Monday, May 7, 2012


Mornings seem to be the worst. No matter how I wake him up it's never "right". Then, he tries to "make the bed" and always gets mad when I re-do it properly behind him.
I love my husband, but I also love my bed and nice sheets. I love them to be proper and in place, and clean- no berry jam spilled onto them.

He does not always agree. Then again, Wash was not the one who worked for two years solid to save up to afford a nice proper adult 30 year warranty bed. I did. It's a bigger investment than any of the cars I've had. I've had insomnia since I was 11. This bed was the first I've slept on to make me like sleep and even WANT it.

Beside the point. Mornings are bad. He doesn't like to be woken up, he hates me watching him take his pills (but he won't do it otherwise), he hates being told to wash his face and brush his teeth. I take no joy in asking him to do it. He thinks I do.
It's hard to watch my husband, the grown man I married suddenly revert.
Things get so much harder for him.

Unlike toddlers who need help, but learn, he needs help but never is able to learn. He cannot remember new skills! That part of his brain is just gone. I get no joy from the help he needs. The only relief I do get is when he asks for help; when he's present enough to know he needs assitance, and asks for it. That's rare though, most of the time he is not cognizant enough to really understand he might be having issues.

Hospice folks say to try to let him do things on his own, when his safety is not at risk. BUT, even that has a downside, as most of the time I either have to correct and do it properly or safely behind him, or even just clean up. He gets so angry at me, because he cannot do things anymore. He's really angry at himself, or even the cancer, but because it is still just me here caring for him 98% of the time, it comes out directed at me.
The other issue is my own brain. I have Asperger's. It's difficult enough to try and cope with all this emotional shit poured on top of me, and the stresses, but I have no space. I have nothing that stays clean- he gets into EVERYTHING. I have made compromises on everything, my house is far more unkempt and unclean than I would EVER prefer, but I can either watch Wash or clean, rarely both. He comes behind me and messes things up again anyway.
I'm hoping he can stop trying to make the bed in the mornings. Or, at least, not be angry with me for going back and fixing it.
It's a hard balance between what can help him feel less frustrated and what I need Aspie and OCD wise to be functional.

The first hour or so that he is up seems the hardest. He's confused, angry, and needs structure outside because his own brain cannot structure things for him now.

It is hard.
Brain cancer is a nasty evil.


  1. Could it possibly be practically feasible - i.t.o. his mental state, and the resources you have access to, or may be able to access - to have someone there in the morning when he wakes up to scaffold the first couple of his waking hours for him?

  2. You may already be familiar with this term, Tashi; but as folks age, a process called "Morning (A.M.) Cerebral CLOUDING" often occurs in----(even healthy, normally-aging!!)----individuals on awakening. It's essentially feeling kind of "bumbly"; maybe a little bit "off"/"fuzzy"/"discombobulated"; and/or just generally "not with it" for a (widely-variable among individuals) period of time in the mornings............ until the person "kick-starts" his/her (normally-aging) circulation with his/her usual morning activities; or with specific exercise workouts............ until the person hydrates himself/herself with some fluids, (caffeine included)............ and/or until the person has something to eat (to bring blood sugar back up, after fasting throughout the night while sleeping).

    That's A.M. Cerebral Clouding in a NORMAL, essentially healthy person, say, starting at around age 30 (plus-or-minus); and progressing to/through old age, with the time for A.M. Cerebral Clouding............ (i.e., across an individual's lifespan)............ lasting from just a couple of minutes, or even less, when the person is younger, to an hour (or more) when the person is very, very elderly; and all the body's systems have greatly slowed down by that time, you know.

    Brain cancer; (and all of it's *vast* physiological changes/concessions therein)............ ADDED TO............ just a person's normal A.M. Cerebral Clouding, (i.e., that we all have, to widely-varying degrees), when we get up in the mornings............ would be, (and legitimately IS to Wash & you; and to the Hospice folks, too), then a real, R.E.A.L. Challenge, for sure.

  3. Tashi my heart is with you. my endurance is nothing to which you are facing but still ways away at me day by day. my heart goes out to you both. I feel the love love you pour out to you partner and you should know there is love for you in this most difficult of times and beyond. I was not supposed to be here, but can gratefully give my love to those that I have been saved.
    My love Tashi, you give us all strength when times feel so weak xxxx