Author Topic: Really? Did you seriously just say that out loud?  (Read 6156 times)

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kudeebee

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Re: Really? Did you seriously just say that out loud?
« Reply #30 on: June 16, 2013, 10:46:15 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.

Calypso

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Re: Really? Did you seriously just say that out loud?
« Reply #31 on: June 16, 2013, 11:32:21 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.

kareng57

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Re: Really? Did you seriously just say that out loud?
« Reply #32 on: June 16, 2013, 11:50:11 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".

katycoo

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Re: Really? Did you seriously just say that out loud?
« Reply #33 on: June 17, 2013, 12:12:38 AM »
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.

*inviteseller

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Re: Really? Did you seriously just say that out loud?
« Reply #34 on: June 17, 2013, 12:57:12 AM »
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.

PastryGoddess

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Re: Really? Did you seriously just say that out loud?
« Reply #35 on: June 17, 2013, 01:20:09 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.

wyliefool

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Re: Really? Did you seriously just say that out loud?
« Reply #36 on: June 17, 2013, 08:57:49 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?

NyaChan

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Re: Really? Did you seriously just say that out loud?
« Reply #37 on: June 17, 2013, 01:40:35 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.

rashea

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Re: Really? Did you seriously just say that out loud?
« Reply #38 on: June 17, 2013, 02:33:55 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.
"Manners change, principles don't. It's about treating people with consideration, respect and honesty." Peter Post

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cwm

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Re: Really? Did you seriously just say that out loud?
« Reply #39 on: June 17, 2013, 04:39:26 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.

sammycat

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Re: Really? Did you seriously just say that out loud?
« Reply #40 on: June 18, 2013, 05:20:23 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.

Winterlight

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Re: Really? Did you seriously just say that out loud?
« Reply #41 on: June 18, 2013, 11:21:33 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.
If wisdom’s ways you wisely seek,
Five things observe with care,
To whom you speak,
Of whom you speak,
And how, and when, and where.
Caroline Lake Ingalls

acicularis

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Re: Really? Did you seriously just say that out loud?
« Reply #42 on: June 18, 2013, 05:22:17 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.

baglady

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Re: Really? Did you seriously just say that out loud?
« Reply #43 on: June 18, 2013, 08:43:41 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.


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KB

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Re: Really? Did you seriously just say that out loud?
« Reply #44 on: June 19, 2013, 03:06:13 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.