It is sad and shocking news when a loved one is diagnosed with ALS. Support from family and friends can make a big difference.
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.
Family, friends, and the greater community are often an untapped resource that can make a true difference in the lives of both the person with ALS and the caregiver. Below we suggest some ways you can help.
Schedule times to go over and just hang out. The person will enjoy your company, and the caregiver will enjoy a much-needed break.
Do something fun.
Go out and watch a movie. Go to a sporting event or concert. Grab lunch at your favorite restaurant. If mobility is a challenge, plan ahead and ask what will work best.
Plan a trip together.
Depending on his or her physical condition and openness to the idea, you can travel together. Wheelchair Getaways is a wheelchair-accessible van rental company with locations across the country. With some planning, it is possible to fly, even if your loved one is in a wheelchair.
Propose concrete help.
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. If you have a particular skill that could be useful—like cutting hair, giving a massage, trimming or doing nails, fixing technology, or doing handyman work—propose that.
Help with an errand or chore.
Walk the dog. Do some yard work. Go grocery shopping. Whether you lend a hand once or on a weekly basis, the caregiver will appreciate it.
Provide a ride.
Drive to a doctor’s appointment, barber shop or hair salon, or family dinner. Or, you could help arrange handicap-accessible transportation if that is the best option.
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 great 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.
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.
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 set up a video chat through Skype, Facetime, or Google Hangouts. Send the occasional card, email, text, or small gift. If possible, schedule a visit.
Attend support groups.
The ALS Association has chapters around the country that provide a variety of support groups for people with ALS, caregivers, family, and friends. You can attend on your own or with your loved one or caregiver.
Advocate for political change.
The ALS Association has helped change laws and policies—such as shortening the Medicare waiting period from 24 months to 5 months—that have improved the lives of everyone with ALS. Learn how you can take action.