February update

It's been a month since I've written here.  What used to feel helpful - writing in this blog - now feels sad and hard.  I'm not sure if this is good?  Keeping things inside, not sharing or not feeling tends to create chaos and mess in my life.  Not good for Ed or me.

Lately things have just been too much.  It's exhausting.  I thought having him in the nursing home would give us both a renewed view of being husband/wife and not caregiver/patient. Instead, it's just a whole different host of crazy, sad feelings.

Ed's been hallucinating again.  Non-stop.  Last week, he had one super clear, "old" Ed day.  He was engaged, happy, talked about the future, had a list of things he wanted to get done that day.  The day after, he was still pretty lucid but so tired.  That burst of energy wiped him out.  By day 3, he was out of it and seeing monkeys across the street.

Ed's body is chugging away, so physically, he's relatively ok.  His breathing is good.  He's gained weight, which is great.  His appetite is great.  So all that is good news.  It's his brain that's failing him.

He's hallucinating the craziest things.  This morning when I called, he was at the golf course. His nurse was in the room and said he was having a good round.  He's seen a bird on my head, monkeys across the street, a cake plate on the ceiling, he doesn't remember me, he forgets how to use the phone.

This happened in September and October when he was at home; this got him to the VA for a month, which led him to the nursing home.  At the VA, his brain cleared up.

3 months later, he's back to these full out hallucinations.  No one seems to know what it is. At the VA it was a urinary tract infection.  Or maybe it was all the medications he's on.  They treated both down by giving him antibiotics and weaning him off all narcotics.

Now, at the nursing home, they say he doesn't have a urinary infection but are giving antibiotics anyways. Nursing home doc is reluctant to take away narcotics.

His hallucinations are fairly gentle, sometimes funny.  Once in a while, he gets paranoid but it's usually easy to direct his thinking in a different direction.  The thing is, it's exhausting. His brain is on overdrive.  He talks non-stop.  He gets frustrated if I don't understand.  Like the bird on my head. He was so mad I couldn't figure out how to get it off my head.  Apparently, I kept grabbing at it wrong.

Ed knows something's up.  He believes his version of what's in his head but he knows something's off.  Probably by the look on my face.  I try to go with the flow and pretend I actually do have ironing boards in my lap.  I try to remember it's the illness that makes him forget I'm his wife.

I cannot imagine how folks who care for their loved ones with Alzheimers do it.  The physical loss of ALS has been awful but lots of people deal with loss of mobility. There is technology and equipment and ADA laws for wheelchairs.  Ed felt some freedom when he could control his wheelchair.

Being bed-bound is a whole different thing and we're dealing with that.  When he's lucid, he's talking a bit about quality of life issues.  That's a whole different subject.  This loss of awareness, of memories, of time, people, place and space is so heartbreaking.  At times, I think it's good he doesn't remember he can't move.  Other times - and probably selfishly so - I want him back.

My biggest concern or question is - is this how it is now?  Are the hallucinations just the new normal? I can't imagine it is, considering the past circumstances.  I have this need to get him "fixed."  To keep advocating for his lucidity.  But I'm not quite sure what I'm fighting for anymore.

So that's the update.