The power of people with dementia, by Mick Carmody

Mick Carmody, DAI Global Support Group Manager
Mick Carmody, DAI Global Support Group Manager

DAI Board member and Global Support Group Manager gave the opening keynote speech at the recent Alzheimer’s New Zealand and ADI Regional conference, held in Wellington. You can read his speech and download his slides below. Thank you Mick for representing DAI and all people with dementia with such dedication, passion and commitment.

The power of people with dementia

 

Hello,

My name is Mick Carmody, I am married to Sue, have t two grown children, a son in law and a grandson William

This is my story of living positively with dementia, and about how the power of people with dementia is slowly growing.

Alzheimer’s Disease International Global Charter says, I can live well with dementia, but as yet, the system does not fully support us to live well. This is in part, why I am here today.

Until recently, the capacity and abilities of all people with dementia have been grossly and wrongly underestimated.

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MY PRESENTATION TODAY WILL COVER THE FOLLOWING:

My experience of living with dementia including getting the Diagnosis, the Post diagnostic support from the health sector and How it feels when things get worse

It will cover the value of Finding support from Dementia Alliance International, and finally, the power of people with dementia and how online support groups and Peer-to-peer support helps us to live with a better quality of life.

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Diagnosed with dementia

In less than twelve months I went from being bound by my own insecurities which we all grow through, not leaving my comfort zone. Now I have a reason to live positively, a reason to see the sun rise and set every day.

Do I think about how long I have left? NO. I can’t control that. If I know I only have 6 – 12 months left, I am bloody well going to enjoy them, not sit a wallow in my own self pity. No time for that. Think positive, act positive, be positive. Turn negatives into positives. I am still here. I am still me.

My Geriatrician diagnosed me with FTD, this was after a Neurologist kept me in two hospitals for 25 days and delivered a misdiagnosis of epilepsy. I was told by the Geriatrician to have another MRI and a SPECT scan.

He took us through every aspect of what was happening with my brain, explaining everything in English and terms that we could understand. There was large gaps where there should be paper thin lines, gaps and a white dot which he explained was a mini stroke that I was unaware of, which is common

He asked my wife and daughter what they noticed prior to being diagnosed. This was a wake up call for me as I did not realize what I had put my family through. They were all walking on eggshells and trying to do the right thing so I would not get cranky and snap at the drop of a hat.

Sue told him how I had become very forgetful and denied being told at all. My balance was becoming an issue.

My response to all of this was

  • What is the use?
  • Only 5 years to live
  • Hopelessness and depression

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My Geriatrician then told us what to expect and he said that the life expectancy of a person with FTD was 5-7 years, but he then said that he did not know, it could be 10 or 20 years who knows. He said the best advice I can give you is to go home get your life affairs in order, then go out and enjoy yourself

We went home, I was very silent on the way home. We both went inside and I cried and cried, saying no person should have to go through what I had put them through and I apologised and we both sat down and discussed it all and agreed that if I was getting snappy again Sue was to tell me.

This really affected me and still does to this day. I soon get told now if I am getting snappy without knowing and I no longer react, just apologize and try harder.

I then went into a state of disbelief. It is not happening to me, no it must be somebody else, embarrassment, guilt, anger and my wife and family do not deserve this, a life time sentence for them as well.

The unit we live in and my chair became my security refuse and I did not like going anywhere at all because I would end up in a state of anxiety and stress.

I would sit at home and plot and scheme ways to do something really stupid because I did not want to be a burden to Sue and the kids. Depression became my friend.

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Where do we go for help?

What help is there? It is very difficult to find services and support

Minimal age appropriate helpm, and in Australia there are not enough YOD key workers

I started to wonder, Am I the only one, and experienced feelings of isolation and loneliness, wondering what now, and as if there was nowhere to turn…

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I went from being in the black hope of depression and hopelessness 

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To Living Well With Dementia

I eventually ignored the well meaning advice from health care professionals. I was introduced to Dementia Alliance International (DAI)

DAI taught me: I AM STILL HERE I AM STILL ME

I then focused on Mick Carmody’s life, and on LIVING, not only dying

My hobbies changed, and I started writing poetry.

I decided to enter a poem into the Alzheimer’s Australia Queensland forum and I was contacted a few days later to see if they could put into the quarterly news letter, then I was asked to join a Alzheimer’s research group. We were soon on our way to Melbourne for a meeting.

I was fortunate enough to meet a Lady who was the co chair and she picked up as we talked that I was at my lowest point and asked me to join a group called Dementia Alliance International. I did and since joining I have been able to turn my life around 180 degrees.

I have changed from a person who was contemplating something totally stupid to a person who is positive and is looking forward to a life where I am living proof that you can live well after a diagnosis of dementia

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Please talk to me, not about me, or without me.   I am still here. I am not deaf; I can still understand and talk even if I need disability or other support.

Most of us are not end stage when diagnosed, and please remember, my carer is my partner in this experience so please include her, BUT, ALSO REMEMBER, NOTHING ABOUT ME, WITHOUT ME

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Please stop telling us to go home and prepare to die, via aged care

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You don’t look like you have dementia… what are we meant to look like??????? People often don’t look like they have heart disease, or diabetes, or even cancer unless their hair falls out due to treatment. It isno different for us.

People say to me if I say I forget some things like car keys as they do too sometimes, so you must not have dementia. My answer is, you are right of course we all lose our keys, but, do you get in the car and forget what they are for and how to use them.

The most common saying all around the world is, ‘you don’t look like you have dementia’! or ‘My grandmother had dementia and she looked nothing like you, you can talk like we do.’ My answer is thank goodness I do not look like your grandmother and can you please have a look around the room and tell me which people have dementia just by looking at them!?

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I joined a Dementia Alliance International Online Support Group and I am now the Global Support Group Manager, and facilitator and host of more than 8 support groups around the world!

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Nobody gets dementia like we get dementia!!

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Life after diagnosis has become a full time job that I love!

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Then things changed – Intense pressure in my head, then admission to hospital again, a suspected aneurism, intense and increasing Pain, resulting in Slurring my words and a diagnosis of Primary Progressive Aphasia.

This symptom at the moment is very sporadic but I will eventually talk with Aphasia all the time. So if you are talking to me and I start then please give me time to finish my sentence or word. 

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I now have increasing disabilities caused from the changing and progressive symptoms of dementia. I went back into that Black hole (again!), I felt renewed Shock and grief, my male pride was badly wounded again…. But with the support of the DAI support group members, I got back on my bike! It is imperative you support others with dementia to keep living, rather than to go home and prepare to die

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One way to help support people with dementia to live well, and to respect them more fully, is to use respectful language.

I recommend everyone refer to the Alzheimer’s Australia Dementia Language Guidelines.

For example, we might suffer some of the time from dementia, but it is offensive to label us all that way as if that is all we experience. Even people with cancer do not suffer all of the time.

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I speak out because as there is no cure, and therefore it is important others support us to live as well as possible.

I am also the expert of my lived experience of dementia

We strongly believe there should be nothing about us, without us

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Dementia Alliance International (DAI) is the global voice of people with dementia, working with the philosophy of ‘Nothing about us, without us’ and encouraging organisations to do the same

Our vision is a world where a person with dementia continues to be fully valued and included.

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DAI is also the peak body globally for people with dementia and seeks to advocate, support, and educate about dementia. As an organisation we aim to provide a unified voice in the fight for individual autonomy and improved quality of life.

DAI provides weekly online support groups for people with dementia – currently hosed and facilitated by Dementia Alliance Board Member and Global Support Group Manager Mick Carmody from Brisbane. They are held in time zones suitable to people living in a number of different countries, and everyone with dementia who becomes a member of DAI is welcome to join one of these support groups. Membership to join these support groups is also free.

When I was first introduced to DAI, I was asked to join a weekly support group, so I agreed thinking why not what have I got to lose. I was not expecting what came next, the group consisted of American people and was hosted by the great Dr. Richard Taylor PhD. I joined the meeting and sat there thinking, wow these people are from America, the technology is amazing. I will just listen this week and to my surprise Richard said Ok Mick Carmody tell us your story, tell us about you. The group then asked me questions and I realized that I was not alone and some of them actually had the same symptoms as me. I felt so empowered and honoured to be a part of this wonderful group.

When we were nearly finished Richard asked me if I liked it enough to come back next week. The meetings started at 5 am and I became a regular as I do not sleep much anyway. Being a part of this group and talking to like minded people not only empowered me but turned my life around 180 degrees.

I started to think why can’t we start up these groups in Australia and beyond. I asked Kate and Richard and the rest is history. I feel like I have a debt that I have to pay and I have to keep Richard’s legacy Going.

I made a promise to Richard before he passed away over twelve months ago with cancer that I will make sure we have groups in as many countries as possible.

Why do I host so many groups? Because I get so much enjoyment from each group. Since August 2015 we have save four people from doing something really silly. I also hold one on one chats with people who need a little extra support with someone who will listen. It is not unusual for me to have a meeting at 2.30 am, the meeting could last for two. I have had several days where the first one on one meeting starts at 4.30 am and the last finishes at 12.30 pm. This is something that I am very passionate about and a vital part of my job.

I am very honored and proud to be appointed as the Global Support Group Manager

That to me is what the support groups are all about. Every person in every group says the same thing. I wish I had heard of these support groups earlier.

I would be honored to see a support group starting up in this beautiful country of yours. Please do not hesitate to talk to me and ask questions while the conference is on if you are interested in joining a support group here in NZ.

The power of people living with dementia is incredible, and what DAI has done, to support its members, who now are in 38 countries across the globe is incredibly powerful.

Our work on human rights, inclusion and disability rights is important, but most important of all, is the power we have to help improve the lives of real people living with a diagnosis of any type of dementia, any where in the world where the Internet is available!

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Thank You

Download Mick’s slides here: The Power of people with dementia