Physical Address
304 North Cardinal St.
Dorchester Center, MA 02124
Emergency Planning for ALS Caregivers
Emergencies can be frightening, especially when breathing, equipment, or communication are involved. Having a clear plan in place helps caregivers respond more quickly and with greater confidence.
This guide outlines practical steps to prepare for urgent situations that may arise while caring for someone living with ALS.
Always follow the instructions provided by your medical team and local emergency services.
Why Emergency Planning Matters
ALS affects breathing, mobility, and communication. In urgent situations, response time matters.
Planning ahead can:
- Reduce panic during emergencies
- Help caregivers act quickly
- Ensure equipment and supplies are ready
- Improve safety and outcomes
Preparation brings clarity during stressful moments.
Build an Emergency Contact List
Keep a printed list in a visible location and store a copy in your phone.
Include:
- Neurologist
- Primary care physician
- Respiratory therapist
- Home health agency
- Durable medical equipment provider
- Local emergency services
Make sure all caregivers and family members know where this list is kept.
Create an Emergency Information Sheet
In an emergency, first responders may not know the patient’s medical history.
Prepare a one-page summary that includes:
- Full name and date of birth
- ALS diagnosis
- Current medications
- Ventilator settings (if applicable)
- Allergies
- Primary physician contact
- Emergency contact person
Keep this document:
- Near the bedside
- In the emergency “Go-Bag”
- Saved digitally if possible
Power Outage Preparation
If ventilator or medical equipment depends on electricity, planning for power loss is critical.
Prepare by:
- Keeping backup batteries charged
- Knowing how long battery power will last
- Having a manual resuscitation bag available
- Contacting the local power company to register as a medical priority household (if available in your area)
- Considering a generator if medically recommended
If power fails and breathing support is affected, call emergency services immediately.
Ventilator and Airway Emergencies
If the individual uses a ventilator or tracheostomy, caregivers should be prepared for:
- Ventilator malfunction
- Tubing disconnections
- Oxygen level drops
- Tracheostomy tube displacement
Keep emergency supplies nearby at all times:
- Manual Ambu bag
- Backup tracheostomy tube
- Portable suction machine
- Extra trach ties and dressings
Review emergency procedures regularly so they become familiar.
When to Call 911
Call emergency services immediately if:
- Breathing cannot be supported
- The tracheostomy tube cannot be reinserted
- Oxygen levels remain dangerously low
- The individual becomes unresponsive
- Severe choking occurs
When calling 911, clearly state:
“This is a patient with ALS who relies on respiratory support.”
Clear communication helps responders understand the urgency.
Hospital Preparation
If transport to the hospital is necessary:
- Bring the emergency information sheet
- Bring communication devices if used
- Bring ventilator equipment if required and safe to transport
- Bring advance directives or medical orders (if applicable)
Keep copies of important documents ready.
Advance Care Planning
Discussing preferences ahead of time can reduce uncertainty during medical emergencies.
Topics to consider:
- Hospitalization preferences
- Mechanical ventilation decisions
- Resuscitation preferences
- Hospice or palliative care involvement
These conversations should be guided by medical professionals and documented clearly.
Emotional Preparation
Emergencies are stressful. Caregivers may feel fear, guilt, or uncertainty.
Preparation does not remove all anxiety, but it helps create a sense of control.
Reviewing emergency steps periodically can build confidence.
You do not have to handle everything alone. Lean on medical teams, family members, and support networks.
A Word to Caregivers
No caregiver ever hopes to use an emergency plan. But having one in place can bring peace of mind.
Preparation is not pessimism — it is protection.
You are doing the difficult work of caring for someone you love. Planning ahead is one more way you provide safety and comfort.
And even in urgent moments, you are not alone.
