There are so many things I wish people understood about ALS. The list goes on and on. I am trying to share facts on Facebook and Twitter each day this ALS Awareness Month to educate people. For the most part, I'm keeping those posts about ALS in general and not making them personal - I've saved this blog post for that.
For me personally, as a wife and caregiver, I think one of the biggest things I wish others could grasp is that despite my husband Dave's extremely positive attitude in dealing with ALS, the reality is that he is still getting worse. I have to watch it every day. Just because he has a smile on his face most of the time doesn't mean he's fine. Even if you ask how he is and he cheerfully says “good!” that does not mean he is good.
His spirits are high, but his body is failing him. If I'm nearby when somebody asks, I want to interject, “well no, he's NOT good, and I'm not fine...but at this moment, we're happy to see you and so we appear fine.” It's as though people think that because he is still talking and feeding himself (though both with difficulty), they can breathe a sigh of relief that he still looks like Dave. That he doesn't yet have a feeding tube and tracheotomy, no mask, no tubing. He's not using a power wheelchair yet.
But the key word there is YET. He's not at that stage YET. But he will be because this disease progresses. Until a viable treatment or cure is found, he will continue to get worse. That is ALS. It's always there. It's not going away. It is our life now.
It's all I think about, even when I'm not with him. I think about every aspect of it; what his needs are, if he'll fall and get seriously injured, if he'll choke in front of our kids, if it's time for him to take some pills, what piece of equipment I think we need next. When I AM with him I am so tuned in to his noises and actions it's like it's become another sense for me. I hear him sigh or take a deep breath after he walks from one room to the next, or stands up, or lays down on the bed. Everything takes effort now. His muscles are so tired from simple movements that he'll sometimes fall asleep in his recliner after only being awake a few hours. ALS doesn't take a break. Even in his sleep, it takes effort to roll over in bed. It is constantly beating on his body, and so each minute of each day he has to fight back.
And he does fight. He fights so incredibly hard that sometimes I'm just in disbelief that he doesn't break down, even for a day, and say he needs a break. He keeps on going without any complaints. From the time he was diagnosed over two years ago, Dave has chosen to focus on the things he can still do, to find joy in each day, to live his life. And he is absolutely amazing and the BEST role model for our children. He is setting such a huge example for them of what it looks like to fight, to be resilient, and to never give up.
He is doing his best to make sure their childhood memories are still happy ones and not about the suffering that ALS brought to our family. Our middle child, age 12, recently wrote an essay for school about the impact that ALS has had on her life, and it was all positive. When Dave and I read it, I turned to him and said, “You’ve done your job.”
I will continue the fight alongside my amazing husband. I will be by his side no matter what. But that doesn't mean it's easy. It doesn't mean I'm strong. It doesn't mean it doesn't hurt my heart to watch his decline. It doesn't mean I don't get mad and cry and lose my temper. What it means is that I love him and being his caregiver is what I am meant to do. Some days are easier than others, but even on the hard days, I invite people to ask me about ALS and how we are REALLY doing.