Alzheimer's Isn't Contagious! How do you handle this forced social isolation?

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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.

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Not one to just be pushed out because of someone's insensitivity, I spoke to a few close friends about what happened and, by golly, we went back to the lodge on Saturday night for a delicious fried chicken dinner. Sharon got more love and attention than I ever thought possible. Most interactions lasted no more than 5 minutes ... but there was always someone there at our spot. After hearing what happened, most people took a long inward look and realized it was the Grace of God that gave them their health, and they could soon wind up on the receiving end of this kind of treatment. Let's face it ... we're all getting older and dementia raises its ugly head at some point for most of us!

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
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Reply to Susanhaywood
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jeannegibbs May 15, 2018
I'm so glad, Susan, that your initiative paid off! I hope it continues.
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You don’t say what age group your sister and neighbors are in, but even though we know Alzheimer’s isn’t contagious, your neighbors could be thinking “There but for the Grace of God go I.” Their attitudes aren’t aimed at your sister personally, but what she could represent for them and possibly their future. In addition, some of them may have a past as caregivers and don’t want to take a step back there. Or, perhaps they are afraid that if they show friendliness and concern, they’ll get tagged for respite care. Who knows?

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!
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Thank you all for your advice! I think I'm going to first try approaching a few friends and ask if they would like to learn how to talk with someone with dementia. It's possible to communicate a caring attitude without ever making sense of the conversation. "Oh, I love that color on you! It's so good to see you! Give me a hug! Boom That's it. It's not what you say, but the fact that you say something in a kind way. "Did you go swimming today? What a beautiful day it was. Maybe we could go together sometime. Good seeing you! Done. If you say something first, it's unlikely you'll be trying to understand what she's saying. Oh, wow. What do you think about that. Jeez, I just don't know. Um hum, then what happened. If she laughs, laugh and tell her she's so funny, great seeing you ! I'm always sitting right there. No one would ever have to feel uncomfortable. Susan
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Just persevere, those who are kind will try to include her in little ways, especially as they get used to having her there. But, don't let your love for her blind yourself to her disabilities, YOU may be able to get some sense from her ramblings but others may not. If she clearly can not fit in at all then perhaps an adult day care would be a better social outlet for her.
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I agree with CWillie. There could be two sides to this situation - one as CW mentions, but the other as you describe.

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?
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Reply to GardenArtist
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Good insight and advice, Ahmijoy. It's sad that older (presumably), mature people still will shun someone.
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Loved your advice Ahmijoy!
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
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Reply to Daughterof1930
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Hi, Susan. I love your attitude. Oddly enough, in our local paper today was a huge article about none other than bullying in Senior Citizen facilities. It’s not as uncommon as you think. When the administration of the facility saw this happening, they had a program for the staff about how to handle it. One resident said in her “other life” she wouldn’t have said anything but now, if she sees something, she says something. I believe it takes a community to help put an end to this behavior, just like it takes a community to promote it.
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Thanks, GA! I was one of those “lunch table kids”, and even 50 years later it still makes me sooo angry!
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I had a similar problem where my uncle didnt want, or didnt know how , to talk to his father (my grandpa). He would come over to give the caregivers a break and he would just sit there and play games on his phone and ignore him. Some people just dont know how to talk to someone with dementia, so they avoid it. Its very annoying and also very hard for the person with dementia because they can catch on to this and feel very isolated. Have you thought about sending her to a senior center during the day? We did that with my grandpa to give him some socialization time. The people at senior centers are usually very nice and make an effort to socialize with everyone there. It was very beneficial for my grandfather when he was still with us. Now that he has passed our gratitude toward the people who worked there has magnified. They provided him with excellent care, great socialization, and lots of fun activities! It might be worth looking into for your sister!
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