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Bad Manners and Brimstone
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#Post#: 23974--------------------------------------------------
Thanks, But Maybe Not So Much?!?!
By: Jem Date: January 14, 2019, 12:46 pm
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I am not sure where this belongs but I put it here because it
involves my sister and her family.
My sister was recently diagnosed with aggressive (but treatable)
breast cancer. It is high grade and she is triple negative
(meaning chemo may not be as effective). We don’t have
information on stage yet, but we are all trying to be positive.
Her friends from church and work are being extremely
supportive.....almost to the point of not being helpful. They
are asking me for information and while I don’t struggle with
following my sister’s lead regarding what to share publicly
regarding her medical diagnosis, I don’t know whether I should
tell her friends and co-workers to, I guess, back off a bit? My
sister has said she feels supported by texts and cards, or
planned walks, but drained by in person “surprise” visits to her
home and phone calls where she ends up in tears and sharing the
same emotionally draining information over and over.
As background, my sister and her husband have four kids ages 12,
13, 13 and 15. All of them are active in music and sports and
school. They are a well oiled machine with juggling the various
schedules and setting up rides, etc. Their household is rarely
just sitting around doing nothing. Not even since the diagnosis.
The friends and co-workers keep dropping by unannounced and
while it’s great they are showing their love and concern, it’s
stressing her family out to feel like they need to stop what
they are doing to entertain visitors. It’s also really draining
to share the same information over and over in person when
people were not invited over and the house and occupants are not
ready for company. My sister and her husband wish to keep things
as normal as possible for the kids.
Tomorrow is my sister’s first chemo appointment. She asked her
husband and me to accompany her, and we are. But the friends and
coworkers keep asking me when she will be leaving so they can
“surprise” her with balloons and donuts, etc. I cannot speak for
my sister, and I don’t want to blow the “surprise,” but if were
me I would NOT want all these people “surprising” me early in
the morning on a very scary and emotional day.
Should I just do my own thing and let the friends and coworkers
be supportive as they feel best? Or should I suggest maybe the
early morning chemo send off is not the best idea?
#Post#: 23975--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: DaDancingPsych Date: January 14, 2019, 1:05 pm
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You know your sister. If you really feel that she is over these
surprises, then I would speak up. "Sister really appreciates all
the support, but she is becoming overwhelmed with the surprise
visitors. I think she would prefer that you do X, Y, or Z rather
than the donuts." Or "I think she would prefer if you hold off
on the donut surprise at a later point when she may want more
support."
Also, I think that this is one of those situations where if you
sense that your sister is overwhelmed that it would be ok to
spoil the surprise. "Your coworkers are asking me about
tomorrow, as I sense that they are planning something. Would you
prefer that I share the details or ask them to hold off?" You
don't have to tell what the something (balloons and donuts) is,
but it sounds to me like your sister wants more control in how
things are rolling. I would help her have that.
Finally, I would advise my sister that she does not need to
accept surprise visitors when she does not feel up to it. Her
husband and even her kids (they are old enough) can be trained
to turn people away. "I wish you had called, as I / DW / Mom is
feeling tired so we are not accepting guests today. I / She will
call you later and maybe a visit can be planned."
#Post#: 23976--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: guest657 Date: January 14, 2019, 1:06 pm
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I think if anyone asks you about how/when/where to support your
sister, and you know the thing they are suggesting is unwanted
and unwelcome, tell them!
They want to be kind, not to stress her out. If nobody tells
them, they will keep doing it. That's not being kind to your
sister or to them.
"Actually, Sister prefers to get texts and cards, or plan
something in advance, like a nice walk. She does not want to be
surprised at home. She doesn't like drop-in visitors. It upsets
her and the kids, and stresses the whole family out out, so
please don't. And if you could share that around, you'd be doing
her a favor. She does not need to be stressed right now."
One of the really important roles when a family is dealing with
health issues, is the "gatekeeper" role. You are ideally
positioned to do this. Your sister is vulnerable and emotionally
overwhelmed right now, and "bouncing" these well-meaning people,
by directing them into gestures that are truly helpful and
meaningful, is a fantastic opportunity for you to have your
sister's back in a really concrete way.
They are asking because they want to be nice. And by asking you,
they are doing the right thing - they are checking before they
do it! Tell them the truth about what would be appreciated, and
what isn't.
Spreading the word generally that dropins aren't helpful, or
encouraging your brother-in-law to tell dropper-inners that this
isn't a good time, or even making a sign for the door like, "We
appreciate the support of our friends, but please - no drop-in
visits! Call or email us to arrange a good time." These are all
good and perfectly polite ways to help your sister's family in
this stressful time.
#Post#: 23977--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: TootsNYC Date: January 14, 2019, 1:08 pm
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Oh, Jem, I am so sorry to hear!
All my sympathies. I wish I could send you strength.
Your sister is the point, and nobody else's feelings matter. SO
no, I don't htink you should let people support your sister in
the way they personally feel is best.
Fight for your sister by preserving her energy and her time.
It'll be more work for you, but it's a gift that probably ONLY
YOU can give her.
First, call those people and say, "Do not show up after this
appointment. She will not enjoy that. This is a serious time,
and you can support her best by staying home and praying. We
will be in touch when we need something."
Sign up for Caring Bridge, pronto, and ask your sister who she
wants to manage it for her--you, maybe, but maybe a few other
people as well. Then always be guided by her when you decide
what to put up.
HTML https://www.caringbridge.org/
This will let you create a central space that EVERYONE should go
to for info. No one is to call anyone to ask anything anymore.
Then get the info about that into everyone's hands as FAST as
possible. (more on CaringBridge later)
I suggest you:
Find that article about the Ring Theory, "circles of support"
(support in, dump out).
HTML http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
Print it out. Write up your own addendum, with info about how
having to give the same info to everyone is devastating to your
sister, because it's one conversation for them, but multiple for
HER. And how so often your sister ends up feeling that she is
now responsible for supporting THEM, and THEIR emotions.
Explicitly say that they may feel they are showing support by
expressing their shock and horror, but that it is devastating
for your sister.
That may feel rude--but it is crucially necessary. People
need to hear the detail of what kind of burden their support
actually is. Tell them.
YOU can tell them, because you are protecting your sister,
and that gives you HUGE IMMUNITY for all sorts of things. Use
it.
Then tell them what they CAN do, if anything. They can help your
sister by restricting their support to messages on the
CaringBridge site instead of calling; tell them that you'll read
her the messages faithfully, so their support will come through.
Tell them that you will be setting up teams of people to provide
food, or a ride, or watching the pets, etc., and ask them to
think about what they'd be able to do. If they thing cooking for
the family is something they'd like to do, they can make lasagna
today and freeze it now so they can bring it over later, when
it's needed.
Re: CaringBridge, and info. One of the problems is that we
sometimes give people too much info. We say, "there's a
follow-up appointment," and then these people have latched onto
that. But they didn't need to know that detail, and if you'd had
any clue they were going to treat the appointment in this way,
you wouldn't have told them.
So be mindful in what you choose to put on CaringBridge (I don't
remember if you could have "inner circle" and "broader world"
groups or not--maybe), and be ready and willing to change your
pattern to either less info or more, depending on how things go.
#Post#: 23978--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: DaDancingPsych Date: January 14, 2019, 1:08 pm
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[quote author=Anon4Now link=topic=943.msg23976#msg23976
date=1547492776]
I think if anyone asks you about how/when/where to support your
sister, and you know the thing they are suggesting is unwanted
and unwelcome, tell them!
They want to be kind, not to stress her out. If nobody tells
them, they will keep doing it. That's not being kind to your
sister or to them.
"Actually, Sister prefers to get texts and cards, or plan
something in advance, like a nice walk. She does not want to be
surprised at home. She doesn't like drop-in visitors. It upsets
her and the kids, and stresses the whole family out out, so
please don't. And if you could share that around, you'd be doing
her a favor. She does not need to be stressed right now."
One of the really important roles when a family is dealing with
health issues, is the "gatekeeper" role. You are ideally
positioned to do this. Your sister is vulnerable and emotionally
overwhelmed right now, and "bouncing" these well-meaning people,
by directing them into gestures that are truly helpful and
meaningful, is a fantastic opportunity for you to have your
sister's back in a really concrete way.
They are asking because they want to be nice. And by asking you,
they are doing the right thing - they are checking before they
do it! Tell them the truth about what would be appreciated, and
what isn't.
Spreading the word generally that dropins aren't helpful, or
encouraging your brother-in-law to tell dropper-inners that this
isn't a good time, or even making a sign for the door like, "We
appreciate the support of our friends, but please - no drop-in
visits! Call or email us to arrange a good time." These are all
good and perfectly polite ways to help your sister's family in
this stressful time.
[/quote]
This is so much better than what I typed. I agree!
#Post#: 23979--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: gramma dishes Date: January 14, 2019, 1:09 pm
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[quote author=Jem link=topic=943.msg23974#msg23974
date=1547491597]
... Or should I suggest maybe the early morning chemo send off
is not the best idea?
[/quote]
Oh PLEASE! On your sister's behalf, please, please, please tell
your sister's friends, neighbors and co-workers that you sister
very much prefers to keep this whole thing very low key right
now and too much attention at this time is having the opposite
effect from that intended.
Thank them sincerely, but ask them to back off and let your
sister and her family continue to lead as normal a life as
possible while treatment is being determined and initiated. If
you need to, ask them if at some point in the future should her
teens need a ride somewhere would they be able to drive or
something like that. That let's them feel less helpless but
keeps them from being interfering right now.
#Post#: 23980--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: Dazi Date: January 14, 2019, 1:11 pm
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EGADS, NO! Stop these people. You know your sister doesn't like
surprise visitors and her first day of chemo is going to be a
physically and emotionally exhausting day.
Suggest perhaps they organize a meal train and ONE person comes
over at a time with a few days to a week's worth of prepared
meals. Don't be shy about telling them that your sister cannot
deal with more than one or two visitors at a time and that she
absolutely must have warning that they are coming over. Any
reasonable person will be fine with that.
Your sister needs you and her husband to run interference.
#Post#: 23981--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: TootsNYC Date: January 14, 2019, 1:11 pm
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I read of someone who wrote a piece about how to talk to her
sister, who had a fatal illness, and taped it to the front door
of the sister's apartment, so NOBODY could miss it. Because
otherwise, people would go on and on TO THE SISTER about how
devastating this was going to be for the sister's young kids,
etc., etc.
Which of course was even MORE devastating.
Get bossy here.
So many people have said: These people did the right thing by
asking.
True.
So do the right thing back, and tell them the truth. "This is
what's helpful. This isn't."
#Post#: 23982--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: Luci Date: January 14, 2019, 1:17 pm
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How many people cannot know this? I am amazed. My children don’t
even drop in without calling. Definitely find a way to nicely
tell people that Sis has an exhausting day ahead of her and a
send off would not be a good idea. I also think the activity may
make it seem like a more threatening thing than you hope, which
is scary enough, for sure.
Your family is blessed to have so many people who care. It’s sad
that is is a burden. Usually people are not offended by the sign
that says no visitors, thanks for caring .
Hugs and prayers to her, family, and friends.
#Post#: 23983--------------------------------------------------
Re: Thanks, But Maybe Not So Much?!?!
By: lisastitch Date: January 14, 2019, 1:41 pm
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I agree with setting up a Caring Bridge account for her. You,
her DH, or she could update it, and then direct friends to check
there first. (I think that if you set up an account, you get an
email alert if there's a new update) I set one up for a
friend's husband, so he could update us more easily on how she
was doing and not have to be constantly repeating information.
And, yes, tell people that she feels very supported by texts,
cards, and planned visits, but that surprise visits are hard
because the family is trying to keep their normal life going.
Hugs to you and her and the rest of the family in this hard
time.
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