End is near I think

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JennyC

Distinguished member
Joined
May 3, 2016
Messages
232
Reason
Loved one DX
Diagnosis
04/2016
Country
US
State
NY
City
Queensbury
I think the end is near. My mom who was just diagnosed in April after having symptoms since November is starting to have trouble with her speech, she has made it clear that she will die by her own hand not by the disease and that once she can't communicate on her own (not via a machine) she doesn' t want to be here anymore. She sent me an email this morning asking me to think of ways that she can leave personal messages for people. I'm thinking that she is preparing to go.
 
Jenny, I am so sorry. I just don't know what to say.
Becky
 
Thanks Becky. I just straight out asked her if she was preparing to go and that I wasn't upset if she was that I supported her decision if thats what she chose, I just asked for some notice....so weird...anyway, she said not in the super near future but she does want to start getting things done because she isn't sure how much longer she will be able to speak.
 
What a strong woman!
 
Jenny it's not uncommon for them to keep moving the mark. What feels unbearable today may not be so bad once you get there. Just be prepared for that.
 
Hugs Jenny, this next short while will be tough, and as others have said, it may be later, rather than sooner.

Sue
 
Sending hugs your way Jenny. This disease sucks and I hope you still have many more days with your mom.

-Nikki
 
HI Jenny, first off I'm so sorry that your all going through this terrible journey. My story sounds like your as my brother says he will choose when he's done, not ALS. He never plans on using a wheel chair. I'm hoping he "keeps moving the mark" as Tillie says but ultimately it's his decision. I've felt the same way you do. He's disconnecting and preparing. Very sad all around. Hang in there Becky. All we can do is be there for them. I'll be thinking of you. Jamie
 
Yeah thats what I'm thinking. I think that in theory she is sure she can do it, I think when it become more of a reality she may not decide to do it. Either way I am okay with it, whatever she wants. It just makes me sad that the death with dignity act isn't in our state yet although it is in the works, so if she did decide to end it she would be alone, we couldn't be with her
 
so if she did decide to end it she would be alone, we couldn't be with her

I would suggest that getting her onto hospice may be the best thing for her. They can discuss her wishes, where she draws the line, and if she chooses to stop nutrition and fluids they can give her meds, allow you to be with her, and let her take a dignified palliative end, rather than a suicide.

Our palliative team were fantastic, and when Chris said no more hospitals, and went on that final slide he had a beautiful death, at home with me.

Maybe encourage her, when she brings it up, to think about having a beautiful end with palliative assistance?
 
I would strongly recommend Hospice. They will help your mom pass comfortably when the time comes and with dignity. My dad declined extremely quick so we only had them for less then 24 hours. But, they were fantastic in controlling his pain and also helping my family.
The hospice worker told me something I didn't know. I so wanted to hold my dad's hand at the end. But, his hands were so curved under that I figured I couldn't. But, our Hospice worker said that sometimes the muscles relax at the end and you can straighten them. So, we tried and we were able to uncurl dad's hand without causing him any pain at all. I was able to hold his hand for two hours then before he took his last breath. It gave me comfort to be able to do that. I will be forever grateful to that nurse for telling me that. Kim
 
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My mom wants to die once she stops being able to speak , she is unwilling to let the disease take is natural course
 
My dad died within 24 hrs after losing his voice. But, he had the limb onset. He used no bi-pad, feeding tube, or any thing prior. He just all the sudden couldn't swallow or talk anymore and then the breathing went. It was very-very fast with him at the end. But, everyone is so different. A big hug to you. Dad said he never wanted a feeding tube or any other devices. I think he was about to change his mind at the very end about a possible feeding tube. But, then at the end he didn't get the chance to make that decision. Your mom might waver back in forth on her actual decision once it gets too that point. Hugs to you, Kim
 
Kim, my mom was limb onset too
 
Jenny,
If you and your mom want to be together when she dies, don't let the lack of a DwD law stop you. I know of no such litigated cases in an "act of omission" context. Either way, make sure she has an advance directive and that the doc who would be signing the death certificate is aware of her condition.

Best,
Laurie
 
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