HOW TO HELP

Caring Bridge and ALS Care Connection are helpful ways to keep family and friends updated and to rally them around to help. BUT... The PALS (Person with ALS) and the Caregiver may not have the time or emotional bandwidth to set them up. Offer to help!
​Caring Bridge:​ A free online tool for sharing health updates. It is an easy and ad-free way to communicate health news to family and friends—all in one place.
​​ALS Care Connection is a service to support caregivers and people facing ALS. It helps to:
  • Post updates and information about the PALS.
  • Coordinate volunteer activities, including meals, transportation to medical appointments, and other tasks.
  • Provide a private space where community members can offer words of support and encouragement. 
  • Schedule offers to give caregivers a break or to do something special for them.
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OFFERING HELP: Instead of asking how you can help, offer concrete ways you can lend a hand. For example:

​NOTE: When you are with the PALS or caregiver, take time to listen. Often, they may have some things they'd like to talk about to someone other than their loved one.
  • When you are planning a trip to the grocery (or other) store, ask if you can do their shopping for them or pick up a few things for them while you are there.
  • Schedule a day of the week to do their shopping.
  • Ask if there are any personal appointments the caregiver has planned and offer to keep their PALS company while they are out.
  • Ask if there's anything you can help with around the house or keep their PALS company while the caregiver is getting things done that they been putting off or haven't had time to do.
  • If you know the PALS has to go to a doctor's appointment, ask if they'd like you to go along to take notes so they can concentrate on their conversations with the doctor.
  • Find a nearby ALS support group and go to a meeting to check it out. Report back to the PAL or caregiver so they can decide if the time is right to attend the meetings themselves.
  • If they are going out to an appointment or support group, ask if you can accompany them to lend a hand getting their PALS and equipment to and from the car.
  • ALS is a whole new, different world. The PALS and/or caregiver may be feeling overwhelmed by the number of things they need to learn about ALS and caregiving. Ask if you can do some research.
  • Sometimes they might not have the time or energy to make a meal. Send a restaurant gift card for those days.
  • Ask if there is a good day to bring over a meal either for that night or to put in the freezer for another night.
  • Ask when a good time is you can visit -- but don't drop in. Offer the caregiver time to go do something else while you are visiting. 
  • Offer to read to the PALS.
  • Offer to watch a tv show or movie with the PALS.
Making an honor donation to fund ALS research is a thoughtful way to show you care.
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Send notes or cards every now and then -- not only to PALS but to caregiver as well -- to let them know you are thinking of them. ​There is no right thing to say ... other than to speak from your heart. Simply hearing from you will bring them joy and comfort.
Organize a fundraiser or sign up to participate in one! CLICK HERE FOR IDEAS!
Burnout: The everyday tasks a caregiver does for their loved one are often time-consuming and require a great deal of effort. At the same time, they are dealing with the emotions that go along with seeing their loved one struggle with ALS. Their responsibilities, expectations, and emotions can take a toll on them, and they may find themselves headed down the path of burnout.

Learn about burnout and how to recognize the symptoms. Talk with the caregiver if you see signs of burnout.

The ALS Association answers these very important questions:
  • What causes burnout?
  • How do I know if I am burning out?
  • What can I do to prevent burnout?
Click to learn the answers: ​Coping With Burnout | The ALS Association