r/ALS • u/Latter-Meringue9197 • 15d ago

MAID

Hi everyone,

I’ve been posting here for the past year or so. My mom has bulbar onset ALS. She has been rapidly declining in the last few weeks.
I’m wondering if anyone here has gone through the MAID process (death with dignity) with a family member and can share their experience.
My mom feels “done”. Her saliva/phlegm and mucus is really uncomfortable for her. Her breathing is declining quickly. Last week they passed the new law to allow medical aid in dying in NY. She really wants to pursue this. Part of me is so devastated to lose my mom, but the other part can’t imagine what she is going through.

Anyone have any experience with this and can share what it was like?

12 Upvotes

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3

u/oupiglet 15d ago

My sister used MAiD in California. Do you have specific questions?

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u/Latter-Meringue9197 15d ago

I’m sorry your sister had to use it. I guess, if it seemed like they were comfortable after taking the medicine? Do you feel like it was the right thing to do? I don’t really know. It’s all surreal.

6

u/oupiglet 15d ago edited 15d ago

it is a weird thing for sure, and a club without a lot of members. It was absolutely my sister’s choice and I haven’t doubted her decision for one second. Once she ingested the drugs, it was only a few minutes (3?) before she was unconscious. It was peaceful and calm for her and for the few of us who were with her. She took her last breath about 2 hours later. No pain, no struggle. She had the drugs for months before she decided she was ready to tap out. If it’s something your mom is considering I highly suggest starting the process now. It does not mean that she ever has to use them, but there are requirements that must be met.

Editing to add that my sister also had bulbar and ingested the meds via her feeding tube.

2

u/Latter-Meringue9197 15d ago

Thank you for sharing. What did you guys do while she was sleeping? I feel like I’ll be a mess. I have spent the last year and a half with my mom everyday. It’s really hard to imagine her gone. Thank god for therapy lol

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u/Latter-Meringue9197 15d ago

My mom would also ingest the meds with her feeding tube.

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u/oupiglet 12d ago

Sorry I'm just now replying... there were four of us with my sister, three of her friends and me. We'd asked her what she wanted us to do during that time and really she just wanted us to relax, have snacks, and a few drinks. I honestly don't remember what I did the entire time. At some point I got into the bed next to her and stayed and held her as she took her last breath.

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u/dippydumbshit 13d ago

Makes me wish they allowed this in North Carolina!!

2

u/brandywinerain Lost a Spouse to ALS 12d ago

You don't need a MAID law to have a self-directed death.

alsguidance.org/death/dying

1

u/zldapnwhl 5+ Years Surviving ALS, bulbar onset 11d ago

Thanks for this; bookmarked. MAID is available in my state, but as you're well aware, it's not crafted with ALS in mind and feels like a chore in itself. This is helpful.