Old 09-16-2018, 08:50 AM #1 (permalink)
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Default Similar stories

Hi everyone, thanks for taking the time to read.

I posted a couple weeks ago about my mom who is progressing rapidly.

She is continuing to progress after her diagnosis on August 24. Most of her words are not audible now and she is getting weaker with transfers from bed to chair etc and is now only eating pudding textured foods.
She spends more time napping on her bipap during the day.

She had been prescribed Rilutek after the diagnosis and the dr talked to her about a feeding tube.

She had felt in her current state she didnít want to slow things down and felt she couldnít handle the gtube insertion.

Iím struggling with the fact that I didnít press her to agree to the feeding tube. We have moved into hospice to help keep her comfortable and to have help with her care so I can spend more time being her daughter and less time being her nurse.

Iím wondering if anyone has made the same types of decisions to not have any interventions or try to slow things down. We are trying to focus on quality of time instead of quantity but I canít help feeling sad that we didnít give it a big fight.

Any thoughts would be so appreciated!
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Old 09-16-2018, 03:02 PM #2 (permalink)
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Default Re: Similar stories

I'm very sorry to hear things are so hard with such rapid progression.
The gtube really doesn't slow things down, especially with rapid progression.
It can really increase quality of life when swallowing is poor.

ALS is terminal, and rapid progression really does a number on your head because you don't get to assimilate anything, you just run to keep up.

You would not have saved her with a gtube. I need you to try and really understand this next point, it is important. You cannot know that any choices you may have made differently would have had a positive impact on her. Truly. You can surmise if only you had done this or that things would have been better for her, but you can't know that. Any choice could have resulted in her progressing faster, or resulted in some unexpected issue.

Let all that go and spend your time with her now and give her a peaceful passing filled with love. THAT is something you can do, when this disease takes so many choices from us xxx
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Old 09-16-2018, 04:00 PM #3 (permalink)
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Default Re: Similar stories

You are doing right by your mom, who has chosen what she feels is best. As you say, the most precious resource you have is time as mother/daughter at this point.

My husband opted out of a tube as well, and died while on a limited diet. He was medically complex and pursuing the tube would have been arduous. I did/do not regret that choice.

Don't feel sad that you didn't throw the kitchen sink in. The time you are spending on being together means so much to her. As Tillie says, the tube wouldn't save her and she is going out on her own terms -- the last gift we can give.

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Old 09-16-2018, 04:04 PM #4 (permalink)
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You both have no idea how those responses have made me feel and how much they have eased my worried heart. Thank you!
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Old 09-17-2018, 10:06 AM #5 (permalink)
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Default Re: Similar stories

KM, my PALS, wife Krissy, was a medical doctor of 20 years. She had, with me, two teens. When she was diagnosed with ALS, she immediately knew she did not want to live with tubes. She had seen plenty of death, understood ALS, and did not want to extend a life being totally paralyzed staring at the ceiling. She put it in writing.


She told us that whenever she had air hunger, we were not to give her increased air or oxygen--instead, we were to give her morphine. The morphine would remove the air hunger, and take away any fear or pain.


That's what we did.


She progressed rapidly, from first symptom to total paralysis in 9 months. One morning, her eyes were also paralyzed, and she could not even blink to answer yes or no. She died that evening. Thankfully. She did not want to live in that state.


She had accepted no tubes, no feeding tubes, no invasive venting, not even an IV for hydration. She did accept a catheter to make it easier for us when she peed.


Those 9 months were very good. For awhile, she attended soccer games and award ceremonies for our kids in school. We went out to dinner often, where we took turns feeding her and she enjoyed it quite a bit. Of course, near the end, she was confined to a hospital bed which we kept in our living room so she was always in the center of family activity. I kept all the medical equipment behind her, out of her sight, so it appeared normal and homey to her.


Other PALS will decide differently. Some, totally paralyzed but still able to communicate, have told us they have a better quality of life than you might think. Some people, however, have really felt harmed, both emotionally and financially, by a PALS who insists on life support for years.


My advice to CALS is to think of being in the PALS position. They are adults facing the big reality that no one wants to face. Quite brave. Whatever they decide, in my opinion, is the final word. In my opinion, even if we disagree, even if we "know better," we should support the PALS 100 percent with a smile. After all, if I were dying and someone, anyone, were to second guess my decisions, I would be really, really p$$$$d!


ALS takes away a person's choices. You can't choose to go out for the evening. You can't even choose to scratch your butt. So I think we should wholeheartedly support PALS for whatever they want, for the rest of their brave lives.


Just my thoughts. Others will differ. Your mileage may vary.
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Old 09-17-2018, 10:56 AM #6 (permalink)
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Thank you so much for your reassuring words and for sharing your story with me. This is the most difficult path I have ever walked and I’m questioning myself every step. I just want her to be comfortable and able to rest.
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Old 09-17-2018, 01:06 PM #7 (permalink)
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You certainly did the right-however difficult- thing in choosing to accompagny her along the road in the way she feels best for her. Doing what you can to be her daughter rather than her nurse makes perfect sense. Time is now so precious. It is all about love and comfort.
Glad you find comfort in the answers.
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Old Yesterday, 06:39 PM #8 (permalink)
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Default Re: Similar stories

All good posts. Just want to add my word of support: You're doing the right thing and I'm glad you're supporting your mom and her wishes.
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