Unintentional denial: How do you treat others with dementia?
The idea: Norms reports the extraordinary experience of his friends with dementia talking about another person with dementia and wonders if it was a form of denial, dealing with their own diagnosis or stigma. You decide!
Hiya:
My name is Norman (Norms) McNamara. I live in the UK and was diagnosed with Early Onset of Alzheimer’s three years ago at the age of fifty.
I have had a very interesting experience, which I want to share with you and would also love your feedback on it.
A couple of weeks ago a few of us with a diagnosis got together for a catch up. Unfortunately one of the people there wasn’t too well and it was quite apparent after half an hour that they weren’t themselves and all sorts of problem arose from shouting for their partner to denying wanting to be there and very repetitive statements over and over again. Now, the thing that fascinated me was the reaction of others with a diagnosis to these outbursts.
If you keep in mind that these guys, including me, have a diagnosis of Alzheimer’s disease and we are mostly all at the same stage, and ALL quite comfortable with it (or at least I thought so), their action from some was absolutely revealing to say the least!!
The shock on their faces as the person involved repeated the same story time and time again and got so wound up that he ended up storming out was an experience. One of my friends quite openly said, “He should be given something!! Surely there is something to stop that.“
Another said, “He sounds like is on something!! He has completely lost the plot!!”
I sat there in stunned silence for about ten minutes listening to them discuss this “Alien" illness between themselves before I stepped in with “Excuse me? Which path do you think your illness will take you and how would you like people to react when you possibly do the same thing?" This was met with “OH NO, this won’t happen to me!!"
I suddenly realised that after knowing these guys for months and months that in actual fact they haven’t really accepted their diagnosis and the wall of stigma was still as tall as ever!! Where I thought they were dealing with it, they were still actually in denial and hiding it very well!!!! (Admittedly something we Dementia sufferers do very well.)
This both saddened me and surprised me and the only thing I can think of is, it’s a fear of what they have just witnessed that made them react like this and maybe lack of contact with those unfortunate to be farther down the line than us.
But, and as you know, there is always a BUT with me, LOL, this has made me even more determined to rid this HORRIBLE disease of the Stigma that’s attached to it and one day have it talked about and accepted as much as any other illness.
I would love your thoughts on this please.
Best wishes, Norms and family xxxxxxxxxxxxx
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Comments
Response to yours and mine journey into "dementia"
I say our JOURNEY into IT.
Like yourself I have a diagnosis of four years now of early onset Alzheimer's disease with evolving or overlapping Frontotemporal Dementia.
Due to my traumatic journey down this Alzheimer's path with my father, I understand where this early onset Alzheimer's is taking me. When he died, my sister and I finally received some release, as did he.
People with early onset Dementia MUST learn and understand that early onset is that just that-early--without the fullness of the symptoms that the end of our journey brings us. The end of our journey is "Dementia" in the truest sense of the word. Unless you have traveled this journey with a loved one, it is difficult to accept or understand the disease and what it does to our personal dignity when our coping skills are taken away from us and we behave badly (as I have been prone to doing).
The lovely people in my Alzheimer's support group--my fellow travelers--are moving down into harsher stages in their journey into Dementia. My heart grieves with them as I'm still holding tight to my mental capacity. BUT I am aware that my turn is inevitable.
I have met so many people saying, "I have Dementia," and who seem to be functioning unaffected in their daily lives and who communicate a positive lifestyle through it. NO NO NO--this must stop; they do not have Dementia YET... Not the Dementia that my father had.
Stigmas cannot be changed unless we change what we communicate and how educate each other with the reality that "Dementia" means "I have lost my mind and lost my brain skills." That's what the community gets confused about--and those with the disease also.
Instead, I think we each must say, "I have a diagnosis of 'early onset Alzheimer's/Dementia' and one day--HOPEFULLY in the VERY distant future--I will have 'Dementia'." Then perhaps reality and acceptance can come from our community and within our own group of friends who also have the disease.
We all need to understand the reality about the high security facilities (Editor's note: locked or secured memory units or mental health units). The people in these facilities have Dementia, just like my father. It's a rough journey but the end is a reality that we must accept, and live as positively as we can until then. Denial keeps us from accepting those that are nearing the end of their journeys, those who have lost the ability to behave as we expect them to and desire others to also.
I did one of those "Dementia" melt-downs at an airport on my way home to WA from the London convention. OOH, it was so disgusting, embarrassing and a trauma for me to know and have to accept this type of out-of-control behavior from myself, behaviour that overwhelmed me. It was hard, not only for myself, but for my dear husband to endure.
So my response is for reality, knowledge and acceptance for us all... to support and love and encourage each other during this journey, "whatever" may await us down the road.
Thank you, Carol.
DeNile is a river that runs deep and fast in most of us
Hello, I appreciate and have experience similar experiences in conversations with friends living with dementia. Since we don't bump into our symptoms every second of every day - it's not like a pain in the ass - it does become a pain in the ass to us when we do. I refer to it as a glass of ice water thrown in my face by Alois.
I wish I could do everything, everytime that I tell others to do, but I confess I don't. I've been lost (in another moment) and have note I just initially try to cover it up, when I fish for words I feel the pressure building in me to find one, or I change the thought, or make a joke of it. I too share your comittment to ro ridding these symptoms of the stigma that seem to be attached to them. I too talk about it every chance I get, but it doesn't seem to have erased them from my own heart and mind....Richard
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