Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
PR's new saga...
Meh:
:) Reading,
Sounds overwhelming. Well take it slowly I suppose. Don't have to do it all in one day.
Sorry you have to go through all this.
sKePTiKal:
This is Dr. Visit week - everyone EXCEPT the surgeon. So, I guess I'll get more impartial information this week, to try to understand how bad off things really are, or NOT... and what treatment is being suggested and why.
Thanks for not drowning me in too much sympathy. I'm doing my best to support the idea (justified or not) that there is a way through and past this; that it's not a death sentence for hubs. Just having a diagnosis. So far, he's not buying it. But then, it seems he's been pretending for quite some time that he's just "old" (at 61), he just needs to rest... yadda-yadda...
We talked some about the experience after his brother returned to business as usual at work. The worst possible thing in the world was that he was going through all these awful tests & experiences alone; and he was alone because I had to take care of myself... or risk being a second patient, just from exhaustion. It was all very surreal to him, and because he wouldn't speak up and ask questions, also confusing. Anasthesia was a big problem; no sensation or memory at all from point A to point B... and it clearly troubles him. So, I gave him what we all know about rumination... about grieving, even... that this is normal up until a point, and that only he knows where that point is, and then he'll be ready to mark that experience "done, over, the past, a thing that happened to me" and put it down and move on to something else. I told him he isn't going to be able to know what happened or to retrieve those moments of self between going under and coming to. Just the way it is.
I let him tell that story about what it was like, over & over... because I know he's processing. And because of that - he has a childlike fear that going to dr offices is simply just a repeat of that experience, despite my explaining that what we should be getting is results of the tests, a diagnosis, a treatment menu of options, and a prognosis at this point. This is where he can say no, if that is really what he wants. My fear, is that he's pretended there isn't anything wrong for so long - that there's not much hope at this point. But I don't know that's the case yet.
Just that he doesn't want food; I doubt he's eating 1000 calories a day. Most of my "care" has consisted of trying to satisfy his food cravings - which seem to disappear when the food is in front of him. Reminding him, it's time for a dose of this or that... because he is extremely fuzzy-headed - although way more lucid than when he came home a week ago Saturday. I've been reading hospice and cancer.org info on the food issue - seems it's usually a bigger issue for the caretaker, than the patient! LOL, yup - nailed it. It's an instinctive physical response from the body that seems to make passing easier.
I'm not going to dance around the issue of the fact that he may be dying - but on the other hand, I need to hear that from someone who's assessed the results of all the tests and his current wasting physical condition. Even though I do trust my observation and senses and intuition... I'm not willing to bet his life on them. This could simply be the effects of putting him through such rigorous tests after no sleep and no food or water for several days in a row. (I don't exactly have a good opinion of that approach, btw)
I don't want him to die; he's my left brain!!! ;) And sometimes my right brain, instead. The yang to my yin; a perfect puzzle piece that fits within tight specifications to all my oddities of personality. And I simply love what a little boy still lives in his smile and jokes. But, dang if all this medical BS doesn't make things a lot worse and I have very little patience for the paperwork, the endless repeating of the same information (yes, even on the same form) -- when we were ASSURED that finally all this would be streamlined into a single database system, so safe & secure - yet eliminating all this duplication and redundancy. (If you believed that, I have a bridge for sale...)
And then, being told, that because of HIPPA -- I am persona non grata and have no rights to information, even though I'm the one responsible for getting him to care and making sure he follows instructions to the best of his ability.
I have two words for the people who destroyed the health system: UP YOURS.
Twoapenny:
((((((((((((((((((PR)))))))))))))))))))))))))
Obviously the systems in the UK and the States aren't identical but I really identify with your struggles with dealing with admin/bureaucracy type stuff and as someone who has been looking after a disabled child for ten years I would say to you please, please, please accept those offers of help. Let people clean and do the garden, pick up groceries, sit with hubby, chuck wine down your neck and make you laugh when you feel like it's the last thing you can do. The emotional side of this sort of thing is horrendous, as are the 1001 new skills you have to develop immediately as well as having to slip between roles as wife, mother, care giver and just being you. You will burn out very quickly so please accept help whenever it's offered, however small and however much you might not feel like it at the time. Try and carve out a bit of time for yourself, even it it's just to sit on the step and look at the sky for five minutes. Is there a way your hubby can nominate you to be able to access information and be kept in the loop? Called Power of Attorney here, not sure what it would be called there. Would he take meal replacement type drinks rather than food? At least you'd know he's had a bit of something decent and then food can be more of a taste bud treat than worrying about nutrition.
Sorry you are going through this. Tough times. Lots of love xx
Hopalong:
I think it would be wonderful, if budget allows, for you to not be his nurse.
Just his True Love.
I remember when my Dad was in hospice we did a lot of gentle joking. Time slowed.
He wasn't in denial in the way your H is, but even with a patient who IS in denial,
most medicos can still figure out the reality of his condition. He won't have to break
out of his denial for their tests, etc. to show exactly what's up.
The HIPPA stuff is quite the boundary. But it's because for any adult who has not
been legally declared incompetent, it's the law that theirs is the primary voice in
their own care. Even though you know you're more competent it doesn't matter
legally...he has the right to that autonomy. And it must drive you crazy.
All it may mean in the long-term though is that he may have gotten somewhat
better for some period of time, if he obeyed every instruction given (whether by
you or by doctors). And if he is less obedient, he may pay a price in time lost.
Meanwhile, though you have not much control over his quantity of time, you have
a whole lot to do with its quality.
Whatever you can do to be Amber, rather than Superwife, will be good for both
your hearts, imo. I hope you can let go let go and let go some more (iow, delegate,
hire, accept help...) so you can enjoy the sweet concentrated times with him.
This is very hard on you and on him, too. No point making him feel guilty now.
Or yourself either, if you can't stop a hurricane...
love to you
Hops
Meh:
Reading you PR.
I was always under the impression that the patient decided who could participate in their care and all the patient had to do was tell the medical staff that wife is privy to everything
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