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missmineau

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Dec 2, 2010
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Loved one DX
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CA
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Sask
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The land of living skies
I just need to rant and ramble for a bit, clear my head. My mom was diagnosed approx 1 year ago, with symptoms for years before diagnosis. She has little to no use of both arms now, some strength in her legs, she is still chewing, swallowing, breathing, but noticable decline in all three, on her own. Depending on who you talk to some say this progression is fast while others disagree. I keep clinging to the fact shes still chewing and swallowing. I am still such a wide range of emotions on a day to day basis. I imagine in ways I am already grieving (lack of better wording sorry) the mom I used to have, then I feel horrible for feeling that way. I hate the fact that this isnt going to get any easier, things arent going to get better! I hate what the disease has done to my mom and my family! I hate the fact that I dont have any answers! I hate ALS!
 
I hear you Babe. {{{{BIG HUGS}}}
 
Oh sweetie, we all know these feelings...let it all out here! We can take it!
 
So sorry.....you can rant and spewww all you want here...it is difficult for PALS and CALS in ways most cannot comprehend. Feel for ya hon, praying for you also. Hang in there I also Hate it!
 
We all hate ALS! I wish I had some words of wisdom. It is such a cruel disease. Your mom is same person inside. Treasure every moment. But take care of yourself as well. When you need time away from it, take it.

And here is where to vent and rage against this beast who is stealing your mom's body. I'm at about same point as your mom. I think progression is fast while neuro calls me early stages. You and your mom have every right to the gamut of emotions this friggin disease brings.

Big hug to you and your mom.
 
I understand. My daughter is grieving the part of me she has already lost. I am so sorry you have to go through this. Please know you are cared about here and you are safe with your feelings.
 
Oh missmineau I am right there with you with all of those feelings. My Dad was diagnosed approx 7 months ago & it seems this evil disease has taken over his body fast. Of course any little change just kills you inside. Like you said about grieving for the Mom she used to be~an extremely normal emotion~I too wish for my Dad to be how he used to be. Right now it comforts me to still be able to spend time with him & atleast have a conversation with him :)

>>>HUGS<<<

at the same time this is a good place to scream & yell! There's a lot of understanding & comfort here I have found. Just reading other posts has helped me.
Thoughts & prayers to you, your Mom and family <3
 
I hear you loud & clear ... the hardest thing for me to get over is the fact that it'll never get easier ... this disease is shameful!
 
I totally undertsand where you are right now. My feelings change hour to hour and sometimes minute to minute. We have three children in their mid 20's, and they all feel as though they need to cram in a lifetime of memories with their dad in a few short years.

I know it is hard, believe me I truly know, but we all have to stay in the moment and try not to think too far ahead and enjoy these precious moments together with our PALS.

We should all have a bumper sticker that says "I HATE ALS!" I'd put it on my forehead!
 
This is the place to rant whenever you feel the need. We all hate this terrible disease.
Beckysuenc
 
As I have seen it said on this site often and could not agree more, is something called the "the New Normal". This thing changes a person at their own rate and the new normal, although not liked at times has to be faced and dealt with as best that we can. It is so hard to give little things up and keep emotions from just running away, but it has to be done.
 
{{{ hugs to you}}}

This is the place to rant! I hate the fact that my husband has now delegated all decisions to me. He just isn't interested in trying to decide about anything.. his health... his care... bills..

None of us signed up for this... we were all drafted against our will!
 
Renee
I'm glad that you posted that. I have tried and tried to get my husband interested in purchasing furniture for the new house. What type of fence should we install in the back yard for the dog. He was so excited when we first moved in on Labor Day. Now I guess it just takes too much energy. Making decisions, etc. Discussing bills. He's leaving it all up to me now and we always discussed major financial decisions before making them. He doesn't want me to do the bathroom renovations for him. Makes me sad all over again.
 
Grief is a normal process when a disease is diagnosed in family or ourselves. It's absolutely nothing to feel guilty for at all! Anger, bargaining, denial, depression and acceptance are all part of the process of dealing with grief. There is no time frame for each stage--some even go together at the same time--depression and acceptance and anger often go hand in hand.

It'll help you to vent those feelings--the harm of grief comes when we try to hold things inside. Take care and vent away.
 
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