Because I'm on a ventilator, I have nursing care 24/7. They work 12 hour shifts and most of them work three days a week (full-time). In order to cover every shift, I need about 5 or 6 nurses. However, by December 3, I will be down to 3. Usually it is the nurses decision to leave and move on to a new job. I am constantly worried that a nurse will leave because of whatever reason and we will be stuck without a nurse. It's a struggle to find caregivers who are a good match to work with. We end up interviewing a few before we find one that will work out. Whenever we don't have nursing coverage, my family has to step in and be the nurse. My mom and sister, Kristen, both know my cares.
I don't think many people realize what it is like for a quadriplegic and the daily routine that we go through. My nurses do most everything for me. I wake up every morning at 5 AM to start my cares. I start off with my bowel program. Then I do range of motion and wash my legs and my face. By the time I'm done with these cares, it is 6:30 AM. The nurses change shifts at 7 AM. After the nurses have given report, I then change my shirt and wash my upper body, put my pants on and then get up in my wheelchair. I usually get up sometime between 9 and 10 o'clock. I brush my hair and my teeth and am finally ready for the day. I get back into bed at 5 o'clock and do range of motion again. I am in bed for the night. I go to sleep at 10 PM and do it all over again the next morning. Wednesday and Saturday mornings I skip the bed bath and take a shower. Monday mornings I just wash my hair in bed.
Now comes my confusing and chaotic schedule. I have physical therapy Tuesday Friday at 8:15 AM and Wednesday Thursday at 4:15 PM. During two of my therapy sessions I go in the standing frame. On Monday I get a massage at 9 AM. I also go to school Monday, Wednesday and Friday. Monday and Friday I leave at 11:30 AM and get back around 3 PM. Wednesdays I leave at 10:30 AM after my shower, and get back around 3 PM, just in time for PT. Once a month I see a psychologist, and not to mention the numerous doctor appointments that I have. Don't ask me how I keep this schedule straight. The good thing is that I love staying busy. Could you imagine me taking two classes next semester?
Yes, I do have a lot to go through and many things to do during the day. I didn't share my daily schedule to confuse you or make you feel exhausted for me. I just wanted people to know what I and others go through each and every day. I want people to know that when times may be tough, not to give up. Just because your day may seem stressful or chaotic, others may be having an even harder day. I don't know how I do it, but I manage to stay positive and never give up. There are others who may not be as strong as me and are having difficulty living the life of a quad. Take this time now to think about those who may be struggling with their daily schedule, self-esteem, lack of independence etc.