The stigma is still there

[shelagh]

I've had a lot of pleasure in the last six months going with a friend to a classical music group. We listen to programmes chosen by members, very enjoyable, and then go to the pub. Tonight as we were leaving, someone asked me if I had ever driven ( I was being teken home) and I said that I had driven for many years but had had to give up my car when I became ill. 'No one would ever know you were ill' someone said,can I ask you what is the matter with you,'
'fueled by a glass of wine I said easily I have Alzheimer's Disease'
Oh God. Eyes were averted, people looked away people were embarassed, one pair of eyes filled with tears. If I had taken all my clothes off I couldn't have embarassed them more.
I HAVE ALZHEIMERS DISEASE BUT i STIL LOVE MUSIC, I CAN STILL TALK ABOUT MUSIC, I CAN STILL TAKE PART IN A CONVERSATION, I'M NO DIFFERENT THAN THE PERSON i WAS BEFORE THEY KNEW. WHY DO I FEEL IT WILL ALWAYS BE DIFFERENT FROM NOW ON.

 

[Onlyme]

Please don't think things have changed. Your friends are just ashamed of themselves as they are tongue tied and don't know what to say. I think if I was told by a friend that they had AD I would now offer them a hug. No words can tell someone how we feel on hearing the news for the first time and what you saw is a room of people who would have loved to say something supportive but didn't know how. That is their loss.

Keep on enjoying your music and doing what you enjoy.

Loads of cyber hugs from me.

 

[Grannie G]

Oh heck Shelagh.
Lemony is so right. Your friends don`t know how to react and they are the ones who are embarrassed .
I`m sorry they embarrassed you in turn. xx

 

[longacre]

I am afraid I might have done the same five years ago before I really knew anything about Alzheimers which my father had and died last year and my mother currently has. Now I would feel how thrilled you were part of the group, how courageous you were to be open about it and I would probably give you a hug as well and then talk about music - if our tastes coincided that is! Dont judge other people too harshly. They just dont know what to do.

 

[florence43]

Dear Shelagh,

I don't know what to say. I suppose because Alzheimer's is such a large part of my life, that, naturally, the stigma isn't there, but I do understand, one step further back, what it's like to get "the reaction".

Whenever I mention that my mum has dementia, I could put money on what sort of look I would get. Head slightly tilted, mouth temporarily turned down, and eyebrows turned in...the sympathetic look. I'm not annoyed by it. I suppose that's kind...that people realise how sad it is to have ANY illness which affects one's life to this extent. But how I would cope if it was ME who was the receiver and the cause of the look, the reaction and the awkward silence? I really don't know.

Isn't it funny? If you had a physical illness of an organ (heart disease, for example) you'd still be entitled to enjoy music, arts, theatre, or sport for that matter. There would be no question. But the other major organ? The brain? Nope. That's odd. Still out socialising? Liking music?

It sounds so strange to us, as a community, but I suppose the reality is that the awareness of Alzheimer's is still trying to fight the stigma, but it has a long way to go. In a way, can we blame others' ignorance? But I would hate to think it will stay with you, or prevent you from doing anything.

There are many who understand and many who don't. I suppose that's just how it is. But how you handle it, and swallow it without getting hurt, I just don't know, other than by telling yourself it's ignorance on their part, not intentional spite. The latter would be far worse. And like like many situations, you may know how to deal with it next time you see them at the time. Just trust your instincts and they will get you through.

Or.....just take all your clothes off, and see if that does embarrass them more...

Chin up. Their blunder, not yours.

Lots of love,

 

[Necion]

Hi Shelagh, Long may you continue to enjoy your music, and your glass of wine!
It's definately the other people who have the problem with embarrassment. All down to understanding and awareness - or lack of - is my view.
One day, hopefully soon, the stigma will be lifted, as it has been with other serious illnesses.
Good for you for answering these 'friends' honestly. Give them time, they'll come around one day.
Take care, Love, Necion. x

 

[parkerdart]

So Sorry

Hi Shelagh-I too am so sorry that you were made to feel so uncomfortable when you were being enjoying a night out. I am glad that you have your good friend that takes you to the music and to the pub. I hope the stigma can go away sooner than later because it is so very hard to not feel in so much control of yourself at times let alone feeling the desire to educate the thoughts and feelings of others. My son has his masters in social work and shortly after my being diagnosed with vascular dementia, he came over with this very big book and sat me down on the sofa and said-"Okay Mom, let's find out a little more about this disease." It was one of his old college books and the title of it was "Mental Illnesses". I probably too did sound a little nasty back then to myself because I thought I cannot have a mental illness - I am not crazy. People are all going to be thinking I am crazy. Well, truth be known, I have always probebly been a little crazy, too independent, too opinionated and I guess my list could go on and on. I do not think people want to be mean spirited toward us...they just do not know any better. Before this happening for me, I thought dementia = alzeimers. I did not know of any of the other gazillion kinds of dementia. I kind of look at it that if someone is mean spirited about one thing they probably are about other things too and probably not so much the type of people I enjoy being around - sick or not sick. Stay being as active as you can be and enjoying your good days to the very, very fullest. I miss driving myself places and my sons live 2 and one half hours aways for now. Your friend sounds like a God send. Take good care now, okay! Vickie

 

[piedwarbler]

Dear shelagh,
Maybe I know a tiny bit of what you feel. When I tell people I'm going to have chemo some look away or look at me as though I've just said I've got a week to live. Some avoid me completely.
The best way round it for me is to tell people by text or e mail, or get friends to tell people, so I don't have to face their reactions, which can hurt. Then people can compose a reply in their own time or they can avoid me, I don't mind.
People are shocked & upset & I understand that. If they are true friends they'll hug you next time they see you. Some gifted people know just what to say. A lot don't.
Take care xxxx

 

[Nanak]

I would maybe have looked like that a few years ago I'm ashamed to say. It is a knee jerk reaction to the unknown.
I have worked with disabled children for 3 years now and to be honest everything I would ever have been embarrassed about has gone out of the window. I now look at other people avoiding looking at us when we are out with our 'teenagers' some shouting some making grunts and wish I could tell them that we all have a right to be here and everyone is still capable of love.
Good for you and so glad you are still able to enjoy your music and a glass of wine (or two?)
Pieds idea of emailing everyone first is a good one. You eliminate that image of people trying so hard to compose their face into a sympathetic/shocked/aghast/sad look all at once
Not a pretty sight.
Nanak
missing what has gone and scared of what is to come

 

[lin1]

Hi
Im so sorry that their reaction upset and embarrassed you.

They are the ones who should be upset and embarrassed not you!!
Having said that When Ive been told a friend or family has a serious ilness . I have reacted with stunned silence for a while swifty followed by so sorry n often a hug .

Its often the shock when first told, that causes the stunned silence ,not knowing whaf to do or say to the person initially,

Give them time to digest it.

Next time you meet them , be your usual self ,enjoy yourself,
and you may well find that many if not all will supprise you in a good way .

xxxxxx

 

[shelagh]

Thank you so much for all your support. I love the suggestion about REALLY taking all my clothes off. While I've been away from Talking point I've been busy losing two and a half stones so it wouldn't be the horror scene it once would have been.
Glamorous Granny me - you bet.
Glamorous Granny with AD - OK. But I still love life

 

[Grannie G]

. While I've been away from Talking point I've been busy losing two and a half stones

Oh well done Shelagh. I`m still struggling.

 

[sistermillicent]

Well done with the 2 and half stones Shelagh. I find people are still very shockable and judgemental despite our supposed more accepting society. I hope your friends get a grip and that you continue to enjoy your group.
x

 

[Logan]

I hope that this does not upset anyone on this site, but I feel if I were in a similar position telling "a nosey parker" for why the heck did they want to know anyway! I would feel very inclined to say "oh I see that you are quite embarrassed by the fact that I have AD". Now! would your embarrassment be lessened if I were to do a strip!!!!!!! I have come to the conclusion that only by really shocking people will they step back and take on board any severity. We are what is within us, our soul, our spirit ourself - Clothes do not really maketh man/woman - only compassion one to another does that. With love to you all. Lx

 

[creativesarah]

lots of support shelagh know how you feel!
I announced in a smaller meeting at church (not to the whole church) that I had been diagnosed with Vascular dementia
a couple of people came and said I was really brave and one girl has kept in touch as it inspired her so much. There was rather a sharp intake of breath when I said it, keep on going to the music group chat enjoy and make the most of it.
I have had to give up driving someone said to me the other day "do you miss driving?" I couldnt believe it I'm devastated but I do manage to get out and my GP got me a bus pass and a disabled badge. People are keener esp if they know parking is easier/free!
Go for it, dont think i'll go for the taking my clothes off bit theres too much of me!

 

[lin1]

Shelagh
Good to hear that you have lost weight, ive put it on

 

[Barry]

Hi Shelagh

I can imagine just how you must have felt facing this situation which is something I have to deal with everyday out here in Indonesia where the illness is viewed with stigma manly due to people’s total non-understanding or awareness about Alzheimer’s disease and in my opinion despite all efforts being made that stigma still prevails in the UK and many other parts of the world and will continue to do so until none sufferers come to terms with the fact that its just another illness and not an infectious disease or a mythical curse… so other people become embraced by the own ignorance!!

Barry

 

[Looby]

Stigma's still there

Hi Shelagh - when you look at the awareness and advertising for cancer and the lack of it for Alzheimer's it's no wonder that people don't understand the illness. My hairdresser just thought that all it is is losing your memory!! My Mum forgot how to use a knife and fork and ate with her fingers - a family (Mum, Dad, Gran & children) in a local restaurant found this quite entertaining until I said, "Alzheimer's is such a dreadful disease isn't it". They apologised after. People are embarrassed because of ignorance. Carry on enjoying the music and life too.

 

[Sanke]

Ad

I too found that when I told people my Mum had AD she got the pity look. My Mum made me smile so much and she too smiled more than I can remember in the past. Where her mind took her was a happy place. I lost my Mum to AD last May. There is a poem which I read at her funeral which was about 2 mothers and this kept me very positive throughout her illness. I miss you Mum - God bless X

 

[KenC]

Some people can be very cruel, when it comes to this illness, but I always think that I am just as good as many people these days, yes I have this illness and yes I have problems, but I don;t victimise people and use the stigma which many use these days.
I do feel that many are just too ignorant, and don't really wnat to know what this illness is, or how they can help us. they jus bury their heads.

Don.t give up, be enjoy everything as it comes and forget the hypocrites

Ken