Who is going to get me up in the morning?  Do I have lunch covered?  Who has the dinner shift?  Is the bed shift covered tonight or will I have to sleep in my wheelchair?  Did everyone submit hours?  While these aren’t things people typically think about, questions such as these run through my head usually many times a day.  When you rely on others for help with almost all of your basic needs, you’re practically forced to constantly think about these things.

Recently, thanks to “Facebook Memories,” I was reminded that it has been two years since I started hiring my own caretakers through Self-Directed Personal Care (with IRIS).  What a learning experience it has been!  Before I switched to SDPC, I had been with many different home care agencies over the years.  As I explained in a previous entry, I started with home care in junior high or high school.  Back then, it was just for like an hour after school just to help me off the bus, get me inside the house, help me to the restroom, and feed me a snack.  It was when I moved to UW-Whitewater that I truly learned what home care was.  Although, I didn’t realize it at the time, the care agency that I had down there was by far the best agency I’ve had.  Sure, I had some issues with them, but they worked with me, and always made sure I was well cared for.  Granted, I realize a lot of it probably had to do with the people I became friends with, but the administration worked with clients to ensure  they were happy with services.  After college, while at my parents, I worked with two different care agencies which for various reasons didn’t work out.  When I moved to Oshkosh, I started with an agency that was connected to the apartments I moved into.  I was with them for over five years.  Unfortunately, due to a rule change, I had to switch agencies.  I was with another agency for eight months and I had a plethora of issues.  Tardiness, no shows, and the caliber of workers were just some of the problems I had.  It wasn’t safe for me to stay with the agency, so I switched to SDPC.

Hiring and scheduling my own staff is like a full-time job.   I post ads online on places such as Facebook and indeed.com.  Fortunately, my mom helps me with the initial process.  We may be changing how we do things in the near future, but, for now, when I get a name of a person, I forward the information to my mom.  She calls the person, tells them a little bit about me, and sort of does a phone interview.  If the person is interested, I then email the person the packet.  I tell them to print the paperwork off, fill it out, and to email me to setup a time to drop it off.

Unfortunately, it’s getting harder and harder to find people.  Most job websites now change to post jobs.  I’d maybe consider it if I thought It’d help get more applicants, but I honestly don’t think that’s the case.  One of my biggest problems is that I have short shifts.  My longest personal care shift is two hours.  Understandably, many people don’t want to work for an hour or two at a time.  On the other hand, though, what’s a person like myself supposed to do?  I don’t need, want, or quality for around the clock care.  I just need assistance during certain times of the day.  Of the hundreds of employee packets I send, I’d guess I hear back from less than 25% of the people. When I do get a person’s paperwork, it’s a gamble whether or not the person will still be interested in the job by the time the paperwork gets processed.

With the Fiscal Employer Agency (FEA) I have, the amount of paperwork people need to fill out is ridiculous, and it takes at least two to three weeks (longer most of the time) to get people approved.  By that time many have often found different jobs.  Yes, I’ve thought about switching to a different FEA, but there are different factors that go into that., First of all, the last time I checked, the FEA I have was the only one that had an electronic time sheet system.  For me, that’s a must.  I have to do everything electronically.  I haven’t looked into it recently, but I did hear that another FEA may have started an electronic system.  Secondly, there are only certain dates when they do transfers, and you have to get all of your workers to fill out and sign paperwork months prior to the date.  Frankly, that’s just not feasible in my situation.  I have staff turnover almost monthly and I can’t imagine having to work between two different FEAs during the transition trying to figure everything out.  In the future, I may reconsider because other FEAs are said to have faster turnaround times for new workers, but, for now, I plan to stay with the one I have.

I currently have about 13 workers (besides my parents), but only six or seven are really active.  I’ll just say you learn a lot about people when you’re the boss.  It’s amazing how much work ethic vary from person-to-person.  I’ve learned that with some people nothing gets done unless I’m right there watching.  I’ve also realized that some just don’t care about how they treat otters.  In addition to people giving me attitude when I ask them to do things, some people try to rush my cares so they can leave early.  I’ve had multiple people quit on very short notice.  Last year, a person who had been my main aide for several months, decided to quit showing up for shifts without any notice, and stopped responding to texts and calls!  On multiple occasions, people have called in on short notice, including in the middle of the night, or not shown up at all.  When that happens, I message everyone in my group right away to see if anyone can help me.  Unfortunately, not many people are willing to pick up shifts on short notice.  Depending on what shift it is, I often go without substantial food or using the restroom until the person for the next shift comes.  I’ve learned to always have some finger foods (like pretzels and fruit snacks) in baggies on my table where I can access them.  I’ve slept in my chair a few nights when nobody could help me to bed or get me up in the morning.  It’s unhealthy on multiple levels, but you do what you have to.  My parents always offer to come help, but, unless I’m stuck in bed in the morning, I usually say no because I don’t want to rely on them all the time.

Even with that many workers, I still constantly struggle to fill shifts.  Since early May, I’ve been at my parents every weekend but one because I can’t find people to fill shifts.  It’s incredibly frustrating because my parents just retired and want to travel, but, until I get more secure staff, they feel like they can’t go anywhere.  Often, they want me to just travel with them so they don’t have to worry about me being stranded without anyone, but that’s a catch 22 because then I’m not here for the staff I do have or to collect paperwork from new workers.  Plus, I sometimes have no desire to go where they want to go, and I feel like they should be able to travel without me.

The direct care shortage is nationwide, so I know I’m not alone in this battle.  Agencies, nursing homes, and hospitals are struggling to find caretakers too.  People say higher wages would help.  While I agree it’d help some, I don’t know that it’d be a “fix all” to this—especially in my situation.  I wish I knew what the answer was, but I don’t.  Until a solution is figured out, I guess we just have to continue to try our best working with what we have. 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.