End-of-Life options for 55 Year Old husband with early onset? Legal planning.

Hello,

My 55yo husband is in the early stages of early-onset Alzheimer's. We have three children, a 21yo daughter with autism who cannot live independently and is not able to work, an 18yo son who is about to graduate HS and head overseas for a year-long travel before heading to college, and an 11yo daughter who will begin middle school in the fall.

My husband and I will see an elder law attorney in early April and we're having many intense discussions about how to protect our kids and ourselves from the worst possible outcomes. My husband says he is absolutely resolved to not waste away and have the rest of us watch him disappear slowly, draining the last of our money for memory care facilities in the process. He says his wish is to actually SAY GOODBYE to our kids and die with dignity before his brain is too far gone for him to make the decision to follow through with such a plan. This is extremely difficult, obviously, but I agree. I want our kids to remember him with his personality and humor intact.

In our state there is an End-of-Life Options Act which gives people with terminal conditions the agency to choose where and when they will end their life. Unfortunately, this option does not exist for patients with dementia. (!!!) I don't understand why detailed legal documents that state explicit wishes cannot be created while a person IS cognitively sound.

We found this article which explores Voluntarily Stopping Eating and Drinking (VSED) and puts into perspective all the things to consider around end of life: https://www.thegooddeathsocietyblog.net/2022/01/16/the-shell-game-is-deadly-serious-and-fraught-with-room-for-mistakes/ And this may be my husband's best option.

We can't be the first people to come up against this. I would really appreciate the perspective of caregivers who have lived through raising an adolescent/teenage child while also caring for their parent who is disappearing due to dementia. Or, if anyone is willing to share their story of a loved one dying on their own terms with dignity, I would be so grateful to hear and understand that option better.

thanks for anything you can share!

Molly