Tuesday, April 3, 2012


The pain in my heart is intense. It is overwhelming. Tears keep smearing on my glasses, but I can't write without seeing. Too many typos.

I did something last night I regret. I don't often have regrets, really never, so this hurts like a new kind of pain I'm discovering. I feel used. I feel like I have not in years and years. Dirty. Bad. Selfish.

I allowed myself too much hope last night. Too many thoughts and ideas of what Once Was, not what Is.

He can't even keep his days right anymore. The first thing he asks me when he wakes up now is no longer "I love you. I'm happy to wake up next to you" sort, now it is, "What is today, Tashi? What do I have to do? Am I seeing a nurse or doctor today?"
Physically he has sometimes 2-4 hours in a day where he is or can be active. Usually about 2 hours at a time. He sleeps a lot, and watches a LOT of movies/streaming stuff. With his memory issues he's finding it harder to watch TV with commercials, by the time the show is back on he's forgotten what's happened. Watching on DVD or streaming helps with that, he can keep his focus better and enjoy watching.
I try to read to him when I can. He asked me the other day to start getting the daily paper; getting news from blogs and sites is too confusing, so he wants to just look at the paper. He has not kept up with the news in years, I fill him in on the topics of the Daily Show and other things, but emotionally he can't distance himself; it's why I stopped reading him news years ago about the Affordable Care Act, or other AZ laws that have been enacted in the past few years which literally can kill him.

It hurts. I had a moment yesterday to stop that hurt. I took it. I regret it.

I feel like I've cheated on my husband and the man I swore to love to his death, with I'm not even sure. Who ever is wearing my husband as an Edgar suit right now.
I wonder if there's another tumor hiding in there? Eating up my husband, my love, and leaving this poor shell that doesn't even know he is being hollowed out.

He lives Groundhog day every single day, and only barely knows it. It hurts to watch how far he has come down. It hurts to see him give up the things that made him happy because they are just too dangerous or he can't be trusted to properly supervise himself. He's in an Adult body, but he cannot take care of himself. In any real way, he can't.

I know he has Hospice folks in almost every day to check on us. I worry they don't see what I do. They are not here 24/7 and don't always see him fall apart- lately he's been letting help in so they can. I worry since Wash is able to project himself into some level of "normalcy" for sometimes an hour at a time, people don't believe me. They don't see how much he's lost of himself.
Then again, I can't keep my own house clean anymore- not and watch him- I am falling to pieces, and I wonder if they can see that he cannot help. He wants to, he does! But saying you are going to do something for 5 days in a row, staring at it, but not doing a thing.... this is what he does. He cannot be honest with himself or with me. That hurts so much.
I could make provisions, I could make plans, I could ask for more regular help if he would be honest- first to himself and to me. But he cannot. He cannot see that what he says he never does, he has no follow through. That's the cancer. I don't know if it is cancer or Wash though, that does not want to face the truth, or even hear it from me.

It's a sharp Guillotine above my head. He was once an adult who had a complete brain. He was a genius. Now he cannot remember what day it is. He's 27. I infantalize him for safety, win/lose. I treat him as an adult and spend all my time fixing, repairing what he's messed or broken win/lose.
Either way, it is painful for me, and then I still have a blade rushing towards my own head.

Too many tears.


  1. When he is Wash, he's Wash. When he's not, when he's an 'Edgar suit'... well. You're not cheating on Wash at that point. I truly believe Wash- your Wash- would want to comfort you and protect you from 'Edgar suit'. Wash -your Wash- would definitely forgive you your 'transgressions' -in quotes because I don't think that you could even think about possibly really transgressing against Wash. {{{{HUGS}}}}

  2. Just to let you know--YOU MADE ME LAUGH with your "Edgar suit" comment. I LOVE THAT SO MUCH--even though the reasons behind it are so sad and frustrating. :/

    I cannot begin to imagine an hour in your shoes, let alone a day. I'm over here praying for your day to suck less.


  3. It is the cancer, love, and I recognize the bastard from the exact same behavior in my beloved Ellen: complete personality change. No memory. No focus. All of that is NOT Wash; it is most certainly the frakking cancer.

    My advice to you is: ask for the more regular help. Take care of yourself and your needs and your house. Wash cannot help but say what he says, and believes he means it when he says it. But your Wash is ... getting squished in that braincase into smaller and smaller space. :-( It's the bastard cancer that is doing much of the talking now, I am afraid. Try not to think of it as 'infantilizing' him; think of it as keeping him - and you - safe and cared for.

    He is going to continue to say awful things. Ragey, mean, hurtful things. It's how this goes. You are stuck on this awful ride and you don't get to choose when to get off of it; it ends when it chooses and it will inevitably end sadly. (I hope that does not sound harsh - that metaphor was what it felt like to me: "I don't want to be here and I don't want to experience this and I DO NOT WANT THIS TO BE HAPPENING and I want OUT." But there was no out. Not until the end. And it only got sadder as it progressed to the end. )

    Please do not feel guilty about taking some time to yourself to process and grieve. Even if Wash/Edgar screams and rages at you for daring to leave his side for a few hours; he's probably going to rage and scream at you whether you stay or go anyways. :-(

    If your experience is like ours was, then at best you can sometimes calm Wash, sometimes meet whatever random and ever-changing needs which he comes up with (OCD behavior and whatnot), and sometimes get enough sleep yourself.

    Take all the help that is offered, love. You're in this for the long haul and you need to be propped up for as much of it as you can.

    It made sound a bit heartless but your first responsibility is to YOURSELF. YOU need to take care of YOU, no matter what is happening around you. Wash is your top priority, no doubt, but . .. if you fall over, who will take care of him, or you, then?

    I send you the biggest hugs (that you can tolerate IRL that is ;-) ) and kisses and care. I would save you from all of this if I only could. <3 <3 <3

  4. FunChefChick............ (from her exact same agonizing personal experience, Above, with her beloved Ellen, for which I am so very sorry)............ made an extremely important point about taking some time to/for YOURSELF, Tashi, i.e., to process and grieve. WASH'S Hospice Nurses and Social Worker all truly understand this (very legitimate!!) Spousal Need............ which, to be frank, essentially "mirrors" Wash's own Patient Course-Of-Illness............ and they can help YOU, Tashi, to figure out, (i.e., as part of their WHOLISTIC Patient Care Plan for Wash)............ what/when/where/how best suits............ *Y.O.U.R.* needs to process and grieve, too, right now.

    My first cousin Mark had to process and grieve, i.e., w.h.i.l.e. his longtime (33 years) beloved wife Nancy's CANCER............ slowly caused "the Nancy" Mark knew to "absent" her REAL self............ FROM herself............ as poor Wash's CANCER also has been cruelly doing to him, too. (Nancy's monster-resembling cancer tumor was initially wrapped all around her right carotid artery; then "it" decided to colonize all her organs, i.e., metastastically).

    Prayers and many quiet ~ (((hugs))) ~ from me and Jack to you & Wash both -

  5. Hey Tashi. A few of us over at Yip were missing you and I google stalked you...sorry to be e-creepy. Just wanted to let you know we were thinking of you and rooting for you.

  6. We've never met, but I've been following your story because my husband and I are super nerdy Dr. Who and Firefly fans. (Um, we still play old school D&D, so we're not even cool nerds!) You guys had a love affair similar to ours and I could not imagine for a moment what it must feel like to know that you totally got screwed. All the unimaginative people in the world that are in miserable relationships at their own behest have nothing but good health and you guys had something REAL and GOOD and AMAZING and now THIS? It fucking sucks balls.
    You've gotten lots of great advice here and its true. Take care of yourself. You are young and bright and are obviously made of solid gold. Let those parts of yourself continue to grow, so that when the time comes when you can move on, you wont have so far to travel. Don't blame yourself for what you can't fix or get around to doing, no one else does. We are our own harshest critics.
    Give yourself some lovin and allow yourself to be loved. It doesn't have to be romantic love, but you need it and YOU DESERVE IT! I hope that this isn't out of place, but you're in my heart and it breaks for you. Its obvious other people feel the same...broken hearts are taken care of here. You can let your heart beat happily every once in a while. Don't beat yourself up about it. It may get worse before it gets better, but don't ever convince yourself that it wont. You had REAL love and even though it wasn't near long enough, you know what its like and you have some inside info about people that some will never know. That's pretty great, because you will recognize it in other people and those are the ones that will help you get through this.
    I'm pulling for you and think about y'all (even though I don't know you) everyday. I'm sitting in a hotel in Denver after spending the day in the hospital with my uncle who has bladder cancer. He saved my life at one point and it SUCKS that this is happening. Thanks for your honesty. Wash is a lucky man. Edgar...TOO LUCKY.

  7. How parallel our lives seem to be! My husband Tim's and my days are eerily similar. I get the same questions over & over & over. Do we have appointments today? Do you have to work tonight? Did I eat?? I can give him an answer,he asks it again in 5 mins. I literally have to stop myself from screaming the answer at him sometimes. It's not his fault,it's not his fault has become my inner mantra. It ISN'T his fault dammit, it's this hideous beast inside his head.
    Late at night,after he's gone to bed,I cry,alone. I miss his touch,our sex life,everything he used to "take care of" around the house,it's all on me now. I have no partner anymore, and I hate it.
    I am here if you ever want to talk, I know just how you feel.