A diagnosis of amyotrophic lateral sclerosis (ALS) can be life-altering for your entire family. And deciding to care for someone with ALS takes compassion, patience, and dedication.
HAVE QUESTIONS? ASK A JOURNEYMATE RESOURCE SPECIALIST
CALL 1-855-457-6968
HAVE QUESTIONS? ASK A JOURNEYMATE RESOURCE SPECIALIST
CALL 1-855-457-6968Caring For a Loved One With ALS
What does being an ALS care partner mean?
As a care partner to someone living with ALS, your role is invaluable—providing both physical care and emotional strength to your loved one on every step of their journey. While the duties of a care partner are unique to each situation, they often include personal care, assistance with mobility, and working with your loved one’s care team to find the best possible resources to help manage their condition. Some examples of what you might expect are:
Providing physical and emotional support
- Helping with physical tasks like cooking or getting dressed
- Encouraging your loved one to express how they are feeling
Taking part in their medical needs
- Being an active participant in treatment decisions
- Scheduling and attending appointments
- Administering medication and monitoring for side effects
Managing logistics
- Coordinating insurance coverage
- Managing prescriptions
- Doing or delegating household tasks
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How RADICAVA ORS® May Help
RADICAVA ORS® is an FDA-approved oral treatment option for ALS
As you and your loved one continue to face ALS together, RADICAVA ORS® offers an oral option that’s formulated to fit life’s routines with administration at home or on the go.a (see footnote)
We understand that there is no cure for ALS. But if there’s a possibility that RADICAVA ORS® could slow the progression of her ALS, I want her to have that. What mom wouldn’t want to have that for her daughter?
In ALS, every point matters
Losing or keeping a single point on the ALSFRS-R can have a significant impact on those living with ALS. That’s why the pivotal phase 3 clinical trial of RADICAVA® was specifically designed to measure change in physical function assessed by the ALSFRS-R.
No matter how your loved one’s ALS progresses, the sooner they start treatment, the sooner they may begin slowing the loss of physical function.
RADICAVA ORS® may help slow the loss of physical function
Learn more and review details about the efficacy and safety of RADICAVA ORS®.
Why RADICAVA ORS® for ALS?
Watch a caregiver of a loved one with ALS share experiences with ALS and RADICAVA ORS®.
Andi Shares a Caregiver’s Perspective
Have questions about starting treatment?
A JourneyMate Resource Specialist is ready to help you find information and educational resources about ALS and RADICAVA ORS® (edaravone) as you move forward on your journey with ALS.
Call toll-free 1-855-457-6968 between 9 AM and 9 PM ET, Monday through Friday.
How to discuss staying on treatment if your loved one takes RADICAVA ORS®
Because RADICAVA ORS® works by slowing progression and not reversing damage caused by ALS, it can be hard to know how much it’s working. This might be frustrating for your loved one. Listen to their concerns and remind them that RADICAVA ORS® has been clinically proven to help slow the loss of physical function in patients with ALS over time. While it’s difficult to say exactly how much of an effect it has on any given person, RADICAVA ORS® may remain an important part of a care plan and help slow progression of the disease.
You may want to gently remind them of this and keep them motivated to continue treatment.
Do you need more information about RADICAVA ORS®?
Taking Care of YOUR LOVED ONE
Technology and equipment to help along the way
In addition to medication, advances in assistive technology and adaptive equipment can help people with ALS perform daily functions, maintain independence longer, and live more comfortable lives.
Suggestions to help your loved one
Adaptive clothing
Clothing designed for people who have difficulty dressing. These make daily activities, such as dressing and using the bathroom, easier.
Portable showers
Portable showers can be attached to any faucet, have waterproof sides, allow enough room for a wheelchair to roll in and have a pump to allow water to flow out into the sink. These can be used if a person has difficulty accessing the bathroom.
Bidets
If a person with ALS loses hand function, bidets offer a level of independence and can be added to any existing toilet.
Emergency alert devices
These can give care partners peace of mind in a scenario where a person with ALS falls and is unable to get up. In this case, they simply push a button on a bracelet, pendant, or switch to alert an operator, who then connects them with support.
Cameras
Especially useful for care partners who work remotely, cameras provide a means to monitor a person with ALS throughout the day.
Home automation systems
These can allow people with ALS with limited or no hand function to remotely open doors, adjust thermostats, or turn on a TV and other electrical devices.
You can find a variety of experts for your loved one’s care team at a multidisciplinary ALS clinic
Learn more about Connecting With Your ALS Care Team.
Understanding ALS
Taking Care of YOU
As a care partner, you play an invaluable role in supporting your loved one with ALS. Let’s not forget about you and your own needs, including taking care of your physical and emotional health.
Suggestions for self-care
Seek emotional health support
Being a care partner can affect your mental and emotional health.- Mental health providers are trained to assist people in many life situations, including those who are caring for a person with a progressive disease
- Talk to your doctor if you’re having concerns
Ask for help
Reach out to family and friends when you need a hand and be open to accepting help when it’s offered.- As ALS progresses, consider leaning on others for support so you can take the time you need to recharge
- Look into local, state, and federal programs that may provide support and assistance
Be kind to yourself
Feelings of guilt and anger are normal.- Don’t let them keep you from recognizing the amazing job you’re doing
- Recognize that caring for yourself can help you provide the best possible care for your loved one
Manage your stress
Set expectations with your loved one, family, and friends.- Communicate your feelings and needs
- Take part in activities that reduce stress
- Seek counseling, as it may also be beneficial
Consider your personal needs
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.- Build in regular breaks from care partnering and make them a priority
Talk to other care partners
Connect with others who are caring for someone with a progressive illness who can lend an understanding ear.
Other care partners can:- Be a source of great support
- Offer advice
- Share solutions to common problems
Coping With Burnout
Being a caregiver can be fulfilling. It can also consume a great deal of your physical, mental, and emotional energy. Burnout can make it difficult to be the partner you want to be, and it may also take a toll on your health.
Look out for these signs of burnout:
- Social withdrawal
- Inability to sleep
- Exhaustion
- Irritability
- Inability to relax or concentrate
- Forgetfulness
- Depression and anxiety
- Lack of appetite
Considering respite care
Respite care is simply a moment or period of rest or relief. It is meant to give you a break from your daily care responsibilities. It’s important to have a conversation with your loved one about taking time for yourself, before you need it.
There are different ways to give you the chance to have respite care. These include in-home substitute care from a trained professional, a short-term stay for your loved one at a facility or residence that has trained healthcare staff onsite, or asking your family and friends to help out.
I found that having a meeting, getting people together and asking them how they wanted to help, was wonderful. Give them a list of the options to choose from. People with skills just really can make a huge difference.
Remember:Caring for yourself can help you provide the best care possible for your loved one.
The information and advice provided here are general in nature and are not intended to be a substitute for professional medical advice. You are strongly encouraged to seek the advice of your doctor or other qualified healthcare provider (HCP) with any medical questions and about providing care.
aStore RADICAVA ORS® upright at room temperature between 20°C and 25°C (68°F and 77°F) and protect from light. Discard 15 days after opening bottle or, if unopened, 30 days from date of shipment indicated on the carton pharmacy label. Return to content
