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 9th.
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!
