Mick Carmody presents at ADI2015

Day 4 Dementia Awareness Week UK 2015

For our blog on Day 4 of Dementia Awareness Week UK, we are publishing the presentation given at ADI2015 by Mick Carmody from Brisbane in Queensland, titled People can live well: even people with dementia. Mick is  Dementia Alliance International Circle of Friends member, and also hosts the online Tuesday support group run in the Australian/NZ/Japan time zones. His wife Sue took the video, and they have given DAI permission to publish it here and on our YouTube channel. Thanks Mick and Sue.

Below are his full speech notes, and the power point presentation slides as a PDF. Well done Mick, and thanks again for sharing yourself with us all.

People can live well: even people with dementia

By Mick Carmody ADI2015

People can live well-even people with dementia_Mick Carmody_ADI2015

Thank you for the opportunity to speak to you today.

It is an honour and pleasure to be here and share my experience of dementia with you.

We can live well with dementia and with your enabling help we will all live full lives.

In less than twelve months I have gone from  being bound by my own   insecurities, which  we all grow through, not leaving my comfort      zone. Now I have a reason to live. If I know I only have 6-12 months left, I am bloody well going to enjoy them. No time for that. Think positive, act positive, be positive.

I  am still here. I am still me!   

This is my story of living positively with

dementia, and about how I believe if we all work on making our communities dementia  friendly and accessible, more people will also be able to live well with dementia. It is also    about improving the care of people with  dementia, and an international advocacy    and support group of, by and for people with  dementia, that I am involved in.

HAVING   DEMENTIA DOES NOT MEAN MY  LIFE    BEFORE DIAGNOSIS NO LONGER MATTERS.           

I AM NOT DEFINED ONLY BY DEMENTIA.        

I have a Personal history!      

Born in Wangaratta ,Victoria, a normal family and    schooling to year   11,   one of five, mother       still alive, 88yrs old.       Moved to Corowa       NSW for 28yrs,  then Brisbane for   8yrs.

My careers in Hospitality Industry, sales       and a Truck driver.

Married   38yrs.    Wife    Sue, Daughter     Melissa     and Son in law Warren; Grandson,  William, and Son, Scott.  My hobbies are very amateur photography, and pre diagnosis was golf, and I enjoyed reading.

I sought medical advice due to memory,  cognition and balance issues, and some    unexplained     ‘episodes’.     After waiting six months to see a neurologist an episode caused me to be admitted to hospital where I was ignored by nursing and clinician staff which is due to lack of knowledge through education.

Twenty five days and two hospitals later a misdiagnosis. I should be happy that I did not have epilepsy was delivered by the       neurological     registrar. I was told it was all in my head.

After being referred to a geriatrician who  spent thirty minutes he said he believed it to be either Lewy Body’s or FTD. He sent me off     to have a PET scan.

Diagnosis: FTD.

He told me it was terminal. He told me to get   my end of life affairs in order sooner rather     than later then go out and enjoy myself!!   

What many people don’t know is that  dementia is a terminal progressive illness, and that there is only treatment for some       types of Alzheimer’s    disease.

There are over 20o types or causes of  dementias.  Currently there are 44.4 million  people with dementia in world, reported by     Alzheimer’s Disease  International in 2014.  Worldwide,  there is  1 new diagnosis  every 4 seconds.

There is NO cure. Therefore  we must be  supported to live well, for as long  as possible.

So I went home and gave up for 6-8 months. I went through the same as everybody else.   Poor me, I can’t have dementia. No. It’s not  me.

Then reality  steps in and “bang” on the back of the head. Not wanting to leave my comfort zone. Leave me alone; don’t ask me to get involved in anything. Boy oh Boy, did that change.

The early days consisted of guilt, anger at   myself, what have I done      wrong.  Can’t go    anywhere especially to a meeting with Alzheimer’s   Australia Queensland who only  offered limited help after I rang them because I did not know where to go or who to turn to.   A key worker for Younger Onset Dementia came out to see us, and she was really helpful in  making sure we had the right paper work in       place.

My wife is my full time carer. A huge job with little or no pay or recognition. Carers are “ANGELS IN DISGUISE. “I have been known to wander off and   not return. My family is like most. My eldest sister and brother in law who visit an know and understand. The rest, well, it’s their loss not mine

I have started writing poetry since my diagnosis I placed one on the AAQ YOD discussion forum. I was asked if they could use it in the AA news letter. Next thing I know my wife and I are on a plane to Melbourne to join an Alzheimer’s Australia consumer group where I became involved   with wonderful group of people in this organization. This really took me out of my comfort zone,

Then a lady I am proud to call my friend introduced me to the Dementia Alliance International. Again a group of people that welcomes you with open arms and they have the ability to bring you out of your shell.

With Kate’s help and push I now have a reason to live,  a reason to get out of bed in the morning.

Education   empowerment are the key if we are to reduce STIGMA. I am passionate about educating as many organisations, large and small about DEMENTIA FRIENDLY

We have all had someone say ” you don’t look like somebody with dementia, that’s only for old people”

My response is simply; “what does a person with dementia look like?

I now have the confidence to get out and spread the word about dementia friendly communities and also have the confidence to speak to you today. THANKS KATE.

Now I will read to you the poem that started everything.

WALKIN MY SHOES, IN MY SHOES

As I lay here in my bed awake still

Sleep I knowat some stage I will

Morning seems so far away

Sometimes I wonder if dementia will stay

I often wonder if I am really mad

Or, if this is real, it is really sad

Frontal temporal lobal dementia they say

Then younger onset dementia all  here to stay

Will get worse,  won’t get better, I am told

That there is no cure makes me go cold

I am amusing to my wife and family and all when I speak of long       lost past

Truth gets stretched a little as memory falls  from my grasp

It is about the only bright spot for my carer  my wife the love of my life

One day soon dementia will go away I say.

“oh I think its here to stay” says Suzie my wife

People stare and look at me strange, they don’t know or  care

If they understood they would not stare

Help me to make them see, it  is, it’s really me

Education is what is needed you see

Cognitive functions are getting harder each day

Simple tasks getting harder now, frustrated that this will stay

Always look forward, never look back

REMEMBER  to say I LOVE YOU every day,    could be the last     thing you get to say.

Dementia Alliance International is a group of  warm, caring, passionate people who are dedicated to the wellbeing of every person with dementia.

DAI has recently collaborated with Alzheimer’s Disease International (ADI) and have become the peak global   organisation    for people with dementia.

These people gave my life new meaning and gave me the confidence to speak out and be  heard. THANK YOU DAI

Dementia Alliance International  is a non profit  group of people with dementia whose vision is    “A world where  a person with dementia      continues to be fully valued.”

Dementia Alliance International  connects people diagnosed with dementia and    others who  are meeting  the  challenges of       dementia through Webinars, Master classes, Online Cafés, and support groups   — all accessible from the home or office through    the     Internet.  Contact them to learn more about    DAI, their programs and to inquire about the online support groups.

ADI’s Global Dementia Charter is: “We can    live well with dementia.”   

Members of Dementia Alliance International believe that.

I am living proof       it is possible. Thank you.