Apologies...

SDianeL

I came here today to apologize to this community. I belonged to 3 other groups in addition to this forum. I was asked by the moderator of one of those groups to no longer use the words "terrifying" or "heartbreaking" when I refer to Alzheimer's. The reasoning is that everyone progresses differently and some don't have the same symptoms & behaviors as my DH. I was trying to describe what I felt when my DH was diagnosed & what it was like as he progressed through Stage 7 & as I now try to live without him in Stage 8. I would like to stay in this forum. I don't know what I would have done without this group the last 2 years. I would like to try to continue to help those who come here. Please accept my apologies if I offended anyone or caused undue anxiety. I will try to choose my words more carefully. Love you all. 💜

jsps139_

SDianeL … your posts have helped me so very much. Not sure why those two very true and honest words would offend anyone. We all know that Alz can be both terrifying and heartbreaking for the caregiver and the PWD. The whole point of this forum is that we are not required to “choose our words carefully.” We say what we feel at the moment we’re feeling it, and the total acceptance, (no matter where we are on this journey), by everyone on here is nothing short of amazing! Please know you are a big part of this forum because of your helpful posts!❤️❤️

Kat63

Agree totally with what jsps139 posted. I for one know my words are not always “perfect” but feel this is a safe forum for us all. I want everyone to be able to freely express how they are feeling and what they are going through caring for someone with dementia. It’s okay to say it’s hard, have typos, etc. We have enough stress and posting here should help lessen our stress not add to it.

jfkoc

This journey is terrifying, heartbreaking, frustrating, overwhelming and more. Please, feel free to share what you are feeling!!!

Dio

Why must we caregivers sugar coat how we feel?! We come to discussion forums and support groups to vent and express our feelings and what we are going through, the good and the bad. These are supposed to be safe environments, at least this discussion forum is. Agree totally with posters above.

Quilting brings calm

we are 100% honest in THIS forum. It is terrifying and heartbreaking. We aren’t here to support people by making it sound like lollipops and rainbows. We are here to support people by telling them it’s ok to have the feelings they have, to be scared, to be frustrated, angry. And that we’ve got your back - you can vent here. And we will try to offer solutions.
Those other forums can go pound sand. They aren’t helping their members.

fmb

Please do not censor your comments here. This is the one place where we can be completely honest about our feelings and no dementia/grief related topics are off limits. We MUST be honest or we are doing our loved ones a great disservice.

I would also like to add my sincere thanks to you, @SDianeL, @Quilting brings calm and others in Stage 8 for continuing to post. Your experience and insight are very valuable, especially to newcomers to this terrifying, heartbreaking nightmare. It means so much to me as my DH inches closer and closer to death to read your posts and know that there is life after caregiving.

Buggytoo

Geez! If you can't truthfully report how you feel in a support group, where can you?? Though your observation does make me wonder if I sometimes come off like I am speaking for all of Alzheimer's patients when I am reporting my realities. And yes, they are terrifying and heartbreaking every single blessed day!

trottingalong

You are a great contributor. I agree with everyone above, keep using the words that you choose to use. This is a site without censorship. We are all in this together and it sure is nice to read that someone else is perfectly describing what I may be going through.

CindyBum

While I accept your apology since you offered it, I see absolutely no reason for it. This journey was terrifying for me at the outset. I'm terrified now of what my life will be like in Stage 8 and the build up to it. My heart breaks multiple times a day.

Support groups are for honesty. I have appreciated your honestly, all of it, and the care and love you offered your DH and everyone here.

xoxo

cdgbdr

No apology needed. I appreciate the honesty of those in this group. Realistic descriptions of feelings and experiences is what I think many of us need and are looking for. Thank you and stay right here.

Biggles

Please don’t apologise SdanieL this forum and particularly your comments have been my lifesaver. I have found your responses so enlightening full of understanding and wisdom of this horrible disease. I don’t think covering this disease up with nice words helps at all compassion and understanding does. Doctors in this regard can be useless the start of this journey is terrifying and heartbreaking and when we set out on this journey carrying this baggage there is no one to turn to. I can’t thank you enough for your words.

WIGO23

I think the moderator was out of line to censor your honest feelings. If you cannot let your raw emotions out among people who are here to support one another, then where can you do that?

We all are grown ups here. We know that not everything that is posted aligns with our experience or feelings at any given moment.. We take what is valuable to us and let go of the rest. The last thing we need is being asked not to reach out to one another with whatever we are feeling and with whatever words best express it. We are here to learn, to share and to help one another on the most TERRIFYING AND HEARTBREAKING journey I have ever reluctantly had to take.

YOU HAVE DONE NOTHING WRONG TO APOLOGIZE FOR.

Mint

Dear SDanielL

I have respect for your posts. You have nothing to apologize for. I always look forward to reading your posts and consider you an asset here. I’ve always found your post very respectful And I admire your courage, and how you dealt with not only your husband’s problems but your own problems. It would be a great loss for people not to be able to say how they feel on here that’s the reason a lot of us are here so we can say things to one another that we might not say outside of this group. Your statements may have helped someone to realize they’re not the only one that feels that way and comforts them.
If other people don’t feel that way and they want to say I don’t feel that way this is how I feel that’s fine too As long as it said with respect toward the other person. There might be someone else who understands that and is helped by that. We don’t all have to feel the same way because we’re all having many different experiences. You take care. I’m very sorry that you’re having to deal with something like this.

Biggles

PS Thank you, Quilting brings calm, your response is the support our group needs I am hoping your message and messages like this can be posted to let those in higher places know how much we appreciate and need SdanieL.

CampCarol

Puh-leeze! QBC hit the nail on the head: “pounding sand” sounds absolutely appropriate for that other moderator/group. We are all in this together, and I am thankful for everybody’s candor! @SDianeL…while I’m sorry you felt you had to apologize, I’m happy you posted so we all have the opportunity to set the record straight on this one. You keep dispensing your great advice, it’s definitely appreciated!

Lgb35

I have learned a lot from you and would love for you to stay on. I am praying you are finding peace in stage 8❤️

Stan2

I agree with all those ahead of me who said you owe no apologies and I thank you for your contributions. The value of this forum is that we may speak honestly without judgement.

Jgirl57

SDianeL, thank you for ALL your words .

housefinch

You’re incredibly wise, compassionate, and supportive and offer plenty of useful advice and encouragement to people here. I’m baffled by that feedback. At least for me, I feel better knowing our experiences and emotions are similar (I’m not a spouse but have watched my mom’s heartache). It’s much less isolating knowing other people have walked a similar road. Sending you thanks and appreciation.

annie51

I’m so sorry that you felt the need to apologize. I agree with so many others about what a great support you’ve been and your words of wisdom - ALL of them.

lenbury

No censorship please....we all speak from our hearts.

GothicGremlin

I'm with the others — no need to apologize. All of the words you use, are the words we all use to describe this disease. We may be looking after a spouse, a parent, or in my case, a sibling, but we all face (or faced, for those of us in stage 8) impossible choices, most of which are heartbreaking and/or terrifying. If we can't discuss those feelings and experiences here, where else can we go?

Speaking for myself, I've always appreciated that I could count on being able to get the non-sugar coated advice that I got here, so that I could be the best caregiver I could be to my sister.

And you also give great advice and it's obvious you're coming from a place of compassion. Please don't change.

JeriLynn66

Diane, your participation and honesty have made you a very valuable member of this group. I hope you're feeling the outpouring of love here because it's very clear to me. 💞

harshedbuzz

@SDianeL

I am so sorry the moderator of the other group made you feel as though you needed to temper your words to make your truth more palatable for others or to meet the criteria of "politically correct" style-book.

I think this other person missed the point. There's a movement, which I largely applaud, to use language that is more respectful, person-first and less judgmental around illness and disabilities for the general public. Perhaps she thinks she's trying to maintain a similar atmosphere.

HB

Marla13

I don’t post very often but I come here to read. It comforts me to know that I’m not going crazy when I have “terrifying” and “heartbreaking” feelings. Thank you SDianeL for all your wonderful posts.

mrahope

Hang in there @SDianeL . If you were using four letter words or terrible pictures, then maybe. Every word you've written shows you loved and understood your DH and the situation you were both facing.

JDancer

No reason to apologize. One of the many things I love about this group is reading posts that describe the way I feel, which includes terrified and heartbroken. I probably would have been kicked off that other forum after one post.

Babz0226

Thank-you, I always read everyone of the post you submit they are truthful and mean a lot to me and others here that need guidance. DO NOT STOP.

Palmetto Peg

I just want to add my vote to never, ever feel that you have to censor anything you say here! This is the one place I can come to and know I will find understanding, hugs, and encouragement! Dementia is heartbreaking, terrifying, and soul-sucking on a good day! Keep coming here to say what you are feeling!

midge333

I won't accept your apology because you have nothing to apologize for! Your posts have helped me during the absolute worst time of my life. Thank you!