In the article How I Find, Hire and Keep a Great Care Attendant, I walk through options for finding a good—hopefully great—personal care attendant or caregiver. The problem: these tips aren’t working in our present economy. I’m finding a lack of personal care attendants.

I’ve done everything I recommended in the above article. I’ve offered $20 per hour. I’ve contacted over 80 people on Care.com. Posted on Facebook and Nextdoor. I’ve received a few messages and phone calls and set up a time to meet, only for the person to back out.

On Friday, I spoke with a woman who was interested in working with me. After we talked on the phone, I emailed her an application, a list of responsibilities (for clarity), and a background check. I wrote: “I’ll see you on Sunday at 7.30. If you don’t think it’ll work out, please let me know.” I followed up with a text message on Saturday. “Hey! Just wanted to check if you still plan to come tomorrow morning.”

Then I texted my friend: “Shall we start taking bets?”

I should’ve wagered a bunch of money.

No call. No show. 

An emotional roller coaster

This cycle of finding a possible applicant—a lifeline—is an emotional roller coaster. One moment I’m elated at the expectation of finding a new caregiver. But the next day, my hopes are dashed, and I must continue the search, disheartened and cynical that I’ll ever find help.

After six months of this, I’m tired. Emotionally. Physically. Mentally.

I’m fortunate

But I’m so incredibly fortunate. I only need assistance three mornings a week. Well, that’s not quite true. I’m surviving. But to function at a full capacity for work, I need more help. I’d prefer to take a shower three times a week, and have help around the house on those days. Thankfully, I can transfer by myself.  I manage my bowel program on my own due to the surgery I had in 2018.

Other people’s lives are completely dependent on the assistance of people providing personal care. It’s a dire situation.

Agencies aren’t an option for me

I’ve been desperate enough to reach out to agencies. The average cost was more than $30 per hour with a 4-hour minimum. No, private health insurance doesn’t cover personal care. I don’t qualify for state or federal services because I work, and my state is one of 7 in the US without a Medicaid buy-in program. This expenses is out-of-pocket for me. (Read How Society Punishes People with Disabilities for Working for my tirade on that issue.)

So, I continue with one shower per week and a mid-week hair wash. I’m surviving.

What can we do in the meantime?

I don’t have any answers. If I did, I’d have employed a caregiver six months ago. What I can offer are a few tips to get by until you find a personal care attendant.  

Tips:

• Network. Talk with others with disabilities and see if they have a PCA who wants additional hours or knows of someone who does. The problem is, we all need help in the mornings, so this isn’t a great option.
• Keep at it. Repeatedly put the news out there on social media. Believe me, social media is NOT where I want to announce this. But my friends and family care for me and are willing to spread the word. They might have a friend who has a friend…
• Accept help. What’s kept me going? Humility in accepting help from people I don’t pay. I contacted a former PCA-turned-friend, and she’s coming on Sundays (after working a 40-hour week at her current job). A friend of a friend is coming Wednesday mornings to help me wash my hair in the kitchen sink.
• Shortcuts: The above example is another tip: find a shortcut that will get you through. I can live without a shower; I can’t handle dirty hair.) A person doesn’t need much talent to wash my hair in the sink, nor does it involve physically demanding work. But I had to accept the help of a stranger who was willing to volunteer. 
• Spread the love. I try not to ask the same person over and over. If I ask a neighbor for help one week with something around the house, then the following week I’ll ask a different person. I don’t want to burn bridges or make anyone feel they are “responsible” for me. I don’t want to be more of a burden than I already feel like I am.
• Find Facebook groups where you can post to job seekers. Nurses in the 502 (my area code) is a group for CNAs, LPNs, and nurses, and allows people to post job announcements. (In the search feature on Facebook, type in “Nurses in the [your area code]” for a local group.) I recently found a Facebook group for people searching for caregivers through a state Medicaid Waiver program. I messaged the administrator to see if I could post a job description, and she agreed.

If you have tips for finding a reliable caregiver or tips for surviving the times when you’re without one, contact me here. We can learn from each other’s experiences, and share our years of wisdom.