Monday, August 20, 2012

Parental Advisory

Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.

I did warn you....
His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.
His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.
He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.
He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.
He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.

I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.
But, he kind of is.
So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.

I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.

He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.
He does not kiss me anymore.
I rarely get hugs. Maybe a couple times a week now.
We are growing more distant as his memories start to fade.

I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.
It's harder to sleep in the same bed.
We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.
I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?

I cried a lot last night, when I was alone downstairs with the kitties.
It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.
It's hard to see him in pain.
It's hard to deal with my own pain, all encompassing.

I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.

I should try to nap today while I have an aide here for a couple hours.
Lately though, my sleep is plagued by bad dreams.

I got 3 hours of sleep last night. Fucking brain cancer.


  1. I have been following along (found your blog through Regretsy. I wish there was something I could do or say to make things better for you. I've seen first hand the ravages of cancer and it truly does SUCK. I wish I could come through blogland and gives you and wash hugs.

  2. I'm so sorry he's in pain. When Mom was winding down, she slept for days on end. The she'd wake up, give us a smile, and then nod off again. It was hard on us, but didn't seem too bad for her. I was hoping it would be like that for Wash. Here's hoping your CNA coverage will be expanded.

  3. I know that there is little any of us can do for you other than let you know that you are cared for by your readers. I hope you can find the love and support you need in the "real" world as much as this virtual one. Know you are in my thoughts every day...a stranger on another coast is sending good thoughts you way. May that put a smile on your face if ever so briefly.

  4. This sounds really tough. I feel that all I can do is bear witness to your words. Please know that many care.

  5. This all so much for someone to handle, I'm sorry that the things have happened to get you and Wash here. Very sad, thoughts, prayers and well wishes for you! ::hugs::

  6. I think you're being so brave--you've dealt with all of the fraking cancer stuff so well. I wish you didn't have to, and I wish you had the old Wash back, and I wish you could just have a good night's sleep.

    Thank you for showing so many of us what grace under pressure looks like. ... you two are cared for, by a lot of people who just happened to stumble upon your story.

    Wishing you peace, and as mentioned-and restful sleep. Take care of yourself. xo

  7. I've been reading your blog for a while now (also found through Regretsy, and my friend Bekka made your Tardis. I haven't commented before, but really feel urged to let you know that you & Wash are loved.
    I'm amazed and in awe of how you're handling this on your own. I'm thinking about you and Wash & sending health and rest your way.

  8. Sending you love! I lost my dad to cancer. I cannot describe how healing it is to read your words.You are incredibly strong. Wash loves you so much- that will never ever die.

  9. I found your twitter page through #BrainTumorThursday and then this blog. I have a sister who is going through this. She's not quite at this stage, but we know she will be at some point. She lives in a nursing home as none of us had the resources to care for her. She has a 9 year old son who doesn't really understand what's happening with his mom. He lives with his dad (my sis' ex). I'm so sad you are going through this, know that you are not alone. Unfortunately there are a lot of other people in similar straights, I hope someday soon that will change. You are so strong, I wish I could send you more than a virtual hug and my best wishes.