Sunday, January 29, 2017

There's no space for fear...

Sunday night.  Got home from the  nursing home about an hour ago.  The ride home is always rough. I get a good cry.

Ed's ok.  He's not really his "old" self.  At the VA, for a time, he was.  He was clear, lucid, smart. This was in November.  Even he said he felt better, more like himself, than he had in a long, long time. Now, at the end of January, he's just ok.  Weaker for sure.  But I'm trying to figure out him.  Usually I think he's here with me - pretty lucid.  Sometimes, though, I'm not 100% sure.  

It's little things like not remembering I was with him the night before.  Or if it's night or day. He'll wonder when we're going someplace but doesn't know where.  I try to be gentle with the fact we're probably not going anywhere anytime soon.  

We tried last week - when it was warmer.  We were going to see a movie but when I got to the nursing home, he was freaked out.  I can read him so well now.  He had those scared eyes.  I told him it was ok - we didn't have to go.  Maybe a movie was too big for the first outing.  Maybe we just needed to get him in the van and drive a block and come back. We didn't go to the movie.

Mostly, it's all good.  Like in this picture.  We sit next to each other.  I hold his hand - like I'm his anchor and I keep him from floating away.  

Around 6 pm most every night - when it gets dark - he has a panic attack.  I can tell.  We'll be watching the news and suddenly, he's agitated. Making noise, moving his toes. 

Within minutes, he'll be panicked, shouting to get off the blankets, turn down the heat, move his arms around.  

I try to anticipate it without making too big a deal of it.   Rub his legs, his hands.  Brush his hair.   In the end though, we always end up with an extra dose of anxiety medication.  Maybe we should just start with that.

Ed's vitals are good - his blood pressure is a little high.  His breathing is good.  His attitude is actually really positive.  Tonight, he got his catheter pulled out.  It was, at first, pretty painful and gory.  The nurse asked why we had it and honestly, I couldn't remember. Hospice shoved it in him back in September and that led to hallucinations and the trip to the VA.  I honestly think hospice did it out of convenience.  Once he got bedbound, it was too hard to use a urinal.  We never had the conversation, though, about why.  And we never revisited the why.

Tonight, the nurse decided to take it out; it seemed painful and tender.  At first, it was awful to see Ed worry about whether he was going to wet the bed, see him in pain as he peed, it was hard to hear him say he didn't want to pee because it scared him.  

A few hours later, he woke up and was smiling.  He said he felt soooooo good!  It didn't hurt to pee, he didn't feel like he was connected to tubes, he felt pretty free wheeling!  I had to laugh - it made my heart happy to know that's the old Ed... he's still in there.   

I want him to feel loved, secure, comfortable.  I think he does.  I hope he does. We both have a great support system of friends and family.  

Time is weird.  I feel it breathing down my neck, like I don't have much time left with Ed.  

Our time is so limited.  He could be here another year, maybe more.  How lucky I will be if he is.  

But time at the nursing home almost stands still. It's quiet, we're quiet.

I used to be able to share my fears, concerns, dreams with Ed.  But now, that's too much.  It overloads Ed's sensibilities.  Instead, it's all about the moment - being present with him, making sure he's happy, peaceful, content.  I keep my fears, concerns, dreams to myself.  I think I can deal with things later.  When there's more space for those things.  

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