Old 04-05-2018, 08:54 AM #1 (permalink)
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Default SpirituALS’s Mother

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.
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Old 04-05-2018, 09:36 AM #2 (permalink)
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Default re: SpirituALS’s Mother

I am very sorry for your loss. Thank you for supporting your mother and making her last days and her passing what she wanted.

I hope you are comforted by your memories as she flies free
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Old 04-05-2018, 09:40 AM #3 (permalink)
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I am so sorry for your loss of your mother. You and your family are in my thoughts and prayers.

Thank you for letting us know how peaceful her passing was.

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Old 04-05-2018, 09:43 AM #4 (permalink)
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I’m sorry for the loss of your mom. I’m glad she was able to go on her terms with much grace and peace.
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Old 04-05-2018, 09:54 AM #5 (permalink)
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Default Re: SpirituALS’s Mother

Sorry for your loss. Echoing Karen's post above.

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Old 04-05-2018, 12:45 PM #6 (permalink)
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Default Re: SpirituALS’s Mother

Thank you for the update -- sorry for your loss, but happy to hear that your mom had the best possible passage. It sounds like all of you did a great job making that happen. ALS confers many losses, but the ability to plan one's own exit strategy should not be one of them. Much peace and strength to you and your family.

Best,
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Old 04-05-2018, 01:02 PM #7 (permalink)
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I am deeply moved by your story. What a beautiful thing you did for your mother by honoring her wishes even though it was so painful for you.

the vision of all of you sharing stories and heartfelt laughs is so beautiful and comforting.

sounds like you are an amazing daughter and your mother was a special woman.

wishing you peace and love
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Old 04-05-2018, 01:36 PM #8 (permalink)
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I am so very sorry for your loss. Thank you for sharing this with us, you have all done your mother proud. xxx
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Old 04-05-2018, 02:19 PM #9 (permalink)
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Oh my, I'm so very sorry for your loss, but so incredibly glad that your mum passed on her terms, surrounded by so much love. My deepest condolences.
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Old 04-05-2018, 07:14 PM #10 (permalink)
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You mom is my hero! As is your whole family. Laughing is indeed a better investment than tears but after she's gone there will be shed quite a few.

I'm very sorry for your loss. When you miss her most tell us or anybody stories of her that will crack us up and she'll be alive again.
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Old 04-05-2018, 07:18 PM #11 (permalink)
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Thank you for sharing your beautiful story.

Sending good love your way
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Old 04-05-2018, 07:43 PM #12 (permalink)
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So sorry for your loss. The end of her journey sounds very peaceful.
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Old 04-06-2018, 11:59 AM #13 (permalink)
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Thank you for sharing your beautiful story. Brought tears to my eyes. I wish such a beautiful passing on every PALS here. Sounds like your a mom was one lucky lady to have such a family.
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Old 04-07-2018, 01:19 AM #14 (permalink)
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I am so glad your mother had you by her side and together you were able to make her wishes regarding her last days possible and as anguish free as possible. I am so sorry for your loss.
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Old 04-14-2018, 08:48 PM #15 (permalink)
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Thank you for sharing such an intimate part of your family's experience. May she rest in peace.
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