Mom with ALS on hospice and beginning VSED—struggling with wakefulness despite medications
My mom has ALS and is currently on hospice. Yesterday she began VSED (voluntarily stopping eating and drinking), which was her decision after a long and difficult journey with this disease (going on 6 years). Of note, does not use any assistive devices, such as feeding tube, bipap, etc. She has refused those throughout her entire journey.
This past Monday, the hospice nurses increased her medications to 2 mg of hydromorphone and 2 mg of lorazepam every 4 hours. Last night into this morning, we noticed her breathing becoming more labored, so under hospice guidance we've increased it to 4 mg of hydromorphone and 2 mg of lorazepam every 2 hours.
One of her biggest wishes has always been to be kept asleep and comfortable so she can pass away peacefully. She is definitely sleeping much more than she was before, but what has been difficult is that when she does wake up, usually every 2 hours when we need to administer meds, she's often very confused and hallucinating. She'll ask me questions that don't make sense and often believes she's doing something that isn't the case (such as envisioning herself preparing me dinner). When I respond to her, she knows who I am and is conversational, though still often hallucinating. The hallucinations have increased over the past few days, and she has become less and less in touch with reality.
I'm really struggling with this because I don't want her to be in any distress. Every time she wakes up and starts talking, even if she's mostly hallucinating, I become anxious that we're somehow not doing enough to honor her wishes to remain asleep and comfortable. I keep wondering if she's suffering or aware of what's happening.
I guess my questions are:
- Is it normal for someone to still have periods of wakefulness even with these medications?
- Why might the medications not keep her asleep continuously?
- For those who have cared for someone with ALS or been through the end-of-life process with hospice, what was your experience like in the final days? Was confusion or hallucinating common? And, how long did this period last?
I know everyone's experience is different, but hearing from others who have been through this would really help. More than anything, I just want to make sure she's comfortable, not in pain, and that we're honoring the peaceful passing she wanted.
Thank you to anyone willing to share your experience or offer some reassurance.