Lately when people ask me how Mike is doing, I respond, “He’s still smiling.” I think my response says a lot. It says he is still happy and he is still able to move some facial muscles. The thing is Mike is almost completely paralyzed. The paralysis has been gradual over the last three years but the changes in the last few months, although still subtle, have been the most impactful.
The subtle changes of late are the hardest for me emotionally and physically. Emotionally, because it’s the final stage of paralysis and physically because my caregiving has become more complicated. Mike’s dead weight makes it difficult for us to do the pivot transfers we have been doing for so long. I used to pull Mike up to standing and then brace him around his upper arms and move his feet with my feet inch by inch to get him from his chair to his wheel chair or commode to the bed etc. Now, I mostly use the lifts. His arms and legs haven’t worked for a long time, but his core muscles and neck muscles are failing as well causing him to lean a lot when sitting upright and his head to fall forward…or back. There is a lot of fidgeting and fussing, propping and pulling, shifting and shoving but he keeps smiling.
Mike has had a lot of phlegm lately. Around about the time he had his tube changed last month, we have been doing more suctioning…of phlegm and saliva (the saliva is normal). I go in to the back of his throat with the suction, using a flashlight to see my way. Poor guy — gagging as I wrestle with the glue like substance. Its pretty gross, but I love clearing his throat, knowing it’s got to feel good. I have referred to a few of the bigger clumps of stuff as “magic loogies” (a Seinfeld thing) and Mike keeps smiling.
Last week, Mike suffered with another type of congestion…if you know what I mean. Poor guy couldn’t go. Four days in and his smile had dwindled. Mike is regular…we make sure of it. We have a routine — that along with excellent nutrition, thankfully Mike’s pretty clear.
Mike always called a bowel movement a “TC”. TC stands for Thomas Crapper. Mike said that Thomas Crapper was the inventor of the toilet, so it only made sense to call a BM a “TC”. Mike had a lot of stories and you never knew which ones to believe. A little research tells me this story is partly true. Thomas Crapper didn’t invent the flush toilet but did develop it and had some important related inventions.
If someone in our house wasn’t feeling well, Mike would ask, “Have you had a TC?” If someone was’t quite right, he’d say, “Go have a TC!” The kids got a kick out of it when they were little and eventually it was just part of our lingo.
Having a good TC can be difficult once in a while for anyone but especially for someone who is sedentary, like Mike…it’s a real bummer! It’s been an issue for Mike just a couple of times, but not near as severe as last week. We tried everything — it was our whole focus for seven days. Everyone was concerned. My parents were calling, Elanna was asking and the kids were texting me, “Has he gone yet”? It was a long week, but on Sunday morning when Mike finally had the TC we were all praying for, the clouds opened up and I’m sure the Hallelujah Chorus could be heard for miles. Mike’s smile came right back…and he’s been smiling ever since!
Mike and Madison bonding in the bathroom