The support that I needThe support that I need

Christine BrydenChristine Bryden

Becoming a labelled personBecoming a labelled person

Problems since Problems since 19881988

Medical tests in Medical tests in 1995 1995

Diagnosed with Diagnosed with AD, then FTDAD, then FTD

Living in fear and Living in fear and shameshame

My book …My book …

Who am I?Who am I? DenierDenier VictimVictim RealistRealist

Who will I be Who will I be when I die?when I die? Emotional beingEmotional being Spiritual selfSpiritual self

My 2001 MRI scanMy 2001 MRI scan

My scan is my curse - a My scan is my curse - a symbol of a life transformedsymbol of a life transformed The “dementia script” - The “dementia script” -

“You have about 5 years “You have about 5 years till you’re demented, then till you’re demented, then about three years till about three years till death.”death.”

This is like a hospice in This is like a hospice in slow motionslow motion

But biology is not the only But biology is not the only determinant of function, determinant of function, nor of my humanitynor of my humanity

Treatment delayedTreatment delayedis treatment deniedis treatment denied

Drugs at diagnosis slow Drugs at diagnosis slow decline, but do not delay decline, but do not delay treatment!treatment!

I still function OK due to I still function OK due to medication, as well as medication, as well as my previous abilitymy previous ability

It’s like I used to juggle It’s like I used to juggle more balls than most, more balls than most, and still can keep a few and still can keep a few in the air!in the air!

So what does it feel like?So what does it feel like?

My identity crisisMy identity crisis Who am I?Who am I?

My environment is My environment is vitalvital Where am I?Where am I?

My daily struggleMy daily struggle How can I cope?How can I cope?

What’s it like?What’s it like?

Existing in the present Existing in the present moment, looking at life moment, looking at life unrolling before me and unrolling before me and behind me like a carpetbehind me like a carpet

The diary IS my life, The diary IS my life, recording all that has recording all that has happened and will happened and will happen in my lifehappen in my life

Our environmentOur environment

Keep it simpleKeep it simple encourage routine, encourage routine, make sure there’s only make sure there’s only

one thing happening at one thing happening at a timea time

Understand our Understand our aggression or apathy aggression or apathy as adaptive behaviouras adaptive behaviour

CommunicationCommunication

Listen “with your eyes” as we Listen “with your eyes” as we try to tell you how we feeltry to tell you how we feel

Value us so we feel in Value us so we feel in relationship with yourelationship with you

It’s the way you talk to us, not It’s the way you talk to us, not what you say, that matterswhat you say, that matters

Just be with us – your caring Just be with us – your caring presence is enoughpresence is enough

VisitingVisiting

It’s not a cognitive event It’s not a cognitive event but an emotional but an emotional connectionconnection

It’s the way you talk to us, It’s the way you talk to us, not what you say, that we not what you say, that we will rememberwill remember

This is what is so This is what is so important to understand important to understand when visiting uswhen visiting us

SpiritualitySpirituality

We are losing our cognitive self, We are losing our cognitive self, even a reliable and coherent even a reliable and coherent emotional selfemotional self

What remains is a spiritual self -What remains is a spiritual self -whatever gave us true meaning whatever gave us true meaning in life - that you can connect within life - that you can connect with

Make sure you know what that was Make sure you know what that was before connecting with us – it’s before connecting with us – it’s not a time for conversion, but of not a time for conversion, but of reminiscence and reflection.reminiscence and reflection.

Keeping an open mindKeeping an open mind

At diagnosisAt diagnosis Living With Memory LossLiving With Memory Loss

At home aloneAt home alone SystemsSystems

At home with familyAt home with family Support, education, “time out”Support, education, “time out”

Residential careResidential care Person-centred carePerson-centred care Atmosphere more important Atmosphere more important

than decorthan decor

Where to now?Where to now?

Use it or lose it!Use it or lose it! Have a positive attitudeHave a positive attitude Live each day to the fullLive each day to the full

www.christinebryden.comwww.christinebryden.com