PR's new saga...

[sKePTiKal]

Hi guys, me again. I hope you're all doing as good as can be expected, these days.

What brings me back, is that my hubs has been acting "weird" all summer - you know, the guy I lean on a lot to be the other half of my brain - and well, last week he endured 4 days of pure hell, because I wouldn't take no for an answer about him going to a doc and find out what was wrong. Getting him to cooperate with that, took MONTHS, and finally I used woman's oldest persuader -- tears. Not that it was on purpose, intentional or manipulative. I just sprung a leak.

He has COPD so bad, that the surgeon will NOT operate to remove a mass in the upper right quadrant of the right lung. He's had every cancer test known to mankind, but the "tell" was an exploratory scope and internal look at the lymph nodes. She came right out while he was coming to, and said that it was too risky to schedule the surgery until - if - he could increase lung function from 25% to 50%. He was high risk for respiratory failure.

The good news, is that the mass isn't growing and that while it's touching the ribs - and causing some pain - it hasn't really spread anywhere else. He is in really good health (according to all their measurements) otherwise. COPD is the current problem to deal with. I start with all the bureaucracy this morning and back to being a road warrior getting him where he needs to be seen, etc today. They sent him home to find out if he is just giving up and wishing to die at home... OR, if he's going to participate in his treatment and work at it.

I've been out & about online and acquired a group of homesteader friends. One is a retired military physician. He said something that I didn't understand at first; then saw the lightbulb go on; and now really concerns me. It's not a topic for a practical, activity & skill based discussion board. Doc said that hubs was trying to shield me from the truth of his condition; protect my feelings. Since then, I've just been watching... and have also seen there's a lot of projecting coming from him. Before the inescapable truth was presented to us, there were other things too. Big time denial - and even plain, pure neuro disturbances. Things like, he kept telling the doctor he'd only had symptoms for a month - right in front of me! I'd correct that statement, and he'd be angry - like a little boy desperately trying not to get caught in a lie because he knew the punishment would follow swiftly.

I am a tad out of practice with the kind of work we do here. Imagine it'll come back to me really quick - LOL. But, the kids are swarming to help us, hubs' brother is indefinitely staying with us - and he's also a good person to bounce things off of and knows hubs from a completely different angle (he noticed the same neuro thing, for instance)... and we have friends here, too, in real life. I'm not really alone - which is what it feels like; I'm more able to ask for help than before - which is why hubs' bro is here; and I know I must let off the pressure that builds up emotionally and feels just like steam in a pressure cooker. One way or another...

So, as time goes on and I post more, y'all feel free to jump in and tell me what I'm not seeing (usually right in front of my face)... tell me where I can change and adapt some, to make things easier here, etc. Hubs D - the flight nurse - put a suggestion right out in the air for me that I hadn't thought of. That perhaps I need to hire a caregiver, to separate "wife" from "caregiver" - for both of us. I thought it was a very helpful idea. There's a bit of hostility and taking things personally, old grievances and a little "I told ya so" from time to time. Last night there was a misunderstanding about whether windows were still open; and he said: so that means I'm stupid, right?

Which I hadn't implied AT ALL; I had even just said: I just forgot to tell you that I already closed them.

Writing that bit down, I'm looking at it, and just..... WOW. I never would've expected this from him. After 15 years of co-existing relatively peacefully.

I am very tired. Eating only in between times, so that I could try to be around when the doc "magically" arrived with information. Driving 90 miles. Tense, wired, worried, not getting enough sleep -- and my whole sensory, cognitive function is messed up. Physically clumsy, doing really dumb things. I have double wall ovens. Making lamb last night - so, I sear it at 500 for 15 minutes. Have to turn oven off, to reset it for 350... but I forgot to check which oven I turned on. Then, saw the open can of peaches I left out, getting him an afternoon snack. And there's more; some of it spectacularly comical.

[Meh]

Hi

[sKePTiKal]

Hi Garbanzo! How goes it? I remember that you were on an amazing and interesting journey through "inner space". Is that getting any more cozy yet?

TT, my friend! This particular plot twist in my story was NOT planned or expected. It's been like a roller coaster. Of course he feels better being home and not being a "science experiment" as he put it. But he's trying to quit smoking, readjust his sleep to something not institutionally CYA for vitals every hour, and be able to swallow food. He had every test known to mankind. The last was minor exploratory surgery, which required a breathing/scope tube down his throat.

Boundaries... boundaries... boundaries.

I had to violate a big one to finally get him to see a doc and start finding out just what was wrong. There was a lot of male ego and "it's only a flesh wound" type of denial going on. So my verbal assault escalated into things like: if I can't wake you up the next time I come into the room - who should I call? An ambulance or the morgue? And, if dying on me is your plan to leave me - you picked a shitty way to do that. (Still have some unresolved crap from my Dad...) It was Monday night, when I was trying to massage his back to help ease the pain that finally the emotional pressure got to be too much and the eyes started leaking... and then it was a torrent... and then he agreed to start with urgent care the next day. (Yeah. Urgent care.)

He's become extremely passive. That concerned me more than anything - and leaves a path for me to take over. So of course, all the agony he was put through last week is my "fault". He's only half serious - but yes, part of it is serious, too. He would rather languish and slowly fade away. He absolutely LOVES being doted on, the waiting on him hand & foot and the attention. God forbid there is essential work to be done around here, and I'm gone longer than he thinks is necessary. He came looking for me yesterday. He is becoming more engaged and I told him the key to fighting the nicotine craving is to keep his mind active & focused on something else. If we can get him through another week, he'll have made it straight through cold turkey.

So the boundaries are ever-shifting. All the way from help me, help me ........ to mind your own business, lady. Someone (medical friend) tried to drill it into my head, that because I'm his wife - I have a RIGHT to insist that he get care; that he take his meds on time; that he not overdo it and starts to participate in his own survival. That's kind of a foreign concept to me. Don't we each have to decide and choose that for ourselves? I don't know, now. Looking at it again.

Then, with the kids - and trying to manage my own level of "overwhelm" - I finally read loud & clear from my D that the kids have their own feelings about hubs and me and all of this. She kinda has the "voice of command" sometimes. I dunno where she got that - LOL. It is abundantly clear that hubs wasn't thinking about the feelings of all the people who care about him. I relate to the fact that when you're sick - you're very much the center of the universe and priority #1. I'm not sure that qualifies under the definition of "selfish" or "self-centered" though. It's more like a negotiation with the various parts of ourselves and trying for a peace treaty with the body.

ETA: And yes, part of the kid's message is directed at ME, too. I can't take all this on myself without asking for help when I need it, either. I needed the reminding, about that.

HVAC service guy is here this morning. Hubs insisted on going downstairs to keep an eye on him - and probably have someone to talk to who doesn't know he's ill. Then, there's the male ego thing. "Don't count me out just yet - even if I should be eating, resting & taking my meds - I want to do this." OY. Minefields and tightropes again.

And just for fun - we're watching for another tropical storm development. That makes driving so much fun; can't see the lane markers on the road even in the daytime. This is late in the season for this, but I kind of expected it to pan out this way. Superstorm Sandy was Halloween weekend. What the heck; the storm kinda matches my emotional swings. I am back to morning crying though. I've been sleeping alone most nights for a few months now, so that waking time (down to about 1/2 hr these days), is my time to recognize and release the emotional pressure.

[Dr. Richard Grossman]

Hi PR,

I just wanted to let you know that I’m reading your posts.  It’s so hard when a spouse is seriously ill:  Life turns upside down.  I know from when Hildy (my wife) was suddenly diagnosed with lung cancer.  All we can do is our best, and try to let others around us help in ways that we are not used to.  Take care and keep posting…

Richard

[sKePTiKal]

Thanks, Dr. G -- that's good advice about letting people help. I seem to be buried in offers, too. What I've realized is that those people have intimate relationships and care about hubs, and letting them help, is how they are able to share that. It is a quick antidote to feeling overwhelmed and "all alone" too. I don't need to gatekeep those people away from him or me - when it frees up time for us to just be together and use that to nurture a recovery... or for him to finally say what it is he thinks he needs... and me to respond.

A doc friend pointed out that his behavior, kinda sounds like hubs was protecting my feelings by pretending there wasn't anything wrong with him. (That's only a small of part of it; but one I would've missed completely.)

Somewhere there's a balance for me - between feeling like I need to "entertain" people who are here, helping; and taking care of their needs too... and letting them take of me, too. LOL. Same as it ever was.

[lighter]

Well Skeptical, your dh is lucky to have you as his road warrior.

Sure there's denial, childish behavior, fear and touchiness.... he's under the gun, and he knows you're safe and will love and support him no matter what.  Those feelings come out sideways, even from people who would normally never act that way.... this kind of stress is something we aren't wired to handle day in and day out.

I love the idea of a caregiver hired in to help out, and provide a buffer for you and hubby.

Do it if you can and if it still seems like a good idea.  I think it will help, IME.

It's good to hear from you.

I'll pray dh improves, and has the best possible outcome.

((((PR and family))))

[Meh]

Reading the post, sorry I hadn't read it earlier. ............>>>>>   " if - he could increase lung function from 25% to 50%. He was high risk for respiratory failure"   >>>> So what does he need to do in order to get to that point where is lung function his improved? Oh I just read the part about smoking. Well anti-depressants are prescribed for smoking cessation plus the patches. Wait can he use those E-cigs/Vape things? He still would get the nicotine but it would cut out all the smoke etc.   How stressful.

So, its malignant for sure then?

Yah, some guys don't realize how much of a burden they add to other people's lives by being uncooperative and non-participants in their own health. I don't see any boundary violation on your part. He is LUCKY to have somebody who cares enough to "nag" him on one hand.

Maybe it hasn't sunk in yet with him, it all sounds very newly discovered.

Maybe guys think that they are keeping up some kind of facade by being "stoic". Maybe he is afraid shit-less but doesn't know what to do about it.

He probably needs to see a therapist related to having this diagnosis?

[Hopalong]

I'm so very sorry, Amber. Your sweet hub is facing (belatedly) his mortality and it must be so hard to see him struggle.
This is a painful chapter and so hard to go through line by line. I can imagine your sorrow and frustration taking turns surging to the surface over and over, like surf coming.

There is one thing you can be sure of, that you can keep on loving him, finding gentle moments and some smiles you can share now, each day in the day.

It's awfully hard when the medical side takes over, to remember that the loving is what lasts forever -- and it matters more than any short-term strategy or solution. You will find some that are good and other times you'll just have to release control, release to the process...knowing that the end of a story isn't the story, it's only part of it, how it ends.

You're not ending. And he's not either, yet. Live these days and love them.

Your love is bigger than your fear, and you ARE going to be okay. So is he, ultimately. So are we all.

Lots of love to you, and comfort,
Hops

[sKePTiKal]

Well, I've smacked right up into the brick wall of my limits. Our health insurance company has a program that counsels participants in the most "cost-effective" ways of managing their care - and help to be another set of eyes on what the docs are doing. Except I'm sure not seeing it that way at all.

I was told straight up they would not talk to me, about what we know about what's happened so far, diagnosis and treatment. HIPPA, you know. I told her they could stick that regulation where the sun doesn't shine since they're not the people trying to get him to eat another 100 calories of SOMETHING ANYTHING... nor driving the necessary 100 miles each way to doctors appts because no one this side of the NC border is taking new patients. Not to mention doing all of the other necessary tasks around the household. (That much I'm used to doing, but hub's previous neediness about being left alone while I'm outside working - has increased a lot.)

I was unaccountably angry about this additional "intrusion" into our lives. It felt as though they were keeping me out of the loop on purpose, because I don't matter. I am afraid of losing him to the medical bureaucracy, of a conveyor belt mechanical "system", that sometimes swallows and doesn't return the patient at all. And since hubs still isn't entirely honest with himself and is fuzzy-headed even about simple facts... about how long this has been coming on, over my insistence that it doesn't hurt at all to get checked out - and if there IS anything, to find it when it's easier to deal with...

well, I'm a genetically programmed momma tiger. For me to stand down, stand aside and let all these strangers take over - and for me to trust them - well, I thought I was doing pretty good and now I'm not so sure. Yes, he is facing mortality. I've already told him it's his choice to make - no other human has the right to make it for another - EVEN IF IT'S THE LAST THING I WANT. I observe him simply giving up and not trying to save himself, in the simple ways he could be doing that... and letting go isn't exactly my forte. I can't eat FOR him, I can't walk for him and get some strength back... all of that kind of thing has to come from him.

So, yes, Hops. I do what I can to keep each moment rich and gentle and kind. I've been humoring all his food whims... which come out of left field sometimes. I rub his back where it still hurts from the biopsy. I've bought breathing exercise tools for him and just put them within reach and left him to choose the time and IF he's going to use them. This requires swallowing my own emotional reactions; stuffing them down out of the way - because he is still embarrassed by them. He understands better than most, why I have those reactions - but simply considers being emotional - "making a scene". I'm more like that Italian stereotypical couple on the ice cream commercial - all yelling & hand gestures that simply evaporate in seconds to lovey-dovey-ness... and can start right back up again. LOL. No, I'm not politically correct with all of that either.

Hugs to everyone and thanks for the ideas. I'll come back & re-read them. The cup is flowing over this morning, releasing tension, and I'm not real "think-y" yet. Don't really have the energy to push myself to it either, right now. I feel like I'm getting up and doing something every 5 minutes... or answering someone, or asking hubs to repeat what he said because I didn't hear him... or answering the telephone or trying to hide somewhere online to just be able to read for 10 - 15 minutes in a row... and NOT THINK at all... just let be.

[Hopalong]

The system itself PLUS an unmotivated "patient" adds up to asking a tiger to become a trained pony.

So so so hard. I hear you.

love,
Hops

[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