Talking of things that grate...
Yeah, you know, like, is now ringing round, you know, in my head, you know, like, yeah
Yeah, you know, like, is now ringing round, you know, in my head, you know, like, yeah
Dementia--Words we use
- Thread starter Norrms
- Start date
Words
This isn't a journey! This is a descent into hell! I remember people used to use the word 'demented' as a derogatory way of referring to someone they didn't like. It is derogatory indeed. My Mother had this starting at about age 50 and I didn't know what to say to her or how to help her and she finally took suicide as a way out and I understand what happened to her now. You can lose your legs, arms, eyes, hearing and still continue on a useful 'journey.' This is nothing but hell ...................
This isn't a journey! This is a descent into hell! I remember people used to use the word 'demented' as a derogatory way of referring to someone they didn't like. It is derogatory indeed. My Mother had this starting at about age 50 and I didn't know what to say to her or how to help her and she finally took suicide as a way out and I understand what happened to her now. You can lose your legs, arms, eyes, hearing and still continue on a useful 'journey.' This is nothing but hell ...................
The word demented I don't like and have never used it, a journey I have no problem with. I have always thought of life as a journey, travelled over smooth ground and not so smooth ground. We in our life have made a wrong turn or two and ended up in a cul-de-sac but always managed to get back on the straight and arrow. We now continue the journey with dementia and I don't know of a more suitable word to use instead of journey.
Basically. Drives me mad. It is a word that means nothing when starting a sentence, you know what I mean?
Jay.
Sent from my iPad using Talking Point mobile app
Basically. Drives me mad. It is a word that means nothing when starting a sentence, you know what I mean?
Jay.
Sent from my iPad using Talking Point mobile app
Death March
The first 'journey' that comes to mind about this is the Battaan Death March during WWII or the marches that the Jewish people were on when they took them to the death camps. There was a ride I used to go on at the carnival when I was a teenager where it was scary and you knew it was going to be scary. There was howling and frightening noises and monsters came out at you at a certain point. While there are no noises or monsters with this, it is equally as frightening ................... maybe a monster or two would make it more interesting though ....................
The first 'journey' that comes to mind about this is the Battaan Death March during WWII or the marches that the Jewish people were on when they took them to the death camps. There was a ride I used to go on at the carnival when I was a teenager where it was scary and you knew it was going to be scary. There was howling and frightening noises and monsters came out at you at a certain point. While there are no noises or monsters with this, it is equally as frightening ................... maybe a monster or two would make it more interesting though ....................
Good points
Hi NORMS, I also am diagnosed with dementia, the belief at this point is that it is atypical Alzheimer's Disease (frontal variant). I hate when people say we are all dying, it minimizes what we face and makes you feel as if you are complaining over some minor thing! I do think often people mean well and are at a loss for what to say, much more education is the key to putting an end to people taking in hurtful ways about the disease. I was first diagnosed in 2007 at the age of 48 and either am blessed or cursed depending on how you look at it with very slow progression. I am very active in advocating and self advocating and applaud you for letting your voice and opinions be heard. Saying it is a journey isn't something that has particularly bothered me in the past but I do understand why it bothers you, it depends on how one thinks about the meaning of the word, if it is a word that you only associate with pleasant things then it is indeed a bad word to use. If it is a journey, it is one you wouldn't wish upon your worst enemy! Also another point of contention that has recently been brought up in some circles of those diagnosed is caregivers saying they are experiencing dementia as if in the first person of being diagnosed with it. We understand they have a VERY difficult task and one every person that is diagnosed is quite grateful for but they are experiencing CARING for someone with dementia, quite different that experiencing first hand what it is like for your brain to die bit by bit. Thanks for reading and for all of you interested or pursuing the goal of making the quality of life for those of us living it a little better!
(Side note: the avatar is tongue in cheek, a joke referring to the old show Boston Legal in the US where character Denny Crane who had Alzheimer's kept insisting he had Mad Cow)
Hi NORMS, I also am diagnosed with dementia, the belief at this point is that it is atypical Alzheimer's Disease (frontal variant). I hate when people say we are all dying, it minimizes what we face and makes you feel as if you are complaining over some minor thing! I do think often people mean well and are at a loss for what to say, much more education is the key to putting an end to people taking in hurtful ways about the disease. I was first diagnosed in 2007 at the age of 48 and either am blessed or cursed depending on how you look at it with very slow progression. I am very active in advocating and self advocating and applaud you for letting your voice and opinions be heard. Saying it is a journey isn't something that has particularly bothered me in the past but I do understand why it bothers you, it depends on how one thinks about the meaning of the word, if it is a word that you only associate with pleasant things then it is indeed a bad word to use. If it is a journey, it is one you wouldn't wish upon your worst enemy! Also another point of contention that has recently been brought up in some circles of those diagnosed is caregivers saying they are experiencing dementia as if in the first person of being diagnosed with it. We understand they have a VERY difficult task and one every person that is diagnosed is quite grateful for but they are experiencing CARING for someone with dementia, quite different that experiencing first hand what it is like for your brain to die bit by bit. Thanks for reading and for all of you interested or pursuing the goal of making the quality of life for those of us living it a little better!
(Side note: the avatar is tongue in cheek, a joke referring to the old show Boston Legal in the US where character Denny Crane who had Alzheimer's kept insisting he had Mad Cow)
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Hi Norrms
And all of the comments above. The most important thing is to communicate, openly and freely. If we occasionally use a word someone finds unacceptable, but know what is meant, then it has communicated it's meaning. But also thanks, Norrms, my wife is also diagnosed, and thoughts like yours, help me to understand her pain, confusion, fear and try to help her along each day. Makes me a better, more understanding carer to help her through this. Regards.
And all of the comments above. The most important thing is to communicate, openly and freely. If we occasionally use a word someone finds unacceptable, but know what is meant, then it has communicated it's meaning. But also thanks, Norrms, my wife is also diagnosed, and thoughts like yours, help me to understand her pain, confusion, fear and try to help her along each day. Makes me a better, more understanding carer to help her through this. Regards.
Hiya all
Thank you all so very much, its great to talk, and discuss, its the only way forward xxxxxxxxxxxxxxxxxxxxxx
Thank you all so very much, its great to talk, and discuss, its the only way forward xxxxxxxxxxxxxxxxxxxxxx
I have two pet hates at the start of a sentence:
"With the greatest of respect...." because you know what is about to follow will be totally without respect.
"What you fail to understand........" this one makes my blood boil a relative uses it all the time and then comes out with something pretty obvious. I don't know if they realise how patronising it sounds, I'll let you know what I understand thanks.
I feel better now for getting that off my chest.
"With the greatest of respect...." because you know what is about to follow will be totally without respect.
"What you fail to understand........" this one makes my blood boil a relative uses it all the time and then comes out with something pretty obvious. I don't know if they realise how patronising it sounds, I'll let you know what I understand thanks.
I feel better now for getting that off my chest.
With the greatest of respect, what you fail to understand,
is you HAVE to see that .......
I don't have HAVE to see anything, especially if they are trying to waffle their bland pompous statement about something that has caught their fancy for a nano- second ( could be talking about politicians, if that's how you read it
)
I believe that no-one on this forum uses any word in order to cause offence, and it is very hard to talk about things if we have to constantly worry about which words to use.
I personally don't like the word 'journey' either, but not because I find it offensive (admittedly I do not have dementia, and Norrms I respect and understand your opinion) but because I feel that it's a bit contrived and over used. But other people may feel differently, and that's okay with me. I don't like to think that someone might be worried about posting because they don't know the 'correct' words to use.
It might stop someone reaching out for help.
It makes me anxious, the thought that I might offend someone with the words that I choose to use, and I often write, delete and re-write before posting. But I'm pretty good at English and can usually manage - I hope - to come up with acceptable alternatives. Perhaps not everyone has that ability - and there, you see, I sound patronising when I don't mean to be.
I have even thought twice about posting this opinion because I don't want to upset anyone - least of all anyone who has dementia.
x
I personally don't like the word 'journey' either, but not because I find it offensive (admittedly I do not have dementia, and Norrms I respect and understand your opinion) but because I feel that it's a bit contrived and over used. But other people may feel differently, and that's okay with me. I don't like to think that someone might be worried about posting because they don't know the 'correct' words to use.
It might stop someone reaching out for help.
It makes me anxious, the thought that I might offend someone with the words that I choose to use, and I often write, delete and re-write before posting. But I'm pretty good at English and can usually manage - I hope - to come up with acceptable alternatives. Perhaps not everyone has that ability - and there, you see, I sound patronising when I don't mean to be.
I have even thought twice about posting this opinion because I don't want to upset anyone - least of all anyone who has dementia.
x
Words
I haven’t posted on Talking Point for a while but I think this thread about the words we use place on a Alzheimer’s forum does nothing to help or support a person with Dementia or encourage them be on talking point to respond to threads especially when because of their Dementia they struggle to find the words in the first place for 23 years I wrote Building maintenance contracts now with my dementia I struggle to write anything and if I was in conversation with someone those and can’t find a word or get lost they are replace with swear words so spare a thought that some members on talking point with dementia Can write eloquently and some members struggle , if you know a person with dementia surly you would notice this
I haven’t posted on Talking Point for a while but I think this thread about the words we use place on a Alzheimer’s forum does nothing to help or support a person with Dementia or encourage them be on talking point to respond to threads especially when because of their Dementia they struggle to find the words in the first place for 23 years I wrote Building maintenance contracts now with my dementia I struggle to write anything and if I was in conversation with someone those and can’t find a word or get lost they are replace with swear words so spare a thought that some members on talking point with dementia Can write eloquently and some members struggle , if you know a person with dementia surly you would notice this
I have removed my quote as it referred to "my journey" and I would not like to upset anyone! But then again to me life itself is a journey with no known destination for any off us!
I don't mind in the least that some don't like a reference to their journey, but i'm happy to continue mine and in the new year pleased to say that it could improve for myself and daughter, my carer.
I wasn't looking forward to visit to Memory clinic, seen someone different each time but it has proved to be fruitful in that I am to get more help for with my physical deterioration, which will be a godsend to us both and its proved my mental condition is considerably worse so will get some form of medication in new year! So a good start to a new year So one Journey well worth making
Have the best Christmas you can everyone and a happy and fruitful new year to everyone Jeanie xxxxx
I don't mind in the least that some don't like a reference to their journey, but i'm happy to continue mine
and in the new year pleased to say that it could improve for myself and daughter, my carer.I wasn't looking forward to visit to Memory clinic, seen someone different each time but it has proved to be fruitful in that I am to get more help for with my physical deterioration, which will be a godsend to us both
and its proved my mental condition is considerably worse so will get some form of medication in new year! So a good start to a new year So one Journey well worth making Have the best Christmas you can everyone and a happy and fruitful new year to everyone
Jeanie xxxxx
Hi
We are each different and have our own take on things, thats what makes the world go around, a very Merry Christmas and a Happy new Year to all xxxxxxxxxxxxxxxxxxxxxxx
We are each different and have our own take on things, thats what makes the world go around, a very Merry Christmas and a Happy new Year to all xxxxxxxxxxxxxxxxxxxxxxx
I hope that you will not be discouraged from discussing your experience in this forum because some members have found the word 'journey' to be a vehicle in which to examine their disease process more closely. There is nothing wrong with using it at all. However, I find the word Journey to be a rather benign description of this process. I think of my experience more in terms of having my mind hijacked by a terrorist. I am an American though and as such I think we are a bit more scrappy than you Brits. One of my favorite poems is, 'Do Not Go Gently Into That Good Night' by Dylan Thomas and that is how I currently handle what is happening to me..
Everyone's expression is different and please be comfortable with yours ... God Bless .........
Everyone's expression is different and please be comfortable with yours ... God Bless .........
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