Author Topic: Really? Did you seriously just say that out loud?  (Read 6020 times)

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The Wild One, Forever

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Really? Did you seriously just say that out loud?
« on: June 16, 2013, 06:05:05 PM »
My cousin, close as a sister to me, was diagnosed with ALS about 18 months ago.  In that short time, she has gone from being able to walk and move about normally, work, drive, etc., to being completely immobile except for some slight movement in a couple of her fingers.  She's in a power chair and needs people to do everything for her, including things able-bodied people would never think twice about,such as scratching an itch, getting hair out of her face, rubbing her eye, etc.  Unlike a quadriplegic, she has total feeling in her body, so her comfort level runs from highly uncomfortable to excruciating pain.  She is very young and has two little kids,including a toddler baby, and the situation is so sad, I have to compartmentalize.  It is, by far, the worst thing ever to happen in our (extraordinarily close) family.  Her husband is an amazing man who chose to quit his $$$ job in order that he could take care of her and spend the time with her she has left.  I spend pretty much all my free time over there, helping him take care of her, even spending three or four nights per week over there so she isn't alone at night in case she needs anything.  There is a fairly steady stream of visitors in and out of that house, which her husband and I are grateful for, because in this situation, we need all the loving support we can get, and it means the world to my cousin.

The problem arises when people start running their mouths before engaging their brains, and I mean good, well-meaning people who love my cousin.  We'll all be sitting there visiting, and then the "typical" inappropriate questions and comments start:  "Is there anything more they can do?" "Are they working on a cure?"  "I can't believe there is nothing more they can do for you to save your life!  You're so young!"  And on and on, in this vein.  By now, her husband is beet red and fuming, I'm offering up seven different varieties of beandip, and my cousin is in tears.  It happened again today, when a longtime friend of my cousin's late mother stopped by, and started lamenting how horrible and sad this all is, and what were the kids going to do without a mother, etc.  I had to get my crying cousin in the house and give her a pill to calm her down.  After I"d brought her inside, her husband told the friend, "I am not trying to be rude, but please, don't say stuff like that in front of my wife."  Friend acted surprised that she'd said anything wrong!

Her husband and I have done extensive research into ALS treatments,and prior to my cousin entering hospice care, they worked closely with a doctor at a world-renowned research hospital in another state, in order to ensure my cousin  was getting the best care possible.  She is one of only 700 people in the world who was implanted with a diaphragm pacer to help her breathe; she is on Rylutek, the only pharmaceutical shown to slow the progression of ALS somewhat; and she uses a Bi-Pap machine to aid in her breathing, also.  A cure, if one is to be had, is at least 7-10 years away and will be based on stem-cell research, from the way it looks. So, in other words, anything that could be done for her has been done, and these questions seem to imply that there is some treatment out there that she and her husband just aren't doing.    ::)  It upsets her and it makes him really angry and protective of his wife.  I sit there and cringe, and my heart aches for my cousin.  She feels horrible for days after these visits.  Fortunately, the vast majority of people who pay visits have more common sense than to take the conversation in that direction, but unfortunately, enough people do that we need a way to make it stop. 

What we'd like to tell them is, just forget about her disease when you visit.  If she wants to talk about it, she'll bring it up.  Ask her about her amazing kids, about Game Of Thrones, about her experiences as a former teacher or singing in her band, etc.  She is way more than a "victim of ALS", and if there were any treatment or cure to ease her agony, her husband would have her first in line for it.

Sorry this ended up being so long.  Is there anything we can say to nip these comments in the bud, or, better yet, prevent them?  Thank you.

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TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #1 on: June 16, 2013, 06:15:04 PM »
Yes,

Print out this article, and hand it to people when they are standing outside the door.

Do NOT allow them to enter until they have read it completely.


It's psychologist Susan Silk's "Ring Theory."

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Quote
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.

There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.

Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.


If you have to, say it directly to their faces: "do not lament and whine or say how horrible things are to any of us. The people to whom you say those things are people who are FURTHER away from the crisis. Not us. It's hard enough for us already. Do not put us in the position of having to comfort you.
    "And do not dwell on the negative, because WE are *living* in that negative daily, and we do not need or want to be reminded of it by your conversation."
 
Anybody who doesn't need that article won't be in the LEAST offended by you making them read it.

And you know what?

Quote
a longtime friend of my cousin's late mother stopped by,

How important was this woman to your cousin? Because maybe it's time to really restrict who is allowed to come in the door.

Also: "stopped by"? Don't let anybody stop by anymore. By appointment only.
That gives you guys the chance to lay the ground rules and explain things to people BEFORE they get inside the door.

It's not about them. That's one of the things that's clear with the "circles" thing in that article. Don't allow anyone in who is coming because it will make THEM feel good.  And frankly, that why this lady came--SHE wants to feel better, she wants to feel that she did the right things, etc.

So she can stay home.
« Last Edit: June 16, 2013, 06:23:35 PM by TootsNYC »

TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #2 on: June 16, 2013, 06:16:08 PM »
Also, feel free to completely interrupt these people and take them in the other room, pulling them by the arm if you have to.

But yeah, even then your cousin is going to know, and that's going to be almost as hard as if they got the whole speech out.

TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #3 on: June 16, 2013, 06:19:42 PM »
And I want to say: That seriously sucks. For all of you. I wish you all the best, all the strength, all the sleep, all the love, all the logistical support that you can possibly have.

The Wild One, Forever

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Re: Really? Did you seriously just say that out loud?
« Reply #4 on: June 16, 2013, 06:21:28 PM »
Toots, this is such amazing advice!  I am going to print that article and bring it over so my cousin's husband can read it.  Having people read and agree to it is an effective, proactive way to handle this.  Love it!
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Dawse

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Re: Really? Did you seriously just say that out loud?
« Reply #5 on: June 16, 2013, 06:21:49 PM »
First of all, I want to offer my sympathies for what must be a very difficult and upsetting situation for all concerned. I really am sorry you have to go through this.

I would suggest, once the first question rears its ugly head, a reply of something along the lines of 'They've done everything possible already. Beandip?' And then, if they don't get the hint, end the conversation. Stand up, move towards the door, a phrase of 'Oh, dear, it was lovely to see you but I think 'Cousin' may be tiring/our favourite program is starting/the cat appears to have become a fireball/I'm sick of the sight of you.' Don't let anyone continue a vein of conversation you know is upsetting for anyone.

ETA Someone beat me to it - I thoroughly second Toots advice too, that's a very useful article to have in your weaponry.
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TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #6 on: June 16, 2013, 06:24:32 PM »
I thought it was the most amazingly incredibly wonderful thing when I read it, and I'm thrilled beyond words to be able to connect it to someone who can truly, truly use it.
« Last Edit: June 16, 2013, 06:32:25 PM by TootsNYC »

Dawse

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Re: Really? Did you seriously just say that out loud?
« Reply #7 on: June 16, 2013, 06:28:48 PM »
It really struck a chord with me too. The first time I read it, I just remember thinking how amazingly simple and obvious it seemed, and how much sense it makes. If only we could make everyone, everywhere read it and put it into practice, I'm sure interactions with people would become a lot more pleasant and less upsetting.
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The Wild One, Forever

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Re: Really? Did you seriously just say that out loud?
« Reply #8 on: June 16, 2013, 06:29:41 PM »
I thought it was the most amazingly incredibly wonderful thing when I read it, and I'm thrilled beyond words to be able to connect it to someone who can truly, truly read it.

 ;D  It is perfect for this situation.
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TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #9 on: June 16, 2013, 06:31:23 PM »
Oh, and you might also consider providing topics of conversation for some of those visitors. They're at a loss for words, and they have no idea what to talk about.

Especially someone sort of distant like that--they don't really have anything in common with your cousin. They're only there because your cousin is so sick. And so that's what on their minds.
   Also, when we gather with people we don't know well, we tend to make conversation out of the REASON we're together. Like, it's a birthday party, so we talk about the cake; it's a graduation open house, so we talk about the graduate, and his grades, and his college plans.
    In this case, the illness is the reason, so people's patterns are to talk about it. And there's not a lot else going on to talk about, so people are really at a loss.

That's part of why I suggested you seriously start restricting who can come by. Unless *your cousin* really wants to see them, unless *she* gathers strength, distraction, humor, support, etc., from seeing them, just don't let them in. "She's not up for visitors now."

But if you don't want to do that, then give people a cheat sheet; what *is* a good topic of conversation? What sorts of things make your cousin glad someone stopped by?
   Some people might find comfort in hearing other people's plans for the future--where they're going on vacation; whether they're going to remodel the deck next summer or not; etc.
    Other people might find comfort in reminiscing about the past--the fun, the tender, etc. Maybe if this lady had told some stories about cousin's mom, it might have been comforting.
   I don't know--I'm just making this up.

And even though *I* can think of things like this, I still would be really grateful to know what sorts of suggestions you might have. Not that any of you have time to sit down and draw this up, but it might help.

And if visits are "by appointment," your cousin might the best one to provide that guidance. She might be able to say, "Oh, Mom's friend wants to come by--wouldn't it be nice to hear some stories about when they were younger" or "Oh, mom's friend, I have no idea what we'd talk about, don't let her come."
 

And rereading your post, and I see I zoomed past this:

Quote
What we'd like to tell them is, just forget about her disease when you visit.  If she wants to talk about it, she'll bring it up.  Ask her about her amazing kids, about Game Of Thrones, about her experiences as a former teacher or singing in her band, etc.

Tell them that. If you have to, write it down on a card and hand it to them along with the printout of that column on the Ring Theory.
« Last Edit: June 16, 2013, 06:33:37 PM by TootsNYC »

The Wild One, Forever

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Re: Really? Did you seriously just say that out loud?
« Reply #10 on: June 16, 2013, 06:32:31 PM »
First of all, I want to offer my sympathies for what must be a very difficult and upsetting situation for all concerned. I really am sorry you have to go through this.

I would suggest, once the first question rears its ugly head, a reply of something along the lines of 'They've done everything possible already. Beandip?' And then, if they don't get the hint, end the conversation. Stand up, move towards the door, a phrase of 'Oh, dear, it was lovely to see you but I think 'Cousin' may be tiring/our favourite program is starting/the cat appears to have become a fireball/I'm sick of the sight of you.' Don't let anyone continue a vein of conversation you know is upsetting for anyone.

ETA Someone beat me to it - I thoroughly second Toots advice too, that's a very useful article to have in your weaponry.

Thank you for the caring thoughts...this is really hard, but I always think to myself, no matter how awful we feel about it,we are not the ones living it.  Amanda is in pain pretty much all the time now, despite the myriad of medications she is on.

It's amazing to me that people just won't.shut.up. even when we shoot them "the look of death", or, like today,when Amanda has tears streaming down her face. 
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TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #11 on: June 16, 2013, 06:36:30 PM »
It's amazing to me that people just won't.shut.up. even when we shoot them "the look of death", or, like today,when Amanda has tears streaming down her face.

Again, don't limit yourself to nonverbal communication. Don't be subtle. Don't bean-dip.

Speak up IMMEDIATELY--interrupt--say "Excuse me, I need to speak with you immediately in the other room, please"--take them physically by the arm and pull them out of the room so you can explain to them where Amanda can't hear you.

(of course the BEST solution is to not even get into that situation, so your desire to head it off, and the pre-visit communication you've learned you're going to need, is going to be far more powerful than any sort of interruption.)

TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #12 on: June 16, 2013, 06:38:50 PM »
Oh, add to your printout the following: 
 (without the brackets; they're just there to indicate where I've edited yoru words)

Quote
anything that could be done for her has been done, and ... questions [about her treatment or a cure] seem to imply that there is some treatment out there that she and her husband just aren't doing. It upsets [Amanda] and it makes him really angry and protective of his wife....  [Amanda] feels horrible for days after ... [these kinds of questions].

Dawse

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Re: Really? Did you seriously just say that out loud?
« Reply #13 on: June 16, 2013, 06:42:24 PM »


(of course the BEST solution is to not even get into that situation, so your desire to head it off, and the pre-visit communication you've learned you're going to need, is going to be far more powerful than any sort of interruption.)

This, I think. Sometimes, people can be genuinely clueless and have a brain-to-mouth-filter-breakdown, but as you say it's a continuing, repetitive occurrence it's probably time to get proactive and head this kind of thing off at the pass.

I love Toots' advice of a ready made printout of guidelines for when people come to visit, as sometimes people really don't know what to say and will be very grateful for the guidance. Plus, if they do then stray into forbidden territory, they have no excuse - you can simply frogmarch them outta there!
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TootsNYC

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Re: Really? Did you seriously just say that out loud?
« Reply #14 on: June 16, 2013, 06:44:56 PM »
(I seem to be dominating this thread--sorry!)

Another thought:

Please dont' feel hesitant about telling people what they should and should not say when visiting Amanda.

Their words can cause Amanda pain.

If you were speaking about actions--if sitting on the side of the bed would jostle her and cause her pain; if smoking around her would blow up her oxygen tank; if wearing perfume would cause her difficulty in breathing; if loud voices would cause a severe migraine--you absolutely would tell people before they came in the door. They would want you to.

The fact that this is words, and social, etc., doesn't actually change the situation.

You may be thinking that it's rude or out of line to tell people what they can talk about. But this is not a normal situation.

Because it would also be rude to tell people pre-emptively, "Don't speak loudly." In a normal situation. But it's NOT rude in a "sick-bed" situation.

And that's what this is. So don't hesitate. Don't be shy. Don't be nuanced, oblique, hinting, hesitant. Don't be any of those.

Be firm. And a bit fierce. As in, "fiercely protective."