Monday, February 21, 2011

What the hell, is going on, the clock ticks on

I am beyond upset. Hurt. Angry. Pissed. Crushed.

More family issues around here, this time on Wash's side. We're finding out that either;

A) They are willing to also lie about cancer as a way to manipulate Wash
B) That they have been lying to Wash for an extended period of time with no intention of telling him a *very* important truth

I hate seeing my husband cry. I hate seeing him in pain that I cannot relieve. His burden is so heavy and the people who he needs love from are just fucking with him. No one is speaking to me, and I'm really the one who makes the decisions. I am starting to see however the origins of Wash's communication issues.

I am proud that he is trying to stand up for himself though. It's a real issue- frontal lobe damage and all but he is trying. I am doing my best to assuage his "guilt"- he should have none. Why should he feel guilty if someone who he trusted lied to him? Why should he feel guilty if someone he loves ignores his explicit wishes?

He is trying so gorram hard to just live with the time he has left, and the people who are supposed to be there to love and support him are trying to get him to die on their schedule.

People cycle through grief at different speeds; however I am having to learn on a real hard curve at what point someone at a different place in the cycle can actually hurt Wash by what they say or do. There is a lot of selfishness going around and it hurts me that it's not going towards the good of Wash. It's a way to manipulate him, to humiliate him, to use him. I hate that. As much as my own pain is present I never forget that it is about my husband and what he wants with the rest of his life.
He has the cancer. He has already lived longer than medicine says he should. He still has his personality if not all of his memory.
More than that he has said he wants to spend his time with me. I'm thankful. We never really got to have a normal start to our marriage- his tumor was affecting him within weeks of our marriage and then before even the first year was up we found out he had terminal brain cancer.

I'm about 3 weeks away from our 2nd wedding anniversary. Wash wants to enjoy the time with me. We've finally got a date set as well to go away for a week, a real vacation for us. He is off chemo and this honestly might be his plateau- the best we get. He wants to give that to me. Again, I am thankful and honoured for it.

I have Aspies. Maybe that is why I just cannot see why the people who are also supposed to love him ignore his wishes for their own.

All he wants is to love, play, create, and live as long as he can. On his terms.
He's a married adult. I support his wishes. He's 26 and dying of brain cancer. I know how scared he is of the end, of the absolute terror of losing parts of himself as tumors come and crush different parts of his brain. He doesn't want that, and I want him to go happy and in peace. No pain.
Why is it hard to understand that going against his wishes and wants disrespects him? Why is it hard to see that the disrespect hurts him?

I don't understand the motivation for making a dying young man suffer more. He already lives in Arizona, the state will kill him soon enough, why add to his pain?
I just don't get it.


  1. Just wanted to send some virtual (((HUGS))). I'm sorry you don't have the support of the people who should be supporting him and you.

  2. You seem to be handling this incredibly well. It must be a constant temptation to give such people a verbal beatdown.

    This might not be accurate in your case, but I'll say it nonetheless in case it is: Remember that you are Wash's wife and don't let his family try to usurp your rights as his caregiver and life companion in any way. Do what you must to protect that, yourself and him.

  3. Ya know... we went through this when my mother in law died. My wife and her sister honored their mother's wishes. Two grandchildren (2 nieces) wanted things their way. We will probably never speak to the one that was the most bat-shit crazy.

    At this point, people are either pro-Wash or against Wash. This goes for his family as well. It's not like they're ever going to speak to you again after the funeral, so...

    Cut loose everybody that isn't 100% supporting your hubby. Tell them GTFO. Minimize the amount of negative contact.

    You DO have durable power of attorney, right? There's going to be a fight if Wash is incapacitated.

    Wash DOES have a will and it lists you as executor, right? Even if there really isn't an estate, it will protect you from having his family swoop in and take everything. You DO want some keepsakes, right?

    You ARE listed as Wash's next-of-kin on all medical forms, including hospice, right? This is going to become VERY, VERY important the instant that Wash is freed from his pain and flies up with the angels.

    You and Wash have pre-arranged plans for his final resting place, right?

    You don't want Wash's family taking control of any of this, right?

    You need to set up a separate checking account. If you and Wash have a joint checking account, it will be frozen. Banks read the obits and freeze assets ASAP.

    Sorry that it appears that you may have to fight Wash's family at some point. Unfortunately, fights take cold-blooded planning and strategy.

  4. Sometimes, painful as it is, you have to cull family members who are toxic. It's not fun. But trust me, it's far less painful than letting them hurt your husband, day after day.
    Hugs to you both