Do you know anybody who did VSED (voluntary stop eating & drinking)

[spirituALS]

Hello,

I am a CALS--my mother was diagnosed with ALS about 6 weeks ago. She has limb-onset ALS and no longer has the use of her arms. Her legs are getting weaker, so they will go next. Her breathing /swallowing is great. Her respiratory therapist said her respiratory function was "off the charts". For my mother, this was awful news. Given that my mother can't do anything for herself (we feed her, bathe her, etc.), she has expressed that she "cannot live like this anymore."

She is very serious about wanting to voluntarily stop eating & drinking. My sisters and I do not want her to do this, but I also understand that we don't have this disease and can't truly understand how awful this is for her. We've asked her to wait a few days before making her final decision (she is ready to start immediately) because I wanted to contact hospice care and just get any help I can with what to do in this situation.

Do any of you have experience with somebody who has gone this route?

Thank you!

 

[lgelb]

Very sorry to hear about your mom.

Many PALS at some point reduce/stop eating/drinking for many reasons, gradually. If they don't have a feeding tube, or sometimes even if they do, it can become too exhausting, they lack energy overall, it takes all their energy to breathe, they don't care to go on, etc.

It is somewhat less common for PALS to choose VSED before respiratory insufficiency sets in, but it is a choice that we would be less likely to hear about here, so I can't say how common it is.

You will want to discuss it further as 6 weeks past diagnosis is not a long time for the reality to sink in and be processed, even if ALS was suspected before that. I am not saying she will change her mind, but her thinking may evolve.

Compassion & Choices has done a good VSED summary, which I have attached, and they could also be a resource for you and whatever hospice agency your mom selects. In selecting a hospice agency, I would certainly make them aware that VSED is on the table, as not all agencies are prepared to support it.

Best,
Laurie

 

[azgirl]

I was ready to make all kinds of end it all rash decisions just after diagnosis. So glad I held off because I found a way to find joy in living in spite of this dam disease.

maybe your mom will too if she gives it more time. If not I would get hospice involved to help with a more peaceful passing. Dying of starvation and dehydration seems like a slow painful process.

the first months are the hardest as new reality set in. So sorry you are going through this

 

[Inventor]

HappyPhysicist (Ben Harris) did it a few years back. His last contribution to the ALSTDI forum was to warn others from choosing that way to go.

 

[spirituALS]

Thanks, all. I am going to look for HappyPhyicist's posts regarding his experience. And thanks for the Compassion & Choices information. I have reached out to hospice and they are working with us the best they can. She's not eligible for hospice care at this point given that she's still mobile and her respiratory function is still very high. It's sad for me that she is choosing this route, so I'm walking a fine line between wanting to support her, but wanting her to choose to live.

 

[spirituALS]

I just wanted to follow up on this given that my mother passed away yesterday afternoon. And I wanted to write about her experience as best I could.

I believe my first post was on 3/20 when my mother had decided that she wanted to go the VRED route. We immediately called hospice (she was not currently in hospice care) and they came to the house to evaluate her on 3/21. They felt that her breathing and swallowing were significantly worse than when they first evaluated her (on 3/2) and given that she had no ability to use her arms and limited ability to walk, they admitted her into hospice care and were supportive of her decision to VRED when that time came.

My mother spent the next week figuring out a plan. Her speech was getting worse rapidly during this time and she wanted to chance to say goodbye to all of her family and friends. We made sure she ate all of her favorite foods (my mother lives in the midwest, but I live in New England and I had her favorite lobster rolls and clam chowder shipped in from Maine), we shared all of our favorite memories and laughed many, many times. There were tears as well, but many more laughs. My mother said that with her limited energy, she would much rather laugh than cry.

We had organized that my mother would stop eating on Sunday, April 1st (Easter). We worked with hospice to make sure all the medications she would need were in place. We tapered her off of her daily meds. She ended up having breakfast that morning, but then stopped eating and drinking.

She was slightly weaker by Sunday night by Monday she was having a very difficult time talking. Still, she was in very good spirits. In fact on Monday evening my sisters and I were laughing so hard sharing stories with my mother that we all worried mom was going to pass out from lack of oxygen! I will always remember how hard we all laughed that night.

By Tuesday Mom was in pain from cramping (something that had been happening consistently throughout her battle with ALS, but I'm sure was made worse by the dehydration). At that point we decided to use the "strong" drugs (hydromorphone) and that relieved any pain she was feeling. She was still in good spirits, but with the dehydration and strong drugs, she was very tired. She did go outside for the last time, then started to slip in and out of consciousness that afternoon (about 48 hours after stopping eating and drinking).

Around 2am on Wednesday morning (4/4) she lost cosciousness and never regained it. She held on until the afternoon and eventually passed away peacefully in her own home surrounded by the love of her children, approximately 3 days after she stopped eating and drinking.

I know everybody's experiences are different, but I was surprised at how quickly she passed. And I was very, very relieved that she did not suffer. While I had a very hard time accepting her decision in the beginning, I completely understand why she made the choice that she did. And while I am grateful for every minute that I had with her, I am proud of her for ending her life on her terms because that is what she wanted.

Thinking of all of you...this battle is so incredibly difficult and i think you are all brave souls to face it on a daily basis. As a CALS, I can say that the disease definitely takes a toll (clearly the biggest toll is on the person battling it), but your family and friends are there for you. They love you. And they want to help.

 

[Nikki J]

Thank you for sharing. I am going to copy your last post to In Memoriam. Members please express condolences on the new thread https://www.alsforums.com/forum/memoriam-memory/41190-spiritualsa-s-mother.html

Contrary to usual practice I will leave this thread open so anyone who wishes may address the main topic

 

[affected]

Thank you so much for sharing this. I found the description of the methods helpful and the way your family could rally together and laugh together, celebrating life was beautiful.

I hope you all find peace quickly, she did this on her terms and that is something you can always know in your hearts. I'm so glad hospice supported her and you all so well.

 

[azgirl]

thank you for sharing your story. As a pals it has given me great comfort from the beginning to know there is a relatively peaceful way out if this beast becomes too difficult to handle.

you have helped many by sharing.

 

[KarenNWendyn]

I also appreciate your candor and sharing. It’s nice to know that this exit strategy can be peaceful, and I’m glad it was for your family.

 

[Lkaibel]

My husband has basically decided to go the VRED route when the time comes, and furthermore he is losing his legs/arms/hands but still breathing, swallowing, talking normally nearly two years post Dx. This was good to read. We meet with Hospice Saturday. I expect it will be awhile yet, but reading this made me feel much better. I realize our mileage may vary, but still comforting. I am very, very sorry about your mom.

 

[affected]

Another thought about how important this post is for PALS is that I have heard some very strong comments made about how absolutely horrible it is to die this way - but you have described so clearly how untrue this is IF it is well managed by hospice, and if the family give such wonderful support.

I suspect all the hours of laughter were one of the most important elements.

 

[KarenNWendyn]

Something that strikes me is just how many valid exit strategies exist.

I have always been in favor of having options and going out on one’s own terms. For my eventual exit, I picture something on the spectrum of hospice/ death with dignity/ VRED/ lots of Morphine. Others may want to go down fighting until every last cell has given up, going for trache/ vent and whatever other means they can muster to keep up the fight.

I think most (maybe all) of us would want to pass quietly in our sleep, having said our goodbyes and after getting all our affairs in order. Though we may not always have a say, it’s comforting to have options which can hopefully guide our process in a direction of our choosing.

 

[wishmobbing]

Thank you so much for sharing. In supporting your mom's decision you also choose her living on her terms, rather than dying under the control of the beast. I'm so glad you got to share the time together knowing how important that time is.

 

[Lkaibel]

As Tillie Said going this way has a bad rap because it is not properly managed, and sometimes even undertaken with little to no medical support which I can’t even imagine.