The ALS Association 2014 Clinical Conference Phoenix, AZ

1. ALS Families
Laurie B. Fieldman, LCSW
Director of Social Services, Les Turner ALS Foundation

2. The Les Turner ALS Foundation
www.lesturnerals.org

3. ALS is disease of emotional changes, too.

4. Independence vs. Safety

5. ALS is like a pressure cooker.

6. We can help find pieces of the answers.

7. Normalcy is worth its weight in gold.

8. Couples go through ALS together, but…

9. These are truly extraordinary circumstances.

10. Think outside the box.

11. It’s not easy to accept help.

12. The family must gather its resources.

13. You can work with any size support system.

14. Begin by organizing your resources.
• lotsahelpinghands.org
• caringbridge.org
• takethemameal.org
• sharethecare.org
• familycalendar.org

15. ALS brings so many intense emotions:
loss, frustration, helplessness.

16. Loss: physical function, control, identity

17. Helplessness

18. Frustration

19. Frustration

20. We all want our roar to be heard.

21. We take out our frustrations on those
closest to us.

22. Resentment is the line in the sand.

23. Families…what IS “normal?”

24. What was the family like before the ALS?

25. We have to work with closed family systems.

26. Secrets and lies

27. We can only do what they allow us to do.

28. Everything is not always as it appears.

29. We all have ideas of what a couple looks like.

30. We have images in our mind of “family.”

31. Who’s to say?...

32. …if it works for them!

33. Quality of Life (QOL)

34. “I’m not going to let this
take any more of me than it has to!”

35. Energy conservation is for the spouse, too.

36. “Conserve my energy for what?!”

37. Our most challenging families

38. Objective 1: Understand the 3 most common ALS
issues in a family: loss, helplessness, frustration.

39. Objective 2: Be able to provide 2 tools
to help the family cope.

40. Encourage patient and family to ask for help:
counselors and support groups, as well as their
support network.

41. Teach that the anger is at the disease.

42. Objective 3: Be able to teach three ways to
maximize support and resources:

43. Use a page on website to organize resources

44. Think outside the box:
Peapod (grocery delivery service); take FMLA
one day per week.

45. Validate how difficult it is to ask for help,
but explain the necessity.

46. Something for us to remember:

47. Thank you to the Les Turner ALS Foundation
and thank you for your attention today!