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what makes people so cold to people with dementia?
alz+
Posted: Monday, June 26, 2017 9:19 AM
Joined: 9/12/2013
Posts: 3608


Lots of us have family and friends who ran for the hills when we got diagnosed, and then there are the folks who kind of stick around but are useless and aggravate us.

The anxiety waves that many of us have are, I think, part of the illness. When we are in a situation that is overwhelming out senses it increases the anxiety.

Is the anxiety different than the fears we have about the illness, dying, being a burden, etc?

I am always working with fear because of a life with PTSD. Mindfulness works most of the time, to become interested in the fear and examine it and be patient with it as it blows through.

Prayer helps me release control and come up with fresh ideas. Today I woke up vibrating and anxious and am fighting off the desire for a cigarette.

Back to original point: 

what is it that makes people so weird about dementia?

what is it we are actually  anxious about? (not like I wasn't going to die of something)


ndhme
Posted: Monday, June 26, 2017 12:14 PM
Joined: 5/31/2015
Posts: 1159


Alz, I feel people come across weird because we do not understand the complexities of ALZ or any other neurological disease until we experience in-depth exposure.   I can only respond from my initial experience being exposed to a person with dementia.

It was my Mom.   My Mom and I would talk on the phone every Sunday as I lived 2,000 miles away.  I noticed a change in the conversations and at times just had to say oh, ok, or yes, I agree.  I sensed something was changing.  It was hard to converse at times and I didn't know how to respond or react so I imagine I was coming across as weird to her.   I was raised not to correct or talk back to our elders so essentially that was what I was doing…just automatically…I was being polite.  When I next visited I noticed various changes …confusion…slow, tentative reactions…struggles with simple tasks, difficulty with conversations and vocabulary changes (now peppered with cuss words lol)…I realized then that Mom possibly had dementia (she was 60 at that time).  On the next visit, it dawned on me that if I responded with calm confidence I was able to interact with her easier.  I know I was awkward and inept until it dawn on me how to change my actions and responses.  The experience/exposure with my Mom and then my MIL helped me in my journey with my DH (dx at 55) although I continued to learn each day something new it seemed over the last 10 j1/2 yrs caring for my DH. 

I feel a lot of people act weird due to minimal exposure, if any, to the disease and not understanding fully what is happening to the PWD…they look fine…healthy not sick, right?.   We find interacting at first to be awkward…We don't know how to adjust our communications or actions…we are inexperienced in understanding this disease.  We either talk to fast or too loud as if louder will get an answer or response or direct our conversation to the CG failing to realize the PWD is still capable of responding.  We fail to realize that the PWD  has to process what is said or work so much harder to complete a task.  The PWD is still the same person we have known for years who now has a disease that interrupts their ability to live their life without concessions.  We cannot empathize with the PWD.  Therefore we become awkward, uncomfortable, seemingly cold, not knowing how to interact with the PWD in a meaningful way…inadvertently blurting out silly remarks or insensitive questions or expect no change to what had been our 'normalcy'. 

 

I am thankful to the members living with this disease and sharing the ups and downs, your feelings and the work a rounds to continue to live life to the fullest.  You are all so amazing.

 

Ellen


Iris L.
Posted: Monday, June 26, 2017 1:50 PM
Joined: 12/15/2011
Posts: 18502


I think a lot has to do with our modern society.  I remember, when I was a child, people treated the old people better.  They just accepted that the old people would need more help, and that they would have to be more patient.  For some of the old people, people said they had "old timer's disease."  That was their way of saying Alzheimer's Disease.  They knew there was something wrong with them.


I think the modern people are so focused on themselves, that they cannot fathom the idea that another person has changed.  If they do notice a change, they don't care.  It's all about THEM.  They have no time to truly see another person.  This is what I have observed in my own life, with people who used to be very close to me.  I never asked them for anything, but to be understanding, but they couldn't even dredge up a bit of understanding.  This is why I don't disclose to anyone now.  I can't deal with the coldness, as you put it, alz+.

 

I went through a terrible period of anxiety in earlier years.  The psychologist, LCSW, senior advisor, and others were of absolutely no help at all.  I finally psychoanalyzed myself.  I determined that I feared not being able to handle any emergency that might come up.  Once I figured that out, the anxiety began to lift.  


Iris L.


BillBRNC
Posted: Monday, June 26, 2017 2:26 PM
Joined: 12/2/2015
Posts: 1018


Maybe it is just. but for the grace of god there go I. Or whatever the saying is. I can't remember exactly. Anyone over 55 has know someone who had dementia or cared for someone who had dementia. Everyone knows it is a very, very bad thing that ruins life and ruins financial security. Everyone knows, period. They want it to be something other people have, not something they could end up with. So ignoring it or shitting it out is the order of the day.
BlueSkies
Posted: Monday, June 26, 2017 3:19 PM
Joined: 2/24/2016
Posts: 1096


It really is sad what we have to experience with others.  I think others really do care though, but they have absolutely no clue how to show they care.  I try not to blame and try to understand.  They have their own issues to deal with, obviously.  I accept that many are now uncomfortable to be around me and that's okay.  It mad me mad at first, but I see it for what it is now and I am more focused now anyway on taking care of me and not what others reactions are to me (times are changing!).  Yes, I still get hurt by peoples responses sometimes, but I try to let it go as fast as I can so it doesn't cause me problems.  I already have enough problems.  I am all about me now.  I have to be.  I have no choice.  Just taking care of me has become a task that is overwhelming and full of this anxiety alz's talks about.  I consume each day with ways to keep it under control.  The more abilities I lose, the worse it is getting.  So it must be connected to that.  It's scary to be losing so much, how could you not have anxiety.  Perfectly normal reaction in my book.  So, I just accept it for what it is and treat it the best I can.  Number one, I accept my limitations are gone and probably not coming back.  I pray a lot, by mainly having daily conversations with God.  I feel we have a very intimate relationship (maybe I am delusional. if so I don't care.  I like it this way .  I meditate.  I use essential oils.  I use relaxing music and yoga.  I eat healthy.  I try to keep my family aware of what is happening to me and not hide it anymore.  And here is one I thought I would never say, is that I now take medication to relieve some of my symptoms.  I hate medication and never, ever planned to take any ever again.  But, I am finding that they do help and I am at the point now that I really have to do something.

So my take on all this is... Don't worry so much about what others reactions are.  (Yes, I know, easier said than done.  I have had my own little fits when felt hurt by others as many on here know very well) But really, we don't have time for it anymore.  It's time for us!  Spend your precious time on yourself.  Do what you need to do for you.  Know anxiety is a normal part of all this and it's probably going to get worse.  Just do the best you can at working through it and ask for help if you need it, it is out there.  Sometimes you have to scream to get the help, but who cares.  Scream if you have to.  Just get what you need.  

This is how I can describe how I feel with this anxiety...   I feel as if I am in the middle of this big lake and I am slowly sinking.  I can not get to the shore, no matter how hard I try. I know I need help or I am going to go under the water.  I see people on the edge of the lake.  I want to get them to throw me something, to help me keep afloat before I drown.  The panic is intense and growing as I yell and it seems no one hears me. (the anxiety).  I yell louder and flap my arms.  I am getting desperate and tired.  Finally someone sees me.  Already there is some relief.  I am not alone anymore. (This is a huge help to anxiety.  keep someone close.  Tell them how you feel.  Don't go through this alone.  Having someone ride this disease out with you will relieve so much anxiety.  It doesn't have to be a partner by the way.  It can be anyone, even a doctor who understands.)  Do whatever you can to stay relaxed and not frustrated or annoyed.  Listen to music.  use essential oils, they do help.  Watch nature and the wonders that it has to show us.  Mediate and most important, talk to your creator.  He will listen and comfort.  He is the one bringing us home after all.  He wants us to reach out to him.  Anyway, sorry, I didn't mean to preach.  I just want everyone who is suffering with this to take care of themselves and do whatever you have to do to ease the anxiety that is absolutely, a normal part of this disease. 


BillBRNC
Posted: Monday, June 26, 2017 3:57 PM
Joined: 12/2/2015
Posts: 1018


BlueSkies, you sure have been through the ringer this past week. Glad you survived, and it is nice to see that the doctors are working hard for your interests. Yes, of course, you are right as can be about this particular topic. My reply was simply answering the question that was asked, and I see I had a typo in my reply. Anyway, I can't spend my time worrying about what other people think or how them behave. It is all I can do to try to take care of myself, and also try my best to do right by my wife. She is having a hard time with all of this, plus some other stuff she has on her plate with her mother, who has advance vascular dementia, plus our son who is having trouble getting settled with his family. We are waiting on word from a CCRC that is about an 100 miles to our east. When they say they have an opening, we will be moving there, as my wife can get help for me in her quest to keep me out of the Memory House for as long as possible. Right now I can help plan the move, but who knows how long that will last. Yes, we must do what we can for ourselves and those we treasure. Good luck getting a final diagnosis. Bill.
chrisp1653
Posted: Tuesday, June 27, 2017 12:50 AM
Joined: 1/23/2017
Posts: 1327


I imagine that there are those people who truly are cold, but for many of us, it's a problem of perception. We don't see through the eyes of the person with dementia, nor do we see through the eyes of the one(s) who dearly love and care for the person with dementia. When I was a child, when I saw someone who was different from me, I would run to my mom or dad and they would explain to me why this person was different, but also why that difference wasn't important. I wonder what I would be like now if no one had explained things to me in a way I could understand. Even now, I can struggle with shifting my perception so as to see someone from a different point of view. I thank God for the soft hearted people He has placed in my path through the years who have helped me expand my views.

As we learn more about how to care for the ones we love, we can also learn how to teach others to see that different perspective. I have only been on this venue for about 6 months, but I have learned more here than from any book or any doctor. If I name names, I know that some will be left out, because even as a " normal " person, my memory falls short when I want it most. Still, the ones who come to mind right off are Mel, Nadine, Dutiful Deb, Veronica, Sharon Daugherty, Andy, Jim, and Blue Skies. With people like you, ( and the ones whose names refuse to pop up in my head right now , ) I feel like the coldness is a little less powerful, and that understanding has a greater chance.

Blessings,

 

Chris


alz+
Posted: Tuesday, June 27, 2017 6:00 AM
Joined: 9/12/2013
Posts: 3608


lots of interesting points of view.

I am still working off a wave of anxiety and still feel worn down from all my house cleaning and garage sale preparations etc.

Iris said she was afraid of not being able to handle an emergency, and when she processed that fear her anxiety went down.

Fear of becoming helpless - and ignored is maybe my general source of fear, and it isn't an adventure to live in a car anymore.

Yesterday I could not find the dog and walked around neighborhood calling for her. I felt sick. Keeper does not worry if she takes off and that causes me fear. Turns out she had been shut in basement. She does not bark or scratch, she was just sitting patiently at the top of the steps waiting for someone to open the door.

So I just realized I am anxious because my husband is much less on top of things and the responsibility is falling on me to notice pans left on stove, water running, dog missing. I relax when someone is confident and capable, in the past I was used to being the one who noticed the furnace not working, doors unlocked, need for plumber etc. Now I do not want the responsibility.

I did get the yard cleaned up and mowed and weed whacked. The junk was hauled away, the neighbors are happy too. The decks are rotten and the man who said he'd do them has not shown up twice.

****
so there is a generalized anxiety that can be worked with by becoming interested in the fear and resolving it. And a version that is just there.

****
in general people are more self absorbed,  whatever. Yes, the entire picture of having dementia is overwhelming, I work with that by living this hour, handling the moment.  People have so much to lose, I guess not having that makes it easier for me.

love and courage


llee08032
Posted: Tuesday, June 27, 2017 6:59 AM
Joined: 5/20/2014
Posts: 4408


I think it's part ignorance and fear of the unknown that makes people cold toward PWD. People these days seem more colder and rude in general and are so self absorbed and caught up with their gadgets and iphones. Eye contact and interpersonal skill set seems to have fallen by the wayside. There is an inflated sense of self importance to the point that it has become socially acceptable to answer your phone or text while holding a conversation with someone. 
BlueSkies
Posted: Tuesday, June 27, 2017 10:11 AM
Joined: 2/24/2016
Posts: 1096


Bill,

you have so much going on.  I imagine it is a very difficult time for you.  I am sure once you are moved and settled in things will stabilize again.  I think what you are doing is great.  It's difficult now, but will be worth the peace of mind later.  I feel the same as you.  I want to make things as easy as possible for my DH.  I feel for him and the pressure he must be under as he thinks about our future.  He is an amazing man, but he has to be frightened by what he sees.  He always try's to be strong, but I see underneath he is struggling at times.  I so want everything to be okay for him.  Anyway, I wanted you to know I am thinking of you as you navigate all these changes.  Hang in there!  We are with you!

Alz,

I find your way of dealing with anxiety very helpful.  Examining it as if it is an oddity instead of something to be afraid of has helped me tremendously.  I think it is a bit of dissociation.  Hell, dissociation is a gift at this point.   Anyway, thanks for the tip!

Chris,

So glad you are here and getting help from others.  You being here has helped me so much.  So you see, we are all helping each other.  It's wonderful and the way it's supposed to be.  Have missed you Chris.  Glad to see you here and posting!

llee,

It's so true what you said, that society as a whole has gotten so much more self absorbed as we get more gadgets and technologically more advanced.  It is a strange world now.  Close relationships seem to be made on line now, instead of in person.  Such a difference than when we were all young.  Who would have thought back then, we would have good friends, that we would never see.  Would have seemed absurd at the time, but here we are.  Life changes and we have to change with it and make the best of it that we can.  Remember when our grandparents and then our parents would say, it's not my world anymore.  Well, I am starting to feel that way also.  Guess it's our time...