u/Electrical_Seaweed84

▲ 24 r/ALS

PALs is choosing to withdraw medical care.

PALS has decided to withdraw care. They are on ventilator support and have required 24/7 care since their diagnosis several years ago. The ALS has progressed to the point they cannot move without assistance, and they feel their quality of life is no longer satisfactory.

I don't know how to stop being a caregiver after so many years of 24/7 intensive care, but I am also completely burnt out and exhausted. I feel like I am in free fall and trying to deal with all of the emotions.

My loved one is choosing not to make any end-of-life plans beyond withdrawing medical care, so I don't know what to do next. We don't have children; family on both sides are minimally involved in the day-to-day decisions. I don't have much in the way of a support system.

How does one cope during this transition?

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u/Electrical_Seaweed84 — 2 days ago