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Oh, to be kind...
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.
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.
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.
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
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.
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
Great point that you made! Also, in case you were wondering~
I DID NOT ROB THE BANK !!!
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.
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.
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.
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.
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.
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.
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.
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.
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...
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.
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.
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.
Perhaps I was the “morality policy” in SpruceBruce’s post.
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
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