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PR's new saga...

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sKePTiKal:
Lighter - it's because the docs were all brand-new in the hospital; we covered the paper work when we did the office visits. Much of that is now corrected. And you're spot-on -- we DO tend to put ourselves in the position of the patient and suffer just as much. I know, tho - that my symptoms are almost the complete opposite of his. Together, we're just one big happy mess - LOL.

We had tests in the city both Wed/Thursday and that's why I've been awol. Trying to get some/any food into him before, between and around those trips has become a lesson in futility. He goes into mini-crisis with the breathing and his body focuses all his energy on breathing - he CAN'T physically eat. He chokes; says food gets stuck going down. Milkshakes and frosties seem to be OK. And those damn peaches.

After those back to back trips in the car with O2 and with every measure to help him conserve energy... he was showing symptoms of congestive heart failure last night. None of the docs have said: if this happens call, no matter the time. If I drag him the 12 miles to Nags Head & the ER - that will worsen his symptoms and they have no facilities to care for him; all they can do is initial diagnosis and send him to the city. We screwed up on understanding the depth of the medical capabilities here, when we did our research for the move. Of course, I sure never anticipated having 2 cancer patients on my hands in 5 years, either. His mom died 5 years ago next month. I just remembered that this morning.

I've had to do my own research and it's a good thing I learned how to read medical journals without going cross-eyed, for the pertinant info, and skipping over the yadda-yadda-yadda. And while it helps me tons to have some data to understand what's going on, I know I'm still not a doc. Test should be over with now - except for fewer, farther apart to track changed. Next week is dr appts again and while they're still reversed (according to bombastic doc) in order -- I'm not responsible for the overload in either of their schedules, and I am doing everything I can, not to upset hubs' willingness/ability to eat in the mornings. He is eating fewer than 1000 calories a day and I know he's lost more weight. That contradicts and makes risky almost all of the "treatments"; I need to do some research on his breathing/blood tests and check where he falls on CO2 and carbon monoxide. Yes, I'm having to teach myself how to read those things. I'm concerned about congestive heart failure - in conjunction with the cancer & COPD. He does have those symptoms after any level of exertion.

So, that list of 10 daily life activities? He manages 2-3 of them on his own right now. His mom was doing better than that, even the day of her terminal stroke.

I am regrouping, learning, trying to understand, trying to smother his distress in kindness (and O2), running errands, taking care of all the usual crap people gotta do... and my new car with all the electronic junk on it is giving me fits. Gotta add air to the back tire, just to get the warning to clear off the dash. It's only because the avg daily temp has dropped 10 degrees this week.

I still need time to spew everything outta my head; and time to work without "thinking" at all... but today is recovery day for both of us right now.

lighter:
sKeP:

So glad to read you're enjoying a down day.  They're so nice..... such a relief.

About the food...... if M is drinking shakes, and you haven't added protein powder and all things you can think of that M might enjoy, maybe you can find the brands he can tolerate well?  I like certain brands and hate others, so maybe you can get some samples to try out and see.

I know juicing is big where I'm at, and we can get them at the Earthfare grocery store at a good price.  I like the ones with celery base, not cucumber, and the blue green algae.... kale are good.  Throw some into the peach smoothies and you might have something M will drink happily.... or not.  I know how difficult it is.... how frustrating. 

If you can get the juice into him, a bit of flax seed, and some zeolites,  to remove toxins, might be helpful too.  The zeolites are volcanic ash that bind to toxins in the system, and move them out.  Best on empty stomach, but I use it with straight up juice and water.  My mom really liked hot peppers in hers.

Turmeric is pretty awesome.... really helps with inflammation, IME.  Good in the juice, and I like the color.

The weight loss is a problem. 

It's hard not to throw things into the mix that might actually ruin shakes, juices and smoothies for M,  so it's ok to just let them be what they are if it looks like M is drinking less for all your hard work.  Step back, and just let it be a regular frosty or plain ice cream shake for a bit, then maybe try another brand of protein powder again when he's feeling better.

I wonder how he feels about soups?  It's the right time of year for them, and I can think of all kinds blended into lovely comforting potions of health.  I'd be fixated on the food aspect pretty hard too.

I found some of the eating for your blood type stuff to be helpful, if you haven't looked at that.

Whole organic fruit (peach) popsicles might be good to add to the mix?

Having different things to offer, that don't create more trauma, helped me to stay level.  Even if the answer was NO, at least I could offer several things that WOULD work if Mom was going to eat.  She really loved Thai coconut soup so we cooked batches and froze in single servings, along with anything else she tolerated well or asked for.  Basil lemonade as green as green could be was cool and refreshing.... stevia so blood sugar didn't get out of whack, and good frozen too.   She loved chicken tortilla soup cooked once weekly at one of her favorite restaurants.


We organized freezer, and made a menu my sf could offer to my mom to make their lives easier.  She pointed, and he had lots of choices easily accessed to cut down on food trauma until we go there to cook fresh again. 

If bananas foster is something that appeals, make it and blend it into a shake maybe.... who wold taste a little protein powder with that lovely mix?

::sending strength::

Lighter


 

sKePTiKal:
Thanks, Lighter.

Every time I think I have a solution for a problem, something else pops up. Now, swallowing is an issue. He's choking on small things, like a single ibuprofen. He has a mega-narcotic pill for pain, which I'm not at all sure why it was even prescribed since Mr. "I'm Fine" never complained of pain in a BIG way; just an irritating result from the biopsies. So last night, when he was clearly having issues with the 2 ribs involved with the lung tumor, I offered up what he normally takes for a headache or whatever. He could barely get that and his singulaire down without hurling. So, I believe him when he says he simply can't swallow anything other than liquids. He is not at all interested in that narcotic; at least right now. And I'm still working on getting him to talk to me.

The night sweats are back again too. It was just one shirt 2 nights ago; 2 shirts last night -- after resting most of the day. That is one sign of congestive heart failure, that I've learned about.

I kinda feel like I'm playing whack-a-mole with issues. And according to all my research and what we've been told by various support people - this swallowing issue should've been a minor and quickly resolving problem from the bronchoscopy. That one gets to be my "follow up" appt star/priority next week. I think he's lost almost another 10 lbs. (So have I; but I had it to lose and it's because I've been a LOT more physically active.)

He's been ruminating a lot. The 4-Day Torture Tests/Blur of being in the hospital with people doing things to him, but not taking the time to really talk to him and explain what was going on and why... keeps running through his head. Everyone's worried about depression, but as I explained to him - some depression is going to be perfectly normal. His whole life changed pretty much overnight with very little warning. I'm a tad peeved that the medical vampires gave him back to me in a LOT worse shape than he was, when we tried to get some help. The difference is night and day. It's like they broke him; his spirit.

He did order himself a nutribullet, cookbooks, and a stack of books on COPD and Cancer. He didn't hear me, at all, about the COPD being the #1 order of business to deal with... until he read a little. Now that that is sinking in, he's feeling like he "should" have gone to the doc sooner; that he would've been better able to withstand this onslaught of tests; that he waited too long. He's doing the thing his mom did: I don't want to be such a burden on you... sigh. And because when I sit with him, I can't just sit around, I always have the ipad to read, search, look things up, etc... but he feels he can't talk to me because there have been times I was reading, the tv was blaring and he tried to me - all at the same time - and my brain locked up because I can't split my attention that many times.

So, I put it in simple, clear direct terms that no matter what I was doing, he took precedence over everything else. He's had a pattern of trying to take ownership/responsiblity for my feelings, too -- and that's an obstacle right now. I need to get him around to a new focus of planning. Reviewing what's in his health directive, see if that's changed any - any specifics changed and make those notes. He needs to understand that denying his body calories isn't going to HELP COPD - his lungs need energy to function. At this point, I'm worried that the "cahexia" - wasting body mass/muscle loss - is shifting into anorexia.

Been reading hospice literature on different kinds of depression/grief of the terminally ill. Recognized that I'm pretty much involved with anticipatory grief... oh BOY, another round on the grief wheel (there CAN'T be that much left I haven't already "gotten")... but a lot of hubs' is involved with loss of control over his body (for now) and the slow dawning realization that his life isn't going to "go back" to what it was. And yes, I'm going to grade all the docs a big fat F, for not making the effort to try to talk to hubs about what he is going through and make helpful suggestions about coping and tell him the truth: we can't make you "good as new", and in the process of saving your life - you're going to endure things you never imagined. At LEAST find a patient education representative or something; the health insurance company is doing better than the docs with their "care management RN" program. Sometimes, it's easier to talk to a stranger... and the phone calls usually give me about an hour "off" duty.

He was so exhausted Thursday, that he fell asleep on the PET scan table. The nice technician said he'd give him 15 minutes, then wake him. Simple human things; people talking to him and letting him talk - even small talk are what he needs. Not waiting an hour in a claustrophobic exam room and then summarily yelled that we already knew stuff, that we had questions about. I'm still angry at him for doing that. People don't go to the doctor until it's too late, because the level of fear about "knowing" is greater than the level of discomfort (and nagging wife) already experienced. I make it a point to read something that I'm looking at to him, to engage him (when he's awake) every 1/2 hr or so for a few minutes at a time. I'm trying to get my "special" brand of dark, sick humor going too... but it's tough; he's still in his shell. So, I'm being patient and gentle for the time being. Trying to find anything that "feels good" and to keep that going when he's awake, too.

Underneath, he's angry about being dependent on me. I see that one coming, because I won't let him drive. Not when he drops off to sleep in the middle of a sentence. While on O2. Not when he's so weak, fuzzy-headed, or running a fever (from the cancer and heart related stuff... exacerbated by the COPD and Cancer... sigh).

Maybe I just try to fit things in my favorite "cycle theory" - but this sure looks like a negative feedback loop. And I s'pose it'll take twice as much energy to reverse that cycle and get it to be the default "setting"...

debkor:
PR

I'm sorry to hear about your hubs. Everything you have written I say..YES.. I hear you!!  My friend I spoke of on here often was diagnosed with stage 3 triple negative breast cancer 6 months ago. It's a journey. It's all kinds of fears and emotions.

The anger they feel about being dependent? Yes!  Although my friend never wanted cancer she had control and choice over her treatment and the fight of her life. It was the after effects of chemo. The weakness and the pain of needing help just to step out of the bath tub she needed help.Things like that.

She was tired of pokes and test and Dr's and just about feeling better to start her next round of chemo. Ugh!  I was the Eat, You Must Eat!  I think I know just about every smoothie in the world now.

When she was hungry the sores in her mouth (side effect) made it painful. And I did the ..well what about this smoothie?  She hated smoothies.  So she did the best she could. Although she wouldn't of touched my smoothie.

I think mostly what she needed was for me to stay me. If she needed help she would ask..so while in Walmart one night and her sporting a lovely blond wig looking great and me telling her so, she whipped it off, how about now? Her friend that was with her was horrified and we all laughed up a storm, while she was swinging her wig in her hands as shoppers, shopped. Then she plopped it back on her head and her bangs were side ways. I did a GAWD..and went into some hair fashion frenzy as..shoppers Shopped, lol. That's what we do..we laugh!!  Then I just all out dyed my under hair..hot pink in support. Yup 59 years old with pink hair and didn't care.

Don't forget in these hard times PR to be you and to be you with hubby!!
It's okay PR to feel whatever you feel. If you want to go drink a bottle of wine and howl at the moon. Do it.

Lots of love and pray in these difficult times
 Oh and it looks like my friend is winning the battle!!

lighter:
PR:

I don't know about your hubs, but.... what we called the pot pills gave my mom her sense of humor back.  They made her feel and act normal when she wasn't OK during her journey. 

They also helped her with appetite, which made us all feel a lot better. 

About things/problems/symptoms popping up, whack a mole style. 

Yes. 

So true.

It seemed like solving one problem created 2 more, and so on.   

About the congestive heart failure.....
My elderly friend lived with congestive heart failure for years.  She slept sitting up, was on meds, and ate virtually zero salt, but she hung in there a very long time.  Over 10 years, and she ate very little food bc of crones disease... everything she ate hurt her.  I'm trying to make you feel better.  I hope I'm not making you feel worse.  She lived for years weighing between 70 and 80 pounds..... and she still had plenty of energy near her death in her 80's.   

Final analysis.... there aren't any good answers, so we choose the one that does the least amount of harm.  To us, and to our loved one. 

Maybe if I'd stepped back, and let B ask me for help.... he would have taken more pain medication?  He was on a very low dose, btw.  Not much at all.  I don't know why he fought it so hard, but maybe if I'd have given him the space to feel responsible for it.... he would have? 

The truth is.... moods shift, and we can't know what our loved ones are going to need or want all the time.  We're going to miss the mark even if we're perfectly in tune with them, nc sometimes our being in tune bothers them.  Everything around us is out of whack.... things can't be OK, bc they aren't.

If I had to do it again, I would have kept the house more cheery for us all.... for visitors.  It was dreadful.  I wasn't prepared for it, and just doing an hour or more of housekeeping in that big house at the end of every day was taxing for me with the pain med schedule, and lack of sleep.  I was drained, and self care rituals went out the window.  I can't remember anything about taking care of myself... but I can tell you about all of B's in that 5 month period.  I know I bathed, of course, but I wasn't really present in my body is the point.  I wasn't connected to my needs, and that's when I ruined my knee/tore my ACL, bc I wasn't stretching before work outs.  My body was suffering from sleep deprivation and lack of self care, and nutrition too.

I wish I'd researched pain meds and not depended on whatever the doc told us we needed, which didn't work at all.  Time released meds would have benefited EVERYONE by a mile, IMO for B. Oral liquid meds for my mother, I think, and then the patches and calming creams.   There isn't enough information out there, for sure, but the pot pills were worth their weight in gold for mum.  Ask.

Take care of yourself, Amber.  Let hubs ask for your help if you can... if he can.  It might restore some balance, maybe not, but..... I can tell you that not caring for myself, and being hyper alert to BN's every breath didn't work all that well either.

(((Amber and M)))

You're  both in my prayers,
Lighter









 

 

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