The good and the bad

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gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,501
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
So many here cite how they should be......feeling better.....should be over the grieving.....should be dating and starting a new life. According to whose standards?

I should be creating a full life surrounded by people that care for me and am making progress because that is what I feel is right for me. No one gets to decide for us what we should be doing. Our journeys were long and taxing. We should be learning to care for ourselves and how to bring joy back into our lives.
 
The first thing my psychologist told me was not to use the word should :)

I'm not sure who is telling you any of that stuff - grief is a very personal experience and just like no one else knew what my life with Chris was like, they have no idea what it is like without him.

I hope you can put your own needs first and just do what feels right for you - it's still very early days for us Steph, grief takes a long time xxx
 
I am getting much better Tillie at putting myself first. I posted because it seems many caregivers are feeling guilty for what they "should" do vs what they feel they can do.

Being on the otherside of this disease I have realized how bad that feeling is for your physical, mental, and enotional health.

I believe you are right. No one knows how hard this disease is unless they have lived it 24/7. Yet families and society judge.
 
The guilt immediately associated with the word 'should' is exactly why I was advised never to use it - especially when talking about myself.

So when other people 'should' on you, it's extra awful. I hate having a pile of should all over me!

I think I might make a T shirt saying "Don't should on me!"

There are no absolute rights or wrongs and that's where 'should' is a problem. I have found that gardening like a maniac and working with nature has helped my grief enormously. Does that mean all other CALS should do this? Not at all. (and you know this I'm just rambling).

We are all so complex, and the lead up to, and then our time going through ALS is so different for each person, of course the grief is going to be totally different. And yet the grief is the same in the essence of it all.

Thanks for coming back here with these great thought provokers.

I'm off today for a morning with two of my dearest past CALS friends. We couldn't be more different in how we live our lives and what we have done since the passing of our PALS. Yet we get together and we understand each other instantly and we can talk deeply with so few words. I can't wait to see them, we still need each other and probably always will!

I'm so glad you are learning to look after you - it's something I'm still really coming to grips with, I feel guilty if I just think of me instead of others!
 
I saw my neuro today for my anxiety. She said wow.....you look bouncy. I have never seen you look so happy. Whats changed? She has encouraged my self care efforts and was surprised I took our conversation to heart and implemented many of her ideas.

Steves cousin just came and stayed a few days with us. She is very nice and we had a relaxing visit.

She told me to disregard those who judge......no one knows what we went through..
 
Thank you for posting this... After getting Engaged last week I've heard the " Shoulds" and " should nots " to my face and whispered behind my back.. no one but a Cals has any idea what it's like to walk a mile in our shoes. My Therapist told me right off the bat that there is no timeline for grief. Everyone is different. As I embark on a new life it's with a clear conscious that I did everything humanly possible for my Lizzy and that it's not about replacing Her at all. It's learning to live without her physically. She will be with Me the rest of my Life in my Heart and in the smiles of my 2 kids. We talked a lot about what she wished for The Kids and I after she was gone. And maybe by some people's standards I'm moving to fast.. I'm just moving forward. It's the only direction for Me to go.
 
Staying strong, Please do what is right for you. I have learned a lot about self advocacy on this journey thru my struggles with this disease. No one else, except my son, experienced the day to day life of als. You need to care for yourself at somepoint. If being married helps, I say go for it.
 
Ignore the judgemental people. You all have done wonderful things for your PALS in helping them navigate the awful journey of ALS. You all deserve happiness more than most. Everyone is different. Just do you. I wish you all healing and happiness.
 
Jlynn, The hardest part is rediscovering what in fact you do like or are interesed in. The 2nd hard thing is being to sit and relax.
 
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