Showing posts with label nurses. Show all posts
Showing posts with label nurses. Show all posts

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 what to say. (Trust me - I've comprised a lengthy list to have on display now - it will not be an issue!)

Even though it seemed like a small thing I just felt like they didn't understand my situation, but they were supposed to. Aren't they on the team of professionals who are helping me be a good, healthy caregiver? And they don't know? It was one of those moments where as a caregiver I felt so overwhelmed, alone, and like I really don't matter. I felt defenseless and wasn't sure what to do. Should I take up for myself? I'm not one for whining - I am one for just doing. I'll move on without them, even though I shouldn't have to.

We advocate for our loved one probably on a daily basis. But who advocates for the caregiver? No one. I see organizations just trying to save a buck - and I'm frugal so I understand that. But they are sitting there talking about where they can make cuts and save - I felt like it was at my expense.

Then I found Psalm 141:8 where David said My eyes are toward You, O God the Lord; In You I take refuge, do not leave me defenseless. I think I could say that God has the caregiver's back. He sees what we go through and He understands us. The trick is letting it all go and letting Him handle it for us. Caregivers are typically more likely to just roll up their sleeves and get busy and then get busier when the going gets tough. But we must take our refuge in Him. The programs designed to help - are not our help. God is our help and He has our back.

Today I will take deep breaths and relax knowing that God has my back.  And I'll make a conscious choice to rest in Him today. Will  you join me?

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 room. I stayed there day and night for 3 weeks before we moved to an isolation room on a regular floor where we remained for over 3 months.

A few days into our ICU stay I was in prayer and thought about all the wonderful nurses and doctors who were providing exceptional care for my son. But as I was thinking about what a great job they were doing I also realized that they couldn't help me. They could talk to me, calm me down, try to ease my fears...but they were not my help - only God could under gird me in the time of trouble.

One of my son's friends had loaned me a guitar for the hospital stay and I sat down and put some chords and a melody to Psalm 121. I knew I would have to look to God for my soul's help, for my peace and comfort and that He alone was my true help.  I knew I was in a position to look to Him and only Him. As the last 7 years of caregiving have unfolded, I continue to look to Him for strength, comfort and wisdom as the daily walk continues and I meditate on this psalm often.

I will look to the Lord
Where does my help come from? 
My help comes from the Lord
Who made heaven and earth
He will not allow your foot to slip
He who keeps you will not slumber
Behold, He who keeps Israel 
Will never slumber nor sleep 

It's such a comforting thing for me to know that God's not sleeping on the job! He is always watching over my soul and keeping me safely tucked in His own heart.

Today I will meditate on the fact that He does not rest; but He continuously keeps me and watches over my soul so that I do not faint. My thoughts will be on the truth that He is always on the job and He never even takes a break to rest. And I will rest knowing He is my peace and strength. Will you join me?

If you'd like to see the video I made of the song I wrote after I got in my son's room you can see it on my facebook page here: Psalm 121.

The Stare

  Do you ever just find yourself sitting and staring at the wall? It doesn't really happen too often because, quite frankly, who has tim...