Well, it is time. I need to share a day in the life of this ALS patient. Not to complain, but to enlighten.
And whoa there’s some personal information!
Let’s choose a weekday, shall we?
Well, Reader-land, I generally wake up with the family as they get ready for school. But, honestly, I fall back asleep until Mel gets home again from dropping them off.
Then Mel gets me out of bed, because I can’t do it. Like physically, I can’t get out of bed.
Depending on the day, Mel gives me a shower, and if my legs don’t hurt that much, a shave. Then dries me off and gets me dressed.
Mel is my strong arm through all this because I am holding on to her arm as she walks me back and forth.
Then, Mel walks me into the elevator, and positions my right hand to hold on to the top part. My right arm is the only one with muscle response.
Then she runs downstairs and brings the elevator down with me in it, turns on the light and computer in my office, walks me out of the elevator and into my chair.
I feel like I am writing Mel’s day not mine!
Ok, it’s about nine. I log into work and Mel gives me my pills, and a tube feeding for breakfast, and if I am very blessed, a white mocha. Only half at a time, because I can’t lift a full cup anymore.
Then I settle into work. I love working because I can contribute, but work is hard when you’re by yourself and in pain, and I generally have a pain in my left hamstring from sleeping. I try to not take any breaks and focus on the job, but I do a poor job.
My dad usually comes in the morning to bring Holy Communion, which is a highlight of the day since it is hard to get to mass.
At lunch it’s another tube feeding and coffee, because I love coffee, and we have a great coffee maker! But, Mel does all that. If I’m feeling adventurous I may ask for a beer!
I email throughout the day, because I can’t text really anymore. The trick is if my phone is in the right place already.
Mel gets me up to use the restroom. Just think about this and everything else I’ve mentioned to get an idea of what Mel does to help me. Yes, that. Probably that too. Then she walks me back and sits me down in the chair.
Mel has to get the kids from school, and she gets me a drink or whatever I need before she leaves. I am still trying to work.
Mel gets home about an hour after, and if I am feeling okay I either roll out to join them in my office chair or Mel helps me get into the Lively. If I am not feeling good, I stay in my office and try to work. after hanging for a while, I roll back to the office to work.
I finally log out around six thirty. While I am in the office, Mel will offer dinner, which I can’t eat in front of people. So if I eat, it’s alone. The family eats over in the kitchen, and one of the things I need to get back to are family dinners. I’m the one not there!
The other thing to get back to is a family rosary.
About seven thirty we tell the kids to get ready for bed, Mel brings me my pills and drops, and brings down the elevator, gets me up, walks me in, puts my hand up to hold on, then sends it up.
At the top, she walks me out and into the boys’ room where she will lie me down on Luke’s bed, because the only thing I can do is get Luke to bed, and hang with him. I will never ever regret spending this time, even if it hurts. I’ll share a video example.
When Luke is finally asleep, I call Mel to get me up and walk me to the bathroom, help me go to the restroom, brush my teeth, even put in my retainers, depending on the day, and then walk me to bed and lay me down.
Whew. Like I said, it’s almost Mel’s day, not mine! And this is if I don’t go anywhere!!!! Add in more time and moving me around if I have to go out!
I tried not to highlight the pain or frustration that comes with ALS. That’s going to look bad on my sainthood application when I’m whining about leg pain and St Peter was crucified upside-down!!! So I will spare the complaints. It’s a very sedentary life, which requires a lot of help. Keep in mind too that we have four children, and it’s really hard for Mel. I’m a big fifth kid, and I am unable to help myself, means that Mel’s only real time to relax is at nine p,m. She gets up earlier than everyone and goes to bed later than everyone, because she takes care of everyone!
So remember when I talked about heroes and caretakers? This is why. She does it out of love, pure sacrificial love, the kind of love that defines marriage. And Mel is truly incredible and I love her so much!