Waiting is the Hardest


This past weekend was pretty good. Except for half of my (white) shirt being covered in (red) wine and spending a few days soaking it in Biz, life was peachy.

I visited a few people in Bloomington this past Sunday. I was privy to a perogi dinner (YUM!) and visited The Brain and company before the feast. Even without nursing school to teach me symptoms and beginning pharmacology, I was able to notice the differences in the first five words. His wheel chair is propped back just a little farther, probably to keep his head from tipping forward all the time. His speech is slower, more labored and more breaths are required to finish a sentence. I also noticed a few tears come to the corner of his eyes a couple of times: emotional liability. Those with ALS sometimes lose their ability to control emotions; it’s embarrassing for some more than others.

But in the midst of the signs of further decline that I was noticing, I got to appreciate the time with a friend. There were other guests around, which added to the fun and enjoyable afternoon. The Brain is still able to talk and chew, thus I was relieved to eat some cheese and crackers alongside him. I had to be vigilant that he not talk and chew and the same time, otherwise, things were okay.

He asked about school and work. I tried to think of all the stories he would want to know, along with a few self-deprecating remarks on my first few months. But he celebrated with me that clinicals start soon and that, so far, classes are going well. I made sure to tell him about my professor who is a former Catholic nun. I have a feeling she’ll be the source of many stories in the semesters to come.

My last experience with hospice was about 6 years ago when an aunt was in the final stages of Scleroderma. After the options had been weighed, she was admitted to an in-patient hospice facility. It was the hours of keeping vigil with my family that I found the hardest. The only way her body’s functioning would go was down. The nurses were fabulous and took excellent care of my aunt in addition to her husband and adult sons. But there was still the wait.

The more I experience life with The Brain and encounter others in pain, the more I see the wait as a gift. There is time to grieve with the person; to let him/her know they will be missed. It does not take away the sickening feeling that someone you love and cherish is suffering. But their suffering, in whatever form, is a way that those of us caring for them or their family can learn compassion. We can learn when a hug is needed or when to leave a cup of tea and box of tissues at their side. Albeit, the waiting is a tough gift to receive, but it is a gift.

The visit did me some good to set my mind at ease. The past few weeks, my dreams have been more vivid and some of my day time thoughts drift to The Brain. I am thankful for the reminder that (some) dreams are a reaction to stress and anxiety. Before I left for school, his lung capacity was 5%. Five. Total. How would you feel if your gas tank was always 5% above empty?

But in the midst of this painful wait, of which I now have to watch from a distance, I’ve been given an opportunity to wait and pray and love as I am able. It is far from a “glam Mother Teresa” that so many try to make of nursing and hospice. You do not help others because that act makes you look good. You help others because you see the world and its brokenness, and you know that your calling is to help in this way.

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