Dementia--Words we use

[Norrms]

WORDS
WE USE

Often in our language we use words sometimes before we think. As a person with Dementia one of these “Words” that really gets me going is the use of the word “Journey” when it comes to dementia.

Can I just state categorically I am not on any “Journey” with Dementia!! I am not going to catch the 1 o clock ferry to France with it!! Or jump on a National Express coach for a weekend in Bognor Regis with it!! As I open my eyes every morning I am at WAR with this sly, pathetic disease every moment of every day. Wondering when the “ The Battle to End all Battles will begin with my most fiercest foe which will either end in myself losing and slipping ever closer to dementia`s grips, or, standing proud and loud because there has, at last, been a cure found !!

A “JOURNEY”?? I think not!!

Sometimes when I speak to people I explain that this is a terminal disease and unless a cure if found sometimes all I can think about is how I am dying and can do nothing about it. Then some ones says “We are ALL dying” or “We could all get knocked down by a bus tomorrow”

RIGHT !! First of all, the chances of us all getting knocked down by a bus tomorrow is highly unlikely to say the least!! As is the chance of the person saying this, but at the end of the day whatever the Chances are, the person with Dementia STILL HAS DEMENTIA!!! There are no “Odds” there apart from all the odds being stacked against them!!

Also, the saying “We are all dying “”?? Do you know anybody who goes through their life thinking “Ah well, that`s another day closer to death!!! Not many I would bet!! Yes, we all die eventually but thankfully not all of us die of dementia!! Or contract something that is totally incurable at the moment.

So come guys, have a heart!! Please just think about what you say sometimes and just think how it could affect the person with Dementia, or indeed their family!! I know sometimes people think by saying whilst smiling “We are all dying” but “REALLY??? you’re not helping!!

And just to finish, someone once said to me

“Dementia? My friend had that once!!
????????????????????????????????????????????????????????????

Sometime I despair!! LOLL xxxxxxxxxxxxxxxxxxx

Love to all, Norrms and family xxxxxxxxxx

 

[Jaycee23]

Thank you for that. I cannot say I know how you feel as I do not have dementia. But I will say the way I feel for my poor mum is heart destroying and would do anything for this (cannot say the F word but feel like it!!) to go away. I cannot think of any illness worse than this and I worked many years in mental health and it is something that scares people the most. I think some people just do not always know what to say do they? I am profoundly deaf and when I cannot hear people I tell them and the say Oh I would not have guessed your are deaf but at least you are not blind! Yes I would not like to be blind but don't like being deaf either. Some people are just tactless and do not think. Take care

 

[Norrms]

Jiya

Thank you my friend xxxxxxxxx

 

[2jays]

I apologise Norrms I'm one of the people who use the "journey" word.

I promise never to use it again.

Xx

 

[Norrms]

Hiya

hello my friend, its just my humble opinion , much love, Norrms, Elaine and family xxxxxxxxxxx

 

[2jays]

hello my friend, its just my humble opinion , much love, Norrms, Elaine and family xxxxxxxxxxx

I respect you so much, "your opinion"

which by the way should not, in my humble opinion, be humble

is now my opinion

I learn something valuable, every time I hear from you.

xx

 

[LYN T]

Sorry Norms

I've used the J word

I didn't think how that would be viewed by the posters who use this site who have dementia. I won't use it again on this site.

To be honest I think I use it because I hate using the words 'dead' or 'death'

You really do give all of us a tremendous insight into the ghastly world of Dementia and for that I will always take on board what you say.

Take care

Lyn T

 

[Norrms]

Hi

Hello my friend, no apologies needed and thank you for reading my posts xxxxxxxxxxxxxxx

 

[Saffie]

I think 'journey' is a a word that has entered into present day vocabulary.
Even those hopefuls on 'X factor' are always 'on a journey'!
I do though use the word 'road' when talking about either someone suffering from dementia or those caring for someone so perhaps that is offensive too.
However, to me is is a means of describing the way ahead as in 'The long and winding road'.
I am really sorry if that upsets you too Norms.

 

[Norrms]

Hi

You would never upset me my friend xxxxx

 

[Saffie]

Thank you Norms, I would never want to.x

 

[carpe diem]

Hi, I never use the term "journey" as it does not occur to me that anyone is more on a journey than the next person. My family has always had someone with AD it's just normal to me.
What I hate is the word "dementia" taken from the latin to mean madness. Surely in the 21st century we can do better than calling our friends and relatives mad (they are not mad, they are ill). I normally say mum has some memory problems but this does not cover it really.
Can anyone suggest a new term for dementia? or am I alone in hating this word?

 

[Norrms]

Hiya

Sorry my friend, we have enough problems trying to get the Gps diagnosing dementia and Coroners using the word "dementia" on Death certs without trying to change the word, all my love, Norrms xxxxxxxxxxxxxxx

 

[Sue J]

Can anyone suggest a new term for dementia? or am I alone in hating this word?

Sorry my friend, we have enough problems trying to get the Gps diagnosing dementia and Coroners using the word "dementia" on Death certs without trying to change the word

I hate the term 'dementia' because as you say, Carpe Diem, it does not describe the condition at all and whilst I see your point Norms I do think the term itself is demeaning. The term also stops Drs looking for other causes of 'dementia symptoms' because of course it must be 'dementia'.

Re. journey - I too understand what you mean Norms.

Journey through life we all take, it is a means of expression, dementia is like a ******* big detour that I certainly didn't buy a ticket for and a detour I did not request - so I'd really like to get a refund. Guess what - you can't get a refund! so it is a daily battle for all involved. Your frustration shows in your post Norms and I hope I haven't added to it .
Best to you and yours
love
Sue

 

[Norrms]

hiya

Not at all my friend Sue J xxxxxxxxxxxx

 

[Barry]

I can understand what you mean Norrms “BUT” life in-itself is just one long journey for everyone, so you don’t like the term journey in association with the illness and that’s your own prerogative and to be very, very honest I don’t like the way the our once beautiful English language is used today with all the slang and abbreviated words such as (Blog, LOL, and Blah, Blah, Blah,) and a term that drives me mad when used is (At the end of the day) but then that’s my prerogative…
We have a wonderful language so why can’t people use it correctly!

“Blog, LOL, Blah, Blah, Blah...”

‘Oh’ alas, alas for our beloved English language...
Oh Where, Oh Where can thee be...
As even more new slang words keep coming along,
Now attuned to modern computer terminology,
It seems that now anything written or spoken,
Becomes a Blog, LOL, or Blah, Blah, Blah,
Why can’t we use our English language correctly?
The way Shakespeare and Dickens intended it to be,
A language with such strength, power, and beauty,
When spoken correctly ‘Tis heaven unto the sky,
Now it becomes like the word dementia,
When used, it becomes a Red rag to a bull,
An English laureate or teacher must cringe,
When they read Blog, LOL or hear Blah, Blah, Blah,
True I’ve forgotten names of things with my illness,
The use of good English and grammar now in my past,
Now a tomato is ‘One of those round red things’
And soap is now ‘A smelly thing used on your arms’
Maybe I’m not a good exponent of the English language,
But please no more BLOG, LOL or Blah, Blah, Blah,
Send them to where they belong, with the word dementia,
Into a recycle bin, afar, afar, afar...

Barry

 

[Saffie]

Spot on Barry as usual. As LOL apparantly can mean 'lots of love' as well as 'laugh out loud', it often turns up in the most inappropriate places for the latter too!

You didn't mention"Je no wot I meen" though and that really gets to me!!!

 

[Grannie G]

I`m glad you`ve posted Barry.

I too feel all life`s a journey and Norrm`s post made me anxious about using terms which I find more than acceptable, but which might cause offence to others.

And I do like your grumble about the development of slang and abbreviations in the English language.

It`s not slang or an abbreviation but my pet hate is the use of `basically` at the beginning of every sentence.

 

[Saffie]

`basically`

Now you've got me thinking!
Trouble is I think I might be using it all day today now as you've planted it in my mind!!!
The 'Do you know what I mean' annoyance is frequency of use. The actual asking to ensure someone understands what you are saying is fine but every few words or so?

Once we are aware of someting being repeated, it grates every time it's said though doesn't it? I remember being in a lecture and thinking I would scream if the speaker said "Um" one more time!

 

[jeany123]

I hate it when you are talking to someone on the phone and they keep saying "no problem" I always think no it shouldn't be, it's what you are paid to do!!!