2017/08/14 17:13:46
michaelhanson
Sounds like a good plan Jim. I will continue to pray for both you and your wife.
2017/08/14 21:59:09
bitflipper
I've been where you are, Jim. Nothing prepares you for this, or for what comes after.
 
The only advice I can offer is to stay strong. Which sounds trite, I know. What I mean is, don't despair if it sometimes feels as though your internal strength isn't up to the task. That's to be expected because, well, nothing has prepared you for this.
 
Here's what I found out: strength comes from your connections. Connections to people, to places and to activities both familiar and new. Reconnect with friends you haven't spoken to in years. And make some new ones. Seriously. For me, therapy came in the form of joining a band. Plus, I got a lot of support from folks here, too. So stay connected.
 
2017/08/16 03:58:32
jimusic
Thanks Bit. I knew you'd chime in with some good, sound advice.
And thanks to all others here as well. Much appreciated.
 
I did go to the hospital admin who was very nice and understanding, who listened and let me express all my concerns. I did not go up to the ward nor speak to the Oncologist.
The admin said she would need to look into it, (naturally) and then called me back to say that she would have the social worker talk to my wife as they have been doing lately - since the day I was turned away from there apparently.
Neither will be getting back to me about this though, so it will all be up to my wife if and when she's ready to see me again.
I was told by the sister that she sensed my wife now has some anger against me for whatever her reasons are.
 
I suppose nothing's out of the question now though, what with 3 months of chemo poison, Hydromorphone and Gabapentin, not to mention her head injury at 7 years old, years of abuse from various men before I came along and of course the ultra terrible news she received last week and now has to face.
 
The poor girl - and I just can't be there for and with her.
At least she's not alone though.
 
But my heart bleeds - because she always came to me for the last 8 years and I always fixed things and made things better for her.
 
Someone suggested that her mother and sisters are 'permanent' but that I, as husband may be considered 'disposable'.
I never thought of that, but that could be what she needs to think of me as now.
It may simply be a defense mechanism for her to reduce her emotional stress load where I'm concerned.
She will already be thinking of her mother and sisters feelings as it is.
 
I'm starting to accept that I may never see her again, and may have seen her for the last time last week Monday. 
2017/08/16 13:13:44
Slugbaby
jimusic
 
It may simply be a defense mechanism for her to reduce her emotional stress load where I'm concerned.
 

People do strange and unexpected things when they're in her position.  It's much easier said than done, but try not to take it personally.  This may not be "the real" wife talking now.
2017/08/16 18:10:18
jimusic
Yes, true enough I suppose - just real hard after so many very close, special years.
 
Try as I might, I just can't imagine what she must think at any given time nor what she may going through, not to mention the pain, which is most likely increasing.
 
Thank you Slug
2017/08/17 00:23:24
slartabartfast
It is not too surprising that a person in your wife's position will revert to the behavior that sustained her as a child. It is not so much that a husband is disposable, as that people in the process of dying, and in the medicated stupor that palliative care offers, will regress to childlike coping mechanisms, and that includes trusting the people most who were most significant to them as a child. Going to the hospital administrator was perhaps not the best move. Nothing makes such people call in their lawyers as fast as a person asserting his rights. As a matter of law, in most of the United States and absent a durable power of attorney for health care, there is a statutory or customary hierarchy for substituted judgement in medical care that gives the spouse (the assumption being that this is the person the patient chose above all others) then living children, then parents the right to consent to treatment if the patient is no longer competent. You can find this pretty easily in your state laws. If your wife's current condition leaves her with legal capacity to decide, she is the decider, and can designate a person other than her spouse the authority to make these decisions. 
 
Given that both you and your wife are believers, I would have though that the most appropriate contact would have been your pastor, or lacking a common spiritual adviser, the hospital/hospice chaplain. Such people are in a much better position to mediate the situation you describe than a social worker. 
 
First, you must ask yourself, why the oncologist would have referred your wife to palliative care. In my experience, there are only a few reasons that oncologist will not continue chemotherapy. The first is that they have decided that the treatment itself is worse than the disease. One would like to think that they would stop treatment based on the fact that it has little chance of success, results in useless suffering, and represents a waste of assets, but most will give these issues only a secondary consideration, continuing nearly hopeless treatment so long as it is welcomed. The most important remaining reason is that the patient has requested that such treatment be stopped. Has your wife told her oncologist that she is ready to die?
 
There is an unintended cruelty in demanding that dying patients continue to rage against the dying of the light. It has appeared in this thread, masquerading as exhortations to seek out quackery and clinical trials, for which your wife may well be too sick to qualify. Can you imagine the suffering imposed on someone who has come to grips with the inevitability of their own death, who is now confronted by demands that they wage a useless battle, simply because someone close to them cannot accept the inevitable? Can you picture your loved ones, making you feel guilty for failing to fight, clinging to the impossibility of your survival, failing to acknowledge their inalienable right to decide this single basic question that remains to them? This is the last and most basic opportunity you will have to demonstrate your respect as well as your love for your wife.
 
I do not know God, but from what I have heard of him, I do not think that he is afraid of your wife's death, or that he will be influenced to intercede by my opinion, or yours. By all means attempt to make a reconciliation with your wife, in the short time that you have available. If her mother is the obstacle, use the law and the power of your church to help remove her. But do not bring your own obstacle by demanding that she continue to live when she cannot. 
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