For Hops!

[sKePTiKal]

Hi - how're you doing with all your changes? Have a minute to share the latest?

I been thinkin' bout ya and wondering if you're crazy busy... if the new space you've got since D has moved out is liberating... how you're doing with the freelance work... if you're finding new ways to focus and cope. Getting any glimpses of what the new "Hop's World" will be like yet?

MIL's radiation was successful and the low-dose treatment avoided any noticeable side effects. However, in the month since the treatments ended, two more tumors have grown to replace the one that was pretty much eliminated this time. Doc is now putting her on a genetic version, pill-based chemo: Tarceva. Lord only knows how expensive that will be and how much her insurance will cover. We'll find out next week. It's lung cancer - and even the surgical removal of part of her lung (3-4 yrs ago) didn't stop it from growing back - so this drug is supposed to be used like a "maintenance" drug - whatever that means.

It was a little weird. We visited the radiologist first, for the monthly checkup and he was all upbeat (the man is a total loon and we all enjoyed "playing" together) and happy and told her that according to him - she was doing very well. Half an hour later, we visit the oncologist who had ordered the CT scan - and we go from the relief of a successful treatment to being told that she has a recurrent tumor in the L lung and a new one in the R lung... and here's the new treatment to adjust to and put up with and endure. So even while we were winning the battle with one tumor (and it was in a critical location - the esophagus) the cancer was outflanking us and sneaking up again. This doc did say that with the drug, there was a chance that these (currently small) tumors could be killed off, if she began as soon as possible.

MIL's birthday is Sunday; she'll be 83. Sometimes I think she's got a great attitude and other times, I can tell she's depressed and is facing (in her private way) her death. I know I would be!! Her eyes get very red rimmed (tho' I've not caught her crying) when she's thinking the worst. When she's hopeful - the redness goes away. The hardest thing is to be sitting in the Drs. office with her, getting news like this and she asks me what should she do? I have to just shake my head and tell her I can't make that decision for her; I can explain all the pros & cons but it's not my decision. That's a boundary I can't cross, even if the docs are assuming I'm her daughter. I know she's thinking that even with the medication, she knows how this all will end. The same way all our stories will end. And she's starting to tire of the process of fighting it and is working toward an inner acceptance, even as she's deciding she'll take the chance that the drug offers.

Hubby is good, throughout this. He and I both know we need to drop in on her and engage her more frequently right now - not necessarily to talk about this. Just to keep her busy and connected and make sure she eats enough; she brings things up freely on her own, as they occur to her. Thoughts about her house; her savings, her car, etc. BIL is also very good about dealing with the things that concern MIL, keeping her in the present; I think they're very close. SIL - well, MIL decided it was best to tell her, face to face this weekend. I hope she's right. SIL is a complicated puzzle to me. But then, I didn't have the kind of mom she does. MIL and I are more like close friends... but my other losses are so close yet, to me... that I think I'm already beginning the grieving process for her. This whole situation may be more than I bargained for; time will tell.

One really welcome surprise is that here at the beach, there is all the medical care & med tech that was available at "home", in Va. And with the smaller resident population, the doctors have more time with each patient. Everyone we've met through this process has been absolutely wonderful - real oeople and not just their "role".

And of course - there's still LOTS more going on "Amber's World" - but this is the most important thing. Everything else, is just "stuff". I sure hope I'm up to this...

... so tell me, Hops... how goes it with you? Do you have any "hoppy" news? I sure could stand to hear some! 

[sKePTiKal]

I'm not saying what I'm trying to say..................... arrrrgggggghhh. Hate it when that happens.

The feelings are all right there... and the steam-pressure is building... and STILL the words are just beyond the tip of my tongue, the click of the computer keys, over & beyond the dictionary of words of in my brain.

I'll try this again, in a bit.

[Hopalong]

Aww, PR, Amber, hon. Thank you for thinking of me, and for writing to ask...and especially for sharing your story of MIL.
More on me in a bit, but she...your story (together) moves me much.

It's so sad to think about losing her, when at last a mother figure is present in your life who is...present. In a way your own mother couldn't be. I think it's the simple reality and honesty of your MIL that makes her easy to love. Yes, you are taking care of her. But just by being in your life, she is taking care of you too. She's letting you love her, care for her, be with her in this chapter.

I think when people let us be compassionate companions and witnesses, they are giving us something immeasurable.

I am very sorry she is facing the kind of end that cancer is. Though with modern medicine, and palliative hospice care (when that is appropriate) there will be comfort. It's not easy. We all might wish to be neatly hit by a double-decker bus when we're crossing Piccadilly Square looking the other way, happily humming "Here Comes the Sun" or something. But nature's not taking orders...mine would be, "Over easy, please." Oh, life. Cruel edge.

It is wonderful that you are letting her express her own acceptance, piece by piece. Talking about her final wishes or how she'd like her car, other things dealt with. It's kind of the ultimate mother thing, to take care of your own loose ends. My mother certainly didn't. She went out with the blithe confidence that others would just deal. And I guess we have. (I am not organized and one goal is to tidy up things so no one else will be sitting there with their head spinning, what do I do with all this?)

The other thing is...your MIL is alive until she's not. Death takes an hour or so. My Dad, after a year and a half of cancer, was only "out of it" mentally for about a day and a half. He was fully alive right up until then. So the talking, touching, loving, and especially listening to Elgar...was as important as it ever had been. He was in his life, and living, and himself.

You have such a tender, respectful attitude toward her, PR. I love the way you help but don't "manage" her. You are respectful and kind. She is so lucky. And as to being "up to it"? Of course you're not. One of the hardest things about caregiving, imo, is to find acceptance for our failure to be able to make it sweet and clear and easy for the one who suffers. It's okay. We can make moments of sweetness, and clarity, and ease. That's all. And it's okay.

I'll do news of me on the Heart & Home thread...see you over there.

love to you,
Hops

[sKePTiKal]

Thank you from the bottom of my heart, Hops.

My words just weren't syncing up with my feelings - and I wasn't making any sense even to myself. And perhaps, I'm even grieving prematurely. MIL said last night (about my worries about SILs reaction to the latest news) - that she (MIL) had cancer when she moved here, and so she still has cancer now... so what's the big deal? It struck me, like what you said: she's alive until she isn't. Not like a denial; not like she doesn't know that this new medicine is sort of her "last resort" to merely restrict the growth of the new tumors (and maybe shrink them); not like she's thinking it's all over but the dying; nor that she's going to escape facing that or that the drug will prevent other tumors or "cure" the cancer completely.

This is some sort of unexpected gift, in so many ways. And you are so right about making those little moments count - that's where my energy needs to be; not in knowing (or obsessing & worrying) about what happens on the last page of the last chapter. Fortunately, hubby has her way of thinking; her attitude - and a very quirky, fun way of getting to those moments. Time to let him lead the way through this, perhaps.

[Hopalong]

Oh you are WELCOME.

I figure about death...death knows how to take care of itself.

We need to trust it.

It's a friend, in the end.

It's tedious and laborious, just like labor...and then, we're somewhere else.

We need to trust it, not fight it so hard.

It's okay.

YOU are going to be okay. You will not lose her. She'll be in you.

You are having a wonderful, wonderful experience of love.

(This is the main thing I remember about "seeing my parents out" -- I really got what it was like to love.
It included releasing.)

xxxxxxxxxxxxooooooooooooo

Hops

[sKePTiKal]

Sunday was her birthday and SIL's family came down and we all made the trek to the mainland for a big family reunion. Sat night we had a little home party with wacky hats, cupcakes and presents. Yesterday, she told me that she was so appreciative of how much trouble I went to (hardly a thing, really... we've been doing these little "special day" parties for her birthday for a few years now) and she didn't know how to thank me.

Lord knows how I know how to do this: but I told her - how bout you just give me a hug and that'll be thanks enough?

Funny-odd thing - all the while, here I am focussed on this caretaking and she's doing remarkably well, really (much better emotionally than I am, most of the time) I also tripped one of my brother's anger landmines and he's been bludgeoning me with it trying to make me feel guilty for something he thinks I didn't do - but I clearly did exactly what he was angry that I didn't do. And I had to process that crap all pretty quick and not respond angrily on my part... not let it bleed over into MIL's special occasion... and still set a boundary with brother and let him know that I thought he was being unjustifiably angry, under the circumstances.... without fanning the anger. I don't know if that was successful yet - but at least it's quiet.

I figured it out - for me - that he's using anger to offload his guilt about his lack of availability and involvement in business affairs... so when I share information with him, it triggers that guilt and he accuses me of unfairly excluding him. He expects me to spoonfeed him information about everything, so I pointed out that he owns the responsibility for asking his own questions, checking on the status of things, etc and that it wasn't my fault (nor my responsibility to compensate for his choices) that he doesn't do this.

N's.... can't live with 'em... can't cure 'em... can't even show them that their behavior just isn't in their best interest...


I think I'm hanging in there, even if some days I feel a little emotionally needy and don't always know why and of course, I wait to share or ask until I'm getting close to going over the edge.

thank you Hops.

[Hopalong]

Gee whiz, hon, you're allowed to need.

Sounds like you are the radar system for the family.

Lotta work. Being a sentry...

Understandable why you'd have that vigilance.

But--it's peacetime now. Those other things are just, people being uncomfortable.
It's okay to let people own their own discomfort.

You don't have to soothe everyone.

(Pot, meet Kettle...of course.) 

love,
Hops

[lighter]

Thank you from the bottom of my heart, Hops.
 And you are so right about making those little moments count - that's where my energy needs to be; not in knowing (or obsessing & worrying) about what happens on the last page of the last chapter. Fortunately, hubby has her way of thinking; her attitude - and a very quirky, fun way of getting to those moments. Time to let him lead the way through this, perhaps.

Yes.

(((Amber and family))

Light

[sKePTiKal]

Sounds like you are the radar system for the family.

Lotta work. Being a sentry...

Yep; this is one of my old FOO roles. It is truly an energy vampire. This go-round is different, though. This time, the others in hubby's family have personally told me how much they appreciate all my news... my observations of MIL and how she's *really* doing... and my translations of what she sometimes scrambles up, in trying to tell them about her medical trials & tribulations. I'm not overly comfortable with that kind of praise, you know. Simply not used to it. It does help me connect with these other family members better. It sure beats the kind of treatment I get from my own mom & brother - hands down!!

The good news on my FOO front is, that it seems to be getting easier for me to defend myself from them. I still get mighty upset... and that'll be the next thing I try to "head off at the pass", when my bro starts verbally beating me up next time - I know there will be a next time, even though I've clearly told him I don't appreciate it; it will stop; and that I don't see how he can be angry at me for doing exactly as he wants me to do. And I demonstrated that I won't trade this kind of punches with him. Period. For me, this is positive progress.

As is, the clear realization about this technique of wielding anger like a club to instill guilt - fueling self-doubt, self-mistrust, and even to a degree... the cohesiveness of self, as a a separate entity. My thought process went through a light-speed assessment of whether I'd really done something wrong... because I've been so well trained to believe that if someone is angry at me... they therefore must be "right" and "justified" and I must be guilty of a wrong-doing. I must have been or done something "bad". I kept looking & looking & looking... because it really didn't make any sense to me. And so I thought I must've been missing something or being blind to something obvious or.... that, in effect, it was all my fault and so I was the one responsible for "fixing" things with an apology.... change... promises... whatever.

BULLSHIT.

So odd - and even a little sad - that I only late in life discovered that this is one way that abusers violate their victims boundaries and that I was un-wittingly cooperating in my own abuse by analyzing myself under a laser-microscope trying to find (or even inventing) a rational reason for the whole interaction, where I was at fault.

[Hopalong]

Thank you, PR! This is so well summarized. It's really helpful to think about this in the context of my life too:

I've been so well trained to believe that if someone is angry at me... they therefore must be "right" and "justified" and I must be guilty of a wrong-doing. I must have been or done something "bad". I kept looking & looking & looking... because it really didn't make any sense to me. And so I thought I must've been missing something or being blind to something obvious or.... that, in effect, it was all my fault and so I was the one responsible for "fixing" things with an apology.... change... promises... whatever.

BULLSHIT.

So odd - and even a little sad - that I only late in life discovered that ...this is one way that abusers violate their victims boundaries

Getting to that "bullshit" is an amazing, powerful moment isn't it? When it actually rises up and fills your mind, even for a nanosecond...? There's something inside FINALLY saying, I do not deserve this. And saying...NO.

When i think about it, I think those moments really are the beginning of change. But not when I just experience counter-rage. It's more like, when I experience that assertion calmly. Seeing someone else's blaming and raging as belonging to them. When I actually have experienced this about cruelty...it is like connecting with a surviving piece of wholeness I didn't know I had. It's something I have to repeat in my life. Unfortunately.

A lot of the process for me has been grief. Finding out that human beings were not what I hoped. It's still hard. (Not to mention finding out I'm not what I'd hoped either. But the forgiveness is all in the same pot. Me, others.)

(My tolerance for abuse is still higher than that of people without a trained-to-feel-shame legacy. I do have an ability to stand up for myself, even if my timing's a little delayed.)

It's the moment of self-love. I know I will go back to compassion, even for abusers, but I feel more dignity and confidence in the moment for saying...NO.

Who was supposed to teach us, "This is not acceptable?" Not JUST our parents. The whole culture.

Why isn't our entire culture teaching bullies that? I really really do believe the media our children have been saturated in has desensitized them. All of us, really. (Individual kids, of course not--hearts are as good as they ever were in most...but collectively, our culture's in deep doo-doo.)

Rambling...but thanks for this.

Hops

[sKePTiKal]

So now when we try to say those things, we think we are bad.  When someone does something outrageous, we think they must be right and that WE are the ones who are having the problem.  WE need to change.

I couldn't agree with this more, CB. It's the old saying about how we train the people around us, how to treat us. I have to remain engaged with my brother, because of the business; I can't go completely NC with him. But I also can't let him treat me like this - whatever the real underlying reason for it is. I try to remember that he lived through the very same trauma that I did - though his experience was significantly different. But I started seeing how my mom was training him to be selfish and inconsiderate of others and expect others' to always be responsible for his feelings & actions... when he was still in high school.

Hops - even tho' I'm used to responding with my own rage when someone is beating me about the brain with their own rage - I feel that this is the real damage to me; giving in to that reflex puts me on their level and frankly, I don't like how stupid I sound to myself in that state. So I put a verbal push-hands move on him instead, blocking and drawing a line of what is/isn't acceptable and cleared up some of the misapprehended "facts" that he was using to justify his anger and pointed out the idiocy of being angry with me, for an action that he said I didn't do - but clearly was doing... which is why he said he was angry. I asked him a lot of questions, too... because I think the anger he was taking out on me is misplaced anger and I just happened to get in his way at the wrong moment. Without aggression; or hostility... just trying to understand his nuclear reaction over something that wasn't what he was saying it was.

N or not, matters a lot less to me these days... it's way more complicated than that, even if it is a convenient shorthand stereotype to quickly sum up or symbolize some of the conflict in descriptions; while we're talking it all out trying to understand. In my family, I know it's more complicated than garden-variety N characteristics, but it's not NPD, either... it defies a layman's diagnosis, even if I do think I'm a pretty good troubleshooter of software & computers. And like it or not I do have to deal with my brother for the foreseeable future... even if he refuses to recognize my boundaries one on one. When there are witnesses, he never behaves like this. Of course.

[lighter]

Wow.

CB.... I'm so glad I took the time to read through your post this morning.

It makes my stomach flip thinking about the responsibility of enforcing proper boundaries.

So many changes to figure out and find consistency with.

I need to teach my girls to do it for themselves, and Lord knows I don't want them stepping into the N role that's been left vacant.

Lighter

[sKePTiKal]

OK - this is MADDENING, as in crazy-making. 12 days after my brother opened both barrels on me... he's flipped back to Mr. Hyde. I talked to him on the phone last night (after the curfew limit I gave him, but OK - it'll take a while to train him; topic discussed was essential). By way of apology... when I said hello, he asked: "Is this Sigmund Freud?"

Meanwhile, I've been torturing myself with all kinds of worst-case scenarios and now have a very clean back porch (my ocd version of dealing with all that guilt, worry, anxiety, & tension...) during the 11 days of silent treatment. Even tho' I didn't return his anger-bullets with my own... instead, I asked him a bunch of questions about what he was really angry about (hence the funny greeting).

In the process, I stumbled on something that maybe goes on my other thread. When someone targets me with their anger, "I" start to dis-integrate - become less whole, less confident in myself; I "fall apart"... and that's what starts this whole internal dialogue looking for what I did wrong and asking if I really am "guilty as charged". This is my knee-jerk instant emotional reflex reaction. And even when I can't find anything - damn, if I don't keep looking! Going over & over everything, ruminating on it, always looking for a way that the anger makes SENSE; i.e., is rational. Being told to let it go... is useless, even when that's exactly what I need to do.

There's a whole thread of stuff related to what's wrong with what I just observed, above. And maybe I'll copy this over... and start picking that apart. But, essentially, I think it comes down to the idea that the person who is angry matters more - than I do. That their feelings matter more than mine... and that by god, I'd better figure out what I did "wrong" and learn not to do it again. There is this pattern or script or primal feeling or whatever (attachment styles?) that I've had glimspses of, in myself - that proposes that IF someone is angry with me, it's a life/death situation; and the outcome is death or worse. And it's permanent. There is no "making up", getting past it, or resolving it... forgetting it... forgiving it. And that this is normal, natural, and the "way people are".

I saw this in my step-sons, one night during dinner. Conversation and tension between me & their dad kept mounting; we were both getting angry at each other. And the kids were shrinking down inside of themselves (yeah - I know that place too well). I don't remember who started it, but at some point one of us started throwing spaghetti at the other. And the tension lifted as an all-out food fight and silliness replaced it. Later on, I realized that the kids were just as terrified of the "permanent result" of a parent's anger as I was... and none of us knew or had experienced in a meaningful way, the fact that anger can be resolved and a relationship re-established. Equilibrium in attachment re-attained... "safety" restored.