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CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
209
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
Good morning. I just need to get this out to those that will understand. I am having such a difficult time lately. And so is my husband. Damnitalltohell! Things are changing and I hate this. I hate the disease. I hate what it has done to my husband. The loss of his dignity and the helplessness that we both feel. I just am overwhelmed by it all.

We are so blessed that we have people looking out for us. We have dinners delivered by friends once a week. His sister hangs out with him on Monday's and they visit and cook together - she cooks, he is sharing his phenomenal recipes with her. We have a neighbor that mows our lawn for us and my brother, we would be so lost without his help. He has built a ramp for us, installed grab bars, and raised the toilet for my husband. And with all of this, I am still feeling maxed out.

I just can't come to terms with the helplessness. I am so sad.:cry:

And I feel selfish. Sometimes I get caught up in everything that I am going to miss sharing with him. I don't know what to do about that. It is just another layer of grief, I suppose.

And the kids are having a tough time lately too. I really think it is time for counseling for both of them. I want them to have as many resources as possible. I don't want them to hurt. I want to protect them from all of this. But I can't. As a parent, it absolutely sucks not to be able to protect your kids from this.

Sorry. Needed to get this out there. To people who can relate and understand. Sometimes, i try to talk to friends, and they just don't get it. They tell me what a great job I am doing and how strong I am. I just don't want to be strong anymore. I want my old life back with all the old stresses. I want to worry about losing weight and should I dye my hair or what should we do for a family vacation. I miss the little things.:sad:
 
Meg, most of us have been right where you are. Those feelings are completely normal (if you can call anything about this disease normal). As for the children, I don't think you can get them in to counseling too early. My son asked to go. My daughter was very resistant. My son is dealing with it all so much better than my daughter. I can't help but think that the counseling along the way is the reason that he is handling things better. I remember missing the little stresses, too. Now that I'm back to just the little stresses, they seem so unimportant. Take care. Take time for yourself. See if you can get someone else to come in another day during the week so that you can get more of a break.

Thoughts are with you.
 
As I said to someone else last night.... sometimes you just need to be able to scream THIS SUCKS to people who know they can't fix it but will immediately validate what you're feeling. It sucks. I'm so sorry.
 
Meg, so sorry you are having such a tough time at the moment. All of your feelings are so normal, we know those feelings and yes they suck.

Thinking of you
 
I get it Meg. Big hugs to you. It's a rough ride for sure. You are in my thoughts and prayers.
 
{{{HUGS}}} You're definitely not alone with these feelings. I hope you're day gets better.
 
Meg, we get it... we all mourn the loss of our regular life. None of us want to be "strong", we want to enjoy our lives with our loved ones! My heart goes out to you, and prayers as well.
Love you,
Helen
 
Meg - You are so right - it does SUCK! I've found the sadness tends to come in waves - some are big ones that last a while - others are little blips that disappear quickly. What helps me the most is my family & friends - especially for the big ones. Hang in there, get help for the kids if you think it's time (mothers know better than all) and consider getting help for you too. <Hugs>
cheryl
 
Meg,
Since the onset of my illness I have always thought it is way worse for our CALS and loved ones. I am so sorry this beast has taken your joy, your normal life and your soft place to fall. As a mama it hurts so bad to watch our children go through this h e l l . Hang in there and rant and cry. Here, you are in your safe place. So sorry!
Linda
 
Meg, We're here for you. It's ok to be sad. Think of one positive thing a day.
 
My heart goes out to you and your family, Meg.
Having to deal with all the changes and compromises that all of us make as we adapt to the losses brought on by ALS does SUCK!
Get counseling for the kids. My 25 year old goes once a week and it has been a tremendous help to her and my heart is so relieved.
We "get it" and will be here for you anytime.
 
It's okay Meg, like Di would say, will say....hold our hands and we'll help you back up.
 
Meg. Your feelings are real and legitimate. One day at a time....Yasmin.
 
So sorry, Meg. It is a drag and it is unfair. Wish I could do or say more.
 
I agree with VoiceforLinda. I can deal with all this stuff happening to me but its my family I am most worried about. When ever anyone asks what they can do to help me I tell them to pray for my family... that GOD will give them the strength they need to get through this. I truly believe GOD never gives us more than we can bear. Don't be hard on yourself. There are just some things that can not be fixed. You can only do as much as you can. Counseling for your kids (and you too) sounds like an excellent idea. I will be praying for you and your family :)
 
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