So you want to help an ALS family but aren’t sure where to start? The information below can help you determine the best way for you to join the journey. We’re so glad you’re here.
Is organization your gift? Consider stepping into a coordinator role.
Coordinate meals for the family: Receiving meals can be a huge blessing to a family experiencing ALS.
There are several wonderful and FREE online platforms that streamline providing meals.
Coordinate Updates: ALS families receive countless requests for information and updates. Keeping friends and family updated can be time consuming for the patient, caregiver, or family. While some caregivers enjoy crafting these updates, others find this task difficult or draining. If this area falls within your skill set, ask the family if your assistance would be helpful.
Maintain an online presence for the family.
Caring Bridge (https://www.caringbridge.org/)
Facebook group or page
Offer to craft email updates if they prefer not to maintain a page or group.
Coordinate Helpers: Many family members, friends, and community members want to help. Keeping track of these valuable volunteers and coordinating their services can be an immense help to ALS families.
ALSA provides an online platform with mobile app (http://www.alsa.org/als-care/caregivers/care-connection.html)
Not ready to be a coordinator but still want to help?
Terrific! Consider your skill set. Take some time to honestly reflect on what you do well and how you can be truly helpful. What are ways that you are gifted and how can you share those gifts?
For you, it might be cleaning, home repair, vehicle maintenance, or cooking.
An example of using your unique gifts: In the last year of my friend’s journey with ALS, a hair stylist from his church came to his home regularly to cut his hair and trim his beard. He received the care and attention he needed without having to leave his home. She served him well using her specific gifts.
Consider These Practical Ways to Help:
Provide a Meal
Deliver a homemade meal
Schedule delivery from a restaurant
Drop off ready-to-eat, healthy snacks such as cut up fruits and vegetables
Send Some Encouragement
Write a note
Send a text or email (including a closing message that you don’t expect a response)
Deliver a gift or gift card
Offer an Errand Run
Pick up prescriptions or medical supplies
Help with the Kids
Invite them to a fun outing
Offer to come over and hang out with them
Create a routine for picking up/dropping off laundry
Home Maintenance and Lawn Care
Get some friends together, make a schedule, and cover lawn care for the entire season
Put together a project day and complete necessary repairs around the house
Offer to spend time sitting with the person living with ALS. This allows the caregiver an opportunity to recharge and attend to personal needs.
As a Helper, Keep These in Mind
Whatever your skills and however you choose to help, please consider the following as you join the journey:
“I don’t know what to say!”
Let them (person with ALS, caregiver, family member) guide the conversation.
Ask how they are doing/feeling TODAY? How has their morning gone?
Don’t ignore the “normal”. It’s okay to talk about what’s happening in your life or community. This helps maintain a connection with friends and family.
Share some joy. A bit of levity or a shared smile can make a difference in an otherwise challenging day.
Avoid giving medical advice or suggesting treatment options.
Be Specific. Take the Initiative. Follow Through.
“I have some time on Monday afternoon. Can I do a grocery run for you and tackle a few other errands?”
“Dan from Minnesota likens making a specific offer to choosing a birthday gift. He said, ‘If the giver can figure out the perfect gift—or at least make a solid effort—that is 1,000 times better than if I need to make a “list” so you can get me something.’ The same goes for helping those you care about in their time of need.” Sarah Beckman in Alongside (p. 47)
Stay Flexible. Be prepared for them to cancel a visit or change plans. It’s difficult for them to anticipate physical and emotional fatigue ahead of time.