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Fencer

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Feb 21, 2010
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Loved one DX
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New York
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Northeast
Hi all. Just joined this forum today after my big sister (already a member) told me about it.

My mom was diagnosed with ALS a few short months ago and seems to be flying through the various horrfying stages faster than any of us can adjust. It seems like she's gone from speaking slowly and walking with a cane on Thanksgiving, to being practically crippled and unable to speak today. She groans and I can only understand a word here and there, sometimes that's enough for me to fill in the blanks- sometimes I have to guess, and I can see the pain in here eyes knowing my guess was wrong but she doesn't have the strength or the wind to try again.

My heart breaks when I look in her eyes; when I see the pain, the fear, the utter shock of this all-encompasing devil that has destroyed her in such a short time. I hold her hand and recall all the times she held me and looked at me in a hospital bed, many times as a child. Now I look at her, always a small woman but looking so tiny and broken now.

Yesterday was especially gut-wrenching. Having had her legs give out for the first and second time this weekend, she realizes the next big step of being confined to a wheelchair is upon her. At one point, when trying to explain how she fell, she started to speak, then ran into so much difficulty she just motioned to her legs and then to her back, with tears starting to pour from her eyes. All I could do was hold her. It is this image that haunts me so much today I have to distract myself, run around, do anything to stop thinking to avoid falling apart here at my job. I fight back tears every time I see her in my mind's eye. The pain is horrific.

I've felt pain before, as most of us have. Some is worse than others. But I believe this is the first time since I was mourning the death of my 28-year-old brother, many years ago, that the pain is so intense and close that it feels like a gorrilla sitting next to me in the room and I have to pretend it isn't happening for a few minutes now and then, just to give my heart a break.

ll I can say is I am thankful for my brothers and sisters at this time. Going through this without siblings would have to be so much harder. And my heart goes out to all the others suffering at the hand of this miserable illness. Like so many of you, I can't believe I'm here.

I keep thinking of my father's words to me alone, days after the diagnosis.

"I was in a fog, thinking, they can't be talking about Mommy," he said. "Not my wife, she can't have this."

Hang in there everyone. God bless us all.
 
Fencer, welcome to our forum family and very sorry about your mom. If there is anything that we can do just let us know and we will do whatever we can.
 
hi Fencer! Very sorry about your mom's diagnosed. Hopefully you will be able to come to the forum and vent your frustrations about this disease with us, as we understand. Good luck to you and your family.
 
Hi Fencer! I am so sorry about your moms diagnosed. I know how that feels because it is my dad who has it. He is the strong man in our family. The only man in our family. So proud, and rightfully so. It is so very very hard to watch our parent suffer at all isnt it! My dad is not as far along as your mom yet, but soon I will be sitting in your exact shoes. You my dear are already grieving. Thats normal right now. Let the emotions go when you can and try and not hold back. I too try to keep a happy face around my dad, if he sees me upset, it will naturally upset him as a parent. But, the second I am out the door, not even to my car yet, I am in tears. Gotta let it go. Exercise when you can too, that can help your emotions. I lost my husband suddenly when he was 42 to a heart attack, and that really taught me to value each and every second that I am with my loved ones. No matter how painful, it is still a blessing that they are still with us. You have the time to communicate all that you want to with your mom right now, she is still in there sharp minded as ever. That is a blessing. Try and focus on the good. I know that is so hard, but it is there. I hope that soon your mom can get a computer to be able to communicate on. Things will be so much easier for her then. My thoughts and prayers are with you and your family hun! Welcome to our family forum, and please keep us posted on how things are going for you!
Hugs,
Kari
 
Dear Fencer,
So, so sorry for your mom, and your family...having to live through this awfulness. Your mom and dad are blessed to have you and your siblings to love them through this. All we can do is hold you in love and prayers. Words, I'm afraid will fall short. Allow yourself to feel your feelings, and then, as you have been, tuck them away so you can take care of the task at hand-loving and being there for your mom.

We are here to hold you up and give you a safe place to "let it all out", shore you up with our encouragement and prayers and, sometimes...make you smile!

Peace,
Melody
 
My mom was also diagnosed just a couple of months ago. I so understand what you are feeling, Fencer. It is so overwhelming to process what is happening to our mom who has been the center of our family for all of our lives. You are not the only child of a PALS with a breaking heart.
 
Welcome Fencer, It is a sad day when you come looking for this forum.How well i remember. I do think as time goes by it will get a little easier in some ways. You have found a place to go when you need someone to relate to and vent and cry and sometimes even laugh. We are all here for you and know what you are going through you are never alone.. Hugs, linda
 
fencer, just crying along with you and for you and all the other families on this forum
 
Fencer - so sorry to hear about your mom. ALS just sucks. This forum is full of amazing, courageous people who understand what you are going through.
 
Betsy and Fencer. Welcome but sorry you had to come looking for us. I hope we will be of some help to you.

AL.
 
Fencer, I second Paleshia's comment. This devil/beast has broken so many hearts. Thank God we have each other to talk to.

Debbie
 
Dear dear Fencer, You are a wonderful son and clearly you are a close and loving family. Though this terrible curse has borne down upon you all, your mother has the blessing of being loved and held and helped by you all. We cannot change what has happened to her, this cruel, evil illness, but at least you are there for her and you are able to show your love and you are THERE for her. Even in the depths of her despair she must be rejoicing at the love she receives from her family. BRavo! FEel all our arms around you as you put your arms around her. All we can offer is love.
 
dear fencer i feel your pain, and your tears as your heart breaks having to see someone you love so much going through this awlfull disease.i have bulbar als so were looking at it from a different view maybe this will help .when i look in my wifes eyes i feel and see the painnshe is going through watching me .i have children and see that to i fall apart at times with an overwhelming feeling which turns to pain were i cry and breakdown emotionally.it takes me a while to pull myself together but for me with als i worry more about my love ones having to see me this way i feel there pain .i know in my heart god will take care of me and you .its a horrible disease that i hate very much but it also changed me to a person that can show love and a person that has become selfless that cares for those hurting souls .would i wish i didnt have als you bet ya but then i probably be that same old person i used to be so for that im grateful .if yopu ever need to talk im here god bless you and hang in there jeffp
 
Thank you, so much, for all the kind words. It really does help.

I'm off to see my folks today; taking my dada to VA hospital for two doctor appointments and seeing mom after. Trying to get my head together to smile and sound positive for a few hours.

As others have said, just have to keep it together 'till I say good bye and get to my car, then I can cry, curse, whatever! :wink:
 
There you go! We are here to vent or whatever you need anytime hun!
Hugs,
Kari
 
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