Sunday, 25 May 2014

Still Standing

Although, neither of Mike’s home teams, the Vancouver Canucks or the Toronto Maple Leafs made it to the NHL playoffs this year, Mike is faithfully watching. The Montreal Canadiens (the only Canadian team to make it to the playoffs) are his favourite of course, but he was also cheering for the Columbus Blue Jackets because the Jacket’s young and talented Ryan Johansen from Port Moody, BC played on the same team as the young and talented Nathan Sands. They played Major Midget hockey together on the Vancouver Northeast Chiefs. Nathan still plays a little hockey recreationally. 

Mike was also cheering for the Colorado Avalanche of course. Even though one of our all time favourite players, Joe Sakic retired in 2009, I suppose we will always root for his team. The only other team Mike was cheering for and of the above is still in the playoffs along with the Canadiens, is the New York Rangers. We particularly like the Rangers this year because of the coach…the Canucks’ former coach, Alain Vigneault. 

Here we are already in the third round of the playoffs and its Montreal versus New York…they are three games in. The first two games were disappointing to say the least. New York won both games; 7-2 and 3-1. The third game was a bit of a nail biter, but Montreal scored early in overtime to win. 

I never sit through a whole game. I do other things and just watch bits and pieces. If I can hear the crowd going wild, including Mike, I come and watch the replay. Highlights during intermission or at the end of the game get me all caught up and I pretty much know exactly what happened. Anyway, what I could tell from what I saw of that third game, New York was all over Montreal, but Montreal, two games down and fighting for their lives, did not give up! You gotta love that kind of determination! 

It reminds me of Mike. I know I might sound like a broken record, but through every stage of this illness, he just doesn’t give up! Unable to sit up straight with trunk muscles and neck muscles so much weaker now, he is still determined to stand every day…even for just a few minutes. 

Sometimes it takes a while to get his feet right where he wants them. Once I get him up to a partial stand and prop him against his chair, I quickly get down and adjust his left foot (the weaker of the two). I put my shoulder against the outside of his left knee to stabilize his leg and then I adjust his foot with both my hands. With every little adjustment, I look up at his face to see if I’ve hit the sweet spot. He’ll give me the eye brows up signal (like thumbs up) to tell me “good”. From there I prop pillows under his arms and quickly get the suction machine and suction his mouth. When first in that semi-stand position, before he is able to stretch himself to full standing, his head falls forward and all the saliva pools in the front of his mouth and slowly seeps through his lips. I sometimes feel a drop or two fall on my head, but first things first. When his foot is in the right spot, he is able to slowly stand up out of a slouched position…I suction and all is well.

Sometimes he lasts a few minutes, other times he can stand for 10 or 15. He looks awkward and uncomfortable but he assures me he is fine. When Mike told me many months ago that when he can’t stand anymore, he will probably decline quickly because that’s what naturally happens when people stop standing, I became as determined as he is. If he hasn’t stood in a while, I’ll say, “Mike, do you want to stand?” He gives me a smile and a little nod and away we go. But I know my Mike, and I think when he is unable to stand, he’ll happily sit and keep fighting. He’s a fighter, like those Montreal Canadians and there is no giving up.

Montreal and New York play again later today. Mike will be watching and cheering for his team the Canadiens. He is hopeful…he did predict that whichever team got Thomas Vanek at the trade deadline would win the cup. Mike is usually right about these things, but we will soon find out. If they don’t make it to the next round, he’ll still watch and wish Alain Vigneault and his Rangers all the best!


“Never, never, never give up.” Winston Churchill


Here, Mike takes a look at the cloak. He likes to time himself to see if he can stand as long or longer than he did the day before.


Stand firm in your faith. Be courageous. Be strong! 1 Corinthians 16:13




Friday, 9 May 2014

Oh Crap!

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