The stigma is still there

[AlsoConfused]

We don't always treat each other as we'd hope to do. I'm reminded of my own recent experiences reacting to one neighbour who'd been bereaved and a friend whose irritating ailments had just been diagnosed as terminal illness, likely to result in death within weeks.

In each case, I was painfully aware that more sensitivity and better words were required of me than I could offer. A hug - to make up for the trite words - wasn't possible in either situation. So you do the best you can, knowing the worst disservice is to ignore the other person because you can't find the right words to say.

I think your friends, having stumbled across a situation they couldn't handle, shared the same embarrassment you and I would feel in other circumstances.

 

[jumzya]

Dear shelagh,
I believe you are getting over the embarasement with the loads of encouragement coming in,i couldnt have said more.People dont understand and i believe they will in time,as we continue matching on as a community,being brave to talk about it as u did and coming up with many initiatives to raise the awareness,the community becomes larger and stronger which will end up creating more awareness and the stigma a thing of the past.
Its our call!

 

[popplestone]

stigma

Do not be afraid of telling peolpe about you illness. My husband has ben diagnosed recently and we have made up our minds to be open about it.

We have found friends accepting understanding and helpful.We are out to lunch tomorrow with old friends.

Telling the wider community brings the illness to the public and I have found that it is better to tell because it saves embarresment when Alan does the wrong thing or says the wrong words.

When I talk about it Ithen hear so many stories about other people who have the illness that I am beginning to think there is an epidemic where we live. Popplestone

 

[cymro1]

good on ya Sheila, Enjoy yourself.

Hi Shelagh

Good on ya love for doing what you enjoy, My wife Sylvia was diagnosed with early stages back last year and up to now she is'nt too bad really, for how long of course we don't know but we are off to new Zealand for a trip next week and we bought a boat so that we can go boating on the Swan river here in Perth, Western Australia which is beautiful with plenty of picnic areas so don't stop doing what you enjoy until you absolutely have to we are'nt and I know we will enjoy ourselves for as long as we can.

I have only visited this site a few times as honestly we have been too busy and I think that in itself is a good therapy.

Good luck dear and best wishes to you.

Cymro.

 

[earth angel]

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.

hi, i think that most people dont understand it and they are frightened of what they dont understand, also they dont know how to handle the situation ,how to react, im sure they will realise that you are always going to be you they will relax its just the inicial reaction x

 

[sussexsue]

That was very brave of you Shelagh and in your own way you are doing a great job in breaking that stigma.

Try not to be too hard on your friends, none of us are perfect and we all make mistakes in the way we react. Lets hope you can enjoy many more musical evenings with them.

My mum has had AD for about 8 years now and is obviously very different from the person she was at the start, but for the last 2 christmas' that she has been living with us she has been invited back to a christmas lunch with her friends where she used to live. They also regularly phone up and chat to her. True friends

 

[Amps]

Stigma

Well done to you for saying you have Alzheimer's. It is only through people like you, brave enough to tell others so that they can see you are no different that the stigma will go. Those people did not mean to be unkind, they will think about their reaction and handle it better next time. Congratulations for striking a blow to remove the stigma.

 

[sunny]

Well done Shelagh - what else can you do - but look people in the eye and say it to their face - square on - and also keep saying it and also never hide away and keep on enjoying life to the full - you can actually change people's attitudes just by being you and by doing that you will help others in the future who will also develop this disease.

 

[marylyn]

marylyn

New user. My Husband has picks, is there any one else
out there with this condition, as I can not find anyone
else whose husband or wife has this type of dementia.

 

[shelagh]

Hi Marilyn, welcome to Talking point - I'm pretty sure there ate people with Picks who use TP. You need to post your request as a new thread not as a response to someone elses.
I hope you find this site as supportive as I do
Shelagh

 

[MissisT]

Hallo Marylyn and welcome from me too. My husband has Alzheimer's but I think there are people who care for others with Picks.

Shelagh is right, a new thread would be best and probably a good idea to post it in the section of the forum headed 'support for people with dementia and their carers' simply because there are generally more members in there. Just select the section I've mentioned and click on the yellow 'new thread' button, top left.

Teresa x

 

[peppermind]

I personally think it's to do with their ignorance.. I know some ppl are functional and are still able to enjoy life despite the diagnosis.

I tend to think such stigma would not help for the neurologists to feel encouraged in looking for the sign of this disease.

thank you for sharing. xx

 

[Alberte]

Still Alice by Lisa Genova..living with it!

Hi yes it must be devasting to be told you have Alzheimers....then you have to learn to live with this hidden disease....it's funny if you break a leg if you have cancer people react so differently when it is something attached to a mental illness....when I was a little girl my little aunty Johannah had eperlipsy..only our little close knit family knew because then there was a stigma attached to this....then years on we now find we have dementia and Alzheimers which my dad had and is now dead and now my mum has...but remember you are still that person but with changes that you have absolutely no control over but like cancer more and more money is needed to get those very claver people to come up with magic potions...exelon aricefe drugs now on the market that helps the person stabilize not cure this depleting disease. I was handed book recently and I would truly recommend it...called Still Alice by Lisa Genova..about a professional lady in America whom at 50 finds she has this condition...and she her family all try and come to terms with it...running apparently helps so she says so does the specialist in this field..I truly believe that you must try to keep active have Avery good social network of friends for stimulation for laughter or pleasure as my dad and mum became so insecure and less and less sociable as the years took its toll...I feel there is a great possibility that I could develop this condition why well if both of my parents have and had this the statics are not in my favourite...so I am making sure where possible we enjoy our lifes...with our family and friends

 

[creativesarah]

Its a brilliant book I found it really helpful meant to apply and get some of the world book day books they are giving away but as usual I forgot

 

[rosaliesal]

Talking about illness

One reason for people not wanting to talk about someone's illness is the fear of upsetting the person with that illness. For example, when someone is out enjoying themselves they are able to distract themselves from the worry of that illness. Imagine everyone they meet asking more and more questions about the illness. Suddenly a night out of fun becomes a discussion about something one is trying to forget for a while. My mother has had Alzheimers for 16 years and does not want to know that she has this problem. Life is easier to go along with this. She is very happy and tells me how lucky she is. If anyone told her the truth, on meeting us when she was out, she would not only be very distressed but would be very angry. Not everyone accepts they have a problem so people are unsure if they should mention it. Those who are aware of someone's problems fear they can not offer any words that will help so are afraid to speak.

 

[Margarita]

Good on you Shelagh for coming out with what you was diagnosed with Alzheimer's.

I had a friend who had cancer and did not tell me for ages. Then while I the bus I meet an old friend, who ask me how I was .

when I ask her, how she was . she told me "right out" she had throat cancer all I could reply was “ how shocking for you “.

I think I was more shock in how in how so open with her cancer .


Stigma in Alzheimer’s is only broken with people being more awareness and being more open it.

 

[dizzydeb]

How society is still ignorant in accepting disabilities in all it's forms. This should be a thing of the past by now!

Enjoy yourself as much as you like. Have another glass of Wine and have a wonderful time enjoying the music you love. Shrug off their embarrasment and hold your head high and be proud.
Best wishes x

 

[dood]

Pride?

I was (and still am) proud of Mum.

When we cannot do anything about something like dementia it can be an awful consideration that can be wracking and clumsy.

On the other hand, if we cannot do anything about it why let it consume emotions, time and energy?

Life would seem short enough any way so why feed the fire (if that makes any sense and i hope it does).

Life is beautiful.

And for each of us an incredible length time passed before we were born and probably an equally incredible length of time will pass after ...

Q: So if I, you, Mum, Dad, ... is called into dementia should we somehow let it belittle us?

My Ans: No way baby!