Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great.
Leslie Ryan, Sr. Director of Education & Professional Competencies at The ALS Association, spent 15 years supporting families impacted by ALS and learned this first-hand while working with the care services team at the Rocky Mountain chapter. “One of the things we often saw was that people genuinely want to help when a family receives such a difficult diagnosis,” she says. “They recognize the severity of the situation and want to chip in, they just aren’t sure how.”
“We also found that many times families impacted by ALS who really need the help, often times are uncomfortable accepting it and actually turn it away,” she adds.
To help spread awareness of these issues and initiate the conversation about the many ways you can help caregivers and families impacted by ALS, the Association has put together these top ten tips to think about:
- Stay in touch.
ALS is a journey, find ways to be present all along the way.
A simple card, email, phone call or visit can mean a lot.
- Do the little things.
Living with ALS can be overwhelming, making daily tasks challenging.
Bring a meal, walk the dog, mow the lawn or take out the trash.
- Include the person living with ALS in activities.
ALS can feel very isolating for everyone involved, especially the person who is diagnosed.
Encourage them to keep participating in daily life, continue with hobbies, and engage with friends and family.
- Be specific when offering help.
Life is busy, be honest about what you can and can’t do to help.
Run an errand, drop off a meal, or help drive kids around to activities.
- Learn about ALS.
Do what you can to understand the disease and what to expect.
Read up on the details, attend a support group, or meet with your local ALS Chapter.
- Keep showing up.
The ALS journey is different for everyone.
Let them know you are there and will continue to be through the entire journey. And do it.
- Offer a shoulder to lean on.
ALS can create stress for the entire family.
Be sure to offer your support and friendship and be present when you’re needed most.
- Build a network and coordinate support.
Providing the best quality of life for people living with ALS and their families can take a village.
Recruit friends and family members, assign specific tasks and schedules, set up a Care Connection group.
- Keep all family members in mind.
Remember, ALS impacts EVERYONE in the family, regardless of age.
Spread the love. Offer to take the kids to activities and help out with elderly relatives.
- Join the Fight.
We have renewed our pledge to do whatever it takes to make ALS a livable disease until there is a cure.
Whether it's volunteering, fundraising, donating, or becoming an advocate, there are many ways to get involved in the broader fight against ALS.
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Download this infographic about caregiving and share on your social platforms to support a caregiver you know.
To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog HERE.