighbors and lead singalongs in her apartment building?

I don’t see one.

And there happens to be another thing that I don’t see: how to do all the work my soul is asking of me.

Deciding to grow a village doesn’t mean having all the answers—I certainly don’t.

It’s about PROGRESS OVER PERFECTION.

It’s about a willingness to learn and love thy neighbors—or just one—as best as you can, undeterred by any thoughts about messing up because messing up is normal when dealing with people. Sooo, …

If you’re looking for purpose / work to feed your soul, consider joining me as a villager.

Click here to see the different paths you can take.