Overlooked options for caregiving help
Expanding our definition of community so we don't have to go it alone
Many people in countries like the US, Australia, and Canada are surprised to discover that home health support isn’t covered by health insurance or any consistent government program. Instead, there’s a patchwork of programs, often designed for those who are both impoverished and without any living family.
This inevitably leads to families shouldering the burden of care on their own. Often, a single person becomes the primary caregiver, since in many ways it’s just easier to not have to coordinate and cajole. Perhaps a neighbor will occasionally shovel the walk or pick up a few things from the store. Maybe other family members will drive them to an appointment or tackle some paperwork. Still, the primary caregiver feels totally responsible for someone else’s life and well being.
Primary caregivers are encouraged to reach out and ask for help, but what help is even out there?
Tools like care mapping can help primary caregivers identify people who currently help, those who might be willing to help more, and areas where help is most needed.
What if your community is already tapped out?
A social worker, neighbor, or other caregiver can tell you what sorts of help are available in your area. You’ve probably already tried this. It can be worth asking again because things change and some people are more familiar with the options than others.
Maybe a local religious group will send friendly visitors to keep people company, help around the house, and run errands. Local community groups might provide rides to appointments, grocery delivery, yard work, home maintenance, and other tasks that can then be taken off your to-do list.
If you can convince the healthcare team to take your need for support seriously, they can connect you with home health and home nursing services.
This may be provided at no cost and it may be prohibitively expensive. It’s often only a few hours a week at most and you have no control over the scheduling or staffing. You get what you get.
There’s another type of community care that doesn’t rely on cash payment, even if it’s not exactly free: work exchanges.
Sites like HelpX, Workaway, and WorldPackers connect travelers with volunteer opportunities. Volunteers typically work part-time in exchange for room and board.
During university, my sister lived on the grounds of the school’s botanical gardens in exchange for a certain number of hours of work each month. Later, she traveled around Italy, staying on farms and helping with the harvest. There are a surprisng number of people doing similar things around the world.
Not everyone wants to shovel manure or weed in the hot sun. There are people who are happy to do other types of volunteering, like help around the house, take care of the yard, do the grocery shopping, and drive someone around.
So much of companion care is simply being a family member or friend, as long as there’s a match between the ability of people to provide care and the care someone needs.
Why would someone want to provide care to a stranger for free?
People may not want to live alone, or be able to afford it, and prefer a family setting to rowdy roommates.
Travelers want to be able to stay in a family home to experience the local culture and practice a foreign language. Rather than jumping around hostels, they prefer to stay with families and experience regular life in a place.
The legality of this varies a bit from country to country, since the definition of work varies.
In Canada, volunteering doesn’t count as work as long as the main purpose of a visit to Canada is tourism, they’re not participating in commercial activity, and they’re not taking an opportunity away from a local. Generally stays with a single host can only last up to four weeks.
People who can legally work in the country can stay in a work exchange as long as they’d like. Many people volunteering are on working holiday visas as a gap year before or after university.
There are also local initiatives to match those in need of affordable housing, like students and low-income people in gentrifying areas, with people who don’t feel comfortable living alone. Roommates pay reduced rent in exchange for a few hours of household help each week.
The media loves these stories. There’s a lovely photo essay in California Sunday, articles in Reasons to be Cheerful, the CBC, Fox News, and plenty of others.
Still, it’s newsworthy because the idea strikes most people as novel. There may not be a program to coordinate this in your area and, as I can attest, trying to organize this on your own can be tricky.
During lockdown many people lost access to whatever home health support they’d had. I found myself in a city where I didn’t know anyone and was in need of a place to stay indefinitely. I’d also arrived with only a backpack and buying things like bedding or even clothes was impossible because of store closures and shipping delays.
I was the perfect person to provide companion care in exchange for staying in someone’s spare room. Only I couldn’t manage to arrange a situation where I’d be an ersatz family member, not a full-time nanny or a 24/7 caregiver for someone with high medical needs.
Of course, community care options are best suited to certain types of care needs, typically at the level of companion care. Medical care that requires training isn’t easily handed off to someone you just met, especially when their main interest is to perfect their English. There’s only so much training that’s worthwhile if someone can only stay four weeks.
Even in situations where there’s a high need for care and complex medical care, the need for companion care remains. There’s still a home to take care of, meals to prepare, laundry to be done, errands to run. It can be a help to have someone there with them while you take a shower.
Having someone you don’t really know in your home can be exhausting. A burnt out caregiver doesn’t have the energy to host guests.
It can also be a lot of fun to have someone getting you to discuss topics besides caregiving. Who hasn’t already heard every story a hundred times. Who’s excited to be in the town you feel trapped in.
It’s also different than having a professional home health aide or a visiting nurse. So many home health aides feel just as forced into caregiving as family caregivers, while volunteers are actively choosing to be here. Visiting nurses are ultimately agents of the government who are required to report you for all sorts of things, as much as they can be an incredible source of help and didn’t go into nursing to narc on you. Even having neighbors in your home can feel complicated, like you’re inviting the rumor mill in.
Unlike nurses and aides, volunteers don’t always have the ability to set boundaries around what they’ve agreed to do. Situations can sour when needs grow and relationships can get complicated. Families aren’t always upfront about their accommodations and expectations. Volunteers might not be as patient or dedicated as they think they are.
If this sounds intriguing but still feels like a step too far, there’s another non-monetary, non-governmental option I’ve come across: time banks.
A time bank is a way to trade hours. Every hour is an hour, regardless of how much it’s worth in the capitalist market. An hour spent raking leaves is equal to an hour spent fixing a leaky faucet and an hour spent doing taxes.
Time banks recognize that everyone has something to offer, be it baking cookies, reading aloud to someone, or saying prayers.
Someone who needs a ride to the doctor’s office or help cleaning their gutters can offer up things they can do — and peruse people’s requests for help to see what’s a good fit.
Time banking can also be an excellent resource for long-distance caregivers.
If your area and the place your loved one is living both have time banks, they’re probably both members of Hour World. Hour World allows people in different cities to trade hours.
You can proofread someone’s resume or pick up someone’s kids from soccer practice and use those hours to get someone to cook your mom dinner or shovel her driveway on the other side of the country.
It can seem like the only option is to do it all ourselves. Or to spend every dollar we have on help until we’re broke…and then do it all ourselves.
In a world with few options — where all the options are complicated — it helps to know about all of them so you can decide what’s right for you.
So much of what caregivers have to do is a product not of disability but of inaccessibility. The existence of the injured, the ill, the disabled, the elderly predate the invention of the staircase, the car, and the toilet, but you wouldn’t get that impression from looking at our world.
There’s an excellent article in The Guardian by Jan Grue that asks us to consider what is and isn’t work and what an inclusive utopia would look like.
What constitutes a reasonable request is a moral issue. And so, for each of the hundreds of troublesome tasks that I encounter throughout the day, if I ask whether I’m being discriminated against, I must also ask whether I am being unreasonable. Whether I am, unreasonably, trying to evade the duties that follow naturally, inevitably, from having a body that cannot do the things that bodies should naturally be able to do.
But I don’t have the stamina to make these judgments for myself and for society. I don’t have the fortitude to ask what is reasonable or unreasonable, never mind to ask which entity is responsible and how to seek recourse. There is, quite simply, too much I have to do.
And then there is being the mother of a daughter who suddenly finds herself a caregiver for her husband who suffered a devastating hemorrhagic stroke more than three months ago. Even with a paid aide in the house, she is struggling with the drastic changes in her life; her inability to get through her daily "to do" list and, keep up with household chores and care for her husband. I am her main support, but living ninety minutes away and not being able to leave my husband for more than several weekends a month, there is so little I can do. Except be a shoulder, a sounding board, a bearer of advice gleaned from my caregiving background. And I can cry. I cry a lot. Thank you, Cori, for the information you have shared today. Perhaps there is something within your article that might help my daughter. Perhaps.