Tuesday, February 14, 2012


It's been a while. I've thought about making a video, trying to see if that would be easier. It's not. None of this is easy.

It all hurts. Everything hurts.

I should not have given him the ultimatum. I should not have asked of him anything. I should have left my image behind of who he was and made peace with that.
My mistake to live with.

I demanded from him recognition of myself as a person, someone independent of him with her own thoughts, and desires, and wants. He asked. He asked me what I wanted. I told him.
Gave him options, wrote a list, said it 11 times in a hour, gave him the name and number of who to call for help... and then just could not take it anymore.
Yes, he did in a way try to make me dinner. Thursday.
It did not happen.
I did not help him (outside of caving and actually physically mashing the potatoes for him). I left him alone and spent days watching him put off and half ass something he was supposed to be doing for me, until he could no longer procrastinate and had to make emergency phone calls to friends (more than 2!) to help him out.
He says it was a lesson he needed. He said he needed to see and feel for himself all that I do- every bit that I pick up behind him, take care of his needs, remember the details, leading the follow-through to make certain things have been addressed.
We did not have the meal until Saturday.**

My asthma exploded through this. So much stress it felt like my lungs were collapsing. My mum took me to my doctor on Saturday (that or the ER!) and I'm back on steroids, but also breathing again. Having dreams of being tossed out of an Airlock and suffocating is not really my ideal way to rest.

We have a few new counselors from Hospice to help with grief and such.
It is occurring to me quite roughly just how much my husband has changed in a year. Just how far further he has fallen. How much more help he needs, so much more patience and repetition. I am left feeling more and more worn. I feel used and less human.
I miss my husband.
I miss my friends.
I miss having goals, and wants, and desires.

I miss how pain-free (comparatively) life was for me 3 years ago.

I'm stuck now and there is no good way for me to get out sans scars. If I truly treat Wash like how he *needs* to be, then our marriage is over. I'll be purely the Nurse/Mother and we just will not be able to have that intimacy between us. I *have* to infantalize him because that's what the fucking brain cancer did. It stole my husband. It took the person I love so much. It took his higher functions away. It left me a body of a man, with the memories of a young adult, and a mostly destroyed frontal brain.
I've been pretending so hard. I've been giving up my own life to prop up a lie.
I wanted to believe that he would get "better". That he would become aware. That he could get back to at least being able to look after his own self-preservation.
It has not happened.

I'm left with a shell of the man I swore I would be with until death. I'm left with the anger, the pain, the fear from him all directed in these 4 walls, which all comes down on me.

Brain cancer stole my Valentine.

Honestly I don't know if he'll be here in a year. Days like today I'm forced to really look at a clear future and he's gone. He's not here. I have no card. I might get a chance to get a real one for him today, but I'm eating the pain of the knowledge that he did not remember anything for me. He simply cannot remember. Not on his own. I'm learning that he doesn't consider me that important. It's easier on him emotionally to get lost in a story or pretty movie, or a Wargame than it is to take the time to empathize with his wife. He's said so.
My needs as a human, as his wife, are less important to him to even hear, than is it for him to complete the next level of "Prof Layton" on his DS.
That's brain cancer.

There's no way to stop the pain or hold it off. It's coming.

I'm down this week to less than 6 hours of sleep a night. No naps for Tashi. No respite.

I feel like the glamour is slipping; the cracks show. I have to be the one to suck up every insult he throws and clean up after every mess.
Saturday I spent trying to clean up after Wash had ----------- doesn't even matter. 4 hours of laundry "fun" time.

It just all hurts.
I can't even take the time to cry or mourn. I don't have time to myself. It's always for Wash. He needs me and there is just no one else here to carry him for me.

I don't want to remember today. I'm thinking of our anniversary date from 03-14-2010. That was a happier time with my husband, even counting the pain I was in post surgery. I'll take the physical pain of being ripped open for emergency internal surgery over the emotional pain of a day like today, or this last week of seeing what brain cancer has done to the man who is still married to me.

I watched my grandfather decline and go from Alzheimer's. I watched my grandmother deal with that pain. I had many a late late night conversation with her after grandpa passed (a benefit of our bedrooms sharing a wall) about her being ready to "go join him".
I don't blame her one bit. I am happy for every moment I had with her, but I know those last three years she was just waiting to die. I hope she had more than a few happy memories in the 3 years she was widowed.
I'm starting to get it now.

I was not expecting this for 40 years. I was not wanting this direction for my life.
Cancer doesn't care what you want, what you dream, what you hope.
It just eats and kills.

I'm still not ready to say "Good-Bye" and I think I'm too late now. I worry so much that my love, my husband is already "gone".

Brain cancer is an evil I wish on no human. NO ONE.

**I am aware he "tried" this week. But he admitted he did not do his best, or even his full effort. He said he totally just half-assed the whole thing. Do I praise him as one would a child, giving him lauds for effort if not completion? That way lies the end of being "married"- he would no longer be a man, but in fact, a child in a mature body. Or, do I hold the part that is left to some account?- He admitted he could have done more, he just was literally too lazy/too self concerned to do it.
Every option comes with its own pain.
All I wanted was just a vegetarian dinner I would not have to cook or clean after.
I ended up cleaning, and doing a portion of the work anyway.

Being the Adult is tiring. Being the one legally responsible for another grown human is so, so tiring.


  1. I'm so sorry that your choices are so limited. That this is colouring your relationship with Wash. It's just so unfair that you have to deal with all this solely on your shoulders. There isn't much I can say to offer comfort, except that I wish cancer would just fuck off and wither away.

  2. I read your posts regularly, and am always in awe of your strength. I know what it's like to take care of a spouse that is sick and becomes someone you don't know. It pains me to see the struggles you're going through with insurance, etc. on top of taking care of your husband. Although I don't know you personally, I feel I "know" you through your posts. You can get through this. Good luck.

  3. All that I can add too is good luck and I am sorry as well. So sad, but know you are an inspiration to many.

  4. There's a book I read recently that made think of your story... John Green's "The Fault in Our Stars". It's about someone who's dying of cancer too young, and it's something that might possibly bring some solace to you right now. If you add it your amazon wishlist, and let me know that you've done it (just respond to this comment or email me) I would be very happy to buy it for you and send it your way.

    What you're going through... is not something a person should have to go through. And what you're feeling isn't selfish, it's the very real need to have your basic emotional needs met, and the grief that comes along with knowing your husband can't do that any more. My heart hurts for you.

  5. One suggestion for you, Tashi, is to............ KEEP talking, (with your new Counselors from Hospice; and the MORE you can possibly talk with real LIVE people, the better!! No kidding.)............ yet also to KEEP writing on your blog, too.

    Talk-and-write, write-and-talk, talk-and-write.

    In other words............ *ALWAYS* reach out to those who care about you, wherever they may be. My poor, distraught, shy/gentle first cousin Mark, (who lost his wife Nancy prematurely to cancer), reached out that way; and it............ honestly............ SAVED his life, you know.

    Prayers and ~ (((*hugs*))) ~ to both you and Wash. I just wish that I could fly out to Tempe; and carry some of this terrible load FOR you both, Tashi.

  6. Gawd Im so sorry! I salute you. For your ability to love a man going through this, to stick with him, by his side, till death do you part. Your bravery and your heart. ::hugs::

  7. I just wanted to tell you what brave & beautiful writing this is.I send you love & strength.