Having Full-Time Caregivers

I’ve talked in the past about needing 24/7 nurses attending to my every need. They work 12 hour shifts from 7 AM to 7 PM and 7 PM to 7 AM. I also need PCAs to help aid the nurses with daily tasks. I was having trouble getting PCA help with my last agency, so I switched to a new one a few years ago. I used to just have them work from 7 AM to 11 AM. Since switching, I now have coverage from 7 AM to 12 PM and 6 PM to 10 PM.

As someone with a disability, I look for certain traits in my caregivers. Since they’re here often I tend to gravitate towards ones that fit my personality. Spending a full day or night with a person you don’t have anything in common with or isn’t particular to your likings is not always pleasant. Although if I have open shifts, I may need to settle for anyone who can fill the spot.

When starting with a new nurse, I first like to do a meet and greet with them to see if they are good match for me. If they are, they get 2 or 3 training shifts with one of my nurses on staff. Depending on how well they do, depends on how many days they need to train. After a meet and greet with a new PCA, they usually only do one training shift.

There are positives and negatives to having 24/7 nursing. On a positive note, I receive the care I need in order to thrive as an individual. Because I am paralyzed from the neck down and on a ventilator, they are my hands. They are there to help me do the things I cannot do by myself.

It can be difficult to maintain a "normal" day to day life when I'm constantly surrounded by other people. They always have to be within earshot in case something happens. Although throughout my house I have an intercom system, so they don’t have to be sitting right next to me. I also use a baby monitor in the other room so I can be as independent as possible. An interesting fact is that my dog, Brody comes to me when my vent alarm goes off. Sometimes he goes to get nurses if they aren’t around me.

Even though having people around all the time may be difficult, I do tend to form a relationship with them. Something that’s very hard on me is losing staff whether it be to a hospital, another client or pregnancy. I know that as nurses, they aren't supposed to be "friends" with their clients but it’s hard to work so close to someone and not form any sort of relationship. I’m sure others with caregivers can relate I situation. The reason I brought up losing nurses is because I recently lost two.

After someone leaves, the main goal for me is to get someone to replace them. Usually they give a two-week notice. Sometimes it takes a while to find someone and sometimes it happens very quickly; it all depends on the interview process and training. While it is difficult on me to lose staff, it's also hard on them to leave as well.

Jenni