Join the Journey
Learn How You Can Join the Journey By Following These Practical Steps
- Organization—Is organization your gift? Consider stepping into a coordinator role
- Offer to help provide 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
- Coordinate the helping team:
- Assist in transportation to medical visits
- Provide assistance with home upkeep
- Spending time with the patient and providing breaks for caregiver
- ALSA provides an online platform with mobile app
Not ready to be a coordinator but still want to help? Terrific! Consider your skill set.
- Honestly reflect on what you do well and how you can be truly helpful.
- For you it might be cleaning, home repair, vehicle maintenance, or cooking.
- One example: A member of our church is a hair stylist. In the last year of my friend’s journey with ALS, she 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 skill set.
Practical Ways to Help:
- Provide a meal
- Deliver a homemade meal
- Schedule delivery from a restaurant
- Drop off ready-to-eat, healthy foods 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
- Pet supplies
- 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
- Show up
- 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
- “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 and 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.
- Looking for more in-depth information about helping someone you love experiencing illness?
- Check out Alongside by Sarah Beckman