My dad has late-stages, early onset Alzheimers.  My family has been living with it for twelve years.  For a lot of that time, I lived 1900 miles away and I didn’t really see it, but now I’m living with it on a daily basis.

My dad is asleep (or not sleeping) in the next room and I’m out here on the couch at 4:30 in the morning hoping he’ll just stay in bed long enough for his medication to keep him asleep.  Once he stays asleep, the night improves, but tonight he hasn’t stayed asleep for very long at any time.  He’s tired.  My mom, sleeping next to him, is so tired that she’s slept through the last two times he got out of bed.  Although I’ve been adjusting to staying up at night, I’m starting to get tired myself.

Alzheimers is, to me, the worst disease you can imagine.  It doesn’t just kill a person, although it does that.  It doesn’t just leave them bedridden, although that’s coming soon.  Instead, it erases that person, little by little, until the memories and personality that made them unique is all gone.  That’s hard to watch as a loved one, but it’s harder still to watch my mother go through.  This is the man she has loved for more than 40 years and he can’t remember he loves her anymore.

A typical night, now is far different than it was a couple of months ago.  At 9:00 pm, my dad gets his first “bedtime” medication.  Then someone (usually not me, because I have no patience for it) gets my dad ready for bed and in bed.  Once he’s in bed, he gets what should be his final medication for the night.

Some nights he falls asleep quickly; some nights he doesn’t.  Tonight he didn’t.  He was up again in less than half an hour.  Then again.  And again.  He’s been up enough in the last 6 1/2 hours that I’ve lost count.

When he gets up, sometimes he just sits on the side of the bed and talks to himself (or to the “guys” only he can see).  Sometimes he gets up and gets into things.  My mom or I can usually catch him before he gets into anything, but once he’s out of bed, the fun is talking him into getting back into it.  I can’t do it without his help.  I can lift his feet and rotate him into the bed if he’s sitting and feeling pliable, but he is still far too heavy for me to do anything without his assistance.  If he truly doesn’t want to go, he just stiffens up and he’s as unmovable as a rock.  Should get get upset or agitated, he may poke, pinch, or grab.  I’m getting better at avoiding those, but they’ve happened.  Sometimes he’s not even upset when he does it.

He’s lost most of his language.  Words are a curious playground to him, with rules he no longer remembers.  It’s not like having a child, or even a very strong child.  It’s not even entirely like autism, although I think that might be closer.  Instead of each day bringing growth, even in small amounts, each day brings loss.

There are things that help, like having just one person talking to him, keeping him as calm as possible all day, or talking directly to his face, but those don’t always work.  His focus is scattered so widely that it’s hard to reel him in.

Once upon a time, this man was a very well-educated engineer and manager, active in sports and his church, and speaking a half dozen languages with varying levels of fluency.  Now he cannot work simple tools all the time, he has lost so much weight that we watch to make sure he doesn’t fall, and he barely retains English.

That’s the real loss of Alzheimers.  It takes so much, but the true loss is the person himself.