Dementia language and PWDs

Iris L.

The language that is used to describe PWDs is disheartening and demoralizing, IMO.  I don't see any hope for the future.  When I first joined, a PWD  referred to himself as "brain-dead".  I gently chided him, telling him he was not brain-dead and to not refer to himself that way.  But several caregivers also used that term to refer to their LOs.  A caregiver whom I greatly admired and respected would respond to new members by referring to her approach to her own mother as how she would treat a "trained monkey".  This caused me to leave the boards for a few weeks, because I felt so bad for my fellow patients.  I did not like that language for them.  But I continued to read disturbing words.  Members talked about their LO's reasoner being broken.  Or their brains being turned to mush.  I was told if they disturbed me, not to read them.  But I couldn't stop reading.

The reason I couldn't stop reading is because I relied so much on what I learned from the caregivers.  My first interaction with caregivers was when two ladies remarked that a PWD should not have access to a stove.  I responded and objected, because I was having difficulty with the stove, walking away and leaving pots and lit burners unattended.  Well, those ladies insisted.  I felt very bad.  But I thought about it.  I was on this message board because I was in deep trouble and I needed help.  I was in bad shape!  They knew what they were talking about.  I decided to listen to them and follow their advice, even though I didn't like it.  They literally saved my life, because I'm sure I would have started a fire, and hurt myself or my neighbors!

Another demoralizing thing that happened in the early days was that some PWDs talked about suicide.   It was as if the only future for the newly diagnosed PWD was to accept becoming a brain-dead trained monkey or suicide before getting to that point.  In fact, suicide was a theme of the highly regarded book, Still Alice.

PWDs travel backwards, functionally.  Their functional level may be like a child, but they are not children.  They have had adult experiences, but they can no longer function in the adult world.  It's truly demoralizing!

What to do about this?  For myself, I came up with the concept of being a Dementia Pioneer.  Being a Pioneer was the only way I could cope with the disheartening and demoralizing realities of having dementia.  But one PWD objected to that language, because I don't actually have dementia.   Instead, I have a dementia mimic.  So I stopped using that term on the boards, even though I still think of myself as a Pioneer.  This is the only way I can cope and go forward each day.  

Reading these boards is frequently hard for me.  But I feel that if I can make a contribution, I have an obligation to do so.  Because I have been helped so much, even during the times when the help was difficult to hear.  Unfortunately, it seems that much of the language of the world of dementia is nothing I want to read.  I get triggered when I read certain words or statements which may in fact be reality for the poster.  But it is disheartening and demoralizing to me.  There used to be more PWDs reading the caregiver boards, but now I think no one reads except myself and Michael.  I'm going to try to be less triggered.  I don’t think the language is going to change. 

Iris 

Ed1937

Iris, I'm sorry. Unfortunately, you are probably right about the language not changing. But I can understand why it would upset you, and I think people should think about what effect their words might have on others.

Pathfinder52

Dear Iris --

Like Ed, I'm terribly sorry that we (those of us who are caregivers, and on this board, spouses) are so offensive.  I doubt that this is anyone's intent but that doesn't excuse the thoughtless use of derogative terms for any human suffering an illness -- and certainly our loved ones with Alzheimer's disease and other related dementias are suffering.

I wrote a book for caregivers and in creating it, I repeatedly used the term "loved one" but an editor cautioned me that for many caregivers, the relationship with the person receiving their services is anything but loving.  Sad to say, in many families this is simply the truth.

So, in many places throughout the book I changed my language from "loved one" to "care recipient" or "the person in your care."  It seemed the logical way to deal with the many, varied circumstances families face.

In this place, and on this board, it would seem we could stick to the Commonly Used Abbreviations and take guidance from your reminder that we are not the only readers of this information.  While it may feel good to have a safe place to vent, it is not necessary for any of us to be rude, or to disregard the feelings of those who are dealing with the disease on a far more personal level than a caregiver can.

Thanks for your commentary. 

Warmly,

--p

Joydean

Iris, I do understand how words are triggers. When I was a child , raised in foster homes, there were always very derogatory words repeated over and over until they became so ingrained in my mind I believed them.  Even to this very day when I hear a particular word I’m transported back to that time. Words can take me back there but I’ve worked very hard to realize I don’t have to stay there. 

I for one want to thank you for all your wisdom that you share with us, also the courage it takes for you to do so. I once told you how much I admire you, I was still new here, but I can honestly say my admiration for you has grown. I look for any of your post on all the boards. 

God bless you! 

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Mint

Iris I apologize if I have used words I shouldn’t have.  Will try to be more aware.  Have learned a lot from you.

Iris L.

Another demoralizing term is that the PWD is becoming a shell of a person.  I just read that twice today.

I am not writing to disparage anyone, but as food for thought.  If PWDs are thought of in these terms, no wonder there is so much fear and despair among patients and families. 

I realize language is a huge deal to address.  Personally, I fight to reject fear and despair for myself.  It's a daily fight and struggle.  This is my philosophy.

Iris

John1965

Please have patience and grace, even if language is offensive on its face. Simile and metaphor are tools for understanding. For the most part, comments on this forum are coming from a place of love/pain/frustration. It’s not like the KKK is trolling to hurl insults to the cognitively impaired. It’s struggling caregivers attempting to explain their thoughts. While some lack PC instincts, they are not intentionally offensive.

dayn2nite2

I totally get the "shell" reference, but while I admittedly did view my mother's body as a "shell" I always felt she was in there, sometimes I just had to find her but sometimes she would peek out all by herself.

Well into stage 7 long after any spontaneous conversation was gone and I did most of the talking, I was leaving one Friday night and kissing my mom goodbye.  I said "I'll be back tomorrow for dinner" and she lifted her arm, held my cheek in her hand and looked me directly in the eyes and said "Beauty."

I cried all the way home.  I had a number of those experiences throughout the disease and the aides did too.  She was always in there.

MaryG123

Iris, please understand that each person’s journey is their own, and try not to take things said here too personally.  As was said earlier, those of us who are on this forum are doing the best we can under difficult circumstances.  While the general public can probably benefit from increased awareness and sensitivity, the special folks here need your understanding and encouragement.

Just Bill

Hello Iris, I hope I haven't offended you in my description of my wife's condition as I have shared this journey as a caregiver with this group. I try to be sensitive when describing my wife's behavior and I try do it in a way that is dignified and wouldn't disrespect her.  I try to use humor sometimes to illustrate how something made us both laugh but sometimes finding humor in this situation may be painful to some. If I have accidentally crossed over the line I apologize. As I write about the continuing adventures of care giving for my wife I will be mindful of your feelings before hitting post. Have a great day.

Iris L.

To Mary and everyone else: Believe me, I know you are all sad and dealing with your situations as best you can.  I was trying to use myself and make an analogy about how I overcame deep depression and despair by changing my perspective and my language.  I went from being a dementia victim to being a Dementia Pioneer.  I am not here to tell anyone how to feel.  As for myself, I refuse to live in despair.  I do feel bad every day, but I have learned steps to overcome feeling bad and in despair every day.  I must emphasize that each day is a new day of despair, but each day I work to overcome despair and depression.  I believe that many of you are in the same mode.  I want to say that even if your situation is dire, you have the capability of overcoming despair.  I must add that what I learned about changing my perspective and language, I have learned from the members here, both patients and caregivers, over the years.  

This is my own philosophy.  I hoped that my philosophy might help some others.  I do not mean for my philosophy to be a mandate for everyone else.

Iris

MaryG123

I’m sorry you’re feeling bad Iris, and admire how you fight the despair.  Hugs to you!  O

toolbeltexpert

Iris I really do not know if I have used any terms you've described. If I have I certainly wasn't meaning them to demoralize anyone. I do understand. I wanted to comment that my dw is always saying she is stupid and boy do I let her know she isn't stupid, sometimes she says thanks for my words.  But I will not let her demoralize herself. Somehow she knows that her Brain is dying, "her words".   I almost can't stand to see her under medication because of the side effects. There is no rest from all of the things that are changing. I do think anyone here who has dementia and is still able to express what's going on is a pioneer because of the ability to share on such a large platform. Great things come from the experiences that are shared here.