Caregivers: What I've Learned After 28 Years

by Lorraine Cannistra writer, Lorraine Cannistra and her service dog, Leah
I have heard the words hundreds of times, but they never get easier to take.  When a good caregiver tells me that they have been accepted to nursing school or are otherwise moving on, my congratulations are always genuine, but they are coupled with a flutter of fear in my heart.  Will I find someone else just as good?  Being born with cerebral palsy means that I am a full-time wheelchair user, and there are many things in my day-to-day routine that I cannot accomplish on my own.

I started hiring caregivers when I was seventeen, right after I had moved several hundred miles away from home to attend college.  It was a daunting prospect back then, and in many ways it still is.  I had to start by asking myself some tough questions.

What did I need a caregiver to do for me?  That was not as easy to figure out as it might sound.  When I was living at home and struggled to put on my socks, I could always call on my parents or siblings for help.  Because they had always lived with me, I never had to explain to them how to help me transfer in and out of a car either.  When I was out on my own, I had to break down everything I did in my daily routine and figure out what I truly needed help with.  Once that was clear in my head, I had to be able to explain the process of how to help me effectively to other people.

As the years have gone by, the questions have become a little more challenging.  Does hiring caregivers diminish my independence?  I grappled with that one for a long time.  For years I believed that my being independent meant that I had to do everything I was physically capable of on my own no matter what.  For me, that was physically and emotionally exhausting.  Just because I could wash a sink full of dishes, was that the best use of my time?  Especially when the task took me an hour and a caregiver could do the same thing in ten minutes?  People in my support system helped me to understand that my independence had more to do with being able to do what I wanted when I wanted then my doing everything by myself.  As long as my dishes got done, I would rather pass that task to a caregiver and be able to spend the extra time reading a book or watching a movie.

The most challenging question came up a couple of years ago.  Was I ready to hire male caregivers?  Wow, that was tough.  I debated the pros and cons for weeks.  Guys are typically stronger than girls so they would have an easier time doing things like lifting my wheelchair in and out of a car or helping me with various stretches I do in order to reduce the spasms in my body.  On the other hand, I need caregivers to help me with intimate things like getting in and out of the shower.  Could I be that vulnerable with a guy?  Would the dynamic be different?  The answers are different for everyone.  I ultimately came to the conclusion that as long as there was mutual respect and firm boundaries in place, I was okay working with guys.  There are many questions that come up like that.  Can older people be my caregivers?  For me it depends on how safe we both feel with the possibility of my needing lifting assistance.  Do I hire college students?  As long as their primary desire in working for me is making my life easier, and not making their resume look better for a future in a helping profession.  Do I hire moms with young kids?  As long as they have a backup plan for when their child is ill and therefore cannot go to daycare.  I have been stuck too often with the impossible choice of a caregiver calling me fifteen minutes before their scheduled shift and saying, "I have a sick kid.  I can either bring them with me to work or I can't come in."  That doesn't make me happy.

Where do I look for caregivers?  When I am short-staffed, I tell lots of friends that I am looking.  I advertise on Craigslist.  Since I live in a college town, I contact professors that advise student groups on campus like the pre nursing club and pre physical therapy.  I call former caregivers and ask if they know of anyone who is looking for a job.  I call other churches in my community and ask them if they would advertise the position.  My church is a really safe place for me, so I have decided not to ask church members to be caregivers in order to avoid any possibility of potential conflict.

Once I have people interested in the position, I am most comfortable communicating by email.  I have created a document that gives much more detail about the position, as well as asks them questions about their schedule and how many hours a week they are looking for.  As long as we communicate by email, I can keep track of what questions I have answered and what they have asked of me.  I also feel more comfortable giving my email address to people I haven't met, rather than my phone number.

Once we have exchanged several emails and I feel like it might be a good fit, I ask to schedule an interview.  I learned a long time ago to offer several times that I am available, and ask them to pick which of those times works for them.   When I have done that, several people have told me that I had to work around their schedule for an interview.  That is a big red flag for me.  If they cannot accommodate my needs for an interview, they probably won't be a good caregiver. The biggest lesson I have learned about conducting an interview is that action-based questions give me a whole lot more relevant information than anything else.  Asking, "Why do you want this job?" got me really vague answers.  When I started asking questions such as,  "Can you tell me about the most difficult situation you dealt with in your last job,” the answers I got were much more specific and told me volumes about whether a candidate would be respectful of me and the things that I needed.

When I decide to hire a caregiver, I have them shadow my current caregiver for a day shift and an evening shift.  That helps me out in several ways.  First, a caregiver can give a somewhat different perspective about this job than I can.  Secondly, shadowing means that I am not asking a caregiver to start working without having some idea of what to do.  If people do not want to shadow, a training video can always be made, and a potential caregiver can watch it and ask questions about various tasks during the interview.  It is also really important to do a background check, to make sure that the person that you hire is who they present themselves to be.

After caregivers start, I have scheduling meetings with all of them once a week.  That way, if there are issues to talk about, we discuss them as a team after we work on the schedule.  I have found that scheduling meetings can be lots of fun as well.  When I make it potluck or a game night, everybody relaxes more and true bonding happens for us all.

One of the things that works well for me is to have a packet of caregiver policies that I give everyone when they start working.  Having clear guidelines about how much notice I need when caregivers ask for time off or to switch a shift minimizes confusion and drama for the whole team.  Having policies helped me in an unexpected way as well. 

I have struggled for many years with the "power" issue of needing help.  Even though I cannot drive myself from place to place and am pretty dependent on the people who work for me for basic needs, it is still necessary for me to call the shots.  That is a tough balance sometimes.  Having concrete expectations for caregivers shows them that I will be respectful, and I expect the same thing in return.

When I have a good team of caregivers, the quality of my life increases exponentially!  In my twenty-eight years of experience, the lessons I have learned have helped me to hone the process and find great people to give me care.  Hopefully they can help others as well.

If you would like to share how you go about hiring caregivers, please post on our facebook page. We would love to here from you!

Lorraine Cannistra enjoys writing her blog,, and she has had five stories published so far in Chicken Soup for the Soul books. She and Leah, her black Lab service dog live in Lawrence, KS.


  1. Excellent and very thoughtful article.

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