I know it is 90% cancer/tumor/medicine shit, and maybe 10% his old personality, but I hate it all the same.
I get so sad and frustrated trying to anticipate what will set off his ADD like symptoms; he literally can not multi-task. I as a person, as a wife, even as a caregiver always lose out. I get pushed back to second place or further and forgotten.
I lament and I mourn I had perhaps 4 maybe 6 weeks as a newlywed with my husband before the tumor took over. Now I've had two years longer than 98% of his type of brain cancer patients have had with their spouses; I think of that every day.
I don't feel respected, and I don't feel loved. Rationally, I am aware, it is his brain.
But I'm not an android. Even with Asperger's I feel. I hurt.
I wish there was some kind of "happy" we could both enjoy. There does not seem to be much of it lately.
If this is his last Christmas (I can always hope it is not, but the numbers are killjoys), I want it to be a good one, a happy one. I want him to have things to make him smile, to feel joy for. Something to encourage him to just keep living.
At the same time, for me, it hurts so much to know this might be his last Christmas, he can and will treat me however, and I have to just deal with it somehow.
I wonder if it's too much to ask for both of us to be happy.
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Harsh, but: Which is more important? His experience, or yours? *if* you cannot have it both ways, which would you choose? And then, acceptance is key. Within acceptance a patch or two or four of happiness can be carved out.
ReplyDeleteI read a post from a recent cancer diagnosee, she put into words the vacuum effect on the time-space continuum that life altering news will cause, the mental tinnitus that strikes. I thought about you when I read the piece, you stuck in this horror movie broken record place that just cannot end.
If I could give you anything, anything to be thought of, I would give you relief. In whatever form necessary. Some kind of sweet relief.
I'm sending peaceful, relieving vibes westward. I'm so very sorry it's all I can do.
#1) Tashi, this very *F.R.A.N.K.* link, (of December 9, 2011, directly Below), about being a really Burned-Out Caregiver............ made me think about your situation; (and also, in part, about mine, too, i.e., with my husband who has two Chronic Illnesses; and also about my *Personal Guilt And Never-Ending Stress* involved in helping to care for my elderly parents, who live 1,800 miles away from me, their oldest adult child).
ReplyDeleteIf you get an opportunity, the Readers' Comments (in the link, Below) also are particularly good, too, because they discuss some *Different Types Of Caregiving Situations* that people find themselves IN............ and, although every situation is, of course, different, there are a lot of basic commonalities, you know:
http://newoldage.blogs.nytimes.com/2011/12/09/broken-briefly/#more-10861
#2) By the way, Rachael's very wise comment (Above) about finding some way to reach "acceptance"............ (i.e., particularly in situations that you NEVER, even in-a-million-years, would've ever imagined YOURSELF to be in!!)............ really *is* key, too.
For instance, I myself never thought I'd be ~ B.E.G.G.I.N.G. ~ (certain of) my own Immediate Family members to simply *understand* that my husband DOES HAVE some Health Concessions BECAUSE OF his two............ (physician-diagnosed after we were married; and physiologically-predisposed-to, i.e., meaning *NOT* bad Lifestyle Choices!!)............ Chronic Illnesses; NOR did I ever think that just common, "Community-Standards of Nursing Care," (i.e., mutually agreed upon, by all physicians/nurses, Nationwide), WOULDN'T BE agreed on by (certain of) my own Immediate Family members, in the care of our elderly parents. (*S.i.g.h.*)
So, finding some degree of "acceptance"............ i.e., someway/somewhere/somehow............ when your Life almost seems to be NOTHING like you had hoped/planned/worked for, really *is* key, i.e., so that ~~ (and Rachael is again correct here) ~~ "a patch or two or four of happiness can be carved out" for YOURSELF............ even if that doesn't happen right away, but "eventually," you know.
My thoughts, prayers, and (((*hugs*))) go out-to you and Wash, Tashi............