ALS Caregiver Support

Supporting Caregivers Throughout the ALS Journey

Caring for someone living with ALS is an act of love, strength, and commitment. While caregiving can be deeply meaningful, it can also feel physically exhausting and emotionally overwhelming at times.

ALS caregivers often manage daily care needs, coordinate medical appointments, handle complex decisions, and provide constant emotional support. Your role is essential, and your well-being matters too.

This page provides ALS caregiver support resources, services, and programs designed to help you feel informed, connected, and supported throughout every stage of the journey.
 

ALS Care Services for Caregivers and Families

At ALS United Mid-Atlantic, we understand that navigating ALS can feel overwhelming at times. Our Care Services team is here to walk alongside you, offering guidance, support, and connection to the resources that matter most to you and your family.

Our team helps simplify the process by offering:

  • Care coordination and personalized support plans
  • Guidance on ALS multidisciplinary clinics
  • Access to social work and mental health resources
  • Assistance with medical equipment and home care services
  • Insurance and financial guidance
  • Educational programs for caregivers and families

Our experienced care professionals, including social workers and ALS-trained specialists, work directly with families to reduce stress and ensure care is centered around your goals and quality of life.

You are not alone; we are here to help.

Learn More About ALS United Mid-Atlantic's Care Services

 

ALS Caregiver Resource Groups

Connecting with others who understand the ALS journey can make a meaningful difference. ALS United Mid-Atlantic offers free caregiver resource groups across our region.

These groups provide a safe and supportive space to:

  • Share experiences with other ALS caregivers
  • Learn practical caregiving strategies
  • Build lasting connections with a supportive community

Whether you are new to caregiving or have been supporting a loved one for years, these groups can help you feel less alone and more empowered.

For general questions about our resource groups, contact: Steve Spaulding at steve@alsmidatlantic.org or call 215-664-4131.

Learn More About Resource Groups
 

In-Home ALS Care Support for Caregivers

Caring for someone with ALS at home presents unique challenges. The Abrams In-Home Care Program is designed to bridge the immediate needs of care at home with planning for the future.

Through this program your social worker partners with you:

  • To discuss and assess the level of caregiving needed.
  • To identify caregiver options.
  • To develop a personalized plan for sustaining care at home.
  • To be an ongoing support to care at home throughout your journey with ALS.

Caregivers also receive education, emotional support, and practical guidance to help build confidence and reduce stress.

This program helps families maintain independence while ensuring their loved one receives compassionate, high-quality care.

Learn More About the In-Home Care Program

 

Caregiver Wellness and Respite: Caregiver’s Days

Caregiving is demanding, and taking time to recharge is essential. Our Caregiver’s Days are designed to give you space to rest, connect, and focus on your own well-being.

These events are thoughtfully planned and may include:

  • Social time and shared meals
  • Relaxing and creative activities
  • Educational sessions and demonstrations
  • Hands-on workshops

Questions about Caregiver’s Days? Contact Carla Patton & Michelle Rogers at events@alsmidatlantic.org.

Learn More About Upcoming Family Events
 

Common Challenges ALS Caregivers Face

Many caregivers experience similar challenges throughout the ALS journey. You are not alone if you are dealing with:

  • Physical fatigue from daily care tasks
  • Emotional stress or caregiver burnout
  • Uncertainty about disease progression
  • Difficulty balancing caregiving with work or family life

Seeking support early, through services, groups, or professional guidance, can make a significant difference in your well-being and your ability to provide care.
 

We Are Here to Support You

Caregivers are an essential part of the ALS care team. If you have questions or need assistance finding the right resources, please contact us. Our staff is available to provide guidance and connect you with appropriate support services.

You do not have to navigate this journey alone.

Resources for Living with ALS