Random Thoughts in a Sleepless Night

It’s 3:00 AM and I’m awake.  I don’t know why; I want desperately to be asleep.  I seem to be developing chronic insomnia.  I don’t know if I’m falling victim to what I’ve accused DH of for years: not sleeping at night because of sleeping/napping too much during the day.    Hve I got it backwards?  Is the overwhelming daytime exhaustion because of not being able to sleep all night?  And why?   I was so tired and frustrated with DH waking in the middle of the night (anywhere from 1:00 to 4:00 on average).  But the new sleeping pill is working it seems.  He does occasionally wake up (rarely that I need to go in and get him settled back down).  But I’m still waking up and can’t get back to sleep.  I don’t dare taken anything to make me sleep; not even a glass of wine.  I need to be able to wake up if he does call me, or if the cycler alarms.  I guess I need to try to avoid, or at least limit, the daytime napping.  And the only way I’ll do that is by getting busy doing *something*.  And that’s hard to do when you’re so exhausted it hurts to move.

When I wake up in the wee hours and can’t get back to sleep, my mnd seems to go into overdrive.  This is an attempt to shut it down by going on and writing out thoughts (and by the way, starting the washer and getting a sandwich – to do something productive since I’m up, and hoping the peanutbutter and jelly will let me get back to sleep in a little while).

I keep being asked what am I going to do.  It seems people are afraid to be specific – do about what?  When the nurse asks, she seems to be asking what am I going to do when I can’t take care of DH, either because his condition deteriorates or because I’m no longer physicaly able.  I can’t answer her, because I don’t anticipate that happening.  Denial?  Perhaps; but I just can’t fathom any possible way for any other situation.   If he were to get to the point of literally not able to get out of bed, even to get on the commode; and his dementia progress to where he’s completely “out of it” or no longer recognizes family … I firmly believe (and *think* DSS does too, though it’s harder for him to accept) his wishes would be to just stop doing the dialysis, and let him slip away naturally and peacefully.  The only thing he’s ever stated was that he doesn’t want to be a “vegetable”.  (mostly he’s completely refused to have “that conversation” in any form whatsoever.  No, that’s not completely true.  He has stated that he thinks “elaborate” funerals are a waste of time and money)  But – funerals are for the living).

Meantime, I just don’t see any way of anything changing.  I’ve done the best I can to make arrangements to cope with my vision problems.  Many people know about the problems (I will need someone to stay here with Jimmy – someone physically capable of dealing with him if necessary; and someone to drive me somewhere to get the glasses fitted and ordered.  And then I’d have to do it all over again when they’re ready.  There are none of those “one-hour” places even remotely close to us).  So far – everyone is just way to busy.

I suspect some of the “what are you going to do” questions are vague references to after DH is gone.  I can’t answer those.  I can’t even imagine life without him.  I’ve been married to him half my life (and I know that’s not all that long compared to other marriages, but I can only think within my own experience).  Even the way his is now, without him here my life would have a big hole in it.  I guess I would wander around the house aimlessly for awhile.I know the time would come – quickly – that people go their own way and I’d be mostly ignored.  I think the “kids” (DS and DSS, and their respective spouses or SOs) would try to pressure me to move.  But not because they don’t want me out here alone, but because they don’t want to be bothered having to come way out here if I needed something (like going to the grocery store?)

When DH was last in the hospital, one doctor made a comment – I can’t remember it exactly – the gist was “he could last six months like that”.  That was almost immediately after her comment “we’re not doing anything medically for him, we’re just keeping him alive”.  I thought that was a bit of a crude statement, so her comments after didn’t fully register.  I am not sure if she was saying she thought he wouldn’t live more than six months past that time (which he already has); or if she was implying he *might* last six months if the dialysis was discontinued (which the PD nurse told me would most definitely NOT be the case – maybe up to 3 days).  All of the doctors on that last visit seemed to imply that we should stop the dialysis (or at the very least he should go back to hemo, which he is adamantly against.  Besides which that would create a whole new set of problems.  And his original PD nurse flatly stated she wasn’t sure he could survive hemo now.  I didn’t ask if she menat emotionally, or because of blood pressure issues, or what).

Hospice was mentioned, almost in passing – just to state that it wasn’t an option because he’s on dialysis.  That also seemed to imply they thought he wouldn’t last more than six months.

Ironically, it was the dialysis center who started the process of getting him into hospice.    It took 3 tries to get him accepted.  On his last visit to the pulmo clinic at Duke, the doctor said she thought hospice was a good direction for us, and she would do anything – sign anything – needed to get him admitted.  In the end, it was her signed admittance form that got him accepted. 

When we discussed it, she made sure to explain that the six months was only an estimated time frame, and could be renewed.  Ever since then I’ve wondered: did she really think he had six months or less?  Did she not want to just come out and say that to us?   (he was already a bit depressed because she has flatly stated he would NOT get any better).  Or was she really just reassuring us that it was just a way of getting him admitted into a program that would supposedly make things easier for us? As I said, he’s already more than six months out of the hospital.  And while his condition has clearly deteriorated, I honestly don’t think he’s all that near “the end”.  Apparently neither does his nurse.  (and I’m constantly afraid that he really isn’t “bad enough” and they’ll drop him from the program.  Not that I want him to be that bad; but it does terrify me to think of not having the nurse once a week, or the CAN 3 times a week; of having to pay for his oxygen, hospital bed, and wheelchair; of being completely on my own (and unable to drive) to take care of him.

He was admitted on July 9^th.  The initial six months takes him just past the end of December.  That’s about 2 and a half months from now.  No, I don’t think he’ll be gone in that time.  But I will say, I’ve long suspected that he’s more likely to succumb to a heart attack.  He’s had 2 – the last one while he was in the hospital (Feb. 2011) which we were told was a “big” one. A doctor told me many years ago that lung patients were more likely to die from heart failure as the heart was over worked trying to maintain a failing body.  That would be the easiest way for him – quickly and done; but finding hm just might drive me into dementia. With the rejection, the nurse will be able to tell when he’s near the end, and most likely I won’t be here alone.  Although by then maybe I’ll wish I was!

I’ve sat here and wrote for an hour, without managing to clarify my thoughts at all.  But perhaps I can sleep a few more hours now.