Every career path leads to caregiving

Because caregiving is everything, and everything is caregiving

Why, when I promised that my Substack would be devoted to self actualization from here on out, why am I talking about caregiving? When either Will or I talk to people who are out of work or without a residence these days, they are either 1) people with tech degrees looking for jobs in the tech sector, or 2) waiting to get on disability. We both have compassion for people in both groups, and can relate to those experiences.

If you are waiting to get on disability benefits, you likely are unable to work at all. It is just an extraordinarily challenging time, and the best advice I can offer is to not wait to get an attorney specializing in disability law. Get one to help you apply; do not wait until you need to appeal. Time is of the essence. Additionally, keep a detailed symptom journal. Every day, write about what you are dealing with. If you are having a good day, say so, but don’t downplay the struggles you face on the bad days. Be graphic.

If you are having to go to the bathroom every ten minutes, include that. If you feel like your skin is on fire and wearing clothes you can leave the house in is unthinkable, note that. If harsh lighting, certain sounds or smells are going to trigger hypervigilance, talk about those connections. If filling out the paperwork for disability makes you feel suicidal (as it did with me, and since it is wanting you to say that there is nothing you can meaningfully contribute to society, it must be doing the same to other people too), note that. But also know that you have value as a human being even if you are not functional enough to work with any kind of regularity.

Self actualizing individuals reflect upon purpose, and how they can forge mutually beneficial relationships with others and the world around them. In life, some of the most menial tasks are the most essential. Also, there are perceptions regarding certain types of work that are deeply flawed, but I am here to tell you that each of us has the ability to shift these paradigms.

I have been thinking about how teaching was once considered a job that was beneath men. The same could be said of nursing. While there are jerks who still denigrate both jobs, there is far more respect for these professions than there had been in the past. The fact that perceptions have changed regarding these professions gives me hope that perceptions could change regarding other forms of caregiving. And that is something that needs to happen ASAP, because like it or not, we are living in a caregiving economy. It is work that cannot completely be automated. It is something that is becoming increasingly necessary as people are living longer and as many disabling conditions are no longer a death sentence. This isn’t to say that technology does not play a role; it most certainly does, and we desperately need tech workers to help people with assistive technology.

Some examples of this need are seen with setting up things like automatic pill dispensers, medical monitoring devices, and Personal Emergency Response Systems (PERS). These are wearable devices such as Life Alert pendants and bracelets, or call buttons, that can be affiliated with a landline or mobile phone. It is simple to acquire a service, but many times, individuals need help setting these up. Especially people in rural communities.

Same with other assistive technology, even when it is not something specifically marketed to elderly and disabled populations. I experience limited mobility at times related to multiple sclerosis. My partner, Will, is my caregiver. He is disabled due to blindness. He also has education and experience with all kinds of technology. He has set up and maintains smart home devices that have helped me retain a high level of independence. His job description is as a caregiver, but too many people have a very narrow view of what that means. He does not help me use the toilet, or help me clean myself. On rare occasions, I may need help dressing, mainly with applying braces or compression garments to help with spasticity or injury. Most of what he helps me with are household chores, tech support, and running errands (he picks up held items from the library for me, drops off/picks up packages, handles the mail, delivers documents, etc.). A lot of times, caregivers are personal assistants, chore providers, couriers, tech support, organization consultants, landscapers, chauffeurs, and companions.

Many elderly and disabled individuals need live-in caregivers, but that does not mean that the person living with them is constantly on the job. There was an elderly woman that my mom and I used to clean house for back when I was completing my undergraduate degree (late 1990s). She rented out her basement to male students attending school at the local community college. The students would pay $50 per month rent for the basement apartment, but would also agree to help out with yard work and snow removal. These kind of cohabitation plans can be a big part of addressing the need for affordable housing.

Often times, people may need help with one or two tasks, but are largely independent otherwise. Despite this, I have had someone refuse to work for me as a driver or as a chore provider because they did not want their title to be caregiver. That title does not dictate the work, but it is the title one has when they are paid through a long term care program. I made it clear to this person that they would only be helping me organize my stuff or driving me places. I have enough money in my IRIS budget to pay additional caregivers to do the things that Will is not able to help me with, but people don’t want that title of caregiver. If I were to pay them cash out of my pocket (which would be difficult for me given my economic circumstances), and they were doing the same job without the title, they would have no problem. I am here to scream frustratedly “JUST BECAUSE YOU ARE A CAREGIVER DOESN’ T MEAN YOU NEED TO WIPE MY ASS!” I have a bidet, and I want damn near everyone to stay far away from my posterior region.

If you are a person who is either experiencing joblessness or homelessness, and you consider yourself a caring person, consider becoming a caregiver. It would cost next to nothing to start a business where you are helping individuals set up and service their assistive technology. If you drive, companies like MTM and Veyo hire drivers to transport elderly and disabled individuals to medical appointments. If you are able to help someone complete paperwork and set up appointments, these are necessary caregiving tasks as well. Even though finding purpose in helping others can be an aspect of self actualization, by doing so, a person can meet their basic physiological and safety needs and forge new friendships. Consider my ask to consider caregiving as your metamotivation (relating to Maslow’s description of those who strive beyond meeting basic needs toward constant betterment).

There is no more important job than being a caregiver. Those of us who need help with day to day tasks still make meaningful contributions to society. I volunteer my time for local non-profits, managing a website, working on writing and editing projects, contributing design work when I am able. I help others research and network. I just can’t do these things every day, or even every month. I often describe accessibility as not simply doing things for another person, but giving that person the tools and assistance so that they can do the things they want and need to do.