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

The Les Turner ALS Foundation www.lesturnerals.org

ALS is disease of emotional changes, too.

Independence vs. Safety

ALS is like a pressure cooker.

We can help find pieces of the answers.

Normalcy is worth its weight in gold.

Couples go through ALS together, but…

These are truly extraordinary circumstances.

Think outside the box.

It’s not easy to accept help.

The family must gather its resources.

You can work with any size support system.

Begin by organizing your resources.

•  lotsahelpinghands.org

•  caringbridge.org

•  takethemameal.org

•  sharethecare.org

•  familycalendar.org

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

Loss: physical function, control, identity

Helplessness

Frustration

Frustration

We all want our roar to be heard.

We take out our frustrations on those closest to us.

Resentment is the line in the sand.

Families…what IS “normal?”

What was the family like before the ALS?

We have to work with closed family systems.

Secrets and lies

We can only do what they allow us to do.

Everything is not always as it appears.

We all have ideas of what a couple looks like.

We have images in our mind of “family.”

Who’s to say?...

…if it works for them!

Quality of Life (QOL)

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

Energy conservation is for the spouse, too.

“Conserve my energy for what?!”

Our most challenging families

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

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

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

Teach that the anger is at the disease.

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

Use a page on website to organize resources

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

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

Something for us to remember:

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