In the past week or two before my sister had flown here, he'd contracted aspiration pneumonia which was the excuse that landed him in the hospital overnight, just long enough for the neurologist to finally be able to do the necessary testing to diagnose his mobility issues. He has a problem with the medical/dental profession -- like thinking he knows more than they do. So, it took a lot of doing, and a mention that pneumonia could kill him, to make him submit to any form of diagnostic tests. It didn't take much, given his level of deterioration. A day later, my sister was sitting in the room with him when the word came down. Amyotrophic Lateral Sclerosis. Lou Gehrig's Disease. Advanced. Untreatable. Incurable. In short, terminal. They assigned him to hospice care and sent him home, pretty sure, I'm sure, that he'd die of the pneumonia before the ALS could get him for good. He didn't.
The life expectancy for ALS is somewhere around five years from first symptoms to succumbing. We're approaching the five-year mark within the next couple of months. Things are beginning to change in strange ways. That's why I had to hand it over to my sister. We'd agreed from the beginning that I'd do it for as long as I could, and then she'd bat clean-up.
Now, we're there.
I've moved. She's taken a leave of absence, and come from her home to stay until it's all over. He's recovered from the pneumonia, so is feeling just good enough to be difficult and ornery again. He's decided it's cigarettes that are his only hope, and all this newfangled breathing treatment just gets in the way of his smoking. I think he's pretty sure that we're trying to kill him when we do things that require that he postpone the next cigarette. In actuality, we've decided that if it makes him feel better, he should continue to smoke. He has Lou Gehrig's Disease, for crying out loud. Smoking is entirely beside the point right about now.
It's all frustrating, but not as much for me anymore, because he's not in my face. My sister has to deal with him now, and so she's the bad guy. She's always looked better in black than I have, so its suits her better. He doesn't push her buttons the way he did mine. Now, I come and go as I please, and then get to my little space and cuddle my cats. And its all good.
Or at least, as good as it can be. Maybe not good, good. Just good, comparatively.
So, if you're family, and you haven't heard from us, this is probably why. Talking about this has been difficult. Telling people is hard. I've had to call people I've been out of touch with for months or years and say, "Hey, how ya doin'? D'ja hear Dad's got Lou Gehrig's?" What are they supposed to say? I feel horrible for them, because in a way, the diagnosis has brought us a bit of relief. It's provided us the comfort of knowing our enemy. It's also provided us access to hospice care, which is the greatest invention in patient care in the history of modern medicine. These people are freakin' angels. After a year or more of being told by home caregivers, "No, we can't do that," or "I'm afraid workman's comp won't let us provide that," someone has come into the house and said, "Yes." "Whatever you want -- as much or as little." (insert god rays and heavenly choir of cherubim and seraphim here) How we survived this long without it, I'll never know. So, if you've gotten this news before and have gone into denial, let me take this opportunity to yank you out. It's happening, it's real, and if you have some peace to make with him, you'd better find as unobtrusive a way to do it and do it, because your time is finite. (And I think you know you are, Missy!)
If you're one of my loyal readers who gets to watch this from a distance, thanks for everything you guys have done to bolster me through these past months. Journaling in the blog about this has, at times, been my salvation, and your positive, kind comments have helped more than you know. My sincerest appreciation to all of you.