I am 24/7 caregiver for my sister who has Alzheimer's. We live together in a lakesite golf cart community on Elks property in Texas. Once very social and only moderately "loopy," a recent kidney infection seriously affected her mind. She knows what she is saying, but it just doesn't come out right. Doctors have no idea why this happened. CAT Scan and MRI revealed nothing. The lodge is the social center of this mostly older community. Today she was snubbed. I actually overheard a friend tell another, "You don't want to sit there, trust me." As in, don't sit next to Sharon. I was mortified for her. This man turned his back on her. He was once one of her favorite people. Everyone went on with their happy times and we were left out. Yes, it's hard to talk to her. You can't say you don't know what she means and ask her to explain. She has no idea that she's not making any sense. There ARE ways to follow her train of thought and make her feel included! I’ve told people to smile and say hello. Follow her facial expressions and body language. If she laughs after spewing a bunch of numbers, laugh WITH her! Give her a hug and tell her you love her and go back to your own table. It’s so simple. How do you handle this forced social isolation? I don’t want to just keep her home! I’ve never felt so lonely. I’m Susan.
I think generally many people w/o caring experience are afraid of someone whose behavior may not fit the norm, and perhaps even more afraid if they don't understand it. And if they don't have that experience, don't study, don't try to interact, they compound the isolation.
I don't know if it would help to speak to these people privately and explain how cruel their behavior is, especially the "don't sit there" advice. That was really low class, tacky and unkind.
Are there any programs that address community residents, such as explaining aging conditions, changes in behavior, and how to still communicate with folks affected by these conditions? Since this is primarily an older community, if there's a HOA, this would be the ideal means to reach out to the residents.
Is there any type of educational program, through which someone could bring in a guest speaker, under the guise of general education for the elder members and their families?
That for sure doesn’t excuse their behavior. It sounds like a throwback to the junior high lunchroom where the shunned kids sat alone. It makes me want to grab the man who turned his back on your sister and the woman with the snarky mouth and get in their faces. “Weren’t you raised better than that?” I certainly would have said something had I overheard the comment the woman made about not sitting with your sister. At that point, what would you have to lose? Seems like these people haven’t moved on from the lunch table mentaility.
You can’t force people like this to be friendly to you or your sister. I wouldn’t want them as friends anyway. There must be someone in that group who isn’t a jerkimer. Focus on them. And maybe drop a word in their ear about the others after a few get-togethers. “Oh, We’re so glad we met you, Marge! My sister and I really enjoy spending time with you!” Or, there’s always at least one “gossip” in the group. Make a comment to him or her about your sister’s shoddy treatment. Again, what have you got to lose? If by some chance, you do meet someone nice, invite them for coffee or a glass of wine at your place. You and Sis don’t need to be social butterflies, but she might enjoy a get together at home.
I am embarrassed for and by these small-minded people. They don’t know what they’re missing by snubbing you and Sis. Give Sis a big hug for me and tell her if I were there, we’d have such a good time we’d make all those %#$@*s jealous!
Susan, people do back away from what they either don’t understand or fear for themselves. We have an adult son with an hypoxic brain injury and have learned over the years that few people really want to know much about him or spend much time with him. And he’s a pleasant person, just a different bird in some ways. It is almost like people unconsciously think they can catch it if they get too close. Others offer suggestions to fix it and are frustrated when there’s no easy answer. Your sister is blessed to have you in her corner, I hope others will see your great relationship and give you both a chance
Although I only watched a short segment, a few interesting observations and theories were made. Real, true and accurate knowledge of communicable diseases was lacking in the Middle Ages general period. People just didn't understand how some diseases were contracted and spread.
Although I missed the part on why it was specifically assumed that some diseases, especially when a child or younger person was affected, were transferred by contact, it seems as though that was one of the fears that persisted until more accurate diagnoses were possible centuries later.
Somehow or another that segued into myths that these people might come back, so bodies were treated in a manner that precluded any spontaneous resurrection.
That's when the graphics became a bit too intense for me. But apparently the fear metamorphosed into the possibility of resurrection of people who died from disease, or unknown causes.
And so the myths grew and were spread by the lack of knowledge existent during those times.
That's what I took from the documentary; I did skip most of it though b/c it was too graphic and unsettling.
Yet here we are today, in the 21st century, and people still avoid others b/c of whatever fears, anxiety, prejudice or misunderstandings they might have. Or they bully people who don't fit their narrow minded standards.
As people came over to us, they watched how I responded to her and they picked up on how to do it very quickly. There were lots of laughs and Sharon had a great time.
A REAL teaching moment!!!
Susan
Since my MIL was in rehab I've learned a lot. Not so much from her, but from the nursing home she was in.
I've gone back to visit residents. The nurses are okay with me coming in and visiting. I found that just by smiling and nodding or simply saying hello means so much to those with dementia, ALZ, or those that are there because they are sick.
I am so glad that you are showing others how to respond ! Awesome.
Society can be extremely stupid when it comes to dealing with anyone with any type of disability. I was raised to "put myself into another person's shoes" - but even that doesn't always work. And we think we are civilized people.
I am truly sorry for the pain you are experiencing. It is thoughtlessness and inconsideration at it's worst.
As for the snubby folks: kill them with kindness and know that Karma’s a..........b#£*h.
How is your sister handling being put in social situations when she can no longer socialize? Is she feeling discouraged and frustrated? Or is it enough for her to just be able to watch others?
There are other things she might be able to do. How about taking her for walks/strolls in the neighborhood or getting her a dog to keep her company?
Any way, it sounds like there is a major clique going on there. Oh what memories of high school🤔 NOT!
I read an article on the Fox News forum just last week about this growing epidemic. It appears statics show more than 80% of the elderly today ARE BULLIES!! Can you believe that?! They are actually telling others that you're in my chair, take food from other's plates AND actually start physical fights....who would have thunk.
Me, I'm a stander upper. I was in school and I'd do it today and have done it. No one deserves to be ridiculed, treated like they had leprosy or any other affliction, ever. This truly tweaks my cheeks.
1st time I'd be polite and ask point blank what the issue is. 2nd time, I'd be more intense with the commentor. 3rd time, I'd just come out with it and let the entire room of "friends" know exactly how you feel about their treatment toward your sister AND YOU! These attacks are not just toward your sister, but you too.
You go girl and let them know EXACTLY how rude and disingenuous they have been. If they were friends at one time, they're hypocrites now and just wait until that proverbial shoe is one the other foot. Then sit down and finish your meal with your sister while the room sits there with their jaws dropping to the floor. Stand your ground like your Momma taught you!!
You turned it around wonderfully! You taught us something. Thank you for sharing.
Kathy