Old 06-30-2016, 12:02 PM #1 (permalink)
JennyC's Avatar
Member
 
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
JennyC JennyC is offline
Member
JennyC's Avatar
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
Default End is near I think

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.
JennyC is offline  
Old 06-30-2016, 01:48 PM #2 (permalink)
Nuts's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,379
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,379
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: End is near I think

Jenny, I am so sorry. I just don't know what to say.
Becky
Nuts is offline  
Old 06-30-2016, 01:51 PM #3 (permalink)
JennyC's Avatar
Member
 
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
JennyC JennyC is offline
Member
JennyC's Avatar
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
Default Re: End is near I think

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.
JennyC is offline  
Old 06-30-2016, 01:53 PM #4 (permalink)
Nuts's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,379
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,379
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: End is near I think

What a strong woman!
Nuts is offline  
Old 06-30-2016, 03:06 PM #5 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,540
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,540
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: End is near I think

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.
affected is offline  
Old 06-30-2016, 05:18 PM #6 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,506
Narrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud of
Narrowminded Narrowminded is online now
Very Helpful Member
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,506
Narrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud of
Default Re: End is near I think

Hugs Jenny, this next short while will be tough, and as others have said, it may be later, rather than sooner.

Sue
Narrowminded is online now  
Old 06-30-2016, 10:26 PM #7 (permalink)
New Member
 
Join Date: 2016
City: Holly Springs
State: North Carolina
Country: Uni
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 81
njk0407 is on a distinguished road
njk0407 njk0407 is offline
New Member
Join Date: 2016
City: Holly Springs
State: North Carolina
Country: Uni
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 81
njk0407 is on a distinguished road
Default Re: End is near I think

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

-Nikki
njk0407 is offline  
Old 07-01-2016, 04:27 AM #8 (permalink)
Member
 
Join Date: 2016
City: Wolfeboro
State: NH
Country: US
Diagnosed: 12/2015
Interest: I lost a loved one to ALS/MND.
Posts: 276
Jlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the rough
Jlynn Jlynn is offline
Member
Join Date: 2016
City: Wolfeboro
State: NH
Country: US
Diagnosed: 12/2015
Interest: I lost a loved one to ALS/MND.
Posts: 276
Jlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the rough
Default Re: End is near I think

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
Jlynn is offline  
Old 07-01-2016, 04:08 PM #9 (permalink)
JennyC's Avatar
Member
 
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
JennyC JennyC is offline
Member
JennyC's Avatar
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
Default Re: End is near I think

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
JennyC is offline  
Old 07-02-2016, 01:39 AM #10 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,540
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,540
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: End is near I think

Quote:
Originally Posted by JennyC View Post
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?
affected is offline  
Old 07-02-2016, 12:52 PM #11 (permalink)
skipper66's Avatar
Very Helpful Member
 
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,477
skipper66 is on a very distinguished road
skipper66 skipper66 is offline
Very Helpful Member
skipper66's Avatar
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,477
skipper66 is on a very distinguished road
Default Re: End is near I think

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

Last edited by skipper66 : 07-02-2016 at 12:58 PM
skipper66 is offline  
Old 07-02-2016, 03:13 PM #12 (permalink)
JennyC's Avatar
Member
 
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
JennyC JennyC is offline
Member
JennyC's Avatar
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
Default Re: End is near I think

My mom wants to die once she stops being able to speak , she is unwilling to let the disease take is natural course
JennyC is offline  
Old 07-02-2016, 03:22 PM #13 (permalink)
skipper66's Avatar
Very Helpful Member
 
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,477
skipper66 is on a very distinguished road
skipper66 skipper66 is offline
Very Helpful Member
skipper66's Avatar
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,477
skipper66 is on a very distinguished road
Default Re: End is near I think

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
skipper66 is offline  
Old 07-04-2016, 02:34 PM #14 (permalink)
JennyC's Avatar
Member
 
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
JennyC JennyC is offline
Member
JennyC's Avatar
Join Date: 2016
City: Queensbury
State: NY
Country: US
Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 232
JennyC is on a very distinguished road
Default Re: End is near I think

Kim, my mom was limb onset too
JennyC is offline  
Old 07-04-2016, 04:07 PM #15 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,665
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,665
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: End is near I think

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
lgelb is offline  
Closed Thread

Tags
diagnosed, speech, symptoms


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 11:53 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016