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ADI 2001 New Zealand - Presentation by Christine Bryden - Slides 13 to 17

Slide 13

Jack Kornfield in “A Path With Heart” says we can change our inner attitude, and this is enough to transform our life. We can choose how we will react to our new life in the slow lane, realizing that: “Transforming the patterns of our life is always done in our heart”.

So our first step is to find out what we can celebrate. We choose to find joy in being sensitive in our relationships, in being open to our spirituality, and finding positive aspects of living in the slow lane.

For me dementia meant retiring from work and being able to pick up my daughters after school in the light, rather than race to see them in the dark after a long day at work.

For Betsie Ten Boom in the concentration camp horror of Ravensbruck, the fleas were a Godsend, keeping away the guards.

As Charles Swindoll has said, “Life is 10% what actually happens to us, and 90% how we react to it.”

It is through finding meaning in life, even in dementia, that we can create a new sense of becoming and overcome fear of loss.

Slide 13

Slide 14

What you can’t feel, you can’t heal. Rachel Renman says that the part which feels joy is the same that feels suffering. By working through our fear, we can begin to feel joy. We are on a path to healing, through feeling and acknowledging our fear, anxiety, and the ebbs and flow of confusion. By casting aside the lie of dementia we can work towards creating a new future. We need to realise that our passage through diagnosis, drugs - and now through to determination - will be a struggle of feeling to achieve healing. Most importantly, on this journey, we can come to realise that we are uniquely qualified to reach out to you, our families and friends walking alongside us on this journey with dementia.

We have been where you are, in the world of normals, and know what that feels like intimately. But you have no idea what it feels like for us. We are bi-cultural, bi-lingual, speaking and knowing the language and mores of normality as well as dementia. So we can bridge the gap between the world of normality and the world of dementia, and help you to understand us and our needs.

Slide 14

Slide 15

In reaching out to you, we must maintain a fine balance between pretending at normalcy or withdrawing into helplessness. What is normal in this abnormal disease? We can be tempted to maintain a cheerful facade, and deny anything is wrong. You may either go along with this and deny dementia, or assume we lack insight and take over our lives.

We cannot win. If we both pretend at normalcy, remember that increasing energy is required to maintain the self, so less is available for you, and for coping with stress. We may show a catastrophic reaction to what may seem to you to be a simple challenge.

If you take over our life, then it is so easy for us to withdraw into helplessness. Life is so hard anyway, and you can make it so much easier for us. But in so doing, we who need constant repeating of actions and thoughts to keep remembering, lose functions daily.

The challenge for me is to reclaim my life with realism and humour, with you alongside me as a partner in this endeavour.

Slide 15

Slide 16

Determination is about getting back into the driving seat of life. We are confronting the fear of a living death, drawing on our inner resources. We can overcome our feelings of inertia,of exhaustion, as we face this journey of dementia with courage.

We need to find the pearl hidden within us. Like a pearl formed through the irritation of a grain of sand within an oyster, our pearl has formed through the challenge of living with dementia.

Finding this pearl within is the key to “transforming the patterns of our life” and creating a new future of life in the slow lane.

We can work together as PWiDs in discussion groups, such as happened at the Australian National Conference and is happening at this ADI Conference, or in support groups in our home countries, or as part of the Internet-based Dementia Advocacy and Support Network. As a group of people who share the same world, the world of living with dementia, we can find our hidden pearls, working together to build a new future, by sharing, supporting and encouraging each other.

Slide 16

Slide 17

We PWiDs are looking towards new horizons of hope, as we seek liberation from internalising the oppressor of dementia.

As persons with dementia we can relate so well to what Nelson Mandela said in his inaugural speech: “As we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others!”

To live with “the fear of ceasing to be” takes enormous courage. The precious string of pearls, of memories, that is our life, is breaking, the pearls are being lost. But by finding new pearls, those created in the struggle with dementia, we can put together a new necklace of life, of hope in our future.

We need to express our voice together, from our different perspectives of this interdependent struggle to live with the unpredictability and irrationality of dementia.

We seek a new paradigm of dementia survival with dignity walking with you on that journey from diagnosis to death.

Slide 17

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