Whether it is delivering groceries, doing yard work, or walking the dog, there is probably something you can do to make everyday life a little more manageable.
ALS is a life-altering disease for both the person with ALS and the primary caregiver. It is not uncommon for the primary caregiver (often a spouse) to try to do everything, and then burn out. Support from family and friends can make a true difference in the lives of both the person with ALS and the caregiver.
ALS is a life-altering disease for both the person with ALS and the primary caregiver. It is not uncommon for the primary caregiver (often a spouse) to try to do everything, and then burn out. Support from family and friends can make a true difference in the lives of both the person with ALS and the caregiver.
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Caregivers are often reluctant to ask for help. They may feel guilty or simply too overwhelmed to organize their thoughts. Instead of saying “Let me know if I can help sometime,” try asking what is needed or suggesting something specific you can do. Keep in mind that every family will respond differently, and some may decline help. If this is the case, respect their decision.
Here are some ways you might be able to help:
Here are some ways you might be able to help:
Deliver a Meal
Whether takeout or home-cooked, delivering a meal will be appreciated. Coordinate with the caregiver first, or sign up through a coordinated calendar or website like Meal Train.
Whether takeout or home-cooked, delivering a meal will be appreciated. Coordinate with the caregiver first, or sign up through a coordinated calendar or website like Meal Train.
Coordinate Support
If you are an organized person, maybe you could be the point person to mobilize support from the larger community. Be sure to talk with the primary caregiver first. Nowadays, there are many online calendar options—like Lotsa Helping Hands, Caring Bridge, and Google Calendars—where you can post needs and people can sign up. The ALS Association has a great program called Care Connection that can train and guide you. Watch the video to learn more. Also, be sure to keep less tech-savvy people in the loop by phone and email.
If you are an organized person, maybe you could be the point person to mobilize support from the larger community. Be sure to talk with the primary caregiver first. Nowadays, there are many online calendar options—like Lotsa Helping Hands, Caring Bridge, and Google Calendars—where you can post needs and people can sign up. The ALS Association has a great program called Care Connection that can train and guide you. Watch the video to learn more. Also, be sure to keep less tech-savvy people in the loop by phone and email.
Attend a Support Group
ALS organizations across the country coordinate support groups (virtual and in-person) for people with ALS, caregivers, family, and friends.
ALS organizations across the country coordinate support groups (virtual and in-person) for people with ALS, caregivers, family, and friends.
Connect from Afar
If you live out of town or out of state, you can still be present. Call your loved one to chat—even if it may feel hard to pick up the phone. Or schedule a video call. Send the occasional card, email, text, or small gift.
If you live out of town or out of state, you can still be present. Call your loved one to chat—even if it may feel hard to pick up the phone. Or schedule a video call. Send the occasional card, email, text, or small gift.
Join the Fight
Whether it's volunteering, fundraising, donating, or becoming an advocate, there are many ways to get involved in the broader fight against ALS.
Whether it's volunteering, fundraising, donating, or becoming an advocate, there are many ways to get involved in the broader fight against ALS.
Learn more
If you would like a deeper understanding of what your loved ones are experiencing and the challenges they are facing, we recommend exploring this website, starting with the following pages:
If you would like a deeper understanding of what your loved ones are experiencing and the challenges they are facing, we recommend exploring this website, starting with the following pages:
