Starting the Hard Conversations Around ALS
If you’re not sure where to start, we’ve developed a few guides that we hope will be helpful to you and your loved ones
“As we’ve gone through the disease progressing for us and things getting harder, more and more we have come to understand how important it is to take the time to have these conversations and to be thoughtful about the decisions. And to learn and understand what the latest technology makes available and how it impacts what decision each of us want to make.” – Sandra Abrevaya, ALS caregiver and I AM ALS co-founder
ALS is a disease that comes at you fast and hard. It hits you with a new, surreal reality seconds after you’re given an official diagnosis of ALS and told you likely have no more than 2-5 years to live. It leads to an overwhelming amount of thoughts, feelings, and anger. It also, in our case, leads to a desire to stay in the present moment and defer thinking about the further stages of ALS until they are undeniable. Despite this, what we’ve found through talking with many other people living with ALS and their loving caregivers is that it is important to start having those tough conversations around what I may need in the later stage of ALS early on. They don’t have to be the day or even week after you’re diagnosed but having these conversations with your loved ones and doctors sooner rather than later will help you understand the technologies available to you and how they can improve your quality of life and health outcomes.
You might find these helpful:
This resource shares more about feeding tubes and nutrition and is a collection of educational resources from across the ALS community.
The Death Deck
This is a card game that encourages conversations about death and dying with family and friends.