Does the fear ever stop???

[scaredwifetx]

I have been catching up on posts tonight. I am now sitting here in tears and have to write my own post.

I wanted Christmas to go by and just get over. I rung in the New Year with my best friend and was so heartbroken when the clock struck midnight. My imagination/fears are haunting my every waking moment.

Steve is changing before my very eyes. We are on this nightmare trip. I feel utterly sad and just so very angry...thinking " how do our PALS do this" I know Steve is also afraid and thinking about the future. That is a big change and another fear for me. Its so damn messed up... how this disease is so rare but the destruction it causes is cruel and massive.

I find myself looking into my future more than I should be. I keep imagining trying to move on and spend the rest of my life without Steve.

There will be so many changes...even after Steve takes his final stand... against the thief. These changes are frightening. Selling our home, all our memories, and trying to live with some kind of hope. I can't imagine not being able to share my dreams and thoughts with Steve.

I am so afraid of the future. I do my very best to stay in the moment for Steve but...late at night when its all quiet...my monsters and fears come out to play their games with me. I know we all go on...but what is left of us? I certainly have less years ahead than I do behind. Did ALS steal my future to?

Fear of the New Year. Never thought I would be saying that. I guess I should take something to help me sleep. The Sun will shine again tomorrow.

 

[affected]

Wrapping you in a sister hug Deb xxxx

I wish I could say it will all be fine. You know I'm still standing, and so are other past CALS. It's freaking hard.

You know it's so much healthier to get this out and say what you fear and are feeling than to just take some medication. Well you need sleep really badly, but you also need therapy and we are here to help you therapy it all through.

What is left of us - well there is something left, whatever it is, and we build something different on the foundation of what is left. Gosh that sounds like some crap rhetoric! But you know me enough to know that it's actually exactly true.

We don't ever 'move on' or 'get over'. We do learn to walk with the limp left from the injury of our loss. Leave that til after he is gone, we will discuss it then. You can't truly see the other side until you get there. For now, live in the day, do what you need to do to get through every day and know you will look back and know you did your best with love.

Another hug xx

 

[soonerwife]

Hugs Deb. This could have been written by me. I am here for you and walking the same road.

 

[adrivtham]

I am so with you all.
I am in constant panic and I wake up every night unable to sleep.
My husband Phillip was diagnosed in February of 2016. He can't talk or walk, I jus can move him from one chair to another. His breathing has declined in the last month so bad that he is sleeping in a chair with the trilogy on. He can't lay in a bed. I am fighting the insurance to bring a hospital bed but every step comes with pain, it was prescribed at the beginning of December but hasn't show up yet.
I work full time because we need the insurance and the money to be able to survive.
I pay a lady that cooks, clean and watch my husband while I am at work.
There is no mercy for this situation, how come we stop the fear if every thing is so difficult an painful.

 

[Nuts]

Deb, my heart is breaking as I read your post. You can't fight this trip we are on. I've always been a control freak, but I can't control anything now. I think I've given up. I often wonder what kind of person that will make me down the line. I think I have years left, but who knows. I'm not sure I want to.

Big hugs
Becky

 

[Narrowminded]

Deb - sending huge hugs your way. What we do isn't easy, but try not to dwell on the future. Easier said than done I know. None of us that haven't gotten there yet know exactly what it will look like. However, I believe that if we have been given the strength to deal with this monster, we will also be given the strength to deal with what comes next.

Hugs,

Sue

 

[scaredwifetx]

Thank you all for the warm responses. I am so glad I have you all in my life. I know everything you are all saying about not thinking about the future. My problem is that I have always planned my life and future. I don't know why everything is hitting me so hard right now. I can't control my head or thoughts. I don't believe I have gone crazy... but who knows anything, right now.

I get so very sad for him. I hurt for him and dread everything that is ahead for him. When I am not thinking about him... I am thinking about my future or lack of. I kick myself for not being strong enough to deal and be courageous. Everyone one knows me...knows I am very strong and normally positive. I feel bad when going to work and my job requires strength, personality and positivity. When I am at home...it breaks my heart to watch what this disease is doing to him.

I feel bad for even needing to share all this crap with everyone here. I can only pray that it helps someone feel so not alone. I do know that Steve and I are fortunate in so many ways...but for some reason... it doesn't make me feel any better. I hope my emotional weakness is temporary. I have no clue how long our journey will be...so falling apart is not an option.

 

[scaredwifetx]

Tillie, Sue, Becky and Soonerwife, I re-read your posts tonight. It gave me peace, at least for the night. I should already be there. I know firsthand, that the other side... is always unknown. I needed to read and yes I am going to say it...hear it. I admire each one of you, each and everyday. I do know we will all survive and live on. I know ALS picked the wrong women to mess with. It may bring us to our knees and kick us around... but we are standing up each and every day to battle.

I love you all and damn it...its good to have support. Just wish I didn't have to know any of you!

 

[affected]

I feel bad for even needing to share all this crap with everyone here... snip ... I hope my emotional weakness is temporary. I have no clue how long our journey will be...so falling apart is not an option.

You are not emotionally weak in a way that means you are somehow failing or any other sh!t. You are incredibly strong - my word here girl, this is something that undoes a lot of people.

A lot of people walk away from their spouse after diagnosis of many terminal or life threatening conditions. I can't fathom it, but it's true.

A lot of people give sub-standard, even shocking care to their spouse. I can't fathom that either. I have been told horror stories by many people I know that do home care services for a living. People left to just sit in a room alone all day because they can no longer speak, so they are ignored by their 'loved ones'. All kinds of neglect and abuse.

So let's face it - courage is facing fears, and the greater the courage, the greater the fear being faced. Courage never means you don't feel fear, in fact totally the opposite!!! Courage means you manage to persevere in spite of the fear.

Wisdom is taking help in a hard situation.

So what I see in this thread is an incredibly courageous woman exercising wisdom.

I have said it before and I will say it again - when I was a CALS I felt like I was just bumbling along. I was scared out of my pants, I was in grief and I despaired often. I took all the peer support I could get and I wondered how the hell I was going to make it through what was happening.

People would tell me (and I mean people who knew) that I was doing an amazing job and my eyes would glaze over and I would think but I'm not doing enough, and I can't cure him.

Now I look back and I know that I have no regrets.

The reason is this - my entire aim was to ensure that Chris got high quality care, that his dignity was preserved, that I treated him with love, and that he was in control of everything possible.

I achieved that. These were things I could control and achieve. I couldn't control the disease, but I could do some things knowing I would lose him.

Everything you feel is valid, and all CALS feel all these things. That's how I know you have incredible courage, because you are battling these things every single day. If you don't hear others admit it, that doesn't mean they are not in as much despair, it just means they didn't admit it xxxx

 

[Jhill]

I just want to say that my heart goes out to you and everyone dealing with this monster of a disease.

You are grieving constantly from the day of diagnosis. We cried at each loss Bob had, but some days it was like a giant wave crashing over us.

Thinking of you and sending many, many hugs.

Joan

 

[Nuts]

I would love to meet you all one day. I wish we could all be together somewhere. What a group we'd be. I will never again be afraid to live, that's for sure.

 

[Cattaztrophy]

You all help me more than you know. Tonight I feel like I'm just putting out fires. Trying to do all I can to stay ahead of his needs. My pals is so miserable. He's on a Trilogy machine almost constantly. We have very little conversation and I'm already so lonely. When I read your posts I realize that what I'm feeling is the way most of the other Cals feel. I'm consumed with grief. Lord Jesus, put your arms around me and hug me please

 

[scaredwifetx]

Cattaztrophy, I hear you and I am also putting my arms around you for a hug. I know your grief and you loneliness. I hate knowing that anyone has to feel alone.

Steve has been so very different, the past week or so. He is on his Trilogy a lot, falls asleep easily and often, is forgetful, slurring, words are not being said right, and he has had some pretty emotional conversations. This morning I called him from work to check on him and he told me he felt very weird. Of course, I immediately was worried and call his neuro to see about an appointment. We don't go to clinic until the 20th. I was worried he needed to see her before then.

I get home from work tonight, he says he is fine and to cancel the appointment. He is sitting, not talking to me and watching another episode of Big Bang. The only show he will watch now. He watches hours of this show every single day and night. I can recite almost every line of the cast.

Anyways, it is lonely. I am no longer able to concentrate at work and don't want to go. I get crazy staying at home with the silence. I feel so out of whack. No tears or fears right now...just empty...so very empty.

 

[Narrowminded]

Cattaztrophy- please feel my hugs as well. I too know the loneliness.

Scared- trying to stay ahead is hard and I'm not sure it's even doable. At times it sure doesn't seem like it

Praying we all find someone who can actually be there is person for us.

Hugs

Sue

 

[kmarie]

Deb, I am glad you started this thread. I so understand how you feel. I am going through the same emotions, and then feel guilty that I am concerned about my future and how ALS will affect me. He is the one that is looking the disease in the face. I only pray I will be able to give him the care he deserves.

I wish none of us were here on this forum, because it means each of us are hurting. Sometimes after being on the forum I just cry. I don't know if it is self pity, or grieving for everyone and there pain and loss.

I know I need all of you, we need each other.

Hugs,
Kay