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Bad experience with a PWD
Iris L.
Posted: Saturday, March 24, 2018 7:05 PM
Joined: 12/15/2011
Posts: 15411


I edited this thread because it involves someone else.  Suffice it to say that I had a bad experience with a PWD who berated me to exercise, to join a gym and to get a dog.  "You have to join a gym right now!"  "You must get a dog!  A dog will get you out of the house!"  On and on she went, even though I told her I'm not interested in getting a dog.  "You're not interested in your health!"  "You just want to sit and die!"  I tried to divert the conversation but I finally gave up and told her that I had other calls to make.  I didn't want to say anything rude.  I tried to remember that she seems to have lost her ability to understand social cues, such as my wanting to change the topic.  I don't ever want to talk to this woman again! What an experience!  


 

Iris L.
eaglemom
Posted: Saturday, March 24, 2018 11:23 PM
Joined: 3/7/2012
Posts: 2147


I'm so sorry that happened to you Iris. I think you handled the situation as best as you could. I would hate for you to give up attending because of this one woman. I would attend the next meeting and try to place yourself away from that woman. If she tries to engage you a simple "oh I've got to chat with ______" and walk away. I'd say her filters are slipping, sadly.

eagle


Iris L.
Posted: Sunday, March 25, 2018 12:15 AM
Joined: 12/15/2011
Posts: 15411


Thank you, Eaglemom.  That sounds like good advice.  I can't handle pressure to conform to someone else's idea of what I should do.

Iris L.


Jo C.
Posted: Sunday, March 25, 2018 8:36 AM
Joined: 12/9/2011
Posts: 8879


What is that old prayer?  "Lord deliver me from good intentions."  Double down on that for people who harangue and insist they know best despite having lost their filters or not.  We sure do run into all kinds.

You really did very well; I can understand not wanting to be afflicted with this person's phone calls any longer.  They kind of resonate for awhile after the call.   Nice to screen calls and not answer or even block a person's number. 

 If one lands with such a call,  it is so easy to say the doorbells is ringing or you have company or whatever, and terminate the conversation.  No need to be polite.

I am sorry you had to experience that; I too have run into some of that sort and made the decision not to let that into my life.

Big hug Iris, only you know your comfort zone and what is right for you.  I admire your strength.

 J.


llee08032
Posted: Sunday, March 25, 2018 9:13 AM
Joined: 5/20/2014
Posts: 4321


Oh my Iris. It is not helpful when others give unwarranted advice in such a pushy way! A dog would not be a food fit in your life with the kitty's. Sorry you had this experience.
jfkoc
Posted: Sunday, March 25, 2018 9:23 AM
Joined: 12/4/2011
Posts: 15110


Why do some people think they really know what is best? I was first aware of this when Dick died.

How little others know what we, as individuals, need. I would prefer a hug!


Iris L.
Posted: Sunday, March 25, 2018 10:14 PM
Joined: 12/15/2011
Posts: 15411


I'm understanding more about this disease.  It's more than memory loss.  Loss of social filters is an important factor.  

It feels good to be around people who know how to handle this.


Iris L.





Michael Ellenbogen
Posted: Monday, March 26, 2018 8:57 AM
Joined: 11/30/2011
Posts: 2038


 I have been there an done that. Does it hurt to just listen to the person and make them feel good. You don’t need to do anything. Just remember they may not have some one else to talk to and they may feel like they can help. This is what may be keeping them going. We should be more sympathy to those folks. Do you want others to treat you that way??? I know its hard but its all about doing some good for someone else. 


Iris L.
Posted: Monday, March 26, 2018 3:24 PM
Joined: 12/15/2011
Posts: 15411


What if doing good for someone makes me feel bad?  I felt very bad after that telephone call.  So bad that I never want to speak with her again in my entire life!  She totally disrespected me!  It's one thing to say she can't help herself, but I don't have to go through that again.  And I won't!  I've got to protect myself.  That was not a conversation, that was a verbal assault.  She said some horrible things to me.  It's unfortunate, because she and I were the only two patients without a care partner.  I thought we could be friends.  But we will not become friends.  In fact, I feel like she is now my enemy.  


 Addendum:  In my working years, I could handle a great deal of emotional stress and drama.  Now, I feel vulnerable and I can't tolerate much.  I have to avoid potentially devastating situations for my own protection.   I know that feeling vulnerable will seep into other areas of my life and things will be even more difficult for me.

 

Iris L.


jfkoc
Posted: Monday, March 26, 2018 4:11 PM
Joined: 12/4/2011
Posts: 15110


Sorry it went beyond "advice" and into "horrible". No, you nor anyone else needs that.
Michael Ellenbogen
Posted: Tuesday, March 27, 2018 6:51 AM
Joined: 11/30/2011
Posts: 2038


I am so sorry you feel this way Iris. I guess this is not for you. I listen to so many people just to listen and to give them an opportunity to vent. So many times I hate hearing what is being said but in the end,  I know I made that person feel just a little better. I have done this all of my life. And for all of the organizations I have worked for. 


Alexander_Green
Posted: Tuesday, March 27, 2018 8:16 AM
Joined: 3/9/2018
Posts: 37


While I am sorry you had this experience, I also realize I could easily have been that person.

Is it possible as a person with dementia or something related to dementia, that you are taking this very personally and not dropping it?

I know that for me, many people around me have dropped it when I have done something that, in retrospect, I might have found inexcusable even in myself, when I think about it, and allowed me to move on within the relationship.

Other times, trusted persons have pointed out to me some of the things I have done that are indicative, or now I can see are indicative, that something was wrong in me but they have still found it within themselves to continue to accept me, or at least I think they do.


Iris L.
Posted: Tuesday, March 27, 2018 12:32 PM
Joined: 12/15/2011
Posts: 15411


Michael, being a good listener is a valuable asset.  Mimi and others always promote validation.  It's very necessary.

Welcome, Alexander.  Am I taking this personally?  Yes, I am.  All through my illness I have been called at various times to be malingering.  That is the professional term for faking.  That is how this woman presented to me.  If I didn't want to exercise the way she wanted me to exercise, then I was not motivated according to how she thought I should be motivated.  All I have done for the past thirty years is try to figure out what was wrong with me and try to fix it.  She doesn't know what I have been through, nor did she ask.  I reached out to her as a fellow patient and a potential friend, and I was rewarded with a verbal attack that I didn't meet her expectations.  I don't need that.  

Alexander, in your case, interventions by trusted friends can be beneficial.  That was not this case.  


Iris L.


Horse Lover
Posted: Tuesday, March 27, 2018 6:18 PM
Joined: 11/4/2017
Posts: 107


Iris, I'm so sorry that you had this experience.  I have had similar experiences with an individual on this site.   I just didn't like the direction that the conversation always went while talking with them and  I just had to tell them that I was no longer interested in carrying on private conversations with them or anyone else (on this site).  Another thing that I use with someone else that always seems to work is that I tell them I have to use the restroom.  Somehow, they seem to understand that concept and it gets them off of the phone.  Otherwise, they talk forever and push their political viewpoints.  I tried telling that person that I didn't want to talk politics but that didn't work.  So, every time the conversation goes that direction, I have to "use the restroom".  I hope this helps. 

I know that I personally don't have much, if any, of a filter.  So, I hope I don't get on anyone's nerves or hurt their feelings.


Iris L.
Posted: Tuesday, March 27, 2018 7:21 PM
Joined: 12/15/2011
Posts: 15411


I am sorry when anyone has trouble on this board.  I have learned just about all I know about taking care of myself and what to do from this board and the caregiver boards and the Ask the Care Consultant board (from the old board).  Living with dementia is not at all intuitive.  We need specific guidelines!  I hope we can continue to lift each other up and educate and inform and commiserate and encourage.


Iris L.


CF257
Posted: Friday, March 30, 2018 5:34 PM
Joined: 2/2/2018
Posts: 24


I can never remember what these abbreviations mean!
CF257
Posted: Friday, March 30, 2018 6:23 PM
Joined: 2/2/2018
Posts: 24


I can never remember what these abbreviations mean!
Iris L.
Posted: Friday, March 30, 2018 8:41 PM
Joined: 12/15/2011
Posts: 15411


Which abbreviations, CF?  


There is a small glossary at the right side of the page under Help Info.


Iris L.


llee08032
Posted: Saturday, March 31, 2018 8:00 AM
Joined: 5/20/2014
Posts: 4321


PWD (person with dementia)
abc123
Posted: Monday, April 2, 2018 10:57 AM
Joined: 6/12/2016
Posts: 187


Iris!!!! My goodness! So sorry you had to endure that conversation! Geeze! I would also steer clear of her and avoid phone calls. Thank you for sharing this with us. I have learned a lot from everyone who replied! Also, thank you for the addendum! It's as if I wrote it! I feel the very same way. 

Jo C ~ I wrote down "Lord deliver me from good intentions.

Horselover ~ I will use "I have to go to the restroom" as an escape method when in public.

jfloc ~ I agree that sometimes "A Hug" is the best thing!

Michael ~ I understand the point you were making about helping others to feel good. I was this type of person for most of my life. I still take the time to stop and listen to someone who needs to be validated for whatever reason. But I feel like the person Iris encountered was more of a bully. AND I run from those type of people. 

Thank you everyone! 


Blaize
Posted: Sunday, April 15, 2018 2:34 PM
Joined: 10/7/2017
Posts: 26


Iris,

I'm reaching through this computer to give you the biggest bear hug. {{{hug}}}

Thankfully there's safety and compassion here and right now it's just for you.

{{{{{HUG}}}}


Iris L.
Posted: Sunday, April 15, 2018 2:46 PM
Joined: 12/15/2011
Posts: 15411


Thanks for the hug, Blaize.  I'm working on moving on.


Iris L.


alz+
Posted: Sunday, April 22, 2018 12:38 PM
Joined: 9/12/2013
Posts: 3203


what an interesting conversation! sorry I am late to it.

First I am impressed you talk on the phone, and second you talked with someone who has dementia! I have tried it, all pleasant calls, but phones set me off and drain me so I  avoid them.

Get a dog! Exercise! blah blah blah.    Iris, you handled it perfectly and benefited all of us by sharing your experience.

When I am low on brain battery power things like that set me off and sometimes I can not get them out of my head for days, years! The suffering - which was very uncomfortable, oppressive thinking - happens when the other person says or does something when I am weakened.

When I am full of goodwill and stamina I can be polite-ish and not think about it after. In fact I am encouraging some forgetfulness when it comes to that stuff.

Now when I do things like this person, well - sometimes I can't repair the damage or I don't care enough to try. I think people care a lot less about stuff than I do, which led me to learning to stop taking offense.

My rate at Not Taking Offense depends on various factors, some days I feel like the Buddha Christ for all the Not Taking Offense I do, some days I insult intentionally and since I see fewer people than prisoners in lock down we know it is Keeper who gets most of those quips.

The people Michael is talking too are coming to him for support and he has always been good at offering it and has a lot of practice even today doing this, so for him, he would not even have to consider Not Taking Offense because it is not part of him.

We say things, we do things, and when we are forgiven -  or when those around are able to understand It's the illness barking, nothing personal - oh it is like heaven!

It is our prerogative especially having a terminal illness to decide to cut off people who are likely to push our buttons. My sister keeps sending emails every month that she misses me, and every one of them I consider allowing contact again and then, no. I know what would come of it and it is nothing good.

Maybe as women we have had to appease so much...well at least no matter how crude I am it's not like I am going to lose a date or a job over it! Ha! Also when I am a little curt or throw an insult out of my mouth which was supposed to be a private thought, I say "it was the disease talking" and quickly forgive myself which is infinitely more pleasurable than being kind to someone I think is an asshat.

There is sometimes fun in rethinking these interchanges and coming up with bon mots that rattle the intruder to my peace. The problem here as Andrew I think pointed out is losing my brakes. So far I have not been arrested for anything and that is bar for feeling bad about anything now. No cops, no problem.

So I expect to be both Iris and the PWD more than a few times, giving and recieving unwanted unasked advice.

****

By the way, being accused of faking, dramatizing etc is really common and causes serious and lasting pain in many people who are suffering.

I am pretty sure many of us were thought to be malingering or we are diagnosed with some mental disorder before we were told it is Alzheimer's. I just went thru a mental sideshow of reciting to myself a string of stinging quips I would say to the psychiatrist who gave me a drug that caused Tardive Dyskinesia after I read the other day that the drug SHOULD NOT BE GIVEN TO ANYONE OVER 50, NOR TO WOMEN, AND FOR SURE NOT PEOPLE WITH DEMENITA because of a high risk for TDK. It set me off. My tongue rolls around and makes me choke and some days I can't stand it! I wear a mouth guard which stops it from turning my lips into shredded skin but cripes.

I have yet to apply my concept of Take No Offense to that but I will not complain to that doctor about it. I know it was not intentional.

*******

Iris you are doing so good you might not even know. This is not easy!



Lisita
Posted: Tuesday, April 24, 2018 6:30 PM
Joined: 4/3/2018
Posts: 57


Hi iris advice people love to give it we don,t like to take it ! I joined a gym love it water aerobics yoga it’s great to stay active %! Why is life so complicated ! 

Lisita


Lisita
Posted: Tuesday, April 24, 2018 6:57 PM
Joined: 4/3/2018
Posts: 57


Hey Michael we will keep on keeeping on keeping on.  Are you in SC 

Lisita


Lisita
Posted: Tuesday, April 24, 2018 7:00 PM
Joined: 4/3/2018
Posts: 57


What a picture God is with us . 

Lisita


alz+
Posted: Monday, May 14, 2018 6:42 PM
Joined: 9/12/2013
Posts: 3203


Iris - 

although we may have different illnesses we sure have similar events on our lives and similar reactions.

A  PWD (person with dementia) who I communicate with randomly contacted me and resented my good mood which to this person indicated by itself I DID NOT have Alzheimer's. 

This was in the context that I write about having "good days" - not meant as any attack nor was I being called a fraud, but it hit me like a ton of bricks. Did not help that this happened on same morning I got photos of a former internet dementia friend looking healthy and walking a child after believing this person was no longer alive.

My world crumbled under these 2 emotional exchanges and I was knocked off my feet for 3+ days, in bed, shaky, could not think or function.  what happened?

I asked my husband if he thought I was pretending to have Alzheimers and his reaction of "ARE YOU KIDDING? There has been no doubt for years..." also hit me hard.  Took me over a week to begin walking dog again! 

 I wonder if these reactions are from being hit with an avalanche of ???  sensitivity hormones/fear chemicals. Possible from brain changes?

Some of us "over react" to any sort of perceived emotional danger, it came at me - overwhelming  flood gates opened and boom - wow.

How did you recover from this?  I am working on getting back my foolish happiness by pep-talks and whatever it takes.

My time to mentor other people is passing. Respect these emotional avalanches, take good care of yourselves when the happen. They pass.


Iris L.
Posted: Monday, May 14, 2018 7:20 PM
Joined: 12/15/2011
Posts: 15411


Years ago when I was diagnosed as having systemic lupus, I felt embarrassed when I felt good, because I believed that with a serious illness, I should feel bad.  NO!  This is not so!  Whatever I feel, is how I feel.  I don't have to have emotions according to society's standards.  That's the way I feel today.  It's hard to buck society, though, because they want us to feel bad all the time.    Some people believe that PWDs feel bad because they are losing their memories.  I feel bad about different things, but not about losing my memory.  Oddly enough, I don't even think about it that much until something happens to bring it back to my attention.  


As far as the initial incident with the PWD over the telephone, I had already forgotten about it, until just now.  One very important lesson that I learned from Michael Ellenbogen is the ability to move on to the next thing in my life.    It sounds simple, like I should already know this, but no, I learned it from Michael.  With Michael, this lesson stayed in my head.


As far as the other comment you mentioned, life is too short to be fixated on dead end thoughts.  I have things going on in my life and I want to enjoy what is enjoyable, not ruminate on something that is going nowhere.  Yesterday there were thick clouds in the sky, and I spent several moments observing the clouds and enjoying them.  I picked this up from you, alz+.  


Tomorrow I will go see about my heart, and learn if there is something significant going on.  I'm glad you are now back in good spirits.  Please draw on the good feelings from your reunion with your family.  I enjoyed Mothers' Day yesterday, thinking about my mom and grandmother, and all my aunts and cousins, those still here, and those who have passed on.  It was a good day!


Iris L.



 


alz+
Posted: Tuesday, May 15, 2018 9:33 AM
Joined: 9/12/2013
Posts: 3203


Iris - do you think there is any merit to my cascade of chemicals theory of "over reaction" to __________?

I felt like I had the snot knocked out of me, and today is a little rocky again.

Self talk and whatever it takes to find some peace. However, I am not putting down those dark days and nights some of us go thru for a long time when diagnosed.

My writing does not convey what is in my heart, so best I teach myself really short responses.

happiness: practice, practice, practice  because happiness opens hearts and gives ourselves and others strength


Iris L.
Posted: Tuesday, May 15, 2018 7:24 PM
Joined: 12/15/2011
Posts: 15411


Alz+, I'm going to try to answer you by giving you an analogy.  When I first seriously began to deal with cognitive impairment, I tried to keep myself on an even keel.  I didn't want any ups and downs in my life.  I had a realization that my life had been about ups and downs, but in my past life, I was always able to handle the ups and downs, like a duck floating on the waves of the water.  No matter what came at me, I could take it.  Now I couldn't take it.  I had to even out the waves and the troughs.  I was sad at first, because life without the waves is not as exciting.  But it is more manageable.  I had been at the point where my life was in a standstill--like a frozen computer.  Nothing going in, nothing coming out.  I knew I couldn't live like this.  I had to figure out something!  So I figured out how to modulate the waves.  I figured out how to live my life and have my life function again. 

 

As a physician, I heard all kinds of demoralizing talk, but I could take it then.  Bad talk rolled off me like water off a duck's back.  Now I have become sensitive to bad talk, even hypersensitive.  I never was like this before.  But this is how it is now.  This is how I am now.  I had to figure out how to deal with this.  I couldn't change the bad talk, because the bad talkers are everywhere, and they like to talk.  But I could learn what I needed to do to protect myself from their bad talk.  I learned to remove myself from the bad talkers, first.  If that didn't work, I learned to counteract their bad talk with good talk.  This includes my affirmations and other things that I say to myself, along the lines of what you posted in your "self-talk" thread.  I also learned, as I said above, to move on (from Michael).  


I say all that to answer your question.  Yes, I do believe we can become over-reactive to things that didn't bother us at all in the past.  I can't explain how it happens; cascade of chemicals is as good a theory as any.  It happens, and it's going to keep happening.  We have to learn to put up new barriers, because we didn't need them before.  We don't have to explain ourselves.  We just have to protect ourselves.  We have to do whatever it takes to keep our balance.  No one else is going to do it for us.  We have to do it.  We are worth it!


What I learned about happiness.  Happiness is not having what you want, but wanting what you have.  I have learned to focus on what I have in my life and to enjoy those things, of which there are many.  Hallelujah!  It's a work in progress.  


Iris L.


alz+
Posted: Wednesday, May 16, 2018 12:53 PM
Joined: 9/12/2013
Posts: 3203


My experiences with intense emotions and the bodily sensations seem very  similar to what you describe, and what you protect yourself from.

I apply similar self helps when I get overwrought. The thing is not just being "upset" but that it drains all my energy to do anything, not even stand up,my legs quiver, I stink, it feels like a panic attack and yet my mind is not fearful or racing. 

That icky tense trembling stuff feels like toxins, as if my endocrine system is dumping out random gallons of poisons. This is all apart from learning to counter my own negative/pathetic messaging by any and all means available.

Let it go - that is also getting more natural for me and what a gift. Taken me forever.

Thank you for such a thoughtful and complete response. I think about things you say for months, I think many of us do. One day years ago I  think MISH wrote about how gloomy we all seemed and mentioned that she had either traveled or been having fun, participating in life. I had never seen her name before and not again for a long time but it helped me IMAGINE being happy even with dementia. why not?

love to everyone


Iris L.
Posted: Wednesday, May 16, 2018 5:52 PM
Joined: 12/15/2011
Posts: 15411


Yes, why not be happy, even with dementia or cognitive impairment?  It's time we made our own rules.  These are our own lives!  I don't have panic attack feelings, but I do have generalized anxiety feelings.  I shared about this today at Memory Club.  I have an idea to help me counter this.  I came up with the idea of being a Dementia Pioneer to help myself deal with everything, because I had been a pioneer in other areas of my earlier life.  I can still be a pioneer in my older years, and make a new pathway for myself.  I take what you and others have had to say, alz+, and use them as cobblestones in my new pathway.


Iris L.


 
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