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hexag0n_sun

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Jul 14, 2013
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Loved one DX
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CA
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Ontario
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Brantford
just sat here for bout 3/4 hour staring, reaching for something to type. that's the kind of day its been. my mother was diagnosed 5 weeks ago, at that time, she had no leg use at all, .

now? the minimal movement she does have is in her one good arm (little to no finger use) and her neck. last week she could talk fairly well - this week shes barely audible... my daughter can't hear or understand what shes saying. all my mom keeps saying to me as best as she can is 'i love you'

5 weeks seems so very fast compared to what i read on the internet about average

als is relentless.

i started to cry beside my mom yesterday. for the first time. she got so upset, she cried harder than i did, saying don't cry - stop. i said its ok to cry, but she kept just saying no and saying my step dads name.

i don't understand the reaction or the request - do i honor that? not cry in front of her? i guess i hadn't before then, but i feel times running out. now how do i not cry in front of her?
 
Your mother and you are in a truly devastating maelstrom progressing unusually rapidly, and my heart goes out to both of you, as well as your step father. The rapidity of your mother's progression isn't allowing you to adjust to a "new normal" and the implications of her disease.

I think I understand your mother's reaction. She loves you and doesn't want to be the cause of such terrible grief for you. It's likely that she has accepted her situation more completely than you have yet been able to and wants the remainder of her life to filled as much as possible cherishing her family and making pleasant memories for all of you. As you have found, intense emotions expressed by one resonates the emotions of those close to them. So your mother is able to suppress thoughts of loss and concentrate on the present until you, or someone else close to her, lets their intense grief break through. I suspect that opens the gate that your mother has, and would prefer to keep, closed. She grieves over your devastating grief.

How do you not cry in front of her? How I dealt with my grief was to spend a lot of time alone crying enough tears to float a fleet of battleships. It was like venting off excess pressure in a bottle before it explodes. That let me get back in the fight and be of some real help to my sweetheart. Sure, the emotional pressure would begin to build again, but then I'd go off and let it out again. So I dealt with my grief privately, and regularly. But I always did my best to not let Annie know just how badly I was hurting because I didn't want to add that burden to the ones she was already carrying.

It's just plain hard.

But if you can put yourself in your mother's position you will probably see that you also would not want to see those you love the most to be hurting so badly - that you would rather spend your time together enjoying what time you have left rather than resonating one another's grief over something that can't be changed.

I wish much grace and peace to you both.
 
beautiful. thank you. i love your words and it does make perfect sense.
venting is certainly helping - and it does make sense to respect her wishes throughout this horrible time.
i will carry on as i will. i have a plan intact.

thank y0u phil for some very very powerful words. i really needed that.
 
I am so sorry to hear about your Mom. It is SO hard! My mother too has ALS and I sometimes wonder how it is possible. I sometimes look at her and hurt so bad for her suffering. But I never let her know. I do not cry in front of her and I do not talk to her about how it is affecting me. Or at least very little. I let her know that sometimes when I seem frustrated it is not at her, but it is at ALS. I tell her how I am going to be fine, that I will be okay and that she raised a strong daughter. I let her know that I will do everything I can to ease her and make her feel comfortable.
That said, I have reminded her that when she was diagnosed with ALS, the whole family was diagnosed with ALS. I only reminded her of this to explain why some family members may not behave the way she expects, may seem distant, may not come around all of the time. We all deal with this sadness and pre-grief in different ways. I said this only because I wanted her to know that we ALL love her so much and we are finding our way through this and will find our way.
Talk to her about memories of things you did together. Look at pictures together. Watch silly TV shows or movies. Rub her back and remember that sometimes now you may have to take the parent role. Be strong.
In an odd way, we are all blessed to be touched by such a moment in our lives. We are going to take our compassion to the next phase of our lives and give it to many others after our PALS have passed on to peace.
 
And remember hexagOn Sun that she wants very much that your are going to be okay. You are and will always be her baby, no matter how much SHE needs! So let her know that you will.
 
thank you. truly... I totally feel the passion and authenticity in your words.
 
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