Presentation 227 laurie fieldman als families
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ALS Families Laurie B. Fieldman, LCSW Director of Social Services, Les Turner ALS Foundation
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The Les Turner ALS Foundation www.lesturnerals.org
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ALS is disease of emotional changes, too.
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Independence vs. Safety
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ALS is like a pressure cooker.
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We can help find pieces of the answers.
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Normalcy is worth its weight in gold.
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Couples go through ALS together, but…
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These are truly extraordinary circumstances.
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Think outside the box.
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It’s not easy to accept help.
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The family must gather its resources.
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You can work with any size support system.
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Begin by organizing your resources.
• lotsahelpinghands.org
• caringbridge.org
• takethemameal.org
• sharethecare.org
• familycalendar.org
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ALS brings so many intense emotions: loss, frustration, helplessness.
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Loss: physical function, control, identity
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Helplessness
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Frustration
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Frustration
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We all want our roar to be heard.
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We take out our frustrations on those closest to us.
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Resentment is the line in the sand.
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Families…what IS “normal?”
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What was the family like before the ALS?
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We have to work with closed family systems.
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Secrets and lies
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We can only do what they allow us to do.
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Everything is not always as it appears.
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We all have ideas of what a couple looks like.
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We have images in our mind of “family.”
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Who’s to say?...
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…if it works for them!
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Quality of Life (QOL)
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“I’m not going to let this take any more of me than it has to!”
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Energy conservation is for the spouse, too.
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“Conserve my energy for what?!”
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Our most challenging families
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Objective 1: Understand the 3 most common ALS issues in a family: loss, helplessness, frustration.
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Objective 2: Be able to provide 2 tools to help the family cope.
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Encourage patient and family to ask for help: counselors and support groups, as well as their support network.
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Teach that the anger is at the disease.
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Objective 3: Be able to teach three ways to maximize support and resources:
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Use a page on website to organize resources
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Think outside the box: Peapod (grocery delivery service); take FMLA one day per week.
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Validate how difficult it is to ask for help, but explain the necessity.
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Something for us to remember:
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Thank you to the Les Turner ALS Foundation and thank you for your attention today!