Caring for someone with ALS takes compassion and an unwavering devotion. It can be a rewarding experience, a source of personal satisfaction, and may help bring you closer together.
Providing care can also be filled with challenges, especially if you are the day-to-day caregiver. It can take a physical, psychological, and emotional toll. While your focus may seem to always be on your loved one, it's important that it does not cause you to neglect your own needs.
Reminders and helpful tips
Take care of yourself
Continuing to do the things that are important and enjoyable to you is not selfish. Doing so may help improve your ability to care for your loved one.
Ask for help
Reach out to family and friends when you need a hand. Be open to accepting help when it's offered.
Feelings of guilt and anger are normal. But don't let them keep you from recognizing the amazing job you're doing.
Manage your stress
Set expectations with your loved one, family members, and friends. Communicate your feelings and needs. Take part in activities that reduce stress, such as exercise and family/social events. Professional counseling can also be beneficial.
Be aware of your emotional health
Providing care can affect your mental and emotional health. Talk to your healthcare provider if you think you're having difficulty with your emotions or behavior, or have any other personal health concerns.
Talk to other caregivers
Share your experiences with people who are in similar situations. They can offer advice, share solutions to common problems, and lend an understanding ear.
Providing support during treatment
RADICAVA® (edaravone) an FDA-approved treatment option for ALS. At times, the infusion schedule for RADICAVA® may seem challenging. Also, because RADICAVA® does not reverse ALS, your loved one may feel it is not making a difference.
If your loved one starts treatment with RADICAVA®, they may need encouragement at various times. It may help to remind them that in clinical trials, RADICAVA® was shown to slow decline in the loss of physical function in people with ALS (learn more).
Facing challenges is a regular part of caregiving. It helps if you keep a positive attitude as best you can. You may also find this works both ways. Some days, you may have to motivate your loved one in their fight against ALS. Other times, you may find them encouraging you.
You're never alone
Caring for a loved one who has ALS takes a collaborative approach. Remember to connect with family and friends for support. National and local support organizations can be a great resource for additional education and advice. And be sure talk to your loved one's healthcare provider about any questions or concerns.
Searchlight Support® is ready to provide education and assistance for you and your loved one. In addition to answering questions you may have about RADICAVA®, we can help you locate an infusion site of care, navigate insurance questions, and help you with cost support options for RADICAVA® that may be available to you.
The information and advice provided here are general in nature and are not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified healthcare provider with any questions regarding a medical condition.