Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
PR's new saga...
Hopalong:
And here's a book that looks helpful, though it may help you more than Hubs, if he's not well enough to read or to focus on listening.
Can't hurt to accept the comfort of it anyway--your poor heart is hurting as much as his.
http://www.amazon.com/The-Art-Dying-Persons-Facing/dp/0312167768
love
Hops
sKePTiKal:
Hops, that's it. Bullseye again.
I think we might both be in the "bargaining" stage of K-R's definitions of the process. The truth is, that at one point, in my struggle to even get him to go to a doc and find out what was wrong I blurted out: "I just want you to know, that if your intention to just die on the couch as a way out of putting up with me, I think it's a really shitty way to leave me". It was a mean thing to say, to someone I knew was sick, even then. I was trying to be funny, but it still doesn't come out that way. But I wasn't reaching him, even then - if he wouldn't get help for him, then do it for me.
And looking back at that, I really think that's what he wanted to just drift away on the couch. I also asked who I should call if I couldn't wake him - 911 or the morgue, in that stage of things. He didn't want to be part of this "science experiment". I asked him, after he got home from the hospital, if he really wanted to go through what we both know his mom did: the daily trips for radiation plus add in chemo and the multiplying collection of drugs and fixes for side effects. I periodically remind him he doesn't have to treat it, but here is what you're looking at. His response is, that once he decided to go to the doc he'd see the decision and the process to the end. I'm going to try to convince him that if it gets to be too much -- he doesn't HAVE to. He doesn't have to worry about anyone else - or their feelings - just him. He's allowed to change his mind. He does realize that everything that's been done in treatment -- has made him feel worse than he did before that Tuesday, 6 weeks ago.
He is now reducing how much water he drinks. Even though he knows that's going to mess with his pulse rate & BP, rationally. Yesterday, he had a bathroom accident right before we were going to leave for the dr. appt. Subconsciously, he doesn't want to go through this. He's fighting it on so many levels. Time to tell him, I'll be OK -- sad, but OK -- and give him permission to go and skip the next level torture regime. HE gets to decide; not the doctors, not me... just HIM. I don't want to see him suffer, just because he thinks that's what will make me happy - to fight this, and suffer through it, on the unknown amount of chance that he'll be OK. The docs aren't saying whether this is worth it. I keep rephrasing the question, to no avail. The new one just said that every little bit they could shrink the tumor would improve his breathing.
Yes, I know they are trying to manage expectations and gauging emotional reaction and trying to control the process too. But someone has to be honest about a prognosis here, pretty soon. I don't see a money back guarantee if they're simply treating him, because this is all they know how to do... when they really don't see much chance of him improving much. I'll try to talk to him again today. My head is clearer about where we are in all this. I keep looking for what is the KINDEST thing for him. And I'm going to have to up my organization of all the drugs; when to take them; and appts; and when in that schedule I have a minute or two for myself.
My kitty knows. She hasn't asked Daddy to play since he got home and she'll come across the back of the couch and just sniff him... and then curl up next to me somewhere. If I were superstitious, I'd think this has been a really bad place for me given all the losses: Jean, the dog, Holly's two cats... but then, they were old have lived good lives, and it was their time. It seems too soon for hubs -- but that's just my selfish desire to keep him around. I don't think he wants to be this sick for a long time. And I don't get to decide anyway.
Hopalong:
(((((((((((PR)))))))))))))100
Yeah. Just giving him ALL the power and following HIS lead about everything, will probably relieve you both.
You mention "telling" "convincing" "explaining" and "reminding..."
How exhausting for you to remain teacher/leader/coach. And, in the big picture...how fruitless.
Just comfort. Just company. Tiger Wife retires. Kitty Wife.
Sit in sun. Breathe. Purr some.
Present present present present...
Whatever small tasks you gotta do, you gotta do.
And whatever you can do for his comfort, gotta do.
He will manage the rest. He can manage his own decisions (even the floaty passive ones)
and it may be easier for him to do if he's not forced to dialogue about it. The mystery is
beyond words and of course you don't want him to feel guilty.
(Your previous anger at him for non-compliance is totally human and natural. Many people feel
temporarily angry at a dying loved one. They're abandoning us! Then rally back to the present.)
But all the strategizing and researching and hoping for better clarity from docs, feh.
Some can, but mostly they are taught not to give specific prognoses (but you and Hubs
already have some intuitions going about that). So you get this-and-that,
like a mechanic who looks at your rusted Corolla and muses about a Maserati
he saw once that was built on a Toyota frame. He (they) mean no harm, just
aren't comfortable saying, Sorry, lady. It's done.
In my experience, asking doc/s directly about, do you think it's time for Hospice,
will get the answer you're searching for...in an indirect way. Hubs doesn't have to hear it
right away. (I remember my Dad poignantly asking the Hospice lady who came to orient
us..."Does anyone ever, ummm, graduate from Hospice?" He meant get out of the
prognosis of course. But her answer was calm and clear. It is about living your best life
for as long as you can. Our focus is on the quality of your life, making it good. (Something
like that, but better said. She never used the d-word.)
Really glad you're thinking of K-R (I heard her talk once, am grateful for the revolution
in end of life care and attitudes she began).
Hospice will be a revelation of peace for you. I imagine your shoulders
will drop about a foot after their first visit. Hubs' too.
Much love and comfort (for what cannot fully be comforted)--
Hops
Hopalong:
PS, if you'll forgive my advising...
One suggestion would be to try to set aside a desire to direct him to Make A Statement About His Decision to Keep Fighting or To Stop.
He might not be in a Make A Statement Out Loud place.
And being pressed to might increase his stress.
Whereas if you let him avoid, float, not engage with subject, deal any mild passive way he seems inclined to...I think it'll all be a lot more peaceful for him.
Not for you. Damn it. SO hard to "turn off" your go-to skills and approaches.
Seriously. That is a huge and loving sacrifice on your part.
much love again
Hops
lighter:
((Skep:))
::sending prayers for Amber, M and family..... lighting lovely cyber candles, preparing tea and roasting chickens with you in mind::
Lighter
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