What People Don’t See

After my previous post, I hesitate to continue with that theme, but it is what is on my mind right now. Along with the concerns for my boss’s health is my own transition to nursing school. I’m excited to go to school, but it means that he and his wife have limited options for finding my replacement in the next 2-3 weeks. Especially hard is knowing that his wife’s possibilities for my replacement are not returning her phone calls.

Work has continued to be wonderful and easy, but the things making it hard are what others don’t see.

“The Brain” is pretty much at the physical level where someone visiting wouldn’t notice any change in him had they seen him 3-6 months ago. He still can’t walk. He can’t move his arms and hands. He can’t feed himself nor take care of any hygiene needs that he has. He is still on a bi-pap throughout the day to assist his breathing as his lung capacity is significantly reduced. They might notice that his speech is slower and slightly slurred, otherwise, he’s understood.

But it’s what I see that concerns me: He’s not standing as well; when he does stand, it’s definitely a struggle for him to support any weight even with two of us assisting his support. When I first started, his lung capacity was around 25% as compared to the typical capacity of a man his height and weight. It is now down to 11%. We’re all waiting for the day he goes into single digits. His bites of food have to be cut smaller and we avoid food that is too crumbly or chewy. It is hard for him to open his mouth wide enough for bigger bites; food that is too crumbly runs the risk of being inhaled and causing him to choke. If too chewy, he fatigues.

No one knows how long he has left. It could be days, weeks, or months. When he was first diagnosed, the doctors told him 2-5 years, and he is now approaching the 4.5 year mark.

I guess what I’m trying to express through all of this is that there is always more to the story. More that you don’t, or can’t, see. And sometimes there are reasons that caregivers are on edge, even if nothing seems different from your previous visit.


1 Comment (+add yours?)

  1. Cathi Willms
    Jul 28, 2012 @ 08:58:07

    100% of the hospice nurses I’ve talked with or heard speak all say (and I quote) “I HATE that disease”. Your heart has been stamped indelibly but you’ve also had the blessing of bringing Christ into a situation and their lives in a way no one else has. Tell your boss and his wife that they’re very special people.



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