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Alaura

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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!
 

affected

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Sorry you have joined us here.

Is she on bipap, and is there plans for a feeding tube?
 

Nikki J

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Hi
I am sorry about your grandmother

ALS kills directly through breathing and/ or malnutrition from impaired swallowing and indirectly through falls and hazards of immobility like blood clots and infection. And PALS also die from non ALS causes like everyone else.

Are her wishes clearly stated and known?

What is her living situation? Does she have an ALS doctor? There is a fairly easy breathing test that can be done in the clinic that would give an idea of her breathing capacity

As Tillie said bipap and feeding tubes are often used but some PALS do not want them. I hope there are plans for communication if her voice fails first. There are options from a simple handheld card to an eye controlled computer.

It is impossible to tell from what you have said how compromised she is but an option may be hospice who can work with her, her family and caregivers to ensure her comfort
 
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Nuts

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I am so sorry about your grandmother. I see you've received the same advice I'd have given: bipap, ALS specialist, hospice, and your grandmother's wishes.

I understand you not wanting to lose her, but her wishes must prevail.
 

Alaura

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Loved one DX
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Thank you for your feedback! It is greatly appreciated. Since this has been such a long, slow process, the family does understand what she wants. And part of that has been to stop medical intervention. She no longer sees a neurologist, does not want any form of help breathing, no feeding tube and she has told us all how much she loves us, but she is ready to go. I do respect that. It's just day by day now. It has been a very long difficult road. I'd probably be ready to go after 12+ years as well.

She has had 3 or more (she greatly minimizes what is going on with her to spare the family of worry. But we still see it.) episodes of respiratory arrest but started breathing again after CPR. That is all she will allow. She says that if she does not respond to CPR, then to let her go.

She is still living at home with my grandfather. He is her primary care taker. They do allow in home care to get her out of bed in the morning, bathe and dress her. Then they come back in the evening to get her back in bed. My grandfather mainly and our family does everything else in between.
 

affected

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Thanks for letting us know her wishes.

Being with her and learning to be more focused on what she wants and needs may help you through this.

There is time for grieving your loss once she is gone, but while she is here, maybe it will help you to focus on her. What can you do to make the time left the best possible for the person who has been your shining light? She will die know she has passed that ability on to you. Think of what she would be doing for you were the situation reversed.

I do believe it will help you find more peace with the whole thing (I lost my own husband, my soul mate) if you can find a way to some acceptance, and focus on her. This is all said with a gentle sisterly hug, it's the hardest thing xx
 
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