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.
Offering respite care to partners and family is a big help too! Sometimes caregivers need to "recharge" in order to be at their best when caring for a family member. Remember, you can not pour from an empty cup. Instead of gifts this year, sign up for an afternoon or evening to spend with a loved one so the primary caregiver has the opportunity for restoration.
Thank you for your thoughtful suggestions.
My mother lost her battle to ALS a year ago yesterday…she stayed with me until the end. My husband and I took care of her. It was the most painful thing to witness to see her deteriorating everyday but I’m so glad she was with me the last moments here on earth. I know she is in now Home in Heaven waiting on me….
My wonderful wife has had ALS going on nine years. It was like being hit the head with a large hammer. No one can imagine being diagnosed with ALS out of the blue. She has been bedridden for the last three years which is very labour intensive. And then I lost my 48 year old son back in October. Another hit with the same hammer.
And in all this time of one devastating blow after another, I have yet to hear anyone say what is needed most in this time is a loving heart felt hug from the ones that are closest to you. In almost nine years no one has taken the time not say anything but give a big hug and cry with me.
I stand waiting for the next hammer blow to come that of her death. I can tell you that the strength that keeps me going comes from the ALMIGHTY LORD AND SAVIOR who without I could not continue.
Tell that to people who are taking care of a love one.
I'm so sorry that you and your family have had such tragedy in your lives. Thank you for your insightful comments. I'm going to say a prayer for you all now. May God bless you and keep you.
Need help getting medical equipment for my father who is battling ALS for 10+ years. Also to help caregiver which is my mom. Medicare doesn’t cover anything for his comfort at home
Hi Rosalie. Our hearts go out to you and your family. Please contact your local ALS Association chapter for assistance: als.org/chapters.
My brother-in-law has ALS. I recently moved to another state away from him. I keep in touch with him, but feel helpless so far away.
I've encouraged him to reach out to the ALS Association, which he has, but he is sometimes resistant to help. He is a very proud, independent person. He lives with his 97 year old mother who is growing weaker as well. They somehow want to depend on each other, which in my opinion is futile. Can you give me some advice as how to help.
Thank you !
My husband os 58 and in January this year diagnosed with ASL..... WE REALLY DON'T KNOW HOW TO GO ABOUT IT..... PLEASE GUIDE ME THROUGH.....TQ
Hi Sarala, please contact your local ALS Association chapter for free information, resources and support. Find their contact information here: als.org/chapters
Plz tell me can it goes recover
Hi Lone, unfortunately there is no cure for ALS yet.
My daughter's husband has advanced ALS, he no longer can eat anything, only liquids, what can I do to help her and support her
Elizabeth, my heart goes out to you, your daughter, and her husband. Every family is different, but your daughter might appreciate you providing respite care or taking care of some chores so she can take a break. Learn more here: https://www.als.org/navigating-als/for-caregivers/respite-care
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