Care needs

It’s important to understand that if you choose to use 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. You’ll need multiple caregivers to do complex tasks like changing your trach tube, suctioning your lungs, and troubleshooting problems with your ventilator.

If your loved ones are able to help with your care, they can get training to learn how to do these tasks. Training may vary depending on where you live and where you get health care.

Many people living with ALS who use a trach hire at least one professional caregiver. Unfortunately, insurance typically does not cover the cost of professional caregivers or pay loved ones to provide care. For suggestions on where to find reliable caregivers in your area, reach out to your ALS care team.

Some people choose to move to a skilled nursing facility for additional support. Keep in mind that these facilities are very expensive and aren’t available in every region. However, if you are able to find a facility that meets your needs, you can receive 24/7 care from trained medical professionals. Before moving to a facility, it’s important to make sure they have care providers who are qualified to care for people living with ALS who use a trach and IMV.  

Because you’ll need caregiving support to use a trach and IMV, it’s a good idea to talk to your loved ones as you are thinking through your options. It’s important for your loved ones to understand how much support you will need and what types of care tasks are involved. You may want to ask family members about their availability or discuss options like hiring a caregiver or moving to a skilled nursing facility.   

While this topic can be difficult to talk about, making sure everyone is on the same page now can help to prevent misunderstandings and other challenges down the road. You can use this module to start the conversation. This way, if you choose to use a trach and IMV, everyone will understand what to expect, and you can make a plan to get the support you need.