Alaura
New member
- Joined
- Oct 7, 2016
- Messages
- 2
- Reason
- Loved one DX
- Country
- US
- State
- Wisconsin
- City
- Milwaukee
Hi all,
My name is Alaura. My very dear grandmother is battling MND. She has a very slowly progressing form of MND and has been battling for over 12 years. Which from my very general understanding is rare as some only get a few months. She just celebrated her 80th birthday last week.
The thing is, I think she is starting to hit the end stages and I am struggling to understand and accept all of this. If you have any info, words of wisdom or anything at all to offer, I would be so very grateful and appreciative!
The general over view is:
My Grandmother, who is my only safe haven and guardian angel, started getting weakness in her hands and arms. As a strong, independent woman she did all she could for as long as she could. Eventually she lost all use of her hands and arms and then her legs started getting weak. Leading to the inability to walk. Then her core. She is now has no function from the neck down aside from her muscle spasms and twitches. She is still able to talk and move her head a little from side to side to look at us when we talk to her. Thankfully, this disease did not affect her cognitive functioning, speech, swallowing and breathing... Until recently.
She now gets short of breath, has some difficulty swallowing, her vocal cords are affected so speaking takes more effort and it seems she cannot move the air in and out of her lungs as well (light, shallow breathing). I don't know much aside from what I have seen happening over the years and some research I have done recently. Which isn't much help as the articles say: "each case progresses differently". I guess I have been in denial and already grieving. Am I correct that now she seems to be hitting and/or near the end stage? What should I expect and how can I prepare?
My heart is so incredibly heavy. I want to take this from her so badly. To take her place. She and no one for that matter deserves this! I am terrified. I don't want her to suffer and be trapped in her own body. But selfishly, I don't know how I will survive this. I cannot fathom living in a world she is no longer a part of. Something deep within my soul is breaking more and more. It's a deep and unfixable break.
She has not been in pain so far. From my understanding, it's the respiratory arrest that ends the life of one with MND. Do any of you know? Will the end be peaceful or will it be a painful struggle? How can I help her?
How do you cope with watching your loved one slowly waste away? This is killing me! My life will never be the same and this world will be such a dark place without her light in it. I'm sure you feel that way about your loved ones, too. I can understand the deep love you have for your loved one going through this as well. This amazing, godly, inspirational, loving, faithful woman that I admire and who has genuinely saved me... I don't know how to go on without her. She taught me so much through her love and example. I could go on and on about my guardian angel of a grandmother. But I know you all are carrying just as much fear, pain and weight weather you are personally battling this or caring for the loved one who is.
Please, if you think of anything that could help, do reply. Thank you for taking the time to read this. I'm so appreciative to find this community. I'm sending out my love and comforting hugs to all who need it! Throw my prayers in there as well. I'd love to chat with others and spread as much support as I can, as well. Bless you all!
My name is Alaura. My very dear grandmother is battling MND. She has a very slowly progressing form of MND and has been battling for over 12 years. Which from my very general understanding is rare as some only get a few months. She just celebrated her 80th birthday last week.
The thing is, I think she is starting to hit the end stages and I am struggling to understand and accept all of this. If you have any info, words of wisdom or anything at all to offer, I would be so very grateful and appreciative!
The general over view is:
My Grandmother, who is my only safe haven and guardian angel, started getting weakness in her hands and arms. As a strong, independent woman she did all she could for as long as she could. Eventually she lost all use of her hands and arms and then her legs started getting weak. Leading to the inability to walk. Then her core. She is now has no function from the neck down aside from her muscle spasms and twitches. She is still able to talk and move her head a little from side to side to look at us when we talk to her. Thankfully, this disease did not affect her cognitive functioning, speech, swallowing and breathing... Until recently.
She now gets short of breath, has some difficulty swallowing, her vocal cords are affected so speaking takes more effort and it seems she cannot move the air in and out of her lungs as well (light, shallow breathing). I don't know much aside from what I have seen happening over the years and some research I have done recently. Which isn't much help as the articles say: "each case progresses differently". I guess I have been in denial and already grieving. Am I correct that now she seems to be hitting and/or near the end stage? What should I expect and how can I prepare?
My heart is so incredibly heavy. I want to take this from her so badly. To take her place. She and no one for that matter deserves this! I am terrified. I don't want her to suffer and be trapped in her own body. But selfishly, I don't know how I will survive this. I cannot fathom living in a world she is no longer a part of. Something deep within my soul is breaking more and more. It's a deep and unfixable break.
She has not been in pain so far. From my understanding, it's the respiratory arrest that ends the life of one with MND. Do any of you know? Will the end be peaceful or will it be a painful struggle? How can I help her?
How do you cope with watching your loved one slowly waste away? This is killing me! My life will never be the same and this world will be such a dark place without her light in it. I'm sure you feel that way about your loved ones, too. I can understand the deep love you have for your loved one going through this as well. This amazing, godly, inspirational, loving, faithful woman that I admire and who has genuinely saved me... I don't know how to go on without her. She taught me so much through her love and example. I could go on and on about my guardian angel of a grandmother. But I know you all are carrying just as much fear, pain and weight weather you are personally battling this or caring for the loved one who is.
Please, if you think of anything that could help, do reply. Thank you for taking the time to read this. I'm so appreciative to find this community. I'm sending out my love and comforting hugs to all who need it! Throw my prayers in there as well. I'd love to chat with others and spread as much support as I can, as well. Bless you all!