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Oh, to be kind...
Keep It 100
Posted: Monday, July 8, 2019 3:26 PM
Joined: 2/26/2017
Posts: 295


I find it truly fascinating that because we are rather anonymous here the normal rules for polite and considerate engagement are sometimes assumed to be not relevant. There are rules for engagement literally posted on this site, for the purpose of informing participants who might be tempted to criticize and judge: that is okay [to disagree] but please do it without personal criticism or in a manner that becomes disruptive to the community.

I never understand why it is so hard to just live and let live, but I guess that is my problem to sort out. This forum is for everybody, like them or not, and all members should feel safe sharing their feelings or sharing their stories or asking for advice or simply venting -- whatever reason we come here for -- without the morality police dog piling on. If you have something positive to add, great. If you have some relevant experience to share, great. If you have a valid concern, great. If you simply want to offer support to another person on this support site, great. But intentionally criticizing and provoking others who do not live life as you do is not really great; neither in real life, nor here.  


Johns baby girl
Posted: Monday, July 8, 2019 5:59 PM
Joined: 2/26/2019
Posts: 48


I'm sorry someone hurt your feelings or spoke out of line.  I won't condone the behavior, but will give a possibility  that some speak (type) when stressed to their limit.  I only hope that you continue to seek insight on this site.  Sometimes you have to skip over posts from people that you don't agree with.  Most are compassionate, lovely caregivers.
romiha
Posted: Monday, July 8, 2019 6:26 PM
Joined: 12/21/2014
Posts: 536


I know some have strong feelings about situations, what they would or would not do given similar circumstances.  

However, writing styles vary PLUS if the original poster is feeling stressed out/ overwhelmed, the written word can be read/taken the "wrong way."  I fall prey to this myself on occasion!

Read the sentence below but place the emphasis on a different word each time to see how the sentence "changes."

I didn't rob the bank. 


Mom's Baby
Posted: Tuesday, July 9, 2019 8:53 AM
Joined: 12/19/2011
Posts: 1136


I agree with Romiha that reading someone's often blunt writing makes it far easier to take what's being said the wrong way. You can't hear tone or see a facial expression. 

I'll also say that there are a lot of us who've been on the message board a long time, and we see the same questions and problems come up over and over. I think it's always important to remember "this is a new situation for this person" and respond with that in mind. However, I've also seen people repeatedly ignore good advice or get upset when someone gives them advice that contradicts what they're currently doing. It can get tougher to be kind in those situations. 

When I joined the board nine years ago (wow, can't believe it's been that long), I was cycling back and forth about moving my Alz mom from her home after my dad died. Then I did move her and questioned what I'd done... whether she was in the right place, etc. It was the straightforward, often blunt, answers from people here that showed me I was doing the right thing. There are times when we feel like we have to help a person "see the light" and that can take the form of a response that is more to-the-point.


gstonebu
Posted: Tuesday, July 9, 2019 10:37 PM
Joined: 7/9/2019
Posts: 2


Hi all, I’m new here and not sure if I’m in the right posting spot. 

In reference to kindness, I’m having a lot of heartbreaking issues with my mom’s (she has ALZ) so called friends dropping her off of their network. Some have even gone so far as saying they will pick her up for a party, not pick her up nor pick up phone calls and then not say even two words to her at the party that I ended up driving her to. She constantly talks about how she has no friends and before the disease this was never the case. The only friends and family who are wanting and willing to see her are far away (out of state/country). I guess it’s fair to say, we know now who the real friends are. Just heartbreaking on so many levels.

Does anyone have any insight on how to get your affected loved one interacting with more people other than the farmers market/hair dresser/ nail salon? I don’t know if she would fair so well in a daycare facility at this point since she still has many opinions but that may be my own doubts on the situation. She’ll be 71 in August, working on getting her lic removed and lives in the sticks. My dad and I drive her around now. Having her interact with people really uplifts her day. I’m just looking for other options that would keep her occupied and happy. Any insights would be so much appreciated, thank you


SDP22
Posted: Wednesday, July 10, 2019 9:09 PM
Joined: 4/1/2019
Posts: 8


Thank you for sharing this. I do feel a little uneasy posting now after a response I received that seemed very dismissive and judgmental. I blamed myself as maybe not writing a clear initial post, however several other people responded and were supportive, so hopefully I wasn't too misunderstood. I am quite new to the forum and new to seeking support when it comes to caring for someone with Alzheimer’s. I do not yet have a lot of advice to offer people on the forum because everything progressed so fast with my LO. 

Gstonebu, When I was new to this forum I was a little confused on where to post. You can create a topic for discussion by selecting “add topic” at the top of the caregiver forum. I feel your heartbreak in your post. I do have a suggestion and hopefully it can help. It’s tough for my LO with dementia to go out in large settings so they do not get to see friends and family nearly as much. Friends and family have been invited to her house for dinner (1-2 friends or family at a time). Sometimes a couples dinner to a quite place has worked too. The organization and planning is done for my LO with her friends and family as she would have difficulty with logistics. This has helped encourage regular engagement but keep the setting small and comfortable. I hope this helps. Take care. 


gubblebumm
Posted: Thursday, July 11, 2019 12:55 PM
Joined: 7/12/2017
Posts: 1223


I came here a few years back and I for one appreciated the brutal honesty I saw.  Sometimes it may come across as judgey or harsh, but I think people come here to learn and information will come from people at all levels of the journey, from just beginning to having their LOd die.  Yes sometimes it can appear "mean" but its mostly coming from raw emotions, sharing mistakes they made and don't want anyone else to make, from reading so many posts of people who have been there done that.

I think people do come here for real advice and if that advice from experience doesn't jive with the expectations, wishes, hopes for their LOd, well isn't that why they are asking?

As someone who is the only person my mom will deal with on a caregiver level I wouldn't wish this on anyone or tell anyone hey this is great, I feel blessed, eh its easy, I would say make plans to save yourself ASAP...If someone says oh going to bring my ALZ MIL to live with us and the family isn't supportive should we say, oh itll be fine the family will turn around or should we say, from our experiences this well be a mess?  Truth or dreams?

I truly am sorry if posts come across poorly, but they do come from heart felt dispair

 


GemsWinner12
Posted: Thursday, July 11, 2019 3:02 PM
Joined: 7/17/2017
Posts: 286


Romiha, 

Great point that you made!  Also, in case you were wondering~

I DID NOT ROB THE BANK !!!


Iris L.
Posted: Thursday, July 11, 2019 11:45 PM
Joined: 12/15/2011
Posts: 15996


I was devastated with the interaction I received when I first joined the board.  It was about not using the stove as a PWD.  But it was the best advice.  Those caregiver members, who I thought were a bit harsh, saved my life!  I consider all advice to be relevant; it may not be pretty, but it comes from experience.  Take a step back and think about it.

Iris L.


annie789
Posted: Friday, July 12, 2019 12:35 PM
Joined: 11/19/2015
Posts: 998


Keep It 100

 Your words are so true and I do believe part of the problem is the anonymity and feel that some posters think that gives them license to be unkind.  I had posted a lot but then got tired of some of the harsh, condemning attitude of some.  I have quit posting very often because of one person who informed me that I "do not make sense"  just because I talked of keeping my husband home with me and getting meds if needed for him. I have too much stress in my life to put up with that kind of behavior.

However, I do read the posts and get information from other people's information and just skip over the know it all's posts.  Hope you are able to do the same.


VKB
Posted: Friday, July 12, 2019 3:29 PM
Joined: 12/4/2011
Posts: 3451


Keep It 100 wrote:
But intentionally criticizing and provoking others who do not live life as you do is not really great; neither in real life, nor here.  

 

 
Yes!  Always and everywhere be kind in thought, word, and deed.  Simple!

lizziepooh
Posted: Friday, July 12, 2019 10:49 PM
Joined: 5/2/2019
Posts: 34


Iris L. wrote:

I was devastated with the interaction I received when I first joined the board.  It was about not using the stove as a PWD.  But it was the best advice.  Those caregiver members, who I thought were a bit harsh, saved my life!  I consider all advice to be relevant; it may not be pretty, but it comes from experience.  Take a step back and think about it.

Iris L.

 
It has got to be tough, Iris, reading the threads here from caregivers since you are a PWD. Not only because you see our pain and sadness and frustration and anger but it has to be scary too thinking that at some point this may be me they could be talking about it.

 
To hear through all that and still hear the sincerity in the bluntness, that is incredible and rare even in people that do not have dementia.


lizziepooh
Posted: Friday, July 12, 2019 11:46 PM
Joined: 5/2/2019
Posts: 34


This place is special. People on the internet feel connected to others as if they are real life friends. 

But even in real life, certain people bug us or rub us the wrong way. Some people are know it alls, some are Debby downers, some are doomsayers and some just bug us just because they breathe. Lol!

Whatever. Get over it. If you want to be able to say what you think, then you have to allow others to do the same.

Simple. 

And what is great about this place is that I have not yet seen anyone that is truly evil. When I say evil, I mean someone with the intent of cruelty. 

From what I have seen, the “bad” has just been misplaced good intentions.


Iris L.
Posted: Saturday, July 13, 2019 1:14 AM
Joined: 12/15/2011
Posts: 15996


lizziepooh wrote:
Iris L. wrote:

 
It has got to be tough, Iris, reading the threads here from caregivers since you are a PWD. 

Yes it is tough.  I do not have Alzheimer's Disease, but I see myself exactly like two aunts and an uncle who probably had some vascular dementia.  They were undiagnosed and had no intervention or help.  I do not have any help.  I read the caregiver boards to figure out what I need to do for myself.  I appreciate everyone's comments, even the ones that may be less tactful.  Dementia is not a tactful disease.  Real world professionals seem to have limited knowledge and understanding of what to do.  PWDs are vulnerable and family and professionals seem to be blind for too long.  Nowhere else can I get this level of competent help and advice!  Thank you all for posting!

Iris L.

lizziepooh
Posted: Saturday, July 13, 2019 1:29 AM
Joined: 5/2/2019
Posts: 34


To IrisL - do you ever run into people that do not believe you have a mind disease? And if so, how do you handle it? just wondering...
Janice.alone
Posted: Saturday, July 13, 2019 7:37 AM
Joined: 10/12/2018
Posts: 33


Lizziepooh -  that is a very interesting question and I would suggest you make a new thread with it.    It may receive more attention and get more responses with it's own topic rather than being lost in the middle of someone else's thread.
Iris L.
Posted: Saturday, July 13, 2019 7:10 PM
Joined: 12/15/2011
Posts: 15996


Lizziepooh, I lost my two closest friends because they said I talked too much about my memory, and that everyone has senior moments!  After that crushing rejection and abandonment, I decided not to disclose.  I keep information on my cognition on a need to know basis.    

Iris L.


lizziepooh
Posted: Wednesday, July 17, 2019 9:46 PM
Joined: 5/2/2019
Posts: 34


Iris L. wrote:

Lizziepooh, I lost my two closest friends because they said I talked too much about my memory, and that everyone has senior moments!  After that crushing rejection and abandonment, I decided not to disclose.  I keep information on my cognition on a need to know basis.    

Iris L.

Wow. I am very sorry to hear you lost your closest friends. That sucks. With my mom, her friends are still around but it is probably because it is expected (she is old) and because it is very obvious. Going to lunch with my mom, you will figure out quite quickly that she has issues, especially for friends that have known each other for over 50 plus years. 

 

 
I read these boards, including the ones for people with dementia, and it is heartbreaking all around. I think I feel most sad for the spouses of the person with dementia and for the people with dementia that know they have it. 

 

 
It must be heartbreaking for the spouses to watch their partner change from a partner to someone they are responsible for and for the people that have dementia, it must be incredibly scary to know their fate and to lose control of their own life because others take over for them.

  

Having a compromised brain disease just sucks.

Keep It 100
Posted: Thursday, July 18, 2019 8:34 PM
Joined: 2/26/2017
Posts: 295


Oh hey guys, just returned to see this is quite a thread, and a good discussion, only many of you seemed to miss the point. Personally I think blunt and direct is perfectly fine, as most everyone here sincerely wants to help. My rant was directed specifically to those who pass moral and religious judgment, plain and simple. It can be infuriating to witness and has no business here. 

Luckily I find most everyone here to be rather kind and supportive, and I can recall only one particularly mean and nasty comment directed to me, when my now stage 6 husband was early stage 4, and this deeply insensitive member told me, quite insensitively, that based on my description of my husband’s actions, there was no way he has Alz. I called her out and she never apologized for such an uninformed and cruel thing to say (on this board of all places, where she should know better). For that, my opinion of her remains low. But the mountain of good here far outweighs the occasional, but irritating, morality police, and the random meanness of one bad comment. 


Iris L.
Posted: Friday, July 19, 2019 1:05 AM
Joined: 12/15/2011
Posts: 15996


Keep It 100 wrote:

 My rant was directed specifically to those who pass moral and religious judgment, plain and simple. 

I have never seen this.  I have been the recipient of personal attacks.

Iris L.


 
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