Voicelessness and Emotional Survival Message Board
Voicelessness and Emotional Survival => Voicelessness and Emotional Survival Message Board => Topic started by: sKePTiKal on September 28, 2015, 08:21:53 AM
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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.
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Hi :)
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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.
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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
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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.
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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))))
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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?
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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
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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.
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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
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:) 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.
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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.
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((((((((((((((((((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
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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
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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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Whatever you can do to be Amber, rather than Superwife, will be good for both
your hearts, imo.
love to you
Hops
^^Sounds wise
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LOL.... superwife... LOL LOL ROTFL
Yeah, maybe I used to try really hard to do that. And there are still echoes. And I can laugh about the disastrous results (no animals or pots & pans were injured in those attempts) these days and just forget about it. I have a crew of guys to handle the outdoor stuff; trustworthy - they are retired cops or fire chiefs who started service businesses. Long time locals. My pool girl this year, asked if I needed housecleaning help... and I can reach her through the pool company; owner is my neighbor.
I guess, part of my panic here... is that hubs is always the first person I looked to when I needed a hug or help to think something through... or to actually do, what I only thought about doing for myself, because I didn't feel like I deserved it. And I don't WANT to make him feel guilty; I want him to want to get well and live. To the point, where I googled "will to live"... and after looking at the schlock on the first page of results, realize I'd better look somewhere else.
Penny: yes, I need the emotional support of people outside this little pod of two peas. Just normal human stuff - hear about what's going on in their lives, etc. Their frustrations, lives etc. One board of online friends was chatting last night, and 3 of us were talking about caregiving, our "patients" and relationships, etc. That may be one source. In real life, Hol & Matt are really good and have the connectedness ESP to know when to show up. FUNNY: the first night, after I'd come home I called Hol back and we were talking about what needed to be done at the cabin Mike & I just bought. for the winter. She & Matt do handyman stuff when they're making art... so I mentioned about how I'd left zud sprinkled in the toilets to try to counter the staining effect of the iron in the water. Holly remembers that domestic issue from living with me and Ex#2, before she left to start her own life. Told her I had visions of the cleanser completely dissolving the porcelain and the whole toilet... making it disappear. She had exactly the same neurotic vision when I mentioned cleaning that out. And we found it hysterically funny... Matt didn't get it at all. In the greater scheme of things I'm dealing with, who cares about a damn toilet?? But, the programming is there and resists being manually over-ridden.
Another funny, but with an edge to it: We were waiting on the new primary care doc yesterday in his office and my phone rang; first of all, most people just text me... and I saw the area code was MI... I always answer in case it's a business-related question. NOPE, it was my MOTHER - wanting to know if the other D in SC was alright with the flooding. Two months, I haven't heard from her -- and she picks that moment. Asked her if I could call her back... sigh. I haven't yet. She wanted complete details of why we were there and what's wrong with Mike... and ya know what? Somewhere in there, I MATTER TOO DAMN IT.
As to my struggles with bureaucracy, a few years back we did all the will & estate stuff. Yes, I am hubs' POA and Health POA. These doctors -- and their ministrations -- took place on an emergency basis and there was no time (and I was not present) to carefully check those boxes. This week, we are doing all the office visits and rectifying that. (I hear ya, TT -- yes, they are the same people. I make the distinction though between traditional liberals, who are really nice people and whatever term I've made up this week, for those who are trying to break what was working, and reinvent the wheel on the basis of a theory that square ones will save the planet.)
I slept in this morning. As in 10 hours of sleep, slept in. My brain needs this kind of downtime every few days right now. I don't worry about it. I'm also up and more active than I've been in awhile, too. Not over-doing it; little bites. Hubs got off the couch, went out to the kitchen and fixed himself some instant breakfast and grabbed a cup of cereal too. Dr. Zhou said yesterday that he should put any and all food regardless of nutrition into his mouth and swallow -- no matter how it tastes -- AND start getting up and moving around. M has lost 20 lbs in the last month - EVEN while not smoking for the last 2 weeks. He didn't really have it to lose in the first place. When he tried to change clothes yesterday, I think he realized that if he can't even do that without assistance - or get to the bathroom in time (it sounds like he's losing the sensation connection to the brain-prompt: "I need to go to the bathroom", before he REALLY needs to go) well then, it's fish or cut bait time. When I told him, I'm going to start pushing him on certain things... he agreed to it. I'll make sure he meant it before following through on it.
With Michael, it's always been the journey that's important - not the destination. (And he really shoulda trademarked that... since he came up with so long ago...)
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Jeez. I'm a liberal.
Anyway PR, I hear you. It's hard hard hard to have to stay so focused on his medical and other needs when inside you is the scream, but I need YOU not to be sick, not to leave me.
I'm so very sorry. It's like you can't tend to your own impending losses while you're keeping a finger in the dike. Exhausting in so many profound ways.
You're going to be okay. One day and one decision and one event at a time.
I'm really glad you have so many people in your life who care and who are there for you. And you've really done so many wise things in preparation. GOOD for you for getting the medical POA etc taken care of. That should help, I hope.
(I stood in a silent candle-lighting line at church Sunday and the man in front asked me how I was doing. I said okay--it was my D's bday which is kind of hard, but I'd done an altar flower display to find some joy in it, and it did help). So I asked him the same and he said, "Not good. My wife is dying," and the man in front of him and I just kind of held on to him. Later I handed him a card with my numbers and a note: "I can lend an ear. Any time.")
We need people to lend an ear. Every one of us has these times and the long lonely walks. What a difference it might make when someone doesn't turn away.
love,
Hops
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Oh Amber......
so frustrating not to have access to information for your dh M.
My mom put all her children on her list to speak to doctors, and it helped everyone with everything, IME.
We could phone up with questions and talk to nurses about test results and have conference calls with the doc, or just have him answer questions as they came up. Mom could more eaasily remain focused on being positive.... not that she always could, but she was amazing in her ability to persevere and crack on.
I think your M's motto....." it's about the journey," is very spot on. The choice to live every day we have left, or die a bit every day, is real, IME..... for everyone. It's very acute when serious illness is involved, IME.
We ask our loved ones what they want to do.... what do they want for that day? That meal? Treatment? Help making peace? Help pretending all is well?
My sweet B, in the end of his battle with colon cancer with mets to the liver, wished he'd spent his last months floating on a sail boat drinking margaritas, and I wish he had too....
now. (My mom was asking for chemo up to the end, when she was too ill to endure it, btw..... she did well with it, and B didn't.)
At the time I wanted him to live so I pushed every intervention, and so did his children........ I had no perspective or experience to help me understand what was happening to all of us. I didn't ask him what he wanted, and I'm not sure I could have heard the answer he gave in the end..... not at that time.
In the end, I think we end up wishing we'd given them what they truly wanted, and sometimes they don't know, and/or we can't hear them, IME.
The food was a trauma for us too. Chemo changes taste buds, and stomach problems and pressure from fluid in the stomach cavity couldn't be drained easily then, like it could with my mother. I think that extended her health and life. It's a good thing, if you need to think about that at some point.
I also found that giving fluids helped my mom stay perky, and alert..... she was herself, and present in the moment. If she didn't get fluids when she needed them, it was... trauma. More for us, but she had so much to do before she was done, and the fluids kept her life as normal as was possible when she was overcoming a set back, like c diff, or just struggling.... in the end for sure it gave her more time, and we had to fight for that time, bc the first Hospice wasn't a good service. Their choices weren't ours, and so we found another Hospice, but Lord...... very hard to always know exactly what to do. I think the combination of fluids, along with draining stomach fluids, helped her body handle the toxins.
(((((((Amber and family)))))))))
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LOL Toilet zuds.
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Oh Hopsy - you know I love you dearly. Politics does NOT touch and color everything about life for me, and I'm resisting the current "fashion" to make it so. It's the "I know best for you & you & you - and one size fits all - and you will do this because I'm smarter than all the rest of you" political, from the top down, attitude - instead of the freedom to live & let live and love each other BECAUSE we're different that gets my hackles up. Sort of Dr. King's comments about judging the character, not the appearance of a person. I grew up hoping that small gem of wisdom would help people help each other -- instead of tear them down. (And it still DOES work, IMO.)
LOL... I did end up talking to my mother. For the first time ever, I was chided for not calling her back - but it was late when we got home, so I had a built in excuse. She wasn't really interested in how I was doing - or Michael either really; just nosy... and so I changed the subject and asked her the question I've been rolling around in my head "What is the will to live and where does it come from?" She had to think a minute... hemmed & hawed... then finally said she lived to irritate all the people she hated. I heard, yet again, the switch flip from Dr. Jekyll to Mr. Hyde in her voice, too. WOW, is all I can think about that. What a waste. I sure wouldn't like myself much if that was my motivation... but to each his/her own.
Hubs seems to be turning a page on the lethargy and listlessness. Getting more engaged; eating whether he's hungry or if it tastes right or not -- but still not very much. There are throat issues going on, that after 2 weeks, I don't believe should still be chalked up to not smoking... or the results of the tube down his throat for the exploratory. Something else happening that we need to insist is checked out tomorrow. Swallowing is kinda essential to eating. Instead of jumping up and getting him a fresh drink, or snack - I'm insisting he does it to keep his circulation moving... to help him keep the balance and strength in his back & legs that he retains.
And I'm dreaming... sheesh! First, I dreamt I got a piece of mail for my dad's trust; it's been closed, done & over with for a couple of years. Then, I dreamed I was trying to run & hide from someone trying to shoot me... I would even change seats every so often in a restaurant - and my doing so, meant that someone else was shot... because there really WAS someone chasing me to kill me, for some reason. Trying to shake that one off, maybe another cup of coffee...
Thanks for your experiences guys. I am AFRAID of doing the walk alone... but I have done this before, and I am more competent at it than I truly believe. I truly believe that I am "too emotional", or "not consistent enough", or not able to set aside my emotions at the time I need to be totally rational... because that's what I've been told about myself; even though there is plenty of historical evidence to the contrary... and a whole group of people who believe something different about me. That's something I'm still trying to "let go"... because my brain says: it's not true... even tho' my emotions have been conditioned/programmed - to feel that way. Ain't perfect; but I've always been "good enough".
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sKeP:
I'm not glad you've done this dance before, but it's helpful, IME.
As tt said.... it would be good to see around corners in these situations. I think experience gives us some ability to at least know some of the corners we're about to round, and that can mean a lot.
Amber, Your last paragraph resonated deeply with me.
The spaces between actions is rendered more sad, IME. That space..... with so many chattering opinions around us, isn't comfortable. It's lonely. More so than it should be.
The Amazon bonfire is stacked, and waiting for your signal.
::sending prayers for M's restored immune system and healing::
Lighter
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Hell, yeah, you're good enough.
(((((((((((((((((((((PR))))))))))))))))))))))
love
Hops
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What Hops said, and.....
you're not alone. We'll be here (((PR))).
Lighter
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Thanks, ladies.
It's..... interesting here. He is beginning to come "back" from his ruminations. And without "so many words", I know that we're both afraid of the same thing - going through this alone. So, well... we're not. He's going to have to lean on me and I'm gonna have to be there. And vice versa. His humor - as dark, sarcastic, and sick as mine - is back. And it's all starting to make sense to him - he doesn't have to pretend "it's only a flesh wound" - to protect me from the truth; I already know. And I haven't run shrieking away or looked to trade him in on a new model.
Only short time this morning, we have to be ready to hit the road in a couple of hours. There will plenty updates later. Our new friends here are rallying too. And his family as well. I'll just blurt this and explain later - but his D and son in law have separated and are going through a divorce. Both of them called yesterday, because SIL is a really good chap - just your average all-american country boy who lives to hunt and is an excellent father and the D was never able to explain what was wrong or why it came to this for her and I didn't feel I had standing to pin her down. So both are still welcome here; on their own or with the grandbabies. M talked to TJ a long time about our cabin in the Nat'l Forest and being able to sight deer from the front porch. I really think it helps him, talking to the kids. Yesterday was the first day his voice had improved, too.
Y'all know I'll be back later to blab for hours, after the "news" -- which I hope is detailed and explicit. Whatever kind it is.
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That your h's humor returned is BIG.... such a relief.
I understand the urge to protect loved ones, and maybe honestly not know what to do instead.
(((((Amber)))))
I'm glad you're in a better space.
::nodding::
hhaw
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Car rides in fear of or in response to scary news are very hard.
I hope y'all hold hands on the way home.
But drive carefully because you have a bunch of Amazons in the back seat (plus a Mud creature probably) and we get very noisy. I believe we are singing at the moment, top volume: https://www.youtube.com/watch?v=ybXrrTX3LuI (https://www.youtube.com/watch?v=ybXrrTX3LuI)
It was very nice of you to install a disco light to enhance our performance...
One mile at a time.....(((((((((((((Amber))))))))))))))))
xo
Hops
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Reading it.
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LOL... so THAT's what that noise was... :shock:
Well yesterday was the other side of the roller coaster hill. Again. I don't get sea sick, but if I did, I'd be hurling. First, I got chewed out and told I knew what I said I didn't know, by the defensively abrasive oncologist. But I do think he heard me, that most of my information came directly from M, who was extremely out of it... and that I had not SEEN the hospital notes and that the discharge papers contained extremely little that made any sense to me -- including what appts to make, which ones WERE MADE, what else needed to be scheduled... etc. Apparently there is a communication breakdown between the specialists. I am told this and guarding territory are not uncommon. The oncologist is a bully; but direct. I didn't back down from him and kept asking for more specific information - so I could figure out what I didn't KNOW that I didn't know. I think we came to a truce at the end of that first encounter. And unlike him, I'm more than able to admit when I'm wrong.
The pulmonologist was a bit easier - but had to be brought around to the fact that all this stuff is brand new to us and to bear with me, as I processed information slower than he could provide it and please - repeat that again? The experience for me, is a flash flood of data, information, terms and definitions -- a lot of words to my ears -- with very little meaning attached to them. I literally had to leave the building at one point yesterday, because the claustrophobia panic was starting to set in and it was ME that wasn't able to breathe. Noise, lights, motion and all those words thrown at me... I did OK, though. I did realize that if I didn't do something to give myself a break from all that, I was going to be the one passed out on the floor.
Hubs failed his breathing function test and could not walk 6 minutes, even with 3 liters of oxygen. He had started turning blue and his heart rate was out the roof. Today, someone's calling to schedule a drop off of oxygen and a lesson in safety & use. I've been talking to my retired GP doc friend... and have confused the crap out of him because I was so tired and confused myself, that stuff just came out in a jumble. He says I never told him about the COPD - maybe I didn't; I can't remember.
From my research, hubs has stage 4 COPD. Unlike cancer, that's not a death is imminent category. It just means that without a lot of breathing assistance, the patient can't go about life functions much less get any exercise. The impression I have now - since yesterday - is that none of the docs are all that concerned about the cancer at the moment. It's not growing - so the focus is on the COPD. He'll have 2 more tests - a brain mri, to check for mestastes (sp?) and a full body PET scan. The pulmonologist said surgery is completely off the table at this point. And without saying as much, I got the impression that this second breathing function test was worse than the first, when hubs was in pain the day after the lung biopsy. M said it felt better to him - but he's been on the inhalers for 10 days and isn't in as much pain anymore.
I was sorting out papers last night and looked at the discharge notes again. DING... hubs had said that the docs "were worried" about secondary pneumonia and so they were pumping him full of antibiotics. That wasn't quite accurate, although I accepted it at the time. The fact is, his fever was probably attributable to a case of pneumonia that they were TREATING. The doc friend says be wary of the 2 lbs hubs has gained in 2 days... it could be water weight, and could be onset of congestive heart failure - especially with the exertion of the 3 hours drive, walking through parking lots & buildings... and the tests. DUH; I did not think about that. A walk of any distance feels great to my old butt & hips & head... but I had to wait for hubs to catch up.
NO ONE except my doc friend is telling me "this is where you are" in this strange landscape. If not for that, I'd be burning up a lot more energy trying figure it out myself. M and I are starting to get to the planning stage of figuring things out here, too. We're going to have to make him more comfortable -- without isolating him. My R/L friend Debbie suggested a power recliner... and they sell them locally. Might make a run out this weekend to check them out.
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:( There is an issue with patients being overwhelmed and a disorganization and communication breakdown between the specialists. Its a real thing.
In the past I worked on a cancer screening program group and my manager was creating a system that basically gave cancer patients a binder and a "program" and a plan. Not all health facilities are quite that pro-active and organized though.
It's like you should be able to take everything and go to a nurse or back to a regular family doctor and just get some sort of de-briefing in simple terms and just tell them how you feel.
I had minor skin cancer and re-constructive surgery and even that was enough to freak me out (I'm a wimp). All of a sudden all this stuff is happening and it feels like one doesn't have a lot of control over it. Biopsies are invasive and all of a sudden they are just cutting out chunks of flesh. Its scary. Its foreign.
Somehow healthcare is a process though and at some point you just have to hope you are going to come out the other side of the system so that life can get back to normal again.
I wish I had something more helpful to say to you. A relative of mine was treated for cancer and due to they had great insurance they had their pick of any facility. They went out-of-state to get treatment and it made a big difference for them personally. Having docs that you trust and you feel are helping you is important it makes it a less stressful experience.
Anyhow. I am reading your posts.
:( I hope it gets better and that both of you are finding some kind of good distractions somehow.
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It's like you should be able to take everything and go to a nurse or back to a regular family doctor and just get some sort of de-briefing in simple terms and just tell them how you feel.
EXACTLY how I feel; what I feel is needed. The binder is actually a good idea. And a hi-lighter. Except for the PCP, none of the rest are all that good at this. And the fact that there is some behind the scenes, marking of territory and power struggles and major disagreements... ain't helping any.
There is one more puzzle piece: they assume that because I wasn't permananently attached to his side, that we must not be close. They assume that I'm much younger, a specimen of perfect health & endurance, and that while I understand quite a bit of the medical vocabulary -- many times, in conversation, there is an overwhelming emotional response from me that causes me to tune out what they are saying; for their words to be just "noise" sans meaning; for me to drift away into a "bigger picture" mental image of the impact of certain new information. They don't understand, that because hubs is the patient -- part of me is ALSO a patient; I just need different things.
Spot on, Garbanzo!!
Well, we have O2 available 24/7 at home now; and hubs will have portable bottles on Monday. It's a very big change and not quite comfortable for him to use it continuously. I'm not being an oxygen-nazi; we set the amount down a little for sleeping with the first night and he got 4-5 hrs of sleep in, before he had to turn it off. I think there's a little bit of macho-shame conflict going on with the stigma of the tubes & bottle for him. So I'm not pushing him to use it when gets up for a potty break or to visit the kitchen for a drink or snack. Just having it HERE and using it for an hour or two at a time, seems to be helping. His cough sounds have changed; less yucky and more clear. And I think this will help with his energy and being able to eat. In time. Not rushing anything.
Last night he said, he never wanted me to have to go through this, like this. My dr friend, is the one who pointed out to me, that he wasn't being stubborn about pretending there wasn't anything wrong; hubs was trying to protect me from the reality. I cried this morning, when hubs got up and made me coffee for the first time in 2 1/2 weeks. He was always up before the sun and this was his little thing he always did for me. I always leaned on him when I was crushed; like now. I been trying to tell him to lean on me now. LOL - but he really is stubborn and hard-headed. Has to be, to put up with me.
We celebrated our anniversary this year in the elevator down to pre-op for the exploratory surgery. He thought I'd be mad he didn't remember... LOL. At least he FINALLY agreed to get help that I couldn't give him. Silly boy. He was so scared about that procedure and anasthesia. Never had stitches, or broken anything, or was seriously ill before. He felt like he'd been dropped onto another planet and the evil aliens were studying him. Pretty apt description, actually.
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Reading.
:( Doctors are not really being evil though. They are trying to help in their evasive messed up way.
Having my morning cup of coffee.
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Agreed about docs. They wear masks and are desensitized but inside, still human and working in an inhuman system. They are your allies (with exceptions, but...).
PR hon....oh the daily enormity of it all. That's what I remember. When a loved one's life and health are in crisis, it's a daily enormity. Adrenalin pours all over the windshield. Rest feels like cheating. Colors fade or brighten.
Life itself compresses and glows. Fatigue finds new cells to occupy.
It's awful and beautiful at the same time.
love to you
Hops
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Amber:
I don't know if it's appropriate or possible, but maybe you could include your retired medical friend in some of the more important medical appointments?
I remember having to stop and put my head between my knees on my way to my father's hospital room at one point. Just the smell of the hospital made me light headed. It is like we're the patient too.... sort of, IME.
I still don't understand why M can't put you on a list of people to receive all information and discuss anything with medical professionals. It was so helpful for my sibs and I to access information, test results, and doctors when we needed to. My mom put us on a list, is how she explained it, and insisted we be given everything we asked for. The nurses were helpful, and forthcoming.
::sending strength:::
((((Amber and dh))))
Lighter
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reading it all
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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.
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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
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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"...
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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!!
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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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DEB!! You're still here!! I am amazed. Yes, we are like you & your friends. The docs and those with strict behavioral conditioning would be absolutely horrified at some of the things we say and do - to get through things with "us" intact. 8) I rather enjoy their shock, really. Told y'all I'm going to be the one wearing purple and saying the hell with it, as an old woman. I'm still rehersing for that role, however.
Yesterday's "enlightenment" about this chapter of the saga, was that the reason hubs' lips are chapped, his mouth always dry and had pain on swallowing was a lovely little side effect of the inhalers -- thrush; a yeast infection really. I went out to pharmacy with a list of OTC remedies that might help... and when I realized one was just for GERD, asked the pharmacist. There isn't anything available, without a Rx. So: bought some yogurt (no sugar)... a couple of avocados (chock full of good fat & green)... and called the pulmonologist's answering service to explain the issue and ask him to call in an Rx. That was around noon. Of course, I needed to stop and pump up a tire before I headed out. We've bought a number of tools since moving here, to simplify things like this - but every time I have an "urgent mission" it seems life is throwing out legos under my bare feet... every step of the way. I still have not heard back from this doc.
I shouldn't have to explain to this doc how urgently hubs needs to be able to eat, without pain or gasping for air. He's lost 6 more pounds since the appts last week, for a grand total of almost 30 lbs in about 6-8 weeks. He needs energy to be able to keep breathing. That puts him lower than my "target" weight and with the extra activity and forced postponing of or skipping meals because of driving to appts... I'm down 10 lbs. Had to buy smaller underwear. ;) Our choices this morning, are he can try to ignore the difficulty eating and choke on about everything I give him - including milkshakes & smoothies. Or I can try to find good coconut oil here, and get some more yogurt. Lemon water also seemed to reduce the stuff in his throat; I think I have a spare lemon juice in the pantry. Or we can spend Sunday in the Urgent Care to have them confirm, that yes - it's thrush - and write an Rx that I can fill, hopefully before the pharmacy closes today. Wed & Fri next week we travel again, for appts. And I MUST renew my drivers license and get the car we're driving inspected. Deadlines.
The oncologist was quite unmistakably clear. Right now, cancer isn't what they're worried about. It's the COPD, and how severe it is -- which wasn't truly understood by the pulmonologist, until hubs couldn't finish the 6 minute walk and was turning blue, with a heart rate of 147. There are no cures for COPD; and the best the docs have in the late stages is ameloriation of symptoms. So, hubs is on 24/7 oxygen - but he still refuses to wheel a tank with him to the bathroom (says he has to pee so badly, he can barely get there in time as it is; and when I suggested not waiting that long - he said he doesn't notice he has to, until it's that's bad; his sensory perception of his own physical needs is out of whack, maybe? Maybe that's why he's not really hungry, too?)
So, COPD in the late stages, in combination with this "cahexia" - or wasting syndrome - is really hard for docs to predict how long someone will live with a decent quality of life. Exacerbation - or breathing crises - come up unexpectedly. Not eating, of course, means the body doesn't have enough fuel to expand & contract the lungs. Hubs looks like a concentration camp prisoner; skin and bones.
Now, with the cancer - the mass in his lung isn't growing. Surgery would reduce his lung function even more; and then there are the complications of anasthesia with this stage of COPD. (There are tapes running in my head from the last few years of me saying: you just go do what you can comfortably do now... and tomorrow, do it again - but just one thing, or one 1/2 hr more; that makes you stronger and you can breathe easier, too; it builds up stamina. Hubs thought lifting weights or exercise machines would be the "magic pill"; but you sorta have to use them. Can't just look at them.) Cancer does produce enzymes that contribute to this extreme weight loss, sometimes - but it's not usually associated with lung cancer (in the literature, anyway; my observations are different).
With the extreme weight loss and that impact on all the organs - radiation and chemo don't make sense either. He was supposed to come home & bulk up and eat like no tomorrow, with absolutely no limitations or restrictions on what he could eat -- as long as it had calories in it. So he wanted sugary stuff - which contributes to the yeast infection in his throat; duh - and here we are. It's a complex process with a lot of moving parts. The other thing that the thrush is doing, is making his voice hoarse and softer; maybe you'll recall his mom permanently lost her voice as a result of lung cancer involving the vocal cords. So talking is extremely difficult for him; and he is gasping air after every couple of words.
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OK, that's the layout of the situation. Brain mri was clear and probably won't have PET scan results till next week. But, I really don't expect too much more data to come from that. It's time to get real and talk about where we go from here.
I'm digging out his advance health directive and we're going to double check if his preferences from a few years ago are still the same, now. Maybe need the signed ones, which I think are at the bank. What he decides to do - and allows me to do to try to help him - may not be enough to fend off the inevitable. I'm swallowing that bit of reality now, because it's STILL going to be tough to hear it from some stranger later on. Even if the docs insist on making him try to undergo these treatments for cancer, he can STILL refuse. A miracle could happen and we could get the COPD to stabilize enough that he could put on 10 lbs. It just all depends so much on him and what he wants - and there are still things completely out of our control.
My brain hasn't enough room in it, to think about anything "AFTER"... whenever that might be. But I see that door too.
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It's not easy to deal with the details of health directives, etc but I think it's necessary. You have to be brave to look your loved on in the eye and have those discussions.
I'd begin by sharing my own preferences, and hope M simply stated what he wanted without my having to fire questions at him about it.
If he simply doesn't want to talk about those things, that's OK too. The old directive gives you instructions, and things like funeral arrangements will be up to the survivor and what makes them feel better. Sometimes I think that's the way it should be anyway.
I hope you guys are doing OK.
Lighter
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Oh, hon.
This sounds so powerfully to me like the right time to engage hospice. I so hope there is hospice in your area.
They send social workers who speak HUMAN, and caring nurses. It's a hard step to accept but what a massive relief once you start with them.
I know it requires docs to give a 6-month prognosis first, at least in my area.
Short of that, something jumped out at me--you described disassociating while listening to the overwhelming volume of medical info. And you're
frustrated with docs in general. Since you can't change them, do you think it would help to ask for an apt (for yourself) with a medical
social worker? You could tell that person about your tendency to disassociate under stress and ask him/her to break it all down for you. Or, if it doesn't make
you feel too vulnerable, you could even have a simple statement to tell docs themselves at the START of any appt, such as: With a huge amount of information
and under stress, I'm aware that I disassociate at moments and may miss something important. Will you break this down for me quite slowly please?
Much compassion to you, and to Hubs.
with love
Hops
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Well Hops, that problem was a couple weeks ago. And you know, it's not an "all bad" thing - because as the words are being streamed at me, I'm focusing on the bigger reality beyond the words - the stuff that doesn't go into words so well, but is the important stuff; the touchstones of how we understand and process and move through big changes in our lives. (At least I THINK it was a couple weeks ago; been at this a month now, and I know I'm dealing with some time distortion - it's minor and understandable; hubs still doesn't quite understand what I mean with the words - but I know he's experiencing it.) That stuff is better expressed in pictures for me; words don't always do it justice... and ideally, the pictures evoke emotional recognition and connection.
I've had some time to just sit with him and be here to satisfy the taste cravings he has for different things - like successive "last meal requests" - LOL. Only to see him not be able to swallow it. I've seen his eyes glass over and he not respond to me calling him for a little time - twice - and this last time, his vitals were off the chart. I almost didn't take him to the drs appt, because I didn't think he was gonna make it through the 3 hr commute; then I remembered our hospital would transport him up there anyway. But he did make it.
This doc - the oncologist - is OK. He's moody, I guess and wields his personal defense mechanisms freely, because of the nature of his work. He had an intern come talk to us, and as I had a chance to rattle off my list of "reports" - she mentioned that hubs would go through 6 weeks of radiation/low dose chemo - 5 days a week. First thing outta the old Twiggy mouth, was: I know they do these treatments in the Outer Banks. Is there ANY WAY, we could arrange for that closer to home, since I don't think adding the 3 hr commute would contribute to hubs' recovery or probability of surviving those treatments? And don't you know, the doc has a partner that practices down here? Well, butter my bum and call me a bisquit.
Hubs was horrified that I would even ask such a question; that it wasn't "nice" to question these guys - to ask for what you really need. The doc, to his credit, told hubs we're trying to keep him this side of the dirt - and when I asked doc to tell him to eat for me, too - he did. Guess the doc finally realized that a) I do my homework and don't need someone to lead me around this process by the hand... and b) we're on the same side. Being able to drive less than 1/2 hr to those treatments is HUGE relief, versus 90 minutes each way in city traffic. Plus it's not tourist season here.
The cancer is the LEAST of hubs' problems, btw. As big & scary as that is, it's no longer the certain death sentence it once was. COPD and the complications surrounding that are the bigger issue - the boundaries of the canvas, as it were - and it comes down to basically: BREATHING. We see that doc tomorrow and as I understand it - my list from yesterday SHOULD be addressed by this doc. This is the lethal stuff; the cancer isn't growing and while it's a big tumor, causing pain and other symptoms... the weight loss, the problems with balancing O2, CO2 and CO in the bloodstream, form a negative feedback loop, so that the sum total reality he's facing right now is that he needs to EAT, to have the energy to continue breathing, and to keep the pH balance and oxygen and energy going, to keep his heart going too. One of the inhalers - even though he's followed instructions - has produced a nasty case of thrush as a side effect. So no, hubs can't swallow food well; it DOES get stuck. He doesn't panic, because he can breathe around it.
Everyone suggests the protein shakes and making smoothies - and hubs even bought a nutribullet & cookbooks. Guess what? I make it, he proclaims it doesn't taste good - and it sits. I won't know for awhile; until the thrush clears up anyway, if there's more than this going on with his food "thing". Cahexia is the formal name for a physical condition like COPD/Cancer that causes a person to lose a lot of weight and muscle mass. And just a few ticks over on that measuring stick is anorexia. I'm watching; not going to presume, without evidence. But I know the loss of control of his life bothers him. I won't let him drive. He can barely close the car door, and he fades in/out of awareness. He AIN'T driving. This week, he's had bathroom issues too. Not really the first time, either...
explanation for that, is that when the body has an oxygen "crisis" - all the O2 floods to the brain, lungs & heart and the other organs don't get any; so those signals don't quite get to the brain, alerting to the need to go - or being able to hold it long enough to go. These are part of the signs (for caregivers; yes - I've already been reading hospice info) that the end is approaching. I need to get the pulmonologist's take on this, first... but then, hubs needs to decide if he really WANTS to go through with radiation/chemo - or try to - in light of how the COPD is making it difficult to exist, already. Radiation didn't seem to affect his Mom, one way or another. But she did go downhill rapidly, with the chemo treatment, afterwards. I don't think he understands yet, where he is, in the calendar book of "days of our lives"...
and from what I can deduce from the little he has said and his behavior... he doesn't want to know; at least subconsciously. He says different of course. The reality is, that treating the cancer might be like cosmetic surgery... when the real issue is that he's slowly starving and suffocating from the COPD. And while there are "amelioration" therapies that work well to maintain quality of life in the early stages; there isn't a lot (medically speaking) they can do at this late date. A lung resection would reduce his capacity to breathe even more (which is why cancer surgery is out). It's simply a matter of time and the docs can't reliably predict HOW MUCH time. Or what type of crisis to watch out (so it's watching out for all of them: pneumonia, flu, lung collapse, heart issues, blood chemistry... and of course muscle mass... to power those engines that sustain life).
Congestive Heart Failure tends to be a complication of COPD, and I'm already seeing pre-cursor signs of that. Yes, I'll be asking the doc down here about hospice. Respite care is what MY doctor has ordered - LOL - just for something else to obsess about. Hubs brother offered to come down this weekend and hubs' D, the next weekend. Hol is going to turn the heat on and look around for other "winter-ready" things to take care of at the cabin we bought, just before all this. (He was massively sick the night before I made the offer on the place at his prompting.) It's up in the mountains, and very out of the way. Not really primitive - but the phone company can't tell me when they might install service, and there is zero cell service there. Not taking hubs there till there is a phone.
TT: bless you, hon. I have offers of help coming out my ears... and I hardly know what I can delegate right now, myself. I think when Chris gets here this weekend, I'm going to try to work a half day or so outside. Nothing "hard"... just the normal clean up. You know what's really weird?? Even though I'm essentially cooking for myself now - I'm eating better. Hubs' aversion to vegetables of almost the whole category, meant I had to sneak them or cook them separately for me. I've gotten all the major "have tos" done... and next week, deal with the inspection of the jeep we're using to go "long distance" driving.
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Well.
Seems there is a dearth of information on psychological support & treatment of anorexia in terminally ill patients. I am seeing a little of this going on with hubs; while at the same time, being aware of "cahexia" - which is a wasting disease that is biological in nature and poorly understood. It seems to be fairly common in cancer & copd patients. The researchers know that even artificial feeding only seems to increase fat on the body - but not muscle mass. The enzymes from tumors are suspected as being agents in the progression of this "syndrome".
He is dreaming. Unusual for him to remember dreams. Was dreaming he was driving out of a parking garage, going round & round & down... when a wall disappeared and the car itself disappeared. He said last night, that he is still struggling with how FAST this has all happened; he has lost 30 lbs since the middle of August/Labor Day... and it's not stopping or stabilizing... and he still can't eat. The thrush is still bothering him even with nystatin topical and fluconazole internal.
He is too weak to shower; too dizzy without O2 to get up and walk the short distance to pee at night -- so last night he made a mess, tried to clean it up, kneeling down... he couldn't get back up. He's even losing strength in his thighs.
The drug the pulmonologist mentioned to help generate an appetite - is the one I've read in studies that only puts fat on.
Does anyone know if there are any emotional/psychology guides out there, beside Kubler-Ross for helping patients either choose to get well, or accept their transitions?
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Thanks TT, before hubs' brother left, he prayed over hubs. It helped the brother and me - but hubs isn't registering any reaction facially or expressing anything verbally. And I'm kind of caught in the caregiver "trap": trying to be cheerful, problem-solving the things that are getting harder, lovingly... and trying to engage hubs in an active conscious participation in his existence as it is right now, and finding a way for him to do more than "exist". I had an opportunity to let brother know that the last 2 "daily life activities" are on a downhill slide right now, too. Mostly because of loss of muscle mass, and a dependency/critical need for O2. Conquering the cancer itself, may not "cure" this.
So, on the one hand I'm trying to sell "hope" - which requires the appearance of belief in same (which leads to a bit of intentional denial). On the other hand, DAMN; he's gone downhill in a maserati bucket and he's truly not processing or adding up what all his experience right now, means. My doc friend put up with me last night, and showed me exactly where I am right now in those stages of grief. The dance I'm doing to get hubs to "come around" to where I can talk to him, at least... is keeping me in that bargaining stage. And with my natural avoidance of grief and anger, together... well it literally feels like I'm "wrapped too tight" and the internal pressure builds & builds & builds... until it all bursts out. Hubs and I; our relationship is grounded at the Twiggy level. He had as much to do with helping me resolve that old mess, as the therapist did. That's where we actually "played" like two kids.
As much as grief has been a constant companion, it seems like, in my life -- this is different. It's like losing Twiggy; when I had to "put her in the box" for "later". For want of a better description. Or half my brain. The intensity is like ice-cold steel that burns with the heat of the sun. I probably shouldn't have wished to know what the exact point, on an atomic level, feels like between yin and yang. So, when he needs my help and I'm in one these waves, it's hard. I'm afraid he'll want to feel responsible for my tears. And I keep chanting, "it's not your fault"... to no avail. He does what he does anyway. And it's never going to be "ok" that he goes away; even when I get used to it. Even though I am already trying to keep my monkey-mind busy with plans, and lists, and decisions for dealing expeditiously with that transition of when he's really gone. Hell, I'm still crying over losing the dog a couple years ago. From my side of the tears, it's like there's no one there cheering me on to wail, and kick things and "get it all out". And people are just so uncomfortable with leaky eyes and snotty noses and such kind of emotional displays. Puritans. Stoics.
And the hardest thing to control about my "instinct" right now, is projecting on to hubs my own approach to death. My wish to investigate, eye-witness with maximum sensory input, every excruciating detail of the process and to reflect on it, in an attempt to understand... the mystery. I catch it a lot, but not always. (Not that he wouldn't lob it right back me, mind you...) He is the other end of the spectrum, as far as I can observe. Talking about waking up and not knowing if he's really awake. His dreams. And how slowly the realization is percolating in him, that there is no getting "better" from this. As quick as he is, with numbers (still)... this emotional stuff for him is just all fuzzy. Primal. Doesn't really translate into words. But it did translate into a bunny hat. (Remember, when I was dealing with my wayward D?)
I am saving the bunny hat for later.
Maybe I'm making an assumption that he doesn't "know" what's really happening to him. Maybe he just doesn't want - or need - to talk about it like (ahem, "pot calling...") some of us do. Holly and I can go on for days, analyzing and talking about something as small as an ant trying to drag a bigger bug off to share for dinner. And we do until people start to walk away in disgust at our neurotically obsessive curiosity and fascination with a thing that, in the scope of things, really doesn't matter.
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Hi PR,
I asked some colleagues whether they could recommend any other good books on grieving beyond the Kubler-Ross, but no one could come up with one. If I hear of another, I’ll let you know. Thinking of you,
Richard
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Thank you, Dr. G!
I'm starting to notice some neuro issues; minor right now - I had to check twice that I was seeing what I thought I was seeing - and then he said last night that when I wake him, it takes him a long time to decide which world he's in... which one he really is living in. He's seeing himself as 2 people, too: the one guy with lung cancer and the other with COPD... which was sort of odd. I expected him to say, the "me with a body" and the "me that is, without a body". I told him so. Not sure what he's puzzling out there, but at least he stopped kicking himself for waiting so long to find out what was wrong.
I may have mentioned, a time or two ( :D ) that he doesn't like me to go off and do things without him and the heartburn that causes me, since there is always a list of things to do. It came up when I started going to tai chi, 2 nights a week. And the "poor me" face he put on about me doing things for myself that didn't involve him... even not eating until I got home. This has escalated into, where I'm bustling around or sitting in the same room with him - if I am not directly engaging him - he feels as though he can't approach me, speak to me, ask for anything. Even after being told directly that he is my #1 priority right now - no matter what it is. If I work outside or downstairs, I'm limiting that time to an hour or two -- but then I'm coming back to the kinda guilt trip of "I missed you", "I was lonely".
As if he doesn't exist outside of me. Outside of the context of that relationship.
I never could find a way to explain to him, adequately - that it was OK for him to have friends I don't hang out with, or interests he pursued without me. In fact, he seemed to react to that idea like it was a threat to him.
It seems like some of this is at work in what he's trying to process right now. I'm just fumbling around trying to understand what is in his head, that he's not trying - at all - to follow the instructions and recommendations of the docs. Just after being told to drink 3 bottles of water a day, and more at night, to keep from dehydrating (which he was doing, pretty much)... he cut that down to 1 bottle. After being told that protein shakes were essential to keep calories going in, to prevent going past the tipping point of weight loss - he sat there in front of me and lied about being willing to drink ensure or boost; when I contradicted that statement - his excuse was I bought the wrong kind and it didn't taste good.
His brother made an excellent broccoli and cheese soup, full of creamy base and pureed. About the consistency of the chocolate instant breakfast he does like. He took a couple spoonfuls and was "done". This is why I think there's a strong subconscious thing going on -- it's not like him to say one thing and do another so completely opposite. Or something bio-neuro, as a result of the combination of everything.
It's been a struggle to get him to take the nystatin for thrush, on time. Instead of 4x a day, we seem to only manage 3 - plus a fluconazole. It did look like it had begun to clear up, then last night it looked like it was getting worse again. Hubs choked on his nighttime pill, trying to swallow - said it felt like it was stuck in his throat - but for some reason, he kept on drinking water. Like his auto-reflexes misfired. Timing and coordination was off.
Anyway, that's what I'm trying to sort out and since no one can give me an answer about what to watch for, or when to call the doc - I'm trying to figure that out myself. If the thrush is no better today, I may call anyway. That's >5 days of heavy treatment for it.
As for me, I've decided under the circumstances it's probably a carte blanche card to just go ahead and indulge my emotions as they come up. Then, get right back at whatever I'm trying to accomplish. I'm trying not to think too far ahead, but I am sorting out how I feel about some major changes, in what-if scenarios. I have a phone number for respite care... which is looking kind of attractive. Hubs' D will be here this weekend.
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Amber:
I want to echo gently what Hops said.....
it may be time to call Hospice, and get some help.
You can let hubs know that it doesn't mean you're giving up.... it means you need help right now. Hospice services can be called off if he starts eating... they WILL be called off if he starts eating, gaining weight and feeling better in fact. Maybe he'll be motivated to start eating more?
They can help you navigate the meds, baths, symptoms...... the right people can be deeply comforting, IME.
Lighter
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Ahhhh, (((((((((((((((((((((((Amber)))))))))))))))))))))))).
I think you spotted something that may be adding to your own suffering (secondary to your grief), and it makes perfect sense (we all see the world through our own glasses):
the hardest thing to control about my "instinct" right now, is projecting on to hubs my own approach to death. My wish to investigate, eye-witness with maximum sensory input, every excruciating detail of the process and to reflect on it, in an attempt to understand...
Everything you describe about his passivity or lack of rational/logical actions (if he did this, that would get better, etc...) could be due to brain involvement or other neuro issues. But it might equally be about his own nature becoming kind of dreamy at this point. He may hear perfectly well these reams of instructions and advice...but have begun to just let go. His body and brain might be telling him, well, we could Big Fight all this, which is misery and exhaustion, or we could....float.
He doesn't have to rationally acknowledge anything, to get where he's going. And maybe he senses how far along his process is, and disengaging as much as he can protects him from increased anxiety. I guess my point is, the knowledge seeking may and does comfort you. But it sounds as though he's really not much interested in all of that any more. My father was content to just be, wasting, with music he loved and kind touch. We just switched our focus from rescue to comfort.
You can be right and correct and accurate and rational...and he's maybe floating. Follow some instructions, blow off others, eat/don't eat...he just might be beyond really thinking all these things are that important.
I watched the wasting, too. That's so hard. The visual of the person you love reduced to bone and barely any flesh is primally wrenching. You can see how their bodies are consuming themselves.
My Dad, during his last weeks, was very peaceful. Hospice helped us all climb out of denial and frantically trying to fight off death. So all of a sudden, sad as I was, it turned out my only real job was to meet my Dad where he was, and stop trying to get him to come back to me. He was floating away and he needed to.
I'm so very sorry for the grief, anxiety, anticipating of loss, which must be devastatingly painful for you, Amber.
You ARE going to be okay. You are going to be okay. And, hardly least--you are doing a WONDERFUL job and should regret absolutely nothing.
I hope you can be kind to yourself and also float a little too. In the present moment.
The crises passed with my father when we stopped thinking of what he was going through as a crisis.
I know if I couldn't breathe I wouldn't want to linger. Eating if it hurt wouldn't be worth it. I'd probably be getting
around to (even if I didn't/couldn't verbalize it) accepting that my body was now on a journey something like
labor, and I was just a speck on that great natural wave. Eventually, acceptance does bring peace.
Much love and comfort,
Hops
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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 (http://www.amazon.com/The-Art-Dying-Persons-Facing/dp/0312167768)
love
Hops
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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.
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(((((((((((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
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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
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((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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Hi PR,
Just to let you know, I posted (in a new topic) an essay on grieving sent to me by one of my dear patients whose 27 year old son died suddenly, unexpectedly, and tragically. Not a book, but still this may resonate and be helpful…
http://www.voicelessness.com/disc3//index.php/topic,10377.0.html
Hugs,
Richard
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PS--I commented on the article Richard posted.
Hope you forgive me if I need forgiving.
You know the Hopalong mouth.
love...
Hops
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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
Yup Yup Yup. This is what the situation calls for Hops. And I'm having Twiggy-tantrum about having already done so much, I don't think there's anything else left to give... DEEEEEP breath..... rinse, repeat... until there is.
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How are you doing, PR?
Lighter
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Present too, PR. Helping Lighter make you soup.
Thinking several days means things might have moved forward.
You are going to be okay.
It's childbirth...at the other end. Mystery.
Much peace, peace
Hops
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PR - Much love and prayers.
tt
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The bonfire's burning, sKep....
we're here for you.
Light
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I haven't had time to update. We've come home from hospital (again) to absolutely nothing by mouth, tube feedings, a medi-port for chemo... and a month's time to get him strong enough for chemo. He's starting to normal his potty functions, but for now we're still changing him and the hospital bed, even through the night. His D, Autumn, has stayed. Hol was here, and is tag-teaming with her SO, the coming week.
I'm trying to hire in a night nurse so I can sleep, and even have a little downtime in the evening; a chance to pull the floaty parts of my brain together in the morning. First day home - I was first up, and I simply could NOT do what was needed. I'm learning.
New problem: dealing with all the people who want to help and who don't realize how much more work they make - that our "schedule" is his needs, no ifs ands or buts... and that it's all undignified, they may not be able to stomach some of the things we have to do for him, and he still doesn't have much voice, to "visit" with people. It's quite the shock for people to see how much weight he's lost, there's the O2 cannula and constant hum, there are emotional moments when we're trying to understand what he wants (and sometimes having to tell him no - he can't have a drink because he can't swallow correctly and we want to make sure he doesn't aspirate the liquid into his lungs)... and on & on.
Poor Holly was all gung-ho to help with the pile of clutter that's being sorted & purged, a little at a time... and I had to just stop her because some of the stuff I'm going to "hand off" to others needs my eyes on it (paperwork for various things). I don't even have a plan yet to deal with that kind of thing - because every day is a new adventure and my routine is topsy-turvy or just gone. I'm trying to force the adjustment so we meet the goal of stopping the weight loss, getting him to participate in his own care/want to get better, and be eligible for chemo or radiation in the next month. And still remember to take care of myself.
I have a few odds & ends for her man to help with - but it's not like I can keep him occupied all day either. Then, there's eating... and lord, all the rest of his family are wanting to pray over him, remind him how many others have died of cancer, express their sorrow that this horrible, awful, terrible thing has happened to us. The new symptom mgmt doc says those people don't get invited back. She prescribed a low dose celexa to help him sleep, and Autumn & I tried a half a painkiller in his night feeding and he is starting to finally rest instead of keeping a nighttime vigil. We've been getting him dressed and up, sitting in a wheelchair for an hour or two at a time. Trying to restart the basic hygiene stuff in his head and give him back some dignity... and self-care.
A: he isn't strong enough to withstand the cancer treatment, right now. We have a month to see how strong he can get; a feeding plan; speech & occupational therapy. The doc laid down the law to him, and said I'm in control - and he can't tell me no when it's time for meds or food, or to get up and do a little for himself. I'm liking her; and she definitely "heard" me about those needs he had that weren't physical.
B: he isn't on death's doorstep, in a wicker basket -- YET. As desperate as the situation is, he needs to just "live" today... make jokes about what his life consists of, and find things to do to help convert his calorie intake to muscle. He doesn't get to use being a very sick boy, to get even with me, for being the "nasty nurse" that tried to make him take all the yucky medicine either. Dr. P is really good about the small, concrete steps that have the best chance of getting him strong enough to go through the treatments. And he's not allowed to withdraw into his shell from me, or Autumn, or anyone else either... slowly fading away... with this approach.
Much to do today, again. :D
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sKep:
Well, it sound like this doc is on board with strategies to carry out your plan to strengthen and motivate dear M.
You sound energized by having a plan, and concrete actions you can take, step by step.
I'm hoping and praying that M finds the strength to latch on to this good plan, and do what he can to strengthen and fortify himself, find some humor and gut his way back to healthier days. I think his participation will certainly strengthen you.
Your vision of how this should go is comforting to me, btw. I bet M feels the same, even if his current state makes it hard for him to appear more grateful.... surely he's comforted by your on top of things proactive activity?
Glad to hear the update. Wish I could help you marshal all those volunteers. Maybe a sign up sheet so folks could sign up for the things they're comfortable with?
Some will be good and chipper with hands on hygiene needs, and some will be better at laundry, and general tidying, running errands, replacing flowers, etc.
Sending you strength, courage, and enduring ability to find humor....
Light
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It has occurred to me that there is yet more of "Twiggy's Saga"... because in all that happened, she also suffered the loss of her Dad from her life. But mourning that loss was most definitely verboten around her mom.
Now is not the time to dig into that; but it's something I've been aware of for a couple of years.
I have a night nurse now. Means I can sleep and get up and have some time in the morning to see if Twiggy has anything bugging her. And to just float through the emotions and relieve a lot of that pressure. I thought perhaps my "list" was shrinking and getting under control yesterday, but I still feel like I never really had time to just collect myself. I've invoked the Long Term Care insurance to help cover the nursing costs; it was by far the easiest, most efficient admin bit of the process to date. So far, anyway.
My guy in charge at the shop, is kind of doing the same thing with his father in law; they're travelling to Florida to get some first-hand observation and have some straight forward discussions hopefully leading to decisions. Seems my weekly calls are now monthly calls - LOL. Holly & Matt are here this weekend; the kids changed my hair appt to Sat and added a massage. The way I feel right now, wish they could've fit me in today... This will be the first time we try to travel with Mike in diapers and it dawned on me that they don't have adult-size changing tables where I could roll him, and work from either side. My nurse says to try to change him standing up. I know how that's going to go; I've got maybe 60 seconds before his knees start to give out. Fingers crossed ladies!! ;)
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sKeP:
I don't understand where you have to change Mike, but I don't need to.... you can't have him falling, breaking a bone, or hitting his head wherever you're going, IMO. You don't have enough hands to keep him standing, and change him, if you think he's doesn't have the strength to get through that process.
Can you consider rolling up a camping sleeping mat, and taking it with you? I've used the blue throw away sheets with plastic on one side before. Maybe the nurse can set you up with some of those? I'd rather you helped Mike gently to the floor, and changed him from both sides, rather than have him fall on a dirty floor injuring himself.
You're a strong person, ((Amber.))
I'm praying for you.
Lighter
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Hi Skeptikal,
I don't read the board too often any more so I didn't see this thread til just now.
I won't give you any advice since you seem to be doing better than most already.
You seem to be doing what everyone does, which is learn as you go because even someone who has been through it isn't of much use considering how different every person's path is.
I never saw where you mentioned the results of the PET scan. Is it contained to his lung or has it metastasized?
I will say, when the appetite disappears we can want them to eat all we want but they just can't. I don't think it's that they won't. It's just not a function that their body undertakes any more.
If you want to PM me you can. If not of course that's fine too.
God bless you and your husband.
mud
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Hey mud... how ARE YOU? I haven't been here a lot either, but as you can imagine my stress levels have been out the roof and those old mental/emotional habits just love to take advantage of that and start popping up. You're right; he simply could not eat - it wasn't a matter of will. We've been tube feeding him for 13 days now. His swallow reflex is a mess, since losing so much muscle mass - and he silently aspirates too. Means he won't cough if something goes down the wrong way - and that creates a huge risk for fluids in the lungs. He asked for orange juice yesterday; and I teased him with bacon, country ham and biscuits & gravy this morning. Emailed the doc to ask (first, if I'm rushing things... based on just one request and no speech therapy yet) if I could tell him he could have sweet potato puree or mashed potatoes next week. Something to look forward to, you know?
His O2 levels go bonkers on me, for what appears to be no reason. I even had the tech out to check the the concentrator. Some days he'll be very coherent and his old self. Others, he'll keep taking the oxygen off and when I ask him why he says things like: I'm leaving... you have to go get ready. And I have to tell him, no; we don't have any appts for awhile. I have to tell myself not to read into those kinds of comments... but there is always a question in my mind about them.
I have a CNA every night of the week now, so that I can sleep without one ear open... and ready to jump up for any reason. My kitty is still discombobulated and despite always being meticulous about her box manners -- now prefers leaving me presents under my bed where she hides out most of the time. We're figuring out the "new normal" around here - but I do know that it will change as soon as I get used to it. Either he'll start going out once a week for chemo (and the trip alone will exhaust him) or he'll still be losing weight despite the feedings in which case we'll move to the hospice stage. Last Friday, was a full week of tube feeding and he'd still lost 3 lbs.
I'm going to schedule a 4 hr block of CNA coverage during the day too, with an optional 2 hrs additional so I can run errands, work downstairs & outside without depending on family & friends. I'm still a hermit and homebody - so it's not like I've got cabin fever - but there are things I have to do. I have SEEN him try to get out of bed by himself... and I can't trust him to not try that again; he can't stand on his own.
---------------------------------------------------------------------------
So, to connect this situation to my Dad. There is one agency here that sent me into total Twiggy melt-down with their incompetence and insensitivity; it's not someone our hospital team would normally use and the case mgr said if they continue this way, we can switch to the local home health group. It was the insurance company's preference. But the silver lining in that experience, is that Holly was here and we talked it out to the miniscule analytical details of mental BS... until I connected up the dots. I felt like I was losing hubs to the whole medical monolith; that decisions were all out of my hands... that they were taking him away from me. And I didn't trust them, if they were that incompetent. (It's just that one home health group - everyone else I'm dealing with a huge improvement over the big-city docs and nurses.)
It's similar to the feeling of watching my Dad leave, because of my mom's crazy - and the helplessness I felt at that age and overwhelming sadness.
I wish I knew how I ever connected that kind of grief with love; the yin/yang of the two emotions... which are probably the same wavelength in the universe's frequency range. And I'm a little mystified that other people can only see the one - without the other. They see sadness and want to fix it and that's wrong!! It's akin to trying to stop people from loving. You simply can't have one without the other. It's impossible in this particular space-time continuum. Sadness will run it's course - and be punctuated with other emotions too - when it's healthy, I guess. Sadness isn't the same thing as depression.
I'm hanging in there. It's important that I don't prevent people from "helping" because the reality is, that this "help" is extra work or tiring for me; they have feelings too to process. I need to rest and completely let go... and let other people do. (There is real serious strong resistance to that idea, but it's important to my being able to keep on, keepin' on...)
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sKeP:
How are you guys doing?
hhaw
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Blech.
Docs are fussing over his high white blood count - oncologist wants to send him back to big city hospital for his 2nd bronchoscopy in 2 months, to look for post-obstructive pneumonia. Again. Symptom Mgmt doc, my nurses & the speech therapist all recognize how weak he is and therefore intolerant of any travel and even the slightest physical activity. It's exhausting for him to be changed or given a bath in bed.
I think oncologist is probably right. There is a pneumonia going on. But to treat it runs the high risk of sending him into his last downward spiral -- and it will be quick. Too much CYA going on to be able to say: we did all we could... when there just isn't going to be much benefit, it's a "false hope" for hubs -- who after an hour finally said he would go back and have the tube down his throat and the surgery. I think they're just buying time and he's all out of it, and STILL in denial and refusing the little things that would really help him feel better (toothbrushing and medication for thrush). Chances are, the variety of pneumonia is some sort of candida.
And that means I have a 3 hr commute again to the big city -- where everyone is on alert for terrorist attacks on "soft targets"; like hospitals. That's assuming I can get medical transport without calling 911. They close for Thanksgiving. I'm not afraid, mind you. It's just that my patience and energy levels are getting low. I'm seeing the old grief avoidance behaviors raise their heads again; being busy for the sake of being busy and on nothing that important. And since there's a lot of "house" business going on this time of year that is important - I'm getting all bent out of shape about that, because it feels like "piling on".
SIGH.
Releasing outcomes (hops, that was still the best lesson!) and just putting one foot in front of the other.
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Oh, hon. I'm so sorry. I can visualize how exhausting and draining this is...with so little time for you to tend to Inner You.
Pneumonia has always been called "the old man's friend."
I know your hubby isn't old, but does he want all invasive treatments at this point?
Home with hospice comfort treatment (palliative care), and with pneumonia, would be such a gentler way to go.
Have you talked to hospice yet? Or asked Hubs or doctors about it?
love to you,
Hops
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Amber.... so sorry to hear M is getting weaker.
I can't imagine how difficult that is for both of you.
If you're having trouble talking to M about Hospice, bc it sounds scarier than he's ready to face, then maybe he can be evaluated without using the word HOSPICE?
The nurse can just be another nurse to help you out?
Does M have IV fluids going right now? If not, that may be a major cause with lack of energy. It certainly was for my Mom.
Careful attention has to be paid to the lungs, watching for fluid build up, but it was night and day difference in quality of life for Mom, not life sustaining. Just life improving comfort, and the ability to be present, which was so important to Mom. She was very busy up to the last. She had her sense of humor to the end, and we all valued that time together.
You already know about the calming creams, and oral pain meds likely so won't talk about that. They were such a comfort to have on hand, bc we didn't know what we'd need hour by hour.
((((Amber and family)))) Whatever you do, you'll make sure it's the very best choice for M, I know.
Lighter
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Wow this has all evolved so quickly. Now he has the feeding tube going on. :(
It sounds like you are doing the best you can do with the resources you have near you.
It's too bad they couldn't do an alternative procedure locally for diagnosing the pneumonia.
Well I think the standard that I have heard of for a healthy person is to take medication for one to two weeks for pneumonia.
Since he is unwell perhaps it would take four weeks to get over the pneumonia if he is medicated for it. Hopefully it won't be a very long infection.
I don't really know but I would think doctors should be able to give some standard guidelines for how long all of this is going to take.
I wonder if he is allowed to have acidophilus in with his food. In theory it could help with thrush
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Well, Amazons... it's all over.
He started coughing, I sat him up in bed and tried to get him to spit out whatever he was coughing up - and then he vomited the last 3 feedings everywhere. In the process, he started taking very long slow deep breaths... and I ran for the phone to call 911. EMS was here in about 10 minutes, but he'd already stopped breathing. They labored over him for 20 minutes, because when they asked for health POA, I handed them mine instead of his.
It was unexpected; wasn't a thing anyone could've done; and in a way - I'm relieved that his struggle is over and he doesn't have to face the additional invasiveness of more medical "intervention" in the natural ending of life. I'm really sad that - for whatever reason not communicated to me - he didn't accept that he was ill, and seriously, a long time ago. But we can't decide those things for other people.
The girls will be here later today; Autumn wants to see her Dad one last time and I'm trying to give that to myself as well. I normally avoid that particular abyss of emotion - of poking myself in the eye with a hot iron - of "grief rituals". It was hard enough putting his childhood teddy bear away that I got out for him a couple of days ago. But I knew better than to leave it where I could see it. I did see him during the whole process of trying to revive him, until they brought out a bone drill. But I knew that he was beyond retrieval at that point. I was holding him when the door opened and whoosh... he went on through it.
Today, I get the bunny hat out. Once my crew gets here, takes over, and I can "stand down". Would it be silly to wear it when I meet with the funeral home people? ;) It's REALLY tempting, since I've answered the question: are you alright about 50 million times already... and I know that onslaught isn't over. I've had months to realize and emotionally accept how this situation was going to end. I already kind of "knew" that he would be leaving over the past couple of years, watching his stamina decline. I was starting to work on increasing mine and couldn't convince him to do the same, doing things that were enjoyable for him. We are all different, after all.
He got me the bunny hat during the whole Amy debacle a couple of years ago. It meant that I couldn't talk, just cry; and there wasn't anything anyone could do except let me do my thing until I stopped. It was a signal, non-verbal sign... like he always wanted from me, to know when it was "safe" to talk... sigh. I never could get him to understand how my attention splits, and a 3rd thing just causes my brain to reboot... which registers on the lizard brain as a "threat"... oh well.
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Dear PR,
You managed the unmanageable as well as anyone could. Know that you are in my thoughts.
Hugs,
Richard
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Oh, Amber. My heart goes out to you.
I am so sorry for this enormous loss.
Please know you're being held in so many hearts.
And that you will not drown in your grief...even though it may feel that way.
You will survive this. You are going to be okay.
(And meanwhile, "not okay" is totally okay...)
Love to you and loving thoughts for your beloved Hubs.
(((((((((((((((Amber)))))))))))))))
Hops
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Your angel took himself lightly and flew away!
Inspired by G.K. Chesterton quote.
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Oh my God Amber, that was so fast. I wasn't expecting to read this. :( What a shitty Thanksgiving. :(
Death is always shocking to me. Even if it's normal it's a total change. Sorry hun. I'm thinking about you. I'm actually crying over here after reading this. I think I'm now sensitized to death in a way that I wasn't before my brother died. I'm so sorry it just sucks no matter what.
Cancer is rough. Today a customer called me and told me he had pancreatic cancer. I couldn't quite recall the survival rate for certain but I was hearing the back of my memory say "the survival rate for pancreatic cancer is pretty bad/low". So basically the customer was telling me he was probably dying but without saying it and I was trying to process this. I asked him when he was finished with his treatment and he said December so I maybe too cheerfully said "Oh that's good" because it wasn't too far off. He seemed to be okay with the conversation, he was happy and thanked me. It's awkward. I think I probably should have talked to him longer about his cancer treatment but I'm not sure. One wishes there was a way to somehow make things better or say something to make it better and yet there are probably few words that could help. I think the situation can probably make most people feel powerless, friends, family, extended acquaintances. It really takes a while to adjust and figure out how cope with it. I am not really sure why I am writing this. It's just that it immediately made me think about you and your husband, all the people surrounding you and all the recent changes that you are going through.
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Autumn wants to see her Dad one last time and I'm trying to give that to myself as well.
When they took my girl out on the gurney, before it left our room, I stopped them and kissed her one last time.
I'm glad I did.
You have my sympathy, Amber.
mud
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I couldn't quite recall the survival rate for certain but I was hearing the back of my memory say "the survival rate for pancreatic cancer is pretty bad/low".
Depends on the stage. Stage 4 is about zero. Even stage 1 is only 10 or 15%.
I think I probably should have talked to him longer about his cancer treatment but I'm not sure.
It probably doesn't matter. He's dealing with his mortality not whether people know what to say. Every person who has cancer has been on the other side of the conversation not knowing what to say to someone else who had it and they know how hard and awkward it is.
mud
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I am so sorry.
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Thank you all.
Our friends from the yacht club know, thanks to Susan & Fred - our neighbors who dropped off a big picnic basket of Thanksgiving fixin's Wed. night. Our banker, who is also a friend came by for our "ritual" -- decompressing from stress and emotional storms -- in the pool house, Irish wake style. Holly & Autumn cooked yesterday and covered the table with all the old standbys. Matt went fishing twice yesterday.
Honestly, the first responders were still here when the first call came in from Mike's aunt. I'd called his brother and asked him to let his sister & Aunt (I call her the switchboard... LOL) know. She's married to the last surviving sibling of his mom's family, so we've been closer to them than others. I've been reassured that I'll continue to be invited to family gatherings. Mike's brother is flying overseas today, so I haven't seen him yet. He was the one that was here a couple of times for several days and spent time with us. The sibs will have an open house for all his friends in the home town, at the house they all grew up in. In March, when there is a season opening event for a long weekend at the beach, and when we would have a housefull of people to celebrate his birthday - we'll do that again.
A couple of years ago, a friend of his - from "before me" - died unexpectedly. It really hit him hard. He tried to organize a high school reunion, and reconnected to a lot of his old friends after I encouraged him to get on Facebook. And I think that's when he started to realize he wasn't well. He had started to go really quiet and pull back from me; even to the point of sleeping on the couch instead of in bed and not sharing a bathroom with me. Someone pointed out that he was trying to protect me from the reality of things, but I think that was a defensive move because I would've hauled him kicking & screaming to the doctor sooner if I hadn't had so much pushback and denial from him. He never talked about his feelings and yet, there was something terribly fragile emotionally about him. If we hadn't been able to convince him to go in, when we did - we would've been at this point before Halloween.
The kids will be here through the weekend. Both my brother & mother have called, and actually been kind of decent to me -- even if mom did talk for 40 mins about herself again. My mom has always been a recluse; she's the one who said I have to get out & see people. But weird or not, all I want is to be alone... to process the stillness... and start the process of packing up all the stuff he's "collected" and taking the plan that I am sure I'll pursue, that developed over the last year or two... and start checking things off that list. And I need to boot his laptop that he had in the hospital and here at home and see if he left me a note. At the beginning of the month, he was still able to write and signed a birthday card for me. Not being strong enough to form the sounds for words was a tough thing for both of us.
Guess I'll never know why he thought he needed 6 cowboy hats; he always wore a ball cap. Maybe they were on sale. LOL.
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But weird or not, all I want is to be alone... to process the stillness... and start the process of packing up all the stuff he's "collected" and taking the plan that I am sure I'll pursue, that developed over the last year or two... and start checking things off that list.
That's exactly how I felt and what I did.
I was like a beaver for a month or two cleaning out this and rearranging that and putting up a little shelf or fixing this, that and the other thing. Maybe more like a squirrel rearranging its nest. I have no idea why I did any of that; I didn't get rid of any pictures or clothes that she actually wore. I just kind of stored the stuff she didn't use and organized what I cared about of hers. It did help though, why ever it happened.
And I also just wanted to be alone; I still do at times.
I hope not too many people try to tell you how to grieve. Some people seem to think there is a one size fits all way or that there is some orderly five step process with neat and tidy phases that can be labeled. Everyone does it in their own way and in their own time.
Don't hesitate to seek help to deal with it. There are a lot of grief groups and your local hospice has a lot of resources to point you to if you want some and they often have their own counselors for one on one stuff if you don't want the group thing. I didn't.
Guess I'll never know why he thought he needed 6 cowboy hats; he always wore a ball cap. Maybe they were on sale.
LOL. Or the shoes...I never realized how many she had because she only wore a small fraction of them.
mud
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I'm so sorry to hear this, PR. My condolences to you.
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So, so sorry, Phoenix, thinking of you, much love to you and your family and friends xxx
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I have started to wonder if the reason we fall in love with our opposites, is to round off our corners & edges a little more, mud.; if that's not what part of the attraction is?
Cleaning out Mike's closet wasn't emotional at all. He kept buying clothes & shoes, long after he stopped wearing all but a select few items. I'd been going through it and paring things down twice a year, anyway. I think going through the various little stashes of what he's pulled out of his pockets and saved will likely be worse. Found our concert tickets yesterday - including the 8th row at the Moody Blues w/ the Fairfax Symphony Orchestra. Our first "official" date.
The birthday card from this year is what I'll be saving in my treasure box, though. That was the beginning of the month and he could still write, though he was having difficulty. The girls & I had stayed up late the night before - blowing off steam. And since Mike was up all night, albeit in the hospital bed, the 3 of them decorated to surprise me. He was throwing crepe paper streamers up trying to get them across the blades of the ceiling fan. And smiling and laughing... thinking I'd be mad in the morning.
It has also occurred to me, that I really started losing him a couple of years ago. Just little things; the kinds of things all couples make space for each other to have in a relationship - his naps; excuses for not sleeping in bed or sharing a bathroom - things like that. I have FELT more alone in the last couple years, right up to these last two months of caring for him BECAUSE he couldn't do it himself. And it doesn't bother me now to be alone. There's no sudden change.
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My girl wasn't my opposite. We were two peas in a pod.
I didn't get emotional about any of her clothes either except for the ones she wore often or that had particular memories of times or places attached to them.
But, yes the cards and the letters and the photos that reminded me of events or times together were more sentimental.
I don't know how old your girls are but I hope they are doing as well as they can and that the three of you can lean on one another.
I don't know if this will be similar for you, but about the first ten days, I felt a sense of relief that the two years of chemo were over and so was her suffering and I was so busy with preparing for her service that I actually felt better those first few days than I did before she died. It was only after her service that the aloneness changed and became more final and harder to take and the sorrow really hit.
mud
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sKep:
I'm relieved M doesn't have to endure more medical procedures too.
It was just too hard on him..... would have created more pain, not less.
Less was better, IME.
I'm so sorry, (((Amber.)))
Lighter
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Thank you all. I'm doing just fine, which is a bit of a surprise to me. I guess that's another one of things that I was told about myself that was wrong, at least in this particular case. My mom keeps calling to try to transfer her experience to me and get me to mirror it back to her. ;) I wasn't born yesterday. I let it go to voice-mail.
I went out to the store yesterday, took some trash out in the rain, picked up the mail - which amounted to another foot high stack of catalogs & magazines like the 5 bags worth I'd just trashed. Thanks Mike. Lots of mindless stuff "to-do"... LOL. Picked out a big fat book for myself to read on British history - The Plantagenets - and it's better than any Rx and will last the required time needed to reset myself into a new schedule and routine.
I find myself "bouncing" a lot - go here; oh! I have to do this... would you LOOK at that? I better do this right now. Kind of all over the space in the house that we actually lived in. The rest of the house is just storage or to be room for other people to come stay. It's because so much of my time and attention previously had been 100% at his beck & call; even before he was seriously sick, I found it conflicting to leave him alone for long periods of time because he was attached to me; my physical presence - like a tick. Sounds derogatory and maybe it is a dig, but most of the time I didn't stop or prevent that... although I did spend a very large amount of time trying to teach him where that line was.
So, I find I have to tell myself: it doesn't matter what time you go out to the store or run errands. If you want to write checks for bills first - do it. If you want to clean those two stacks of catalogs/magazines off the table and get them ready to take out later - do it. You can go to the store when ever YOU want to - not on someone's else's timetable. If you want to go to bed at 8:30... there isn't a single person here to raise an eyebrow about it... and if you want to sleep 10 hrs, that's fine too. It's a time of mental boundary freedom - tearing down the imaginary fences - and it's not scary at all. Little by little, I'll venture out to do some more things. My friend won't be able to be here until tomorrow but I have something important to do today anyway.
So, being around groups of people isn't a problem - even if they do wear me out with their energy and desire to "help". Good lord, my D is like I used to be at that age. Energizer bunny. But rattling around in this big old house isn't a problem either. I'm not "lonely" - I've always been good company for myself - and I'm not running around "doing" all the time to avoid thinking/feeling. I am removing the layers of stuff, that have hidden the bits of my life that I've carried around for years and years... saving them for myself for when I didn't have this person who needed me so entirely around. I actually bought myself a super-duper watercolor taboret before we moved here. I have 5 or 6 different sets of brushes for different kinds of things. My old buddies. Been thinking about buying myself a press.
So: at 2:30 am the night before... I woke and couldn't go back to sleep. Twiggy and I still commune for about 1/2 an hr to an hr every morning, I talk to God too, just in case he's tuned into my frequency... and well, it's like from outside of "me", I received the knowledge that Mike is OK; from Mike himself -- and he was giving me my life back. That our contract had been successfully completed. In my sorting and re-arranging, I found the receipt for my engagement ring. He'd kept it all these years. One of many millions of pieces of paper, or marbles or shells, each and every thing making up his "memory minder". I still have it; for now. The whole day went so much better than the day before. Just that sense of "comfort that surpasses all understanding" - it's a real thing. I know I "did good"... and I'm now free to explore the next chapter in the saga. No regrets; no mysteries to puzzle out and try to understand (except the password to our accounting software)... and I get to go bring what's left of Mike home today, so he can get ready for his party in the spring.
I am indulging a bit in the magical thinking side of things. Not in important ways - I'm moving faster on the business side than anyone else is ready for. It's a task I'd just like to get it over with; despise paperwork and bureaucracy. I'm just enjoying that lingering glow of love and life shared while I do all this sorting out, removing layers, and finding that other "me" again and redefining her "next mission".
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You're so strong, Amber.
You're Izzy strong.
Lighter
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Oh PR 😭😭😭😭...I just logged on...😭😭😭😭. I'm so very sorry. I'm shocked. Lots of love and hugs in these difficult times to you and your family. Thinking of you and yours. xoxoxoxo
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So, all the business side of things needs to conform to the rules & regulations of the day. There is a set procedure. Piece o' cake.
The personal side of things, not so much. I find that my choices of things I might like to do now, are so wide open and cover a spectrum of things I like... that it's daunting to know which way to go. I can fully appreciate why the stock advice is to not make any major decisions for at least 6 months. What if you choose unwisely? (Not saying I'll follow it, because I've had a long time to think about this.)
There is a lot of rapid change, in self, occurring. I guess when one is in a relationship - there is a certain amount of reliquishing decision-making control to accommodate the other person and their preferences. When that commitment is completed with finality, then what I'm finding isn't so much that he's left a big hole... but that I am becoming whole-ly "me". Albeit, I get to keep all the lessons learned from growing together with him and how we interacted. Does that make any sense?
We usually see being "co-dependent" in a really bad light. But to truly be in a loving relationship - there does have to be some "co-existing"; and a trusting reliance on the other; an "us space" - where compromises are made, irritations and quirks and personal struggles are tolerated, and we give up a part of our autonomy for the coziness of having another human in our "inner court". When it works, the other person understands it basically the same way.
Once again, I'm faced with a strange set of challenges - the ability to choose almost any future I want, where ever I want - only this time I don't really have to consider the welfare or opinions of any other person. That's not to say that I'm not HEARING all those opinions about "what I should do now" - LOL - far from it. It's kind of interesting to see what they value, expressed in that advice. And also their fears about potentially being in my shoes themselves.
I'm still cussing him, you know. As I clear away all the stacks of paper and ticky-tacky that he wouldn't let me get rid of. I'm putting furniture where I want it. Finally upgrading the tech stuff and organizing the office, to be functional. Watching what I want to watch on the boob tube instead of the normal stuff -- or turning the damn thing off. My rotating shift of visitors have remarked how odd it is to get up in the morning and there's no sound of tv. Yeah. FINALLY. That thing is like a huge pacifier and makes people completely passive. Great for a soporific - not so much, for "having a life" and being fully engaged in it.
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So, I find that clearing out all the "stuff" I've whined about for years is aggravating anger (at being left to deal with it), that overwhelming sense of loss, and some sense of new freedom/wholeness. It gives me great joy to find the stacks of crap he hid from me (mostly junk mail) and recycle it - FINALLY. There is a brand new "sense of order" settling into the spaces here.
I had started asking myself what I "wanted" to do, after he died - long before it looked like it was going to be a reality. I still hoped he hadn't waited too long. And I had a super-strong pull in a direction that is still a viable option. But now I'm "stuck" -- still "taking care of him & his stuff" -- and not able to do something as simple as schedule myself a massage; things just for me. Y'all can suggest as many practical options as you want, but until I feel just as important to take care of - as it is working through hubs' pile o' crap... I simply won't do anything. Found myself procrastinating about my eye checkup; then a screw came loose on my glasses... and the lens popped out. I was able to fix them in a few minutes... but TALK ABOUT A SIGN.
I just started getting outside to tackle the immense amount of yardwork, that I couldn't do while "on duty" with hubs. Feels good to be moving again, but that massage sounds better & better. All I have to do - is PICK UP THE PHONE. It's not that I have so much on my mind - au contraire. I've known for a long, long time what I would different around here. Just haven't been able to do so - because hubs got in the way, one way or another and stopped me from dealing with it. His hang-up was, love him - love his "stuff". He claimed at least the baggage he brought to this relationship was just "stuff"... while mine was emotional baggage. So, he died with the most toys. Great - I wish he HAD been able to take them with him. It's him I miss -- and his "stuff" just ain't a good substitute. And I feel compelled to deal with HIS stuff - before I deal with mine.
Ain't that dumb? I do fight against it, some. I know it's just a neural pattern; a groove in a vinyl record album.
But I can see myself becoming my mother - who for 50 years has been trying to let go of all her "stuff" and is continually sorting & reorganizing it. Unless I just get mad and find someone to come get it all. They're gonna need a big truck.
No way am I going to let a habit take over and make me as crazy as my mother.
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So, I find that clearing out all the "stuff" I've whined about for years is aggravating anger (at being left to deal with it), that overwhelming sense of loss, and some sense of new freedom/wholeness. It gives me great joy to find the stacks of crap he hid from me (mostly junk mail) and recycle it - FINALLY. There is a brand new "sense of order" settling into the spaces here.
I had started asking myself what I "wanted" to do, after he died - long before it looked like it was going to be a reality. I still hoped he hadn't waited too long. And I had a super-strong pull in a direction that is still a viable option. But now I'm "stuck" -- still "taking care of him & his stuff" -- and not able to do something as simple as schedule myself a massage; things just for me. Y'all can suggest as many practical options as you want, but until I feel just as important to take care of - as it is working through hubs' pile o' crap... I simply won't do anything. Found myself procrastinating about my eye checkup; then a screw came loose on my glasses... and the lens popped out. I was able to fix them in a few minutes... but TALK ABOUT A SIGN.
I just started getting outside to tackle the immense amount of yardwork, that I couldn't do while "on duty" with hubs. Feels good to be moving again, but that massage sounds better & better. All I have to do - is PICK UP THE PHONE. It's not that I have so much on my mind - au contraire. I've known for a long, long time what I would different around here. Just haven't been able to do so - because hubs got in the way, one way or another and stopped me from dealing with it. His hang-up was, love him - love his "stuff". He claimed at least the baggage he brought to this relationship was just "stuff"... while mine was emotional baggage. So, he died with the most toys. Great - I wish he HAD been able to take them with him. It's him I miss -- and his "stuff" just ain't a good substitute. And I feel compelled to deal with HIS stuff - before I deal with mine.
Ain't that dumb? I do fight against it, some. I know it's just a neural pattern; a groove in a vinyl record album.
But I can see myself becoming my mother - who for 50 years has been trying to let go of all her "stuff" and is continually sorting & reorganizing it. Unless I just get mad and find someone to come get it all. They're gonna need a big truck.
No way am I going to let a habit take over and make me as crazy as my mother.
Phoenix, I often find that when I keep putting off the self care stuff, like booking up a massage, it's because doing that will make me relax and then I'll let go. And if I've got a shed load of stuff to get through I just can't let go and go all floppy in the middle of it because then it's too much and I can't cope. I am with you in spirit - I love clearing stuff out - and I do think that a practical, physical clear out is every bit as beneficial and useful as a swim or a massage or whatever else it might be that is needed. So I say go with the flow, get on with the practical stuff and when the time is right for that massage you can go and do it and if that means you spend the next three days curled up on the sofa watching films or needing to get out and hike up mountains then there will be no reason for you not to. Sending love and strength to you, you're amazing xx
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sKeP:
If you get angry, and call a truck to cart stuff way........
it might be a pretty great option, IMO.
Once it's done, I think you'd have few regrets.
All that clear sunny space will be a balm to soul and creativity.
::Hoping you make an eye appointment... hoping you get that massage soon::
Lighter
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Thanks Lighter.
My mood just went 180 degrees into sadness last night. The yacht club posted their most recent pictures of hubs on facebook and I was happily scrolling along, when WHAM: there he was. I wasn't expecting it and it hit me like a ton of bricks. Great pictures - but OMG - he's not coming back and looking at his picture and realizing that is like shoving a sharp stick in my eye. And I'm bawling again. Dammit. I am so tired of having pockets full of wet kleenex.
So, I'm taking the "day off". Just having a "me" day. I may not do anything except sit around cry. Just because I can and just because sooner or later, I'm going to run out of tears. Saw a post from a professor on FB this morning that I used to work with. Her hubs died 8 yrs ago, about this time of year. She is just now moving -- and still crying. 8 years is a long time. I would be staring at 70 yrs old, if I waited that long to get on with my life. The things that remind me of him - in a good way - are what make me sad. Maybe in a self-pitying sort of way even. I do feel sorry for me.
And the "stuff" -- well, I'm liking that truck idea a lot. Just a one fell swoop - clear the decks of the last 15 years. Finish grieving in MY space, not surrounded by his stuff; or left to keep running into either grief or anger at the sheer amount of stuff left to me, to deal with.
I need that clear space, to figure out how to be ME. And what my life is going to be like NOW. And where I want to BE... and figure out what in the world I'm going to do with myself now. I don't want to spend years sorting through the past.
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PR,
I can relate to so much to what you're describing. I lost my significant other about 12 years ago. I went to Grief Counseling, where I sat & cried. It was very helpful & wet kleenex was the norm there.
I'm no expert, but, IMO, please don't worry about whether you're "self-pitying". Just feel what you feel. IMO, best to feel it & get it out now, so that you don't suppress those "self-pitying" feelings & wind up holding them in for years & years.
I too had those 180 degree turns, when the harsh reality hit. It's a new life & a new reality. Give yourself time. Try to be kind to yourself. Take as many "days off" & "me" days as you need. IME, you will figure out the new "you" over a period of time.
Re: clearing out the "stuff", I like the idea of a truck too. The truck will disappear the "stuff" fast(er) & then you'll have your space. You get to call the shots now, so if this is what you want, go for it.
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Thanks Ann. Your posts are always like beacon cutting through the fog. Right to the point. I like that.
I guess it's easy to expect too much from myself. After all the years spent working through a bunch of "old" grief, I think I should be an expert by now. LOL. There are just so many ways we can be unfair to ourselves.
Maybe I'll start a new thread; about the process of reinvention. A looking forward, dreaming, defining... exercise.
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Big truck. Oh YES.
He is not in his stuff. You could keep just three, or six, or ten things.
It is enough.
What a massive relief. Or if it works, hire those professional estate people...they'll have it sorted/tidied/sold before you know it.
Thank you, dear, for the reminder not to wait years to live one's life.
My T said the same to me today ... I am running out of time.
Have been so STUCK in the quotidian and my escapism. I do want to move forward.
Your forced necessity to do that, and sharing it here...has really helped.
So even in your grief you've inadvertently helped a friend. Funny how that happens.
love to you, and much comfort,
Hops
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Thanks Hops.
We DO have to go on living; it's something his Mom used to tell me; something he believed too.
So, I choose to see this as a windfall opportunity to intentionally design a life for me. Some of the stuff I've talked about here before will come back up - my skills, how I want to spend my time and where. It'll be some months before I'll be free to decide and execute any plans. So that should be enough time to spin the compass, throw the darts, and explore my "druthers".
No matter what - I don't have a comfort zone right now. But, I also know it's going to be necessary to take some risks. More than I would normally consider. No risks; no growth. Hubs enabled a "safe" life for me... and it was centered on him. Neither of us ventured too far outside that safe zone. Feels pretty vulnerable - exposed. But I don't get to pick the feelings right now.