Tag Archives: #RememberMe

Alzheimer’s Has, at least two faces by Brian Le Blanc

screen-shot-2016-09-22-at-8-16-45-amAs World Alzheimer’s Month 2016 #WAM2016 or Dementia Awareness Month 2016 #DAM2016 as many would prefer it was called progresses, we continue our #RememberMe stories of members and others living with dementia.

A few moths ago, a very active advocate in the USA and also a DAI member (amongst many other things), Brian Le Blanc, also known as The ALZ Guy @TheBrianLeBlanc on Twitter,  gave us permission to share some of his writings about living with dementia, and today, we are sharing his insightful piece of how dementia looks to others when we are in a public space, and how that might be totally different to what our closest family such as a care partner might see. Thank you Brian.

You can read an excerpt from his blog here…

Alzheimer’s Has, at least two faces

“In 1996, Barbra Streisand  directed and starred in the movie, “The Mirror Has Two Faces.”  Streisand plays a homely-looking, Columbia University English Professor with low self esteem issues, who, through a personal ad placed by her sister, meets Jeff Bridges , a Columbia University leading figure in the Math Dept. They agree to marry based upon what they describe as a “palsy-walsy pseudo-marriage.” They see each other, as well as themselves, being not who they really are but seeing themselves only on the surface.

At this point, you may be asking yourself, “What does Alzheimer’s have to do with a Barbra Streisand movie? Well, other than the title of the movie, it has to do with the perception of how we see ourselves and how others see us.  This brought to mind what I wanted to write about. Confused? Great! Welcome to my world.

Maybe this will help:

More than several months ago, at least I think it was, Shannon (my beautiful, understanding, loving wife) and I were returning home after a presentation I gave to a local Rotary Club. I always ask her how things went for I know she will be honest with me. This time, instead of giving me an answer, she started to cry. (I must tell you that due to the fact that Alzheimer’s has already begun its destruction of my short-term memory, I don’t remember many things, however, I do remember this.)

I asked her what was wrong and this is what she told me.

“You stand up there looking all polished and professional, reading from your prepared speech, smiling, cracking jokes, basically being the man I fell in love with, the man I married, the man I  terribly miss.
They, your audience, don’t see who you are when you are away from the spotlight.
They don’t see the confusion, the anger, the anxiousness.
They don’t see the man who can’t remember how to do the simplest of chores.
They don’t see the man who has a reminder on his phone to eat and to take a bath.
They don’t see the man who can’t remember something he was told 5-10 minutes ago.
They don’t see the man who, without a prepared speech or notes can’t speak without stuttering or going blank.
So I’m sad and I’m pissed off that you can show that side of yourself when you are in the public eye but they don’t get to see what Alzheimer’s has done to you . . . what it has done to us.
How do you do that?”

I was speechless. To be honest, I had no answer. I just sat there feeling sad. I knew she wasn’t mad at me, that she was mad at the situation. I feel sad right now writing the words as I recall that event, not sad for myself, but for her. You see, she thought she was getting someone she would get to spend the rest of her life with travelling, laughing, living out all the dreams we shared.

Now she sees only glimpses of that man . . . glimpses of me or who I used to be.”

Go to Brian’s blog to read the full story here…

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Edie Mayhew and Anne Tudors “Bigger Hearts” Campaign story

In our continuing series of daily #RememberMe stories  for World Alzheimer’s Month 2016 #WAM2016, we share DAI member Edie Mayhew and her partner Anne Tudors “Bigger Hearts” Campaign story. It is an exciting project happening in their local community, full of love, inclusion and a while of community commitment to improving the lives of everyone.

Thank you Edie and Anne, for sharing your story with us here…

Edie Mayhew presents at the "Bigger Hearts" campaign launch
Edie Mayhew presents at the “Bigger Hearts” campaign launch

“Anne and I would like to share our “Bigger Hearts” Campaign with DAI members.

It was launched in our home town, Ballarat on 30th August, 2016. The project partner’s include, Dr Catherine Barrett of @celebrateaging, Alzheimer’s Australia Vic and Ballarat, Ballarat City Council, Carer’s Respite and Neighborhood House, Ballarat North  (where our YOD weekly art classes take place). The major sponsor for the project is Australian Unity (our Consumer Directed Package provider) who will cover amongst other things, the cost of a project film.

The title of the project comes from a conversation Anne and I were having some time after the ADI Perth Conference. Anne was talking about how much our lives had changed since my diagnosis and that dementia had been quite transformational in many ways. She talked about the experiences we’ve had and the amazing people we’ve met. When she eventually drew breath, I said “Our Hearts are Bigger”. Anne was stuck for words!!! Since then we’ve distributed hearts to those present at all my presentations.Those in the “Quiet Room” received a heart in Budapest so they’ve travelled to many parts of the world. We moved from recognising dementia making our hearts bigger to inviting others, particularly dementia care workers, to engage their hearts in what they do so that their hearts would also be bigger.

Now we’re asking the Ballarat community to open their hearts to be more dementia aware and dementia friendly. I said we were a sub-culture wanting to be mainstream, not stigmatised, ignored or hidden away. I said we had work to do about increasing awareness and knowledge of dementia in our city, but we couldn’t do it without their support and assistance.

We were delighted the Mayor (who launched the campaign) and Deputy Mayor were present as well as a strong representation of locals. Janet Dore, a local with much corporate experience was MC and we’re delighted she will chair the Dementia Alliance to be formed at the end of October. Janet and I played cricket together in our 20’s!

We have three thousand postcards and five hundred posters distributed strategically throughout the city asking people to write down on heart shaped cards, what they think dementia is and how they suggest Ballarat could be more dementia. The responses will be used to inform the Dementia Alliance. We’ve also distributed lots of badges. A local hotel is having their staff wear the badges for the month of September. They were very keen to hear ideas about situations that arise at the bar at times.

Further activities include an event where people with dementia are paired with someone who wants to know more (a story catcher), to have a conversation about what the person living with dementia wants them to know and understand. We’re anticipating this to be powerful indeed and parts will be filmed. Ballarat City Council is also putting a group of staff though a dementia awareness experience. There is an event at a secondary school and primary school and another with Australian Unity.

An important part of the project is a weekly meeting at The Turret cafe for project partners and anyone else who may be interested to come along to chat, have a coffee, return or take more postcards, give feedback and so on. We’ve discovered a nurse engaged in a dementia research project through the process. The final event at the end of October will be an overview of the campaign, showing the film and signing people up for the Dementia Alliance and Bigger Hearts Club (similar to DAGs).

Something which has shocked and disappointed us during the planning process is the realisation that many local people with dementia, supposedly 1758 in Ballarat at the moment, are reluctant to participate in dementia awareness raising community events.

We’re still working our way through this reality. Some explanations: diagnosis is clearly not happening early enough; a collusion of silence and avoidance exists around people who have dementia, (we were shocked to learn that many people are not told by professionals and family that they have dementia); people with dementia have internalised societal views of helplessness, hopelessness and uselessness and alienate themselves from an active and satisfying community life because they feel shame. We were told time and time again, “They’re not ready yet”.

The experience of many of us with dementia is that socialisation and broad participation enhances wellbeing. There are so many DAI members living a satisfying and meaningful life as you all know. The challenge we face now is to first get PLWD to join others in a similar position in a dementia friendly cafe or pub. We do have some support in this. More than thirty community partners have signed up to Bigger Hearts.

At the moment we’re planning ways to break down some of these cultural barriers that have existed here for generations. It’s just going to take time and we need patience and clever ideas. That’s where Catherine Barrett comes in.

DAI member, Edie Mayhew, Dr Catherine Barrett & Anne Tudor
DAI memEdie Mayhew, Dr Catherine Barrett & Anne Tudor

Before the launch ended, Gorgi Coghlan, a children’s choir and musicians sang and played, “I will remember You, Will You Remember Me”. It was really beautiful and so special.

Follow us at Celebrate ageing: Bigger Hearts

Hope you’ve not experiencing September exhaustion.”

Warm wishes from Edie & Anne.”

“Dementia and the kiss of love” by Susan Suchan

As we celebrate our members and share their stories in the spirit of the World Alzheimer’s Month 2016 theme #RememberMe #WAM2016 #DAM2016 we have had a wonderful response from our members to contribute their stories with us here. Susan Suchan has spoken here before, but her story today is of love.

Here is her story about the kiss of love…

screen-shot-2016-09-12-at-6-09-01-am“Some people may look at this picture and become offended that two women are sharing a kiss, some may even wonder if this is a Mother/Daughter moment. The list of perceptions could go on and on.

I am living with a probable diagnosis of early on-set Alzheimer’s, FTD/PPA for quite some time. I choose to live my life with purpose and in the moment. Dementia can reek havoc on my perceptions of a joke, a plan or idea and yes, even emotions.

I may not always immediately connect a look or touch with the correct emotion but ultimately I do. It is an ever changing disease and not everyone will experience it in the same way. I am passionate to help other’s understand and find ways to bridge the gap. I/we, with the diagnosis, are THE best to educate about the intrinsic and at the same time remain believable to those who see not the person, but only the disease and what they have been told to expect.

I may speak in a way that is not understandable at times, I may walk as though I’ve had a few too many nips! Trust me, I am adapting to the changes in my brain that no one would ever ask for. Perceptions are not only misunderstood from my side, they are misunderstood from those I expect to know better. I guess you could now call me a ‘teacher’. I didn’t sign up for it, the pay is nil, but I won’t ever quit.

This picture, is of my sister and I. I am on the left and am the oldest of the two. This is a kiss of love.”

By Susan Suchan