Dancing with dementia

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Dancing with dementia

• Christine Boden

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A roller-coaster ride

• I began studies in counseling
• struggling, but doing well
• But I battled depression
• despite believing that I was getting better
• Was I overcoming depression?
• or was the disease slowing down, or even
  stopping?

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Im really getting better!

• Neurological reassessment
• scans and psychometric tests.
• Either I was getting better, remaining stable,
  declining, or maybe it was all just a figment of
  my imagination.
• But he said my disease looked like a glacially
  slow dementia of the Fronto-temporal type.

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A new lease of life!

• I met Paul in mid 1998, and we were married a
  year later
• The miracle continues
• Not only am I better than I could have hoped for,
  
• but I have a loving husband who shares my strong
  faith and supports me as I decline with dementia.
  

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Challenging the stereotype

• Battling the stereotype of dementia, of someone
  in the later stages
• If I could speak, I did not have dementia
• My diagnosis is still questioned
• What is it about dementia that makes people
  demand proof?
• Why cant we cheer the dementia survivors?

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Meeting my cyber friends

• In DASNI, people with dementia around the world
  shared how they felt
• I was not alone
• Together we were
• challenging the stereotype of dementia, and
• seeking to change negative attitudes

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DASNIs chance to shine!

• We were becoming visible
• The stereotype was being challenged.
• By acting locally and thinking globally, DASNI
  was making an impact.

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Running the race

• Two months of traveling
• Elected to the Board of ADI
• Settling into a new house
• Taking on the relay baton for the last leg of the
  relay race.
• But my body was exhausted and my mind stretched
  beyond its meager capacity

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Im like a swan

• Gliding above the water, paddling frantically
  beneath the surface
• I can still swim a bit and put on a good show,
  but it seems as if I will soon sink
• Nobody knows, except me and my poor damaged
  brain, how bad it is

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Struggle and anguish

• Every moment of the day is a conscious effort
• The world feels like a wobbly place
• The unreliability of my memory gives such a hit
  and miss approach to life

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Black hole of a life unremembered

• Muddled thoughts, with random bursts of energy
  and lucidity.
• Intermittent reception of life as it passes by
• Living without labels, in a world in which I know
  that I know you, but not why I know you

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Anxiety and out of control

• We have reason to be anxious.
• Was there something I promised to do or planned
  to do?
• We are losing our way, not knowing where we are.
  
• Communicating is difficult, so we feel
  frustration
• It's an exhausting way to be!

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How can we be helped?

• Search for a cure, and
• build on our strengths, working with reminiscence
• try to understand what this assault to our
  functioning is like
• manage our environment
• Find out what has given us meaning in our lives
• spirituality can flourish as an important source
  of identity

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Reach out to our spiritual self

• The stigma of dementia leads to a view that we
  are beyond reach of normal spiritual practices
• But you can minister to our true spiritual self
• We can find meaning in our spirituality, you can
  connect with us, and empower us

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Who will I be when I die?

• Dementia is described as loss of self
• When do I cease being me?
• We need to create a new image of who we are,
• and who we are becoming.
• We can choose the attitude that we have

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Stripping away the masks

• Dementia is a journey into the true center of
  self
• from cognition, through emotion, into what gives
  meaning in life.
• If society could appreciate this, then people
  with dementia would be respected and treasured
• The spiritual or transcendent self remains intact
  through dementia

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Im becoming who I really am

• My real self exists in the now, continually and
  eternally
• This is a new way of living, maybe even the
  essence of living, and is the experience of
  dementia
• I have answered the question of my first book

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Dancing with dementia

• Im adapting to the ever-changing music of
  dementia, with my care-partner
• Im choosing to find out how much dancing is left
  in me
• Much has changed since I stumbled onto this dance
  floor
• but there is still no cure, and
• the stereotype and stigma remain

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Time is running out

• My last effort to capture fleeting ideas, to help
  change attitudes
• I have done all I can
• Now its time to rest, hoping for a cure