It is something I vowed that I would never do again. There have been too many bad experiences in the past. And besides, it takes away my power. Some of my humanity might even be at risk. I have hired and managed my own team of caregivers for more than 31 years, and I said I would never again use an agency to meet those needs.
For some people, agencies are a perfect solution to getting some needs met without having to rely on family members or friends. For those people, it works to have someone come in for a few hours per day, get done the tasks that need to be done, and then the professional caregiver goes on to the next client. I can see that.
My situation is a bit different. Because my disability prevents me from driving, I can rarely leave my house on my own. My caregivers are the only people I see in a day about 90% of the time. That is not a bad thing and I am in no way trying to elicit sympathy from anyone. Since that is the case, it is important to me to have a personal connection with my caregivers. I don’t mean that I want to be close friends with them. I mean that I want to make the decision as to who I hire. I want to be able to train whoever works for me to do things in my house the way I want them done. And I want a bit of flexibility in the schedule for both my caregivers and me in case unforeseen things come up for either of us; the times they arrive at or leave my house can be tweaked a bit. Working through an agency means I can’t do any of those things. And those are the kinds of things that add so much “goodness” into my life.
I have also said this a few times before. I am okay with the fact that I am a vulnerable adult, but it needs to be my choice as to who I am vulnerable in front of. That is the only way I can maintain my dignity and individuality.
Since I started managing my own caregivers, the biggest challenge is that the position is incredibly temporary. Students going into health professions tend to work for me in order to get some experience to put on their resume. Other people work for me because the schedule can be worked around classes and other jobs and such. Lots of people work for a semester or so and move on to other things. All of that means I am looking for new caregivers on a fairly regular basis. I know all the places to advertise that have gotten good results in the past. I have even learned how to look outside the box with my advertising. Nothing has been working lately.
In recent months, one of my caregivers got a full-time job elsewhere. Another got very sick and had to quit working for me suddenly. A third caregiver who worked for me last semester and was supposed to come back after the summer decided at the last minute not to return. I have had numerous interviews over the last few weeks, and everyone who I have offered the job to has turned me down.
The situation is somewhat desperate, and I start working with an agency again later this week.
The idea of having strangers in my house who I had no say in hiring is terrifying to me. I don’t want to be “just another” on a caseload. I can’t change a schedule without several days notice, and I won’t have any former caregivers around to help to train the new people in the manner I have done before. And because of the way Medicaid funding works, I will have significantly fewer hours with caregivers that come through an agency compared to the hours I was allotted when I hired caregivers independently. So many things about this situation are difficult.
Really good, well-meaning people have told me that everything is going to be okay, and I believe them.
Lots of people can make my bed and put my shoes on and sweep my floors for me. But in working through an agency I have to give up some of my freedom. And because I spend a significant amount of time advocating for people with disabilities to stay out of nursing homes, this feels like a huge step backward in my life. That is the hardest part.
Maybe this is a bit selfish, but I want the caregivers I have had in the past who take me to Sonic when there are only 15 minutes left in their shift because a chocolate shake sounds so good to both of us. Or the caregiver who stayed with me half the night after one of my surgeries because I was so sick and she didn’t feel comfortable leaving me alone. Or the caregiver who got a Christmas gift for my service dog because she didn’t want him to feel left out if she only gave one to me. Or the caregivers who pick up something at the grocery store that I mentioned I needed a few days ago, but neglected to put on the list. Or the caregiver who came in and told me we were going for a drive because he knew I had not gotten out of my house in two days. I have countless stories like that…
Those kinds of things are spectacular.
So I am making the decision that working through an agency to get caregivers is only a temporary situation for me. That is the only mindset that allows me to keep my sanity right now. I will continue to put ads up on Craigslist and Indeed.com and put fliers all over campus. I will continue to ask the professors that I know to announce the position in their classes. I will post information at the library and the community mercantile and continue to talk about it with members of the church that I attend.
And I will believe I will find several awesome caregivers that I can hire independently very soon.
Because I don’t want to settle for everything just being okay.
I want spectacular!