ALS Caregiver Support
Caregiving is done out of love, devotion, and responsibility to the person with amyotrophic lateral sclerosis (ALS). While it can be personally rewarding, it can also extract a huge emotional toll on the caregiver.
What does it take to be an ALS caregiver?
Caregivers are individuals who provide physical and emotional support to help loved ones manage ALS.
Anyone can be a caregiver, but the role is usually undertaken by family members, such as a spouse, partner, sibling, parent, or adult child. The duties of a caregiver are unique to each situation, but they often include personal care; assistance with mobility, transportation, housework, grocery shopping, and looking after other family members’ needs. Some people with ALS may have a single caregiver; others can have several.
While being a caregiver can be a source of personal satisfaction, the work can also be very demanding. Family caregivers often provide care day and night and during weekends. This can place a heavy emotional burden on the caregiver, which may negatively affect their physical and psychological well-being. This may result in the caregiver overlooking their own needs, which threatens their ability to provide their loved ones with the best possible care.
There are many helpful tools and organizations that can provide information and support caregivers.
How do you support a loved one with ALS?
As a care partner, there are many ways you can support your loved one through their ALS journey. Every situation is different, but care partner duties often include helping with:
Emotional support1
- Being someone your loved one can talk to about how they’re feeling
Daily activities2
- Getting dressed
- Personal hygiene
- Eating
Treatment2
- Setting up and going to appointments
- Giving medications
- Managing insurance coverage
Household to-dos2
- Grocery shopping
- Household chores
- Preparing meals
Communicating openly with your loved one about what their needs are now and understanding how they will change over time is an important part of providing care.
What equipment can be used to help people with ALS?
Recent advances in assistive technology and adaptive equipment can help people with ALS perform daily routines, maintain independence longer, and live more comfortable lives.3
These can make your job as a caregiver easier, as well as reduce both physical and mental stress. Some of these tools include:
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 caregivers peace of mind in the scenario where a person with ALS falls and can’t get up. In this case, they simply push a button on a bracelet, pendant, or switch to alert the company operator, who then connects them with support.
Cameras
Especially useful for caregivers 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.
What is the Caregiver Bill of Rights?4
Remember, as a caregiver, your health and well-being are just as important as those of the person you're caring for. Review the Caregiver Bill of Rights as a reminder that your needs matter as much as those of the person you're caring for.
I have the Right to
- Take care of myself. This is not an act of selfishness. It will give me the capacity of taking better care of my loved one.
- Seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
- Maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.
- Get angry, be depressed, and express other difficult feelings occasionally.
- Reject any attempt by my loved one (consciously or subconsciously) to manipulate me through guilt, anger, or depression.
- Receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.
- Take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
- Protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
- Expect and demand that as new strides are made in finding resources to aid persons in our country, similar strides will be made toward aiding and supporting caregivers.
—Adapted from Jo Horne, author of Caregiving: Helping an Aging Loved One
How do you cope with burnout as a caregiver?5
Being a caregiver requires a great deal of effort and energy. These expectations can take a toll, and that may lead to burning out.
What is burnout?
Burnout can be defined as an overexertion of physical or emotional strength, usually as a result of prolonged stress. Burnout can be as subtle as lacking motivation or feeling disconnected to more serious complications.
What causes burnout?
Common causes of burnout are a desire for perfectionism, the feeling that our work is never ending, or we’re performing impossible tasks that involve multitasking and self-sacrifice.
What are some symptoms of caregiver burnout?
Common symptoms can include interpersonal problems, health problems, poor performance due to lack of productivity, substance abuse, workaholism, depression, and loss of self-esteem.
What are ways you can care for yourself?
Becoming a care partner can be a big and sudden change in your life. It’s important to remember that you have emotional and physical needs too. Caring for yourself helps you provide the best care for your loved one.
It is okay to feel guilt and anger when things are overwhelming. These are normal reactions to being in a very hard situation. Be kind to yourself and recognize that you are doing your best and that is enough.
Make time for yourself to enjoy a hobby
Connect with other care partners through support groups
Lean on friends and family for day-to-day support
How do you support children of loved ones with ALS?
When a parent or loved one is diagnosed with ALS, children and teens often play a big part in daily care. They may help with basic medical needs, provide emotional support, share in household chores, help with hygiene tasks, or care for siblings.6
It's important to support the overall well-being of a young carer. Access to mental health, school-based, and family support can help ease stress. Recognizing their role, and how caregiving may affect things like school performance and relationships, can help reduce challenges and support positive involvement in care.6
Young carers of a person with ALS spend an average of 5 hours a day doing care tasks.6
To help young children understand ALS with compassion and honesty, consider watching the Luki & the Lights short movie by YCare.
WATCH NOWThese resources offer support for children living with or caring for someone with ALS.
By listing these resource organizations, Shionogi Inc. is not endorsing any particular service or group and is not responsible for the content of these sites or services. These resource organizations are provided here for informational purposes and are not meant to replace your doctor's medical advice.