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Oh, to be kind...
Keep It 100
Posted: Monday, July 8, 2019 3:26 PM
Joined: 2/26/2017
Posts: 489


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: 56


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: 564


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: 1146


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: 1336


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: 393


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: 16200


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: 1005


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: 3477


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: 141


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: 141


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: 16200


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: 141


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: 80


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: 16200


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: 141


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: 489


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: 16200


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.


lizziepooh
Posted: Saturday, July 20, 2019 7:55 PM
Joined: 5/2/2019
Posts: 141


Keep It 100 wrote:

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. 

 

The thing is to one person someone is passing moral and religious judgment and it is absolutely infuriating to witness and to another person they can’t agree more and they are thrilled to see someone else think the same way. 

 

 

To each their own...

 

You have to let people be themselves, even if they infuriate you.  Otherwise, this place won’t be as special if you do not let people feel safe to say what they think. Just a thought... 

ruthmendez
Posted: Saturday, July 20, 2019 10:10 PM
Joined: 9/8/2017
Posts: 2152


SpruceBruce post about "Having significant others while..."-whatever so forth n' so forth got deleted.  By him.

So...I guess he ain't coming back.

Oh well.


lizziepooh
Posted: Saturday, July 20, 2019 10:26 PM
Joined: 5/2/2019
Posts: 141


ruthmendez wrote:

SpruceBruce post about "Having significant others while..."-whatever so forth n' so forth got deleted.  By him.

So...I guess he ain't coming back.

Oh well.

Was that a thread with moral and religious judgment on it? darn*. I am bummed it is no longer available...I would have enjoyed reading it just because it was removed. Lol! I am a sucker for indignation.

ruthmendez
Posted: Saturday, July 20, 2019 10:40 PM
Joined: 9/8/2017
Posts: 2152


Yep, that's it. Similar to the Dan Gasby story.  A married man and girlfriend taking care of the married man's wife who has dementia.

I think it just gave some members here a different perspective and some didn't really buy the story or found it creepy.


lizziepooh
Posted: Sunday, July 21, 2019 2:10 AM
Joined: 5/2/2019
Posts: 141


ruthmendez wrote:

Yep, that's it. Similar to the Dan Gasby story.  A married man and girlfriend taking care of the married man's wife who has dementia.

I think it just gave some members here a different perspective and some didn't really buy the story or found it creepy.

 

 

Interesting. What do you think of the idea, Ruth? How do you find the story?

ruthmendez
Posted: Sunday, July 21, 2019 8:20 AM
Joined: 9/8/2017
Posts: 2152


Can I respond in your wondering thread?? I’m afraid to get bashed here..joking. Well, it doesn’t bother me but I guess I’m a sucker for happy smiley faces in photos. The family seemed happy and the husband and girlfriend seemed like caring people. From what I understand, the girlfriend had  gone through this before with her father, I think it was, who also suffered from dementia. So, I guess that’s why she decided to be a part of this family. Some members thought the husband is a perv...but to be honest, I would never want anyone to stop living for me. If my husband decided to keep me at home....I would not want him to be depressed, lonely, sick, taking care of me. I too, would ask him to find someone who’ll make him happy, hoping the girlfriend doesn’t take advantage of him.  If this type of family works, I am not against it, especially when someone with dementia lives many years. A long time for a caregiver.
Laura57
Posted: Sunday, July 21, 2019 1:25 PM
Joined: 3/25/2018
Posts: 151


Perhaps I was the “morality policy” in SpruceBruce’s post. His wife had dementia and together they managed to find a woman who had just spent years taking care of her mother who had Alzheimer’s. The mom passed away, and this guy started a romantic relationship with her, and somehow convinced her to move in with them as soon as the daughter goes to college. This woman, instead of getting her own life back after her mother’s passing, is now the caregiver for the wife with Alzheimers, and will be moving in with them at the end of the summer. He posted pictures and the girlfriend  looks disturbingly like the wife with Alzheimers, a doppelgänger if you will.  

I was the last poster on that thread. I asked if it the girlfriend/caretaker in this situation was your daughter or sister, would you think this situation was ok for them? She is now the unpaid caretaker for a stranger, doing it for the promise of a romantic relationship. It is disturbing. So if that makes me the morality police so be it.


Army_Vet60
Posted: Sunday, July 21, 2019 1:30 PM
Joined: 6/21/2019
Posts: 461


I wouldn't say there was any moral or religious Judgement on it.
 
Nobody said he was evil or going to Hell.
 
He posted about his three way relationship and said right off the bat any dissenting opinions  from the forum would be reported to the Admins as harassment. However, he allowed himself the freedom to call people here ignorant and limited in their world views.
 
That thread was doomed from the start.
 
 lizziepooh wrote:
ruthmendez wrote:

SpruceBruce post about "Having significant others while..."-whatever so forth n' so forth got deleted.  By him.

So...I guess he ain't coming back.

Oh well.

Was that a thread with moral and religious judgment on it? darn*. I am bummed it is no longer available...I would have enjoyed reading it just because it was removed. Lol! I am a sucker for indignation.


dayn2nite2
Posted: Sunday, July 21, 2019 3:19 PM
Joined: 6/20/2016
Posts: 2032


Some of us pointed out that he was using his girlfriend for his needs as well as free caregiving just like B. Smith’s husband is.  He didn’t care for that.  Plus creepy factor.
Army_Vet60
Posted: Sunday, July 21, 2019 3:31 PM
Joined: 6/21/2019
Posts: 461


Laura,
 
You were a voice of common sense.
 
Before posting, I'm sure he'd scanned this forum and read our posts and saw we're all Grieving.
 
I don't know why he came to this forum with that story, but I got the impression he was looking for reactions such as yours. 
 
If he comes back, I know now to not open any of his threads.
 
 
Laura57 wrote:

Perhaps I was the “morality policy” in SpruceBruce’s post.

 



Army_Vet60
Posted: Sunday, July 21, 2019 3:36 PM
Joined: 6/21/2019
Posts: 461


And you're correct in your assessment, IMO.
 
He said his wife gave permission for that relationship when she was in stage 6. She's not competent to understand what's going on.
 
dayn2nite2 wrote:
Some of us pointed out that he was using his girlfriend for his needs as well as free caregiving just like B. Smith’s husband is.  He didn’t care for that.  Plus creepy factor.


lizziepooh
Posted: Monday, July 22, 2019 10:31 PM
Joined: 5/2/2019
Posts: 141


ruthmendez wrote:
Can I respond in your wondering thread?? 
I would love that. From the responses you got in this thread alone, that topic is hot and interesting. Maybe ask why people were so upset by the topic? Was it just the topic or just the story? Or a little of both? Definitely an interesting topic...

pfd027
Posted: Tuesday, July 23, 2019 11:51 AM
Joined: 7/22/2019
Posts: 26


I agree with you. I am new here and while I would never intentionally hurt anyone with my replies, I do want honest reactions and solutions from real people in a similar situation. Often the typed word is misunderstood. 

#1 rule is always to think about how you want people to speak to you before you reply but if someone's answer is upsetting you need to ask yourself is it worth the energy to get upset or just move on. 

My understanding is this is a message board for CARE GIVERS so GIVE Replies with CARE


gubblebumm
Posted: Tuesday, July 23, 2019 2:59 PM
Joined: 7/12/2017
Posts: 1336


I guess sometimes well hah, anyway I may post things that come across as not "caring", for instance the thread where the barely adult woman was almost soley tasked with taking care of her grandmother, and I said that I thought her relatives we taking advantage of her, and I still do.  They were all living their lives and she was stuck as the 24/7 caregiver with little help.  To me, I wanted her to see that yes, they were not being caring to the caregiver and no amount of hoping, reading, little breaks will give her back her 20s.  Call it mean whatever, but when I see a young person through luck of timing, being too nice, etc being used (even if they themselves won't see it) I want to tell them please demand help and save yourself!  After caring for someone for years and years, what will you have? No job, no savings, no resume, no friends, no love life, no travel, and most likely PTSD.  Sometimes the come here and vent is helpful, sure, but when you see someone drowning and they don't see it themselves sometimes it time to say, hey wakeup you may be being used!!!
Lorraine Lee
Posted: Tuesday, July 23, 2019 3:11 PM
Joined: 7/19/2019
Posts: 8


fyi,

In order to be a caring and compassionate care giver the caretaker has to have gotten that from the demented person,,,or fake it as is the  normal in this society where being fake  is  more accepted than  the truth.  Unless the caretaker is a stranger with no emotional investment  

As is  with sooooo many ppl in nightmarish circumstances as ones  who care / live with a demented person   

I read that caring for the demented is three times more stressful than any other disability    To me that putting it lightly    

Honestly  when i read a response that shares the truth about being a caretaker to the demented. Thoes  are the posts  that help the honest ppl  the most