Two Days with The Brain

The week I fainted for no good reason in nursing clinicals, I also spent a few days with The Brain. The help that he and his wife had hired to replace me in August had been hit and miss. Turns out, all of their private care givers had health issues of some sort that week. I knew Stewie* (see below) couldn’t do everything herself; I wanted to see them, I had no class those two days, and once The Brain is set up in his office – I’m not needed much. So, in my down time, I caught up on my readings for class.

The brain

Photo credit: Wikipedia

It was a good deal all around.

Of course, it didn’t help that I was informed while in town that I needed to get a release signed by my physician to return to clinicals. Running errands was NOT how I wanted to spend time.

As I reflect to that time, I think I experienced the type of grief that an out-of-town family member experiences. When I was there everyday, I saw the little things and knew how daily life was changing. We would all adjust accordingly and get on with life. Since I had a three-month gap from the last time I cared for him, well, I had a lot of fast adjusting to do.

His neck muscles are weaker, so the chair has to be tipped back a little more. He lost the ability to click his mouse buttons and now has an eye-gaze system, so the computer set up is different. He can no longer make the 30 ft trek from the kitchen to the bathroom without air support – thus the equipment now travels with him. He can still talk, swallow, and chew, but all of those functions are noticeable slower and cause him fatigue.

His abdomen is a story in and of itself.

The digestive organs still work because they are involuntary muscles. ALS only impacts voluntary muscles. However, the abdominal muscles (as in, your 6-pack er something) help support the organs; the structure and movement of the abs helps with the movement of food through the digestive tract. Because of their general weakness, the digestive organs have lost their support. Because of his BiPAP (air pressure), extra air gets into the tract, which expands the abdomen. You and I can move around to possibly get the gas out either end, take some laxatives or add bulk to our diets. Something to get more external movement that will increase the internal movement. He doesn’t have that option.

I was in Assessment at the time, so I percussed all four quadrants of his abdomen. Hyper-resonant. You want that in the lungs, you don’t want that over the liver or intestines.

There were no break-through conversations with The Brain. No amazing words of wisdom on either side.

It was a good chance for me to rest after my disastrous experience around people who knew a thing or two about stitches and staples. And I was thankful that I was available as Stewie’s been burned out since a shoulder procedure a year ago. Support groups, hair cuts, and massages only go so far to manage the stress of caring for someone with a long-term terminal illness.

I know school is my first priority, and I’m setting up a new chapter of life here in Indy. Yet, both of them are on my mind and in my prayers constantly. And even if it’s a whole sleeve of Oreo’s or finding a sweet deal on adaptive computer equipment or the ability to breathe without anxiety – I pray that God is showing them mercy.

*Stewie: sometimes it takes me a while to come up with code names for people. “Stewie” is how I will refer to “The Brain’s wife” from now on; it’s a lame reference to her favorite racing driver.


1 Comment (+add yours?)

  1. Stewie
    Jan 21, 2013 @ 12:10:32

    Love you Laura!



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