Caregivers

I have had more caregivers than I can remember over the past six years. Some were from word of mouth. Others were from agencies. I preferred the caregivers who were from word of mouth in general. They were better, for the most part, and agencies cost more. 

There was a time when I had as many as five different caregivers a week, depending on the day of the week and the time of day. Now I’m down to two: Barry, my husband, and Ateka, the caregiver who has been with me for six years. It no longer makes sense to bring on anyone new, because my needs are so complex that Barry would have to spend so much time training them, that it’s not worth it. It’s exhausting for me too. The downside is that whenever Ateka is sick or out of town, Barry gets no respite from caring for me. And Barry can’t travel for more than a long weekend, since it’s hard for Ateka to cover 24 hours for more than a few days. 

I found Ateka on a website called CareLinx. It’s like a dating app for caregivers and care seekers. It is a great resource, and I have found several caregivers that way, but it takes a big cut of the caregiver’s pay. And it doesn’t give benefits, since the caregivers aren’t employees. I offered to pay for Ateka’s medical insurance, but it resulted in unanticipated problems on her end. Yet another way in which the United States fails its citizens. 

I have learned from Ateka that Ethiopia is the only country in Africa that was never colonized. I also have learned through observation that most of the caregivers in my area who work for agencies come from Kenya. Kenya was a British colony, so most people there speak, read, and write English. One must be literate in English in order to work for an agency. That is why Ateka can’t work for an agency and can’t get the associated benefits. I have learned a lot about the world and our society from my caregivers. 

In the way that they care for me, Barry is classical music, and Ateka is jazz. Barry deals with the enormous number of steps every time I transition from one activity to another by keeping a list in his head, and heaven forbid he gets interrupted. If I want to introduce something new or change something, I have to bring it up well before the transition time, and I have to explain the purpose of my request.

I often wish I didn’t have to explain it, that Barry would grant my request automatically. But that’s not the deal. We’re a team, and Barry’s brain doesn’t work that way anyway. If I forget and issue a request at bedtime, he reminds me that it’s in my interest that he does it this way, because it’s the only way he can “remember all 37 things.” 

Ateka has a loose routine, but she improvises. She riffs. I have to be patient and wait until she is completely done, before I indicate that she has forgotten something. More often than not, she hasn’t. Being patient is hard for me, and in those moments I appreciate Barry’s classical music method. I know immediately if he has forgotten something, because he follows the same pattern every time. He tries to play it off, as if he meant to do things out of order, but I know the truth. 

Luckily, neither one of them fears change in the routine. When I share a request or something bothersome with Ateka, she improvises on the spot. She feels it out and tries things, and more often than not comes up with something that will help. When I share a request or something bothersome with Barry, he takes it away and thinks about it. He composes and orchestrates, and comes back with something that more often than not will help.

Aside from their different care methods, Ateka and Barry have different strengths.  If I had my druthers, I would have two caregivers with the strengths of each of them. But since I can’t, I try to focus on the things I appreciate about Barry’s and Ateka’s individual ways of caring for me. And that they love me.