Day 71

Thursday July 31, 2013

I only have one "incident" I want to record for this day.  It sort of ties together with his general attitude, and I'm just at a loss how to handle it.

DH had been lying down.  DSS got here, and we were sitting in the living room talking.  DH woke up and heard us, so decided to come in the room and join us.  DSS spotted him in the bedroom doorway!!!  He had gotten off the bed and to the door.  There are things for him to hold on to, although the getting off the bed in itself was an accomplishment.
The thing is: I don't know whether to be mad (because I'm wearing myself out lifting him up and down and yet he does it by himself when he *wants* to) or scared (because he doesn't have any grasp of what he can or can't do and that was a huge fall risk) or sad (because he really doesn't remember that it was not a safe thing to do).
It ties together with his stubborn determination to not ask for help.  And I genuinely cannot tell how much of that is from the dementia, and how much is his underlying hard-headedness.
He so frequently sits there in the living room like he's just in a fog.  People come over and have conversations, and he rarely says anything unless asked a specific question.  I turn the TV on, but he just stares at it absently (and can't remember how to work the remote, so he usually doesn't try to change the channel).
Several times during the day he was pushing his hands on the arms of the wheelchair like he was going to get up.  When I'd ask, he'd say he decided to sit in the recliner.  And I'd tell him - again - that if he sits in the recliner he'll just have to stay in it, maybe all night, because I can NOT get him out of it by myself.  And he will look at me like I'm the evil queen.  So how much of his sitting there blankly is a form of pouting because he has decided I'm being mean?

I know, I'm not following my new format.  I'm just putting down what I remember.

The neighbor came over again.  She brought her oldest daughter, and their preacher.  The daughter was translater (much faster at it than the little girls).  It's very nice that they want to pray for him, for us.  
But now I'm wondering if there's something really really wrong with me.  I should be glad, I should be jumping right in with "Amen".  But all I feel is a pervading sadness.  She picked up on that and admonished me (and I told her I accept God's will, but I'm still only human and can't control the sadness).  The thing is, they seem to be completely convinced that they can demand a "miraculous cure".  And yes, I do know they happen.  I just don't think it will.  We've already had multiple miracles.  Do they really believe he will just live forever, that everyone will, if they just keep praying for miracles?  To me it just would be better to pray for peace and acceptance; and praise God  that DH is not in pain, and not actually unhappy most of the time.  He's allowed to do what he wants other than what I'm just not physically capable of helping with.  
So is there something wrong with me?  Is it horrible of me to want them to stop being so determined to pray his illness away?  I'd be glad to have him back the way he was 30 years ago.  That's not going to happen.  If his lungs suddenly miraculously stopping failing - his kidneys still would not work.  And worse, the dementia is caused by blood vessles "dying off" ... they can't come back, it's not reversable.  So he's not going to be "miraculously cured" ... and regardless, that will most likely continue to get worse.
Maybe my faith just isn't strong enough.  But I just can't help but resent people coming into my house - even though I know they mean well, and completely believe what they're doing - and trying to tell me how to feel.  I'm afraid  that as long as DH does not get better (and again, is my faith not strong enough?  I don't believe he will get better - it's not that I don't believe God can do anything; it's just that I don't believe that is His plan at this point), they'll just keep coming over more and more, and trying to pray harder.  Maybe they need to learn acceptance?

I don't know.  I do not want to allienate good neighbors.  And DH doesn't mind their coming over.  I'm OK with them coming (as long as they don't expect to disrupt too many days); but just pray for God's will to be done instead of demanding miracles.  And don't attack me (even gently) for my feelings.

I don't know if I'm the one with a bad attitude or if I'm just plain worn out.