Downside: Significant care needs

If you choose to get a trach and IMV, you’ll need a lot of caregiver support. While everyone’s experience is different, in general, you will need someone to help you 24 hours a day.

Your loved ones can get training to learn how to manage your care. However, many people choose to hire at least one professional caregiver, and others choose to move to a skilled nursing facility for additional support. Unfortunately, insurance typically does not cover the cost of caregiving services.  

Many people living with ALS find it helpful to talk through this decision with their loved ones. Let your loved ones know how much caregiving support you will need and what types of care tasks are involved. You may want to ask about their availability or discuss options like hiring a caregiver or moving to a skilled nursing facility. You can use this module to start the conversation with the people you love. Together, you can make a plan to get the support you need.