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does the term dementia set the horror show scenario?
alz+
Posted: Friday, August 3, 2018 10:44 AM
Joined: 9/12/2013
Posts: 3549


I noticed the FTD people changed the name of their illness from Fronto Temoral Dementia to Fronto Temporal Disease because "dementia signifies a degrading condition that causes undo harm to the patient".

People who do not have "dementia" have no clue what is going on inside me. I might be standing still staring off and an observer would think there is an empty shell. When my Dad had ALz and sat for hours staring off into the distance I considered it likely he was rethinking his life, maybe things that haunted him from WW2, I know he worried about my mother and worried if he had been a good enough dad.

But by labeling me "demented" I become refuse.

We don't call people with developmental disabilities "retarded" anymore because there was stigma, it was insulting, demeaning. 

I think if we changed the name of the illness from dementia to something else with - in fact - a more accurate word for our condition it would be more helpful than all the drug trials. It costs nothing, effect would be immediate.

There is a physical deterioration that goes on aside from memory, a general weakening of systems. I can report this because I take cbd oil and once in awhile can grab a moment when I can type about what it is like inside the stare. still my toes curls under, my left leg gets weaker, hearing and vision diminish, digestion slows, the weakness is now profound.

Every person's journey is unique. The least medicine could do is get rid of the horrific label. When I am staring, or lying curled in ball in my bed, I have visions, thoughts, am experiencing things deeply. I can not keep up a conversation, I dislike being part of loud conversations, not the same as being an empty vessel.

******

these thoughts occurred to me reading a comment section a couple weeks ago where they were discussing whether our president has dementia and people were talking about relatives who had it or have it and the comments were so degrading! "He gets all amped up because he wants his long sleeve pajamas and they get lost in nursing home laundry" was one. 

He mocked his uncle's behavior etc and it made me feel ill. So this man, who is suffering in a nursing home clings to one thing that is still HIM, his long sleeved pajamas, and that is ridiculed.

a woman responded that "maybe you could buy him 4 pair of the long-sleeved pj's so he would always be able to find a top and bottom".

 I wrote back to her that her kind insight touched my heart and how strange it is people mock those of us going through...a slow death of constant losses and that I loved her for that

 She replied that my comment made her weep and that she had often felt she was crazy for seeing thru the bs of her loved one being a nothing with no feeling, no awareness, no worth.

I have seen people come into the room of someone dying of "dementia" and behave as if the person is 6 feet under already. I have had my hair grabbed and tousled about like I am a child, people ignore me, avoid eye contact (I now avoid eye contact with those recurrent people), and been mocked by my own family for crying when brought into an  overwhelming place and later cheated out of a large part on my inheritance  because my brother yelled, "You are incompetent! You are demented!" That sort of thing sticks with me a long time.

it is a neuro-degenerative disease process, it is likely from either gene issues or/plus an infecting agent. I personally believe the plaques and tangles are defensive moves on the body brain against being attacked by foreign substance.   Not being able to keep up with conversations or express myself rapidly enough does NOT mean I am not still a thinking, feeling, experiencing human wanting love and affection to be mutual!

I am cranked up today on anger about stuff I can not control or help.

what do you think? would it make a difference to you if we lobbied to change the DEMENTIA label to something more humanizing?

Time for a limp to corner and back.




MPSunshine
Posted: Friday, August 3, 2018 5:21 PM
Joined: 5/21/2016
Posts: 1959


Hi, alz+, how about “people from the stars?” I, for one, am proud of you.
SunnyBeBe
Posted: Friday, August 3, 2018 5:36 PM
Joined: 10/9/2014
Posts: 782


I think it's a good idea.  I was over here, from the Caregiver forum, because, I enjoy the posts here so much and I learn a lot, Alz+.  I don't ever really post, but, felt compelled when I read this idea you have, because, I think it's great.  Until, my LO was diagnosed with dementia, 4 years ago, I didn't know anything about it really.  I've learned a lot, but, one thing is that the average person has no idea what dementia means. Yes, they may have a negative reaction, but, I think they are equally perplexed about it. 

I think that along with a new term that more adequately reflects the condition, more information about the condition should be provided.  I'm sure that's a challenge, because, even some health care professionals are in need of information. And then there are those in our society who are just so cruel.  I wish I could change that. 


alz+
Posted: Saturday, August 4, 2018 11:53 AM
Joined: 9/12/2013
Posts: 3549


thank you for thoughtful replies.

  I asked my country doctor osteopath how many years back from diagnosis she could tell there was something off in me and knowing my Dad and his mother had it.

she said "quite a few"

then why not suggest finding out?

 said, "we were afraid to mention it".

Why afraid? because of it's reputation of being an illness where our humanity is suppose to dissolve. People see what they believe, who is going to correct them?

One could look at my condition and imagine a person in meditation. since the concept of Time becomes weirdly useless as I go along maybe I am becoming a champion of mindfulness.why not think that?

then I could say "I am almost a mystic."  Maybe instead of nursing home warehousing we could go to a monastery.

I will keep thinking of a term that might fit my condition better then "Dementia".  This is because cbd oil restores my ability to talk, writing is easier as I can take all the time I want to think and correct and edit, so I am sharing the physical aspects as best I can.



Amor Fati
Posted: Saturday, August 4, 2018 12:42 PM
Joined: 1/9/2016
Posts: 66


alz+ wrote:

One could look at my condition and imagine a person in meditation. since the concept of Time becomes weirdly useless as I go along maybe I am becoming a champion of mindfulness.why not think that?

then I could say "I am almost a mystic."  Maybe instead of nursing home warehousing we could go to a monastery.


 In my opinion you are right on both accounts. Time does stand still for us in a strange kind of way. It is like we are living in a different dimension now. I would also say that you are a mystic. You have gained wonderful insights over the years. You are more and more able to see things with your inner eye. To me these are the rewards of this journey. 

As Michael Fox said, "For everything lost, something is given in return".  And Martin Buber,"All journeys have secret destinations of which the traveler is unaware." And Erich Fromm, "Love is the only sane and satisfactory answer to the problem of human existence." So enjoy the ride. Nothing to fear--you know that. Blessings abound.



Michael Ellenbogen
Posted: Saturday, August 4, 2018 4:55 PM
Joined: 11/30/2011
Posts: 2654


I just recently wrote something similar about dementia.

 

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