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Looks Can Be Deceiving - Dementia, The Invisible Disease

Looks Can Be Deceiving - Dementia, The Invisible Disease. by Marilyn Truscott Alzheimer Society of Canada. In my fractured mind Sputtering, short-circuiting, Pieces of ideas caught Inside a labyrinth, no escape Phantom gremlins overtake my house And move and steal my possessions

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Looks Can Be Deceiving - Dementia, The Invisible Disease

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  1. Looks Can Be Deceiving - Dementia, The Invisible Disease by Marilyn Truscott Alzheimer Society of Canada

  2. In my fractured mind Sputtering, short-circuiting, Pieces of ideas caught Inside a labyrinth, no escape Phantom gremlins overtake my house And move and steal my possessions I look in the mirrors And I am me, unchanged I walk, move, smile And I am me, nearly unchanged This invisible illness That overtakes the brain Thief of thoughts and words Leaves little outward mark I look the same How do YOU see me? Marilyn Truscott January 2004 Iwalk the halls, streets, garden paths My near-silent mind my quiet companion A blank canvas Waiting, hoping pictures will stay My mental camera on stall I struggle to capture the present For my future My notepad kept handy To jot down fleet thoughts, Meetings, moments To save my past. Confusion, like a veil, a fog A zone where I travel in and out That passage I can not control Language eludes me And words slip through gaping chasms This Invisible Illness

  3. “You look so well. There can’t possibly be anything wrong with you.” Outward normality vs. Inner difficulties

  4. The “invisible illness” is not invisible… If you know what clues to look for!

  5. Our dust-bunnies do not quake in fear As heavy footsteps round the bed They grow steadily, larger Inviting friends to stay. At night in the quiet middle hours I think I hear them whisper to their friends As they rustle along the floor. They are unpaying tenants and remain Quietly raising their families In the safety of my inaction At times I ineffectually reach With a broom or stick To test where they rest On the still floor They might huddle together To make themselves small Waiting until I forget What I meant to do As I move on to try Some other task “Water me”, my plants call out In silent plant-talk As past I walk In hopes I’ll give a drink But if I forget and move on They will wait and wait Until by their wilting fronds They signal my watchman. Marilyn Truscott January 1, 2004 On trying to do housework Housework Never Ends

  6. WINDOWS TO THE INVISIBLE ILLNESS: Patterns that change Standards that decline

  7. “Pick up your socks!” Reassurance or criticism?

  8. Ihurt inside Silently When you do not understand When you forget And expect too much Demand too much Remind me again in anger How can you not see There is a clear window Into my mind’s failings Are there shutters over your eyes Or over your own mind My invisible disease So concrete inside Leaves little outward sign But look through my window See me as I am today Love me as I am today Marilyn Truscott January 2004 See Me Today, Love Me Today

  9. PERMISSION TO SPEAK: • Giving permission for others to speak • Asking for help • Maintaining self-identity and self-respect

  10. HELP US TO BE INDEPENDENT: • Do not speak for us • Listen and validate our feelings and experiences • Reassure us that you will continue our friendship • Ask how you can enable us to remain independent • Accept us as we are • Show others

  11. Hope Daily changes Daily challenges We look for opportunities And possibilities In this evolution This now simplified life Seizing each present moment In this there is hope Marilyn Truscott January 2004

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