Etiquette Hell

General Etiquette => Life...in general => Topic started by: Klein Bottle on June 16, 2013, 05:05:05 PM

Title: Really? Did you seriously just say that out loud?
Post by: Klein Bottle on June 16, 2013, 05:05:05 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.

Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:15:04 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:16:08 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:19:42 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Klein Bottle on June 16, 2013, 05:21:28 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!
Title: Re: Really? Did you seriously just say that out loud?
Post by: Dawse on June 16, 2013, 05:21:49 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:24:32 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Dawse on June 16, 2013, 05:28:48 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Klein Bottle on June 16, 2013, 05:29:41 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:31:23 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.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Klein Bottle on June 16, 2013, 05:32:31 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. 
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:36:30 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.)
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:38:50 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].
Title: Re: Really? Did you seriously just say that out loud?
Post by: Dawse on June 16, 2013, 05:42:24 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!
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 05:44:56 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."
Title: Re: Really? Did you seriously just say that out loud?
Post by: Sharnita on June 16, 2013, 06:33:38 PM
You know, while those comments you mention are not the best I really don't see them as implying that they aren't doing something they could - I see them as saying "I wish there was somethign more that could be done".
Title: Re: Really? Did you seriously just say that out loud?
Post by: veronaz on June 16, 2013, 06:39:10 PM
{{{hugs}}} OP for you and your cousin and her family.

ALS is such a cruel disease.  Hearing about or seeing someone with ALS really put things into perspective.

You’ve received some excellent advice and suggestions.

Just want to add a short story:
I know someone in her late 30s who has been diagnosed by several doctors with Retinitis pigmentosa, an eye disease.  Bottom line is that in a couple of years she will be totally blind.  She has been to so many doctors and nothing can be done.

Yet people say things like “Isn’t there something they can do?” or they say “My friend had lasik eye surgery and now she has 20/20 vision”.

It boggles the mind.  ::)
Title: Re: Really? Did you seriously just say that out loud?
Post by: PastryGoddess on June 16, 2013, 06:44:58 PM
You know, while those comments you mention are not the best I really don't see them as implying that they aren't doing something they could - I see them as saying "I wish there was somethign more that could be done".

*all you's are general*

Yes, but you don't say those things in front of the sick person or their caregivers.  That puts them in the position of having to comfort you.  A statement like this is best directed to people on outer rings, not inner rings.

At this time ALS is a terminal disease.  There is nothing that can be done except to ease the suffering for the person afflicted.  A statement like this only reminds them of the fact that nothing can be done to prevent the death of a loved family member. 
Title: Re: Really? Did you seriously just say that out loud?
Post by: veronaz on June 16, 2013, 06:51:05 PM
Quote
Yes, but you don't say those things in front of the sick person or their caregivers.

I completely agree.

I also feel that anyone with common sense and basic intelligence should know that if there was something that could be done, all concerned would have moved heaven and earth to see that it got done.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Allyson on June 16, 2013, 06:57:04 PM
I love the suggestions of what *is* Ok to say. Because so often people just...have no idea. They don't know if it's OK to talk about trivial, silly things when someone's going through something so major. They don't know if talking about the future is OK, because the person might not be there to experience it. They don't know if talking about similar experiences would be helpful, or sympathy-jacking. It's not an excuse for saying ridiculously insensitive things. But I think sometimes people genuinely can't figure out what is and isn't OK to talk about. And, for certain conversations, you might have some people who find something comforting that another would find dismissive.

My mother died of a terminal illness when I was 14, and I never heard so many insensitive comments while she was sick and after she died. People said ridiculous, appalling things. And these were not people who were jerks or trying to hurt me in most cases. But I think sometimes people have no idea what's OK to talk about. and I always hated having to deal with someone *else's* grief, or confusion.

So, yes, I'd absolutely say something ahead of time like 'You don't have to pretend that she's not sick, but Amanda would really rather talk about what the Lannisters got up to the season finale, than spend more time talking about her illness.' Because people may be afraid that talking about trivial matters would be insensitive.
Title: Re: Really? Did you seriously just say that out loud?
Post by: cicero on June 16, 2013, 07:00:05 PM
Hugs to you OP.

Toots gave such compassionate and thoughtful advice. I just want to add/reiterate: please don't feel that it is rude to pull someone out of the room when they behave so thoughtlessly (  whatever their intentions were, the outcome is thoughtless). This will give you control over the situation and help you to act as your cousin's voice. It almost sounds as if poeople think that because your cousin is disabled in one way, then she is also deaf. ( not the same situation but I notice this happens when i go with DS someplace - he is an adult with asperger's and a slight speech issue, but his IQ is higher than most people we meet and his hearing is fine, I hate it when people turn to me and ask about him -he is standing right there!)
Title: Re: Really? Did you seriously just say that out loud?
Post by: Klein Bottle on June 16, 2013, 07:10:37 PM
I want to respond to everyone individually, but I have to get over to Amanda's for the night, (and bring my print-out of that most excellent article for Paul to read!)  Tomorrow I will respond, because I appreciate the advice and caring very much.

Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 07:11:18 PM
I want to respond to everyone individually, but I have to get over to Amanda's for the night, (and bring my print-out of that most excellent article for Paul to read!)  Tomorrow I will respond, because I appreciate the advice and caring very much.

Don't feel you have to respond to us each individually.
Title: Re: Really? Did you seriously just say that out loud?
Post by: veronaz on June 16, 2013, 07:18:23 PM
psssst, OP.....whenever you need a break, feel free to PM me about "Breaking Bad" ANYTIME!! (I saw your post).  Seriously, I can go on and on for hours about that show.   ;)
Title: Re: Really? Did you seriously just say that out loud?
Post by: Sharnita on June 16, 2013, 07:30:10 PM
If it helps anyone in some of the circumstances mentioned, I recently ran into a book titled "How To Be A Friend to a Friend Who's Sick".  It covers a large variety of different kinds of cirumstances.
Title: Re: Really? Did you seriously just say that out loud?
Post by: NyaChan on June 16, 2013, 07:42:48 PM
You know, while those comments you mention are not the best I really don't see them as implying that they aren't doing something they could - I see them as saying "I wish there was somethign more that could be done".

That's how I am reading it too - it is really hard to know how to react or what to say in situations such as this.  I don't think the comments were meant to be hurtful or troubling.  Not the best thing to say? Absolutely, but I don't think any of them are actually trying to say that they think the husband & family are letting this woman die for no reason.

ETA:  This is not to say that you shouldn't feel free to monitor who gets in and who doesn't or remove someone who has upset your cousin. 

"Here, let's step out.  Now DistantSecondCousinTwiceRemoved, I am sure you did not intentionally do it, but saying things like that are very upsetting to cousin and her husband and in this difficult time, they need all of our support.  Let's give them some space for now.  I'll walk you out."
Title: Re: Really? Did you seriously just say that out loud?
Post by: TootsNYC on June 16, 2013, 07:52:25 PM
But NyaChan, all those examples you give are reactions. *After* the damage has been done.

And it is damage.

Far better to influence what gets said.

And you know what? Those aren't malicious things to say, but they ARE hurtful and thoughtless. And many of them spring from essentially a selfish reaction--they're all about how the person saying them feels, and how important it is to reassure THEM>

Human reaction, yes. We're all selfish at heart.

But selfish nonetheless.
Title: Re: Really? Did you seriously just say that out loud?
Post by: delabela on June 16, 2013, 07:59:18 PM
I can't really improve on the advice already given, but I did want to say that I hope you and her husband are reaching out for support for the two of you also - it's very difficult to be a caregiver. 

Good thoughts to all of you.
Title: Re: Really? Did you seriously just say that out loud?
Post by: sammycat on June 16, 2013, 08:09:02 PM
You know, while those comments you mention are not the best I really don't see them as implying that they aren't doing something they could - I see them as saying "I wish there was something more that could be done".

That's how I am reading it too - it is really hard to know how to react or what to say in situations such as this.  I don't think the comments were meant to be hurtful or troubling.  Not the best thing to say? Absolutely, but I don't think any of them are actually trying to say that they think the husband & family are letting this woman die for no reason.

ETA:  This is not to say that you shouldn't feel free to monitor who gets in and who doesn't or remove someone who has upset your cousin. 

"Here, let's step out.  Now DistantSecondCousinTwiceRemoved, I am sure you did not intentionally do it, but saying things like that are very upsetting to cousin and her husband and in this difficult time, they need all of our support.  Let's give them some space for now.  I'll walk you out."

So am I.

I'm not dismissing or minimising other people's reactions to these sorts of comments, as we all react in different ways, but I've had similar/identical things said to me in different situations, and I've taken to mean that the person was empathising/sympathising with me and just wishing there was something that could be done. I've never interpreted it negatively.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Roe on June 16, 2013, 08:10:17 PM
I'm sorry for everything your family is going through. (hugs)

Don't be subtle!  Don't beandip!  Be direct and be forceful.  You and her DH are her advocates so advocate for her. In this case, it really doesn't matter if you hurt someone else's feelings, what matter most now is your cousin...end.of.story.

Title: Re: Really? Did you seriously just say that out loud?
Post by: kudeebee on June 16, 2013, 09:46:15 PM
I see nothing wrong with greeting guests at the door and filling them in on what is going on.

Tell them something like "We are glad they are here to see cousin, she likes visitors and loves to talk about her kids, sports, crafts, memories, etc.  However, even though we know we don't need to say this, we need to mention to you not to talk about her illness or mention treatments, that surely more can be done, etc. as these upset her greatly and we know you wouldn't want to upset her.  We have a list of ideas for conversation if you would like to look at them."

Then, if they start in, quickly stop them--there are excellent suggestions by previous posters.  Even ask for their help in the kitchen to get them out of the room and them remind them.

I also like the idea of restricting who can visit.  At this stage, I would limit it to the people Amanda really needs/wants to see.

Hugs to your cousin, her family and you.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Calypso on June 16, 2013, 10:32:21 PM
The Wild One Forever, many many hugs and thoughts of love to you and Amanda and the rest of her family.

And Toots, thank you for linking one of the most useful and profound things I've read since....I can't remember since when.
Title: Re: Really? Did you seriously just say that out loud?
Post by: kareng57 on June 16, 2013, 10:50:11 PM
You know, while those comments you mention are not the best I really don't see them as implying that they aren't doing something they could - I see them as saying "I wish there was somethign more that could be done".

*all you's are general*

Yes, but you don't say those things in front of the sick person or their caregivers.  That puts them in the position of having to comfort you.  A statement like this is best directed to people on outer rings, not inner rings.

At this time ALS is a terminal disease.  There is nothing that can be done except to ease the suffering for the person afflicted.  A statement like this only reminds them of the fact that nothing can be done to prevent the death of a loved family member.


True, but I never held it against anyone who said anything like this when my Dh was declared terminal (it was a condition that was considered difficult to treat, but not usually terminal).  During the last few decades, we, as a society, have become accustomed to the idea that "there's always something else they can try", especially when the patient is still relatively young, such as under 65.  But often, there just is not.

People are human, and they might occasionally say things that they later regret.  I too would interpret it as "I wish there were more treatment options".
Title: Re: Really? Did you seriously just say that out loud?
Post by: katycoo on June 16, 2013, 11:12:38 PM
This statement is not directed at the OP, because I assume she and cousin's DH have already discussed it with Cousin.

However, generally speaking:

Just because the disabled person is still emotionally rattled by their condition, and you don't like seeing them upset, doesn't mean they are not an adult capable of making their own decisions.  Make sure that in your desire to be feircely protective and do you best to keep them nothing but as happy and content and comfortable as possible, that you don't make decision on their behalf without talking to them about it.

Some people may wish to talk about their illness, to cry with friends about what they've lost, and despair with friends about the lack of medical development.  Not all.  Maybe even not most.  But before you go telling people not to raise certain topics, make sure it is the wishes oft he person not to have those topics raised, and that its not truly the carer who is upset by seeing the emotions of the disabled person.
Title: Re: Really? Did you seriously just say that out loud?
Post by: *inviteseller on June 16, 2013, 11:57:12 PM
I feel for your cousin and your whole family.  Facing a terminal illness is horrible, especially when someone is young.  I think immediate redirection or removal of the relatives whose tongues get ahead of their brains is the best thing to do, but please cut them slack.  It is difficult to have someone you love go from healthy and vibrant to being unable to do the smallest things.  ALS is a horrific disease as it robs the body, but not the mind and your cousin is well aware of what is being said, but as upsetting as it is to her, her DH and you, please remember these relatives are at a loss and something this harsh makes people around the illness question their own immortality.  While it would be best to make sure their thoughts stay in their heads, they are probably just trying to wrap their heads around this illness and what it will mean to her DH and their kids, and are grasping at straws to find any kind of treatment that will help.  I would talk to these relatives/friends ahead of time and say, while the family appreciates their love and concern, to please keep conversations light...talk about good memories and tell her how much she means to them.
Title: Re: Really? Did you seriously just say that out loud?
Post by: PastryGoddess on June 17, 2013, 12:20:09 AM
I guess my point is that sometimes in the moment, you don't always think clearly.  And I am talking about both the person who is saying something and the person who has to hear it.

In hindsight, those comments could be taken as a wish that something more could be done or that things could be "fixed"  However, in the moment, those type of comments put the caregiver and/or person afflicted in the position of immediately having to comfort or reassure that person.  Whether it's going over the treatment options, or talking about what has already been done, the focus is moved off of the afflicted person.

I don't think that those type of comments should never ever be said, because as katycoo said, maybe the person does want to talk about it.  However, it's a know your audience and your place sort of thing.  Coming from a close relative may be ok, coming from an acquaintance of my dead mother...maybe not so much.
Title: Re: Really? Did you seriously just say that out loud?
Post by: wyliefool on June 17, 2013, 07:57:49 AM
Also, even if the person is saying 'oh I'm so terribly sorry that you're going to die so very young and in so much pain' they're reminding the person that that's what's happening. Good lord, how utterly thoughtless! Obviously they know what's happening but they don't need it said out loud by visitors. Gad! The point of visiting is to be uplifting, not a downer! Otherwise why bother?
Title: Re: Really? Did you seriously just say that out loud?
Post by: NyaChan on June 17, 2013, 12:40:35 PM
I have to be honest - it is hard to come into a situation like this when someone is dying and talk about happy things or the weather because even if it is not, it feels like I am being callous or indifferent to the severity of their situation. 

It is like going to a funeral and I don't want to ask the deceased's daughter how she is feeling because I know she must be devastated, or make it about me by talking about how I knew her mom, but asking her about her college plans makes it seem like I don't care that her mom is gone.  I have to make conversation, but it seems like everything is loaded with land mines.  I am sure that a lot of people are trying their best, not trying to hurt - if you know of topics that would be okay to talk about, then tell them on their way in, because otherwise, it may not be obvious to them.
Title: Re: Really? Did you seriously just say that out loud?
Post by: rashea on June 17, 2013, 01:33:55 PM
OP, my sympathies to you and your family.

I want to offer a suggestion that my family came up with when my grandmother was passing away. We created a book, and when people visited, they would leave a small note. She could read through those (or more likely we read them too her) when she was down. And it also made it possible for someone to say "oh, hey, I noticed you went out for breakfast with Katie, how was that?"

We still have that book, and I've read it cover to cover.
Title: Re: Really? Did you seriously just say that out loud?
Post by: cwm on June 17, 2013, 03:39:26 PM
OP, you have my sympathies. You're facing a very difficult situation and it sounds like you're doing all you can about it. Keep strong, and realize that the world isn't completly filled by people who will drop thoughtless comments.

During the last few decades, we, as a society, have become accustomed to the idea that "there's always something else they can try", especially when the patient is still relatively young, such as under 65.  But often, there just is not.

It's not just the relatively young. When my great-grandmother was dying (at 98) people kept asking why we hadn't considered XYZ treatment, or why ABC hadn't been done to help her. She was a cancer survivor from a young age and had survived surgery for a brain anyeurism in her early 60s, but we never discussed any of her illnesses. She was tired and it was time for her to go, and all of the people asking about other treatments and why didn't we try this or that only hurt the people left behind at that point. My great grandfather had the option (and used it frequently) of turning off his hearing aids so he didn't have to remember these people saying such hurtful things, but the rest of us had to live with it.

When great-grandpa got seriously ill the next year, it all happened again. I couldn't stand to visit him not because I didn't want to see him, but because I couldn't stand hearing what everyone else was saying. I estranged a great deal of relatives because I was the "unsupportive" one. Funny thing, though, they all disappeared when he got better and weren't seen again until the funeral, whereas I was the one living here and visiting him on a regular basis.
Title: Re: Really? Did you seriously just say that out loud?
Post by: sammycat on June 18, 2013, 04:20:23 AM
I have to be honest - it is hard to come into a situation like this when someone is dying and talk about happy things or the weather because even if it is not, it feels like I am being callous or indifferent to the severity of their situation. 

It is like going to a funeral and I don't want to ask the deceased's daughter how she is feeling because I know she must be devastated, or make it about me by talking about how I knew her mom, but asking her about her college plans makes it seem like I don't care that her mom is gone.  I have to make conversation, but it seems like everything is loaded with land mines.  I am sure that a lot of people are trying their best, not trying to hurt - if you know of topics that would be okay to talk about, then tell them on their way in, because otherwise, it may not be obvious to them.
POD.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Winterlight on June 18, 2013, 10:21:33 AM
I see nothing wrong with greeting guests at the door and filling them in on what is going on.

Tell them something like "We are glad they are here to see cousin, she likes visitors and loves to talk about her kids, sports, crafts, memories, etc.  However, even though we know we don't need to say this, we need to mention to you not to talk about her illness or mention treatments, that surely more can be done, etc. as these upset her greatly and we know you wouldn't want to upset her.  We have a list of ideas for conversation if you would like to look at them."

Then, if they start in, quickly stop them--there are excellent suggestions by previous posters.  Even ask for their help in the kitchen to get them out of the room and them remind them.

I also like the idea of restricting who can visit.  At this stage, I would limit it to the people Amanda really needs/wants to see.

Hugs to your cousin, her family and you.

This.

And if necessary, frog-march them out of the room. Protecting your cousin is the important thing here.
Title: Re: Really? Did you seriously just say that out loud?
Post by: acicularis on June 18, 2013, 04:22:17 PM
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.

I agree with those who have said to meet people at the door and tell them exactly this. And absolutely tell them how she feels horrible for days after visits when people make inappropriate remarks. People who get offended by this or can't follow these guidelines may need to be told not to come back. Because no matter how much they are hurting, no matter how much they may mean well, they don't have the right to say whatever they want at her expense. Her needs and feelings matter more than anyone else's right now.
Title: Re: Really? Did you seriously just say that out loud?
Post by: baglady on June 18, 2013, 07:43:41 PM
Disclaimer: OP, I'm not accusing you of causing this. It just is. And (((((((((((hugs))))))))))) for you, Amanda and the family.

But this is why people don't visit the dying, and why we occasionally get threads about "When ___ was diagnosed with terminal illness, all our friends just vaporized." People are terrified of making a bad situation worse. Someone upthread called it a "minefield." Do you talk about the illness/how you wish more could be done/how you're going to miss the person when s/he is gone? Or do you ignore the elephant in the room and talk about the weather, or all the other life stuff that the patient has lost or is going to miss out on? Either one could be upsetting, and there's no way to know going in. So people stay away.

Here's an idea: Give visitors something to do besides sit and chat and feel awkward. They could read to Amanda, or watch a TV show or movie with her. This would fill the conversational vacuum and also provide some talking points that have nothing to do with her illness.


Title: Re: Really? Did you seriously just say that out loud?
Post by: KB on June 19, 2013, 02:06:13 AM
Here's an idea: Give visitors something to do besides sit and chat and feel awkward. They could read to Amanda, or watch a TV show or movie with her. This would fill the conversational vacuum and also provide some talking points that have nothing to do with her illness.

This is an excellent suggestion as long as the visitors are also told 'when I give you the wink, the visit's over' so that it doesn't exhaust Amanda.

The flip-side of the situation badlady has correctly identified is the fact that people with terminal illnesses often turn away from friends/distant relatives and prefer the company only of their immediate family and those closest to them. It can look bad to those people who are shut out, particularly if it is the family who have to pass on the 'he/she doesn't want to see you/is tired/is not having a good day' messages, but it is not something that anyone can (or really should try to) change as it is the dying person reserving their energy for those they are closest to and love best.
Title: Re: Really? Did you seriously just say that out loud?
Post by: AngelicGamer on June 19, 2013, 09:55:58 AM
Here's an idea: Give visitors something to do besides sit and chat and feel awkward. They could read to Amanda, or watch a TV show or movie with her. This would fill the conversational vacuum and also provide some talking points that have nothing to do with her illness.

This is an excellent suggestion as long as the visitors are also told 'when I give you the wink, the visit's over' so that it doesn't exhaust Amanda.

The flip-side of the situation badlady has correctly identified is the fact that people with terminal illnesses often turn away from friends/distant relatives and prefer the company only of their immediate family and those closest to them. It can look bad to those people who are shut out, particularly if it is the family who have to pass on the 'he/she doesn't want to see you/is tired/is not having a good day' messages, but it is not something that anyone can (or really should try to) change as it is the dying person reserving their energy for those they are closest to and love best.

To the bolded - my grandma didn't have a terminal illness, but right after she turned 90, she had to conserve her energy because she'd get tired really fast.  It turned out that it was due to her anemia, but even with meds, she'd have to save up energy.  Since I was the one at home in the caretaker role, I was the gatekeeper and the one saying about "oh she's too tired for visitors".  Her friends accepted this until her stroke and then got really mad at me because they wanted to come see her while we were trying to conserve our energy for our family.  I'm not sorry that they got angry with me because, as someone very wise on EHell said "they'll either get over it or die angry".  I am very happy with the memories I do have due to my grandma being able to focus her energy on us and all the energy my mom, aunt, and I was able to save in order to focus on helping our cousins when they came to visit. 

So, OP, (((hugs))) to you, your cousin, and her DH.  If you have to be the gatekeeper, I would do it.  It is hard as heck when you have to do it but it is so rewarding in the end.
Title: Re: Really? Did you seriously just say that out loud?
Post by: Klein Bottle on June 19, 2013, 11:02:17 AM
Thanks so much for all the thoughtful responses and different perspectives, not to mention all the hugs and good wishes.  It is all appreciated more than I can express. 

I had wanted to address a couple valid points posters had brought up.  First, I totally get it that the subtext of the unwanted comments is that these folks care, and are heartbroken,and are gobsmacked that there is no cure to be had for Amanda.  To me , the nuances are apparent, but not so much for Paul.  He tends toward being a very literal-minded person, and takes most things at face value.  He is also very protective of his wife.  As for Amanda, she is so emotionally raw and vulnerable right now, (and the physical pain exacerbates her emotional state),that she also takes the comments to heart.  In her previous life, before she got sick, she was a person who let anything negative roll right off her like water off a duck, but that has changed.  It is for these reasons that I want to make them stop. 

Miss Linda, the friend of my late aunt who showed up Sunday, has always been very close to Amanda, acting in the role of an aunt to her and her brother, Kevin.  She is also very good to Carlee and Gracie, Amanda's daughters.  She takes Carlee shopping, bakes cookies with her, brings her over to swim in her pool,etc.  She is a super good person, just not all that bright, and kind of clueless.  Nobody comes to Paul and Amanda's house that they do not want visiting, and there is no "just dropping in"without calling.  (I am sorry if my original post was unclear in that regard.  Reading it over, it does seem to be implied that way.  Sorry!) 

I made several copies of Toot's wonderful article, and I am going to show it to Pauland go over it with him after his mom leaves; she is in town from out of state visiting, and to attend a memorial service for her own mother, Paul's grandmother, who died last month.  So, when things settle down, I am going to present it to him, and I think he is going to be very thankful for it, and implement its use for all who visit.  My idea is to send emails to everyone who visits or who might visit in the future, and attach a copy of the article.  Do y'all think this is overkill?  I will only do so with Pail's imprimatur, and I will make the email very polite, non-accusatory, and in the tone of "we are all on the same side, here", if that makes sense.

As for conversational topics, if everyone would just follow Amanda's lead, we'd be golden.  Sometimes she *does* talk about her disease, and she is willing to answer questions about it.  It's sadly the biggest part of her life right now, and not to talk about it at all would seem ridiculous.  However, there are questions, and then there are "those" questions.  The vast majority of people who come over know the difference instinctively, but there have been three or four clueless ones, and we don't know how many more are out there.    ;D

Baglady, the more I think about your suggestion of putting a movie on when folks visit, the more I like it!  I am going to suggest this to Amanda when I go to stay over tonight.  Good looking out!    :)

Veronaz, I have already informed Paul and Amanda that, starting August 11th, they are going to have to choose another night besides Sunday to be one of my regular nights.    ;D  Sunday nights watching Breaking Bad is sacrosanct time for my son and me!  We also watch Walking Dead together when it's on instead.  That is our family night and I won't give it up, because my kid is 16 and a half now, and won't be with me but for another couple short years, then it's off to college.  So, they will have to choose another night, which they are fine with.  (They never fail to show their appreciation to me, and although I'm not in it for any "glory", it's nice to be thanked.)

Thanks again for all the wonderful comments.  For some reason, I have not really posted anything till now about the ALS, but now I wish I had.  The caring makes me feel less alone in this.  I am going to tell Amanda about the comments, too, as I know she will enjoy hearing about them!  God bless everyone.