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

Susan, a thought as I read through some of these posts - forgive me if someone else has already suggested this. Have you tried alternate ways to communicate with her? Writing, a computer program? Occupational Therapy would be a start in finding some assistance.

These are similar situations when years ago, individuals had a diagnosis of cancer. These days, most people understand it is not contagious. Time and information helps to change reactions. You are on the foundation of educating others through sharing your experiences.

As for the individuals who are unkind, I agree it is often due to a lack of understanding and not wanting to hurt someone because they don't know what to say. Unfortunately, there are always those who are just unkind. I pray for them. :)

Animals are like that, they’ll avoid another animal that’s very old or sickly, even sometimes attack the suffering animal. It’s something primal in my opinion.

Humans are animals to a degree, except they speak. That’s a curse and a blessing. So that woman who persuaded the man to shun your mom is an animal, domineering the others. It’s not pretty to watch if the shunned are someone you love.

My mom was always ‘Chatty Cathy’ until she developed dementia. I’m no expert but she has seemed to reduce the amount she talks in social situations. She smiles and giggles and lets the others speak. When I’m with her she’s silent and so am I.

I have loved her for a lifetime and feel like we used our chances to have conversations very well. This silence is comforting. Touch is something that’s perfect, hand holding, hugs...

Susan, your post just made my day! I was so angry when reading your first post I was shaking. I thought about you and Sis all week. Sometimes people just don’t realize how their actions are perceived. I hope this good will towards your sister continues. Hugs!!

I recently read an article that described what your sister is being subjected to. It is called senior bullying. Unfortunately it is widespread and a cause of concern. Making excuses for this behavior only encourages it. Perhaps your community has group meetings on various subjects and this would be an excellent topic for discussion. Research the subject, there is a lot of info out there, and reach the human, compassionate individuals. I think you will find that the "real" bullies treat others just as poorly. I believe you will find many kind and caring people who are willing to ease the isolation you feel. Just as we teach our children to stand up for what is right sometimes we have to be reminded to do the same. Best wishes to you and your sister.

We go to dinner monthly with a group of ladies ranging in age from 50-90. One of the ladies in her late 70’s has been showing signs of some form of dementia for the last couple of years. She fidgets a lot, keeps checking her wallet, keeps asking what she should order, even after ordering. One of the younger ladies has no tolerance for the behavior so we just make sure as we seat ourselves that they are not seated together. I’ve spent many evenings asking questions about where she lived before moving back here (an area I was familiar with), talking to her about the menu and how much she enjoys the chef’s salad. Not to worry about the dinner bill because her SIL was treating her tonight (her SIL always had her $ to cover the meal). We’d pick out KENO #’s together and then watch for the #s to come up. It kept her busy and gave a break to her SIL and another friend who were her caregivers. Unfortunately she is now in Memory Care and she is missed at our monthly outings.

Susan,


You turned it around wonderfully! You taught us something. Thank you for sharing.


Kathy

I'm sorry for you mother. People can be so cruel.

Could you suggest that some cool music might be welcome at the meal time? Some things that are in the memory ranges of the residents and would possibly also trigger some conversations about memories of events that are still recalled--with ALZ memories are lost in the reverse order that they were made.

Susanhaywood (loved the actress, I believe she was from TX)

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!!

I can relate. My father had a stroke & could only mumble what he was saying. He had been the person everyone wanted to be around before stroke. They no longer came around. I could not understand him but I loved him & would act like I knew what he was saying. Broke my heart. Some good points layed out by this group. I'd never have the guts to speak out but your positive reaction for doing so I would now do it. Thanks Susan. Now I have an 87 yr husband w alz. & socially same thing. He can talk but not so interesting. Can't play cards which was great part of our lives. They say hi to him & he will respond. I like to keep him visible to people walking by. He yells hello. Speaks to all small children he sees. I see 2 complete different situations in my case. Not understanding is a heartbreak error & some my hubby's hi shouts are embarrassing but seems most understand he has alz. Hang in there & thanks for the encouragement to speak out.

Are you grieving the loss of your sister not being able to socialize? Perhaps, it is time to find other things to occupy your sister's time.

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?

Im not making excuses for these people. People can be stupid sometimes. Im glad the situation has improved some, though. Still if your sister can still write . You might want to consider a small dry-erase board, she can keep with her.

I believe there are probably other people there who have Alzheimer’s. Gravitate towards them. Start an Alzheimer’s group if appropriate.

As for the snubby folks: kill them with kindness and know that Karma’s a..........b#£*h.

Hi Susan; I came to this discussion late and at the risk of repeating what others have said, I also wanted to provide a few more comments. Many people with Alzheimer's have difficulty communicating which makes it quite difficult for those who want to talk to them and to be friendly. I have seen some extremely kind-hearted people shy away from conversation or visits with those who have Alzheimer's. They are fearful that they will say or do the wrong thing, that they will upset the person by not responding correctly, or simply that they are uncomfortable with someone who is 'babbling' and unintelligible. Recently, I sat next to someone who had Aphasia and dementia. He kept talking to me and all I could do was smile and agree. Often I would just repeat something I said and then turn my comments to something else (changing the subject.) The man didn't seem upset by this as I watched his reaction. He was just happy to have someone pay attention to him. However, others remained at arm's distance not wanting to engage. I see that in my own family. Some of the sweetest and most loving family members are fearful and will not engage with my mother. It is understandable since she doesn't understand most of what they say and doesn't respond. When she does it is unintelligible and even worse, she doesn't remember what someone says to her for more than a second or two. It takes great effort to interact with someone such as that. For some people, their inner voice reminds them that people are watching and listening. They prefer not to engage in an embarrassing (as they judge it) conversation. Compassionate friends will say hello and talk to Mom for a minute or two and then give up. I totally understand and do not judge them. I have learned to engage these people in conversation with me, then turn to my mother and smile or say something to her then continue with my conversation with the other people. It shows the others that they can do the same and it appears to be inclusive while not having to be overly uncomfortable. We cannot teach compassion but also cannot understand why there is avoidance. We don't know the inner struggles that others may be having. Compassion goes both ways. Having experienced many uncomfortable situations with the elderly, I see my own strengths and weaknesses and (I'm not proud of this) there are some people from whom I shy away as well. I am trying to be better by learning about their illness. Knowledge leads to understanding which dissolves fear.

Well done, Susan for managing to change things for you and your sister. I'm my Mum's care and I suffer from social anxieties myself, so I dread things like this happening. Having read your posts, I hope I'll be confident enough to speak out for my Mum if the need arises.

Ahmijoy said it all and said it well.

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.

Susan, I see someone else mentioned the lunchroom mentality and the bullying among older people!
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.

What a nice turn to your story Susan! Also, have you thought of widening the social circle. Someone suggested a senior center...what about a church as well?

Susan, I am so glad to read that most residents there responded in a kind and intelligent manner. Maybe that immature, crass man will learn as well. Wishing you and Sharon all the best!

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

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.

Susan I am glad you have some "real friends" there that you can turn to.. and maybe they can pass on the love. When my parents moved in with me, my dad's ALZ was pretty advanced. Luckily I have several friends who had been down this road, and they were great help. They never shied from talking to dad, or going out in public with us.. even when dad would take 2 hours to eat lunch, or flirt with them. Keep up the good work, and the heck with the idiots who act like 3rd graders. Love to you and your sister!

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

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!

Watched an interesting program the other night, on, of all things, possible medical/social origins of the vampire legends. I'm not a fan of that genre, but wondered about the historical aspects, if there really were any or if the whole concept was a creation of fear, capitalized by the development of movies.

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.

Now you know the man has showed his true colors. It happens often, some people are there when things are good, when they aren't they're gone.

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

Thanks, GA! I was one of those “lunch table kids”, and even 50 years later it still makes me sooo angry!

Good insight and advice, Ahmijoy. It's sad that older (presumably), mature people still will shun someone.

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!