TIRED

It's been almost 9 months of living with ALS now and I think I can speak for everyone when I say we are tired. Both mentally and physically. People always ask me how my mom is doing.. and it's hard to come up with an answer. There's no chance of her improving.. and every day is a challenge. Some days more so than others. But none of it is easy.

Instead I just say "good" because that's what people want to hear? Few people ACTUALLY want to know what's going on. People don't like to talk about the hard stuff. And quite frankly I probably don't want to tell them about it either.

I spend all day thinking about ALS.. things I need to get done.. people I need to call.. equipment I need to order. It's exhausting.

Recently my mom has stopped being able to get out of bed on her own. So bathroom breaks are harder. We have to be more aware if she needs something. And a very unpleasant thing has been happening lately.. accidents. With my mom's legs getting weaker, it takes her longer to get to the bathroom. And I'm not sure if she is also dealing with incontinence. Last week alone she had 3 accidents while getting from her bed to the bathroom across the hall.

That's when we had to switch it up and get her depends. For those of you lucky enough to not know what those are - they are adult diapers. We are hoping to hold off getting a catheter for a while longer.

I can't remember what percentage of caretakers are said to go through depression but it was insanely high. It's not an easy thing to go through. It's hard to be a part of normal society when your whole world revolves around this disease. And of course I wouldn't have it any other way. I love my mom. She's my best friend. And she is handling everything with such patience and grace.

But if one day I had face this beastly disease myself, I would not chose to.