Author Topic: Really? Did you seriously just say that out loud?  (Read 6380 times)

0 Members and 1 Guest are viewing this topic.

Sharnita

  • Super Hero!
  • ****
  • Posts: 21686
Re: Really? Did you seriously just say that out loud?
« Reply #15 on: June 16, 2013, 07:33:38 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".

veronaz

  • Hero Member
  • ***
  • Posts: 2225
Re: Really? Did you seriously just say that out loud?
« Reply #16 on: June 16, 2013, 07:39:10 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.  ::)
« Last Edit: June 16, 2013, 07:41:13 PM by veronaz »

PastryGoddess

  • Super Hero!
  • ****
  • Posts: 5219
    • My Image Portfolio and Store
Re: Really? Did you seriously just say that out loud?
« Reply #17 on: June 16, 2013, 07:44:58 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. 

veronaz

  • Hero Member
  • ***
  • Posts: 2225
Re: Really? Did you seriously just say that out loud?
« Reply #18 on: June 16, 2013, 07:51:05 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.

Allyson

  • Hero Member
  • ***
  • Posts: 2066
Re: Really? Did you seriously just say that out loud?
« Reply #19 on: June 16, 2013, 07:57:04 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.

cicero

  • Super Hero!
  • ****
  • Posts: 17959
Re: Really? Did you seriously just say that out loud?
« Reply #20 on: June 16, 2013, 08:00:05 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!)
« Last Edit: June 16, 2013, 08:13:50 PM by cicero »

            Created by MyFitnessPal.com - Free Weight Loss Tools

The Wild One, Forever

  • Hero Member
  • ***
  • Posts: 1855
Re: Really? Did you seriously just say that out loud?
« Reply #21 on: June 16, 2013, 08:10:37 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.

Soft silly music is meaningful, magical

TootsNYC

  • A Pillar of the Forum
  • *****
  • Posts: 31774
Re: Really? Did you seriously just say that out loud?
« Reply #22 on: June 16, 2013, 08:11:18 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.

veronaz

  • Hero Member
  • ***
  • Posts: 2225
Re: Really? Did you seriously just say that out loud?
« Reply #23 on: June 16, 2013, 08:18:23 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.   ;)

Sharnita

  • Super Hero!
  • ****
  • Posts: 21686
Re: Really? Did you seriously just say that out loud?
« Reply #24 on: June 16, 2013, 08:30:10 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.

NyaChan

  • Hero Member
  • ***
  • Posts: 4107
Re: Really? Did you seriously just say that out loud?
« Reply #25 on: June 16, 2013, 08:42:48 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."
« Last Edit: June 16, 2013, 08:45:11 PM by NyaChan »

TootsNYC

  • A Pillar of the Forum
  • *****
  • Posts: 31774
Re: Really? Did you seriously just say that out loud?
« Reply #26 on: June 16, 2013, 08:52:25 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.

delabela

  • Member
  • **
  • Posts: 592
Re: Really? Did you seriously just say that out loud?
« Reply #27 on: June 16, 2013, 08:59:18 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.

sammycat

  • Super Hero!
  • ****
  • Posts: 6217
Re: Really? Did you seriously just say that out loud?
« Reply #28 on: June 16, 2013, 09:09:02 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.

Roe

  • Super Hero!
  • ****
  • Posts: 6484
Re: Really? Did you seriously just say that out loud?
« Reply #29 on: June 16, 2013, 09:10:17 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.