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What about this acronym to describe us

Posted by Suppiskey2surv @suppiskey2surv, Oct 6 10:05am

You people have probably figured out what I'm like by now, even though I haven't been on this forum all that long, right?

So, this morning, sipping my morning coffee today (Caramel flavored, BTW) . . .

I came up with this acronym to describe us. Let me know what you think . . . How about "CUTE"?

Caregivers
Unite
To
Encourage

Maybe it was the caffeine or maybe it's just my TYPE A personality but I thought it "cute" . . . Haaaaa.

I realize I may be in a bit different place than the rest of you may be in, as our situation (at least for now) . . . is in a sort of "holding" pattern and things (thankfully) are at a different point than some of you and I probably have wayyyyyy more time on my hands than we used to, but after what we've endured for so long now . . . it feels good. Anyone else out there who may have had one thing happen after another, and are just living in a state of limbo right now?

My husband has an appointment this Wednesday with a surgical oncologist in the pancreatic cancer prevention clinic to go over his latest MRCP scan that he had done last week. They're watching that IPMN on his pancreas ("only" at a 1.5 x 1.7 cm size) . . . but they will be watching it here, hopefully, (with Mayo's recommendations that it be monitored yearly) for change. He has other cysts that have showed up on previous scans (i.e., his liver, kidneys, etc.) but are focusing, apparently, on that IPMN. Things have been noted as stable and, most likely, are non-cancerous . . . and he feels pretty good most of the time . . . but, as I've posted before . . . that dang kidney disease of his (MGN) complicates things a bit more than the average person.

Anyhow . . . let me know what you think of my acronym to describe us.

Best wishes to everyone!
Dawn

Interested in more discussions like this? Go to the Caregivers Support Group.

Profile picture for janna2
janna2 | @janna2 | Oct 6 10:53am

Absolutely understand about the one thing after another😂🤣. And the 🕺limbo line is long. I’ve changed my “what else can happen” line to “But wait! There’s more” 😜

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sillyblone | @sillyblone | Oct 6 12:28pm

I like it. Sitting here in rehab where my spouse gets his PT/ST. Shower did not go well today. He always does this. "You are ordering and yelling at him". No, the shower is 12ft.high. But it is what it is. He scratched me and said "watch what you doing". No, he scratched me". No accountabilty for anything ever. No "I am sorry or thank you".He said it is my job. Like I am employed by him. No, I am your wife and why are you pleasant to everyone except me? He knows how to be kind. So please , understand it gets old being treated disrespect. If he was confused I would take it in a heartbeat.Caregiving is not just ugly words being said to you and then get to a rehab center and he is smiling and asked how they are? I am not needing criticism from anyone as my spouse knows what he is saying! How about ask how I feel.?Did you get a good nights sleep? I will agree that when there is confusion it is not about me. He gets his meals , bathing , appts. made and driven to his appts. But , I feel we need to start watching what we say towards others. I was told on this forum.. It is not about me! I am not a child and I don't need to be scolded. Kindness goes a long ways!

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1 reply
Profile picture for Suppiskey2surv
Suppiskey2surv | @suppiskey2surv | Oct 6 1:15pm
In reply to @sillyblone "I like it. Sitting here in rehab where my spouse gets his PT/ST. Shower did not..." + (show)
Profile picture for sillyblone @sillyblone

I like it. Sitting here in rehab where my spouse gets his PT/ST. Shower did not go well today. He always does this. "You are ordering and yelling at him". No, the shower is 12ft.high. But it is what it is. He scratched me and said "watch what you doing". No, he scratched me". No accountabilty for anything ever. No "I am sorry or thank you".He said it is my job. Like I am employed by him. No, I am your wife and why are you pleasant to everyone except me? He knows how to be kind. So please , understand it gets old being treated disrespect. If he was confused I would take it in a heartbeat.Caregiving is not just ugly words being said to you and then get to a rehab center and he is smiling and asked how they are? I am not needing criticism from anyone as my spouse knows what he is saying! How about ask how I feel.?Did you get a good nights sleep? I will agree that when there is confusion it is not about me. He gets his meals , bathing , appts. made and driven to his appts. But , I feel we need to start watching what we say towards others. I was told on this forum.. It is not about me! I am not a child and I don't need to be scolded. Kindness goes a long ways!

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@sillyblone

Glad you liked the acronym . . . Even my husband thought it was cute, even though I can tell he absolutely hates when I sit down to the computer to write anything to anyone. So, thought that a moment of progress there.

I get it about his being kinder to others than he may be to you sometimes, for sure! My husband gives more attention to everyone else's needs and is so much more polite to people he doesn't even know sometimes . . . holding the door open, asking them how they're doing . . . . stuff like that. And that part of "It's your 'job' " . . . . ummmmm, yup . . . at one point he told me or someone else. I can't remember now but he said it out loud that it was my "job". Boy, that really got me going . . . .

And . . . for anyone to say to any of us that it's not about "US" . . . . All I can say to that is, "You don't know what you're talking about." Of course it's about "US" . . . What? Are we invisible or something? And, what? All those things that need tending to are done by whom, exactly???? Those dang fairies???? This stuff doesn't get done by some magic act. YES, serious illness is horrible for anyone to go through . . . and the "patient" needs what they need; but, for Pete's sake . . . . so does the person all eyes turn to when something does or doesn't get done. And if venting keeps us sane . . . . and support isn't offered for this part of the equation anywhere within the "system" . . . only scolding, judgmental platitudes are being thrown out there, well then the person witnessing it all doesn't know a flying fig what they're talking about.

Love to you, Sillyblone . . . . can't wait until the powers that be give me personal messaging rights? By chance, do you know how long that takes?

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3 replies
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Suppiskey2surv | @suppiskey2surv | Oct 6 1:16pm
In reply to @janna2 "Absolutely understand about the one thing after another😂🤣. And the 🕺limbo line is long. I’ve changed..." + (show)
Profile picture for janna2 @janna2

Absolutely understand about the one thing after another😂🤣. And the 🕺limbo line is long. I’ve changed my “what else can happen” line to “But wait! There’s more” 😜

Jump to this post

@janna2

So true, my friend. Your story is one for the record, that's for sure. Please write whenever you need to. I'm retired with wayyyyyy too much time on my hands.

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Profile picture for sillyblone
sillyblone | @sillyblone | Oct 6 3:44pm
In reply to @suppiskey2surv "@sillyblone Glad you liked the acronym . . . Even my husband thought it was cute,..." + (show)
Profile picture for Suppiskey2surv @suppiskey2surv

@sillyblone

Glad you liked the acronym . . . Even my husband thought it was cute, even though I can tell he absolutely hates when I sit down to the computer to write anything to anyone. So, thought that a moment of progress there.

I get it about his being kinder to others than he may be to you sometimes, for sure! My husband gives more attention to everyone else's needs and is so much more polite to people he doesn't even know sometimes . . . holding the door open, asking them how they're doing . . . . stuff like that. And that part of "It's your 'job' " . . . . ummmmm, yup . . . at one point he told me or someone else. I can't remember now but he said it out loud that it was my "job". Boy, that really got me going . . . .

And . . . for anyone to say to any of us that it's not about "US" . . . . All I can say to that is, "You don't know what you're talking about." Of course it's about "US" . . . What? Are we invisible or something? And, what? All those things that need tending to are done by whom, exactly???? Those dang fairies???? This stuff doesn't get done by some magic act. YES, serious illness is horrible for anyone to go through . . . and the "patient" needs what they need; but, for Pete's sake . . . . so does the person all eyes turn to when something does or doesn't get done. And if venting keeps us sane . . . . and support isn't offered for this part of the equation anywhere within the "system" . . . only scolding, judgmental platitudes are being thrown out there, well then the person witnessing it all doesn't know a flying fig what they're talking about.

Love to you, Sillyblone . . . . can't wait until the powers that be give me personal messaging rights? By chance, do you know how long that takes?

Jump to this post

@suppiskey2surv Got to love a strong women and a twin to boot!!! When my spouse got into the card he looked somber and sad! He said "I am so sorry honey, I was wrong". Imagine that! He knew he blew it! He also did at the time! Gotta love it though! I decided to take him out for lunch for his comment!💕💕🫂

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 6 10:33pm
In reply to @suppiskey2surv "@sillyblone Glad you liked the acronym . . . Even my husband thought it was cute,..." + (show)
Profile picture for Suppiskey2surv @suppiskey2surv

@sillyblone

Glad you liked the acronym . . . Even my husband thought it was cute, even though I can tell he absolutely hates when I sit down to the computer to write anything to anyone. So, thought that a moment of progress there.

I get it about his being kinder to others than he may be to you sometimes, for sure! My husband gives more attention to everyone else's needs and is so much more polite to people he doesn't even know sometimes . . . holding the door open, asking them how they're doing . . . . stuff like that. And that part of "It's your 'job' " . . . . ummmmm, yup . . . at one point he told me or someone else. I can't remember now but he said it out loud that it was my "job". Boy, that really got me going . . . .

And . . . for anyone to say to any of us that it's not about "US" . . . . All I can say to that is, "You don't know what you're talking about." Of course it's about "US" . . . What? Are we invisible or something? And, what? All those things that need tending to are done by whom, exactly???? Those dang fairies???? This stuff doesn't get done by some magic act. YES, serious illness is horrible for anyone to go through . . . and the "patient" needs what they need; but, for Pete's sake . . . . so does the person all eyes turn to when something does or doesn't get done. And if venting keeps us sane . . . . and support isn't offered for this part of the equation anywhere within the "system" . . . only scolding, judgmental platitudes are being thrown out there, well then the person witnessing it all doesn't know a flying fig what they're talking about.

Love to you, Sillyblone . . . . can't wait until the powers that be give me personal messaging rights? By chance, do you know how long that takes?

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@suppiskey2surv
Are you wishing to use Private Messages? Have you been told that it’s not the right time?
Go to the right-hand side of this page (or whatever page you’re on) and find the ‘New to Mayo Clinic Connect’ box. Click on the blue sentence that says, ‘Tips on How to Use the Site’
Send me a message!

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1 reply
Profile picture for Suppiskey2surv
Suppiskey2surv | @suppiskey2surv | Oct 7 8:13am

Nope . . . I tried to connect to the private messaging that way and it didn't work this morning. BUT, last night I decided to send a message to a moderator who wrote back and said that I should be able to do that in a few days. I understand why protocols need to be in place. I get it. So, because I only joined on the 1st of the month, I think it's just too early. Patience is not one of my strong attributes; but, "WAIT" I shall.

Thanks, though!

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sillyblone | @sillyblone | Oct 7 10:19am
In reply to @becsbuddy "@suppiskey2surv Are you wishing to use Private Messages? Have you been told that it’s not the..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@suppiskey2surv
Are you wishing to use Private Messages? Have you been told that it’s not the right time?
Go to the right-hand side of this page (or whatever page you’re on) and find the ‘New to Mayo Clinic Connect’ box. Click on the blue sentence that says, ‘Tips on How to Use the Site’
Send me a message!

Jump to this post

@becsbuddy
Ok!

REPLY
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labrown | @labrown | Oct 8 6:42am
In reply to @suppiskey2surv "@sillyblone Glad you liked the acronym . . . Even my husband thought it was cute,..." + (show)
Profile picture for Suppiskey2surv @suppiskey2surv

@sillyblone

Glad you liked the acronym . . . Even my husband thought it was cute, even though I can tell he absolutely hates when I sit down to the computer to write anything to anyone. So, thought that a moment of progress there.

I get it about his being kinder to others than he may be to you sometimes, for sure! My husband gives more attention to everyone else's needs and is so much more polite to people he doesn't even know sometimes . . . holding the door open, asking them how they're doing . . . . stuff like that. And that part of "It's your 'job' " . . . . ummmmm, yup . . . at one point he told me or someone else. I can't remember now but he said it out loud that it was my "job". Boy, that really got me going . . . .

And . . . for anyone to say to any of us that it's not about "US" . . . . All I can say to that is, "You don't know what you're talking about." Of course it's about "US" . . . What? Are we invisible or something? And, what? All those things that need tending to are done by whom, exactly???? Those dang fairies???? This stuff doesn't get done by some magic act. YES, serious illness is horrible for anyone to go through . . . and the "patient" needs what they need; but, for Pete's sake . . . . so does the person all eyes turn to when something does or doesn't get done. And if venting keeps us sane . . . . and support isn't offered for this part of the equation anywhere within the "system" . . . only scolding, judgmental platitudes are being thrown out there, well then the person witnessing it all doesn't know a flying fig what they're talking about.

Love to you, Sillyblone . . . . can't wait until the powers that be give me personal messaging rights? By chance, do you know how long that takes?

Jump to this post

@suppiskey2surv Love your attitude! If it weren’t for us, where would they be?

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Suppiskey2surv | @suppiskey2surv | Oct 8 8:11am

I try not to think too much about that. Too scary. 😘

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