"End Stage MS"

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Luongo
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Post by Luongo » Thu Mar 19, 2015 8:15 am

That is truly horrific... I'm so sorry. I can't even pretend to be arrogant enough to think I have words could help heal these emotional wounds, but my prayers and thoughts are yours.

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lyndacarol
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Post by lyndacarol » Thu Mar 19, 2015 9:48 am

Thank you for sharing the sad news with us, pb87. There are no words adequate to express our sympathy for you and your family. May you find comfort in the memories of your father. He was not only a physically big man to you, as a child; but he showed great courage.

My prayers for strength and peace are with you.

leesuh
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Post by leesuh » Tue Aug 11, 2015 12:02 pm

reading this has helped, even though it was a few years ago some of you were dealing with it. you're all right, end stage MS is not something that is talked about much. My mom was diagnosed in 1970, she's currently 70 (yes, she's had it for 45 years). since oct 2013 she's been in and out of the hospitals (sometimes once a month) with aspiration pneumonia and UTIs, septic shock, MRSA, etc. it's been hell. she has a feeding tube now. her primary suggested stopping her copaxone to allow her body to fight the infections. so now, the MS is advancing quickly, and in the last few weeks, has hit her cognitively. she never wanted to be in a body that she couldn't communicate with, interact with us, etc. until just recently, (except when the infections took over) she was "herself" and completely coherent. this is new territory for myself (only child) and my dad, and my husband and 2 young children. we assumed that at some point the infections would keep coming, and we'd call hospice- more clear of a need for the end (she's a DNR). but when her body is infection free, and just affecting her cognitively, there's not an option for us. physically she can do nothing herself, is incontinent, etc. she's on so many meds for her heart, BP, prednisone, etc. i'm not even sure what i'm asking, if anything. i don't know anyone in real life who has been through what we have- people compare it to cancer, but it's nothing like cancer. it's like she's already gone, but she's still here, if that makes sense. we've said goodbye several times since her first hospitalization in 2013, but each time there's been hope of her bouncing back to some level. i guess the hardest part about the cognitive demise is that hope is changed. through all this the one thing i'm thankful for is she has always made her wishes known to us- and after each hospitalization we re-visit her wishes, and talk about stuff. doesn't make any of this easier on the heart though :cry:

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Moom9335
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Re: end stage MS

Post by Moom9335 » Tue Aug 11, 2015 12:25 pm

Leesuh,
Depending on your family's wishes and the state in which you live, your Mom can be brought home.
Hospice can come in and keep her comfortable, pain free. Hospice does not come just if people are dying, but
incapacitated and in degenerative condition.
Speaking with a social worker may help clarify your family choice.
In the end, it is all up to you.
I did it for my son.
It was his wish not to end up in a nursing home or hospital in constant decline.
My heart goes out to all of you.
Love is wonderful and painful all at the same time.
May you find comfort and peace, for all of you.

leesuh
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Post by leesuh » Tue Aug 11, 2015 3:37 pm

thank you, Moom9335. thankfully my mom is home right now, and has been for 6 weeks (the longest without a hospitalization in over a year!) we've been trying to accept over the last year + to take it a day at a time (like with most MS stuff) and enjoy things day by day, and not worry about what tomorrow may bring.

Treadingwater
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Post by Treadingwater » Mon Jul 10, 2017 3:15 am

Hi.

My mum has end stage MS.

She has lost the ability to eat (now using a peg), move her arms and speak in recent months. She is severely underweight. She already lost the ability to walk a few years ago. She seems to be in a lot of pain but she can't tell us if she is. I wondered, from experience, whether anyone can tell me how much time was between losing the ability to speak and then struggling to breath or death due to MS complications. It sounds awful but I want to be prepared. Thanks for your help.

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