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Showing posts with the label nurses

Who's Got Your Back?

Have you ever felt like no one really understands? It seems like it hurts most when it's people who are supposed to be helping. For example, last week my son was up for re-certification in the Advantage program. I was sitting at the table with his case manager and the nurse who will be overseeing his case. They are cutting the hours an aide will come to help because they just don't see what needs to be done.  They are cutting the aide from 17 hours to something like 6 or 8 per week. On one hand I could care less because I've found working with an aide to be more of a hassle than it's worth - unless you get a good one. I was dumbfounded at the ignorance of the situation and I sat and just listened to them talk back and forth about the things the aide is and is not allowed to do. While there are some limitations there are plenty of tasks they can help me with, if they want to. Most of them just want a paycheck. I felt so unimportant and defenseless and very  unsure of w...

No Sleeping on the Job!

Sometimes the caregiver is left floundering on their own and sometimes there are organizations or individuals who help them out. There are programs to help pay for aides and supplies that are very beneficial for helping us stay sane. When I have an aide it means I get out a little more to run, or run errands and that is good. There are nurses who come periodically to check my son out and see that he is healthy and being taken care of. Family members often sit with my son so that I can do things I enjoy or escape for a weekend. I am very appreciative of this "village" that helps me out from time to time. However, I learned a long time back when this caregiving journey first began that my help comes from the Lord.  I had no idea of the the types of situations and decisions I would be facing on a daily basis back then, but I knew if I was going to survive I would have to look at Him for my help. I began to meditate on Psalm 121 while we were still living in the ICU waiting roo...