Every day is a struggle

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starente15

Senior member
Joined
Oct 27, 2014
Messages
809
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
This Saturday will be 10 weeks since my father's passing. Every day I shed at least a few tears as something I hear or see sparks a memory. Nighttime is the worst and I have a lot of trouble sleeping because I flash back to dark times.

I'm trying to find a new routine while I'm without a job and try to get to the gym in the morning, look for a job in the afternoon and knit in the evening. This morning I woke up and just couldn't do anything I'm still in my pj's at 1pm, have no energy to move and am sitting here crying.

I suppose this is normal for the most part as time works to help heal but it feels so crappy. I often think it's good that I don't have a job because I have no idea how I would function :(
 
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Star, you put your life on hold for your parents, and now that he's gone you not only miss him, but are left without that strong sense of purpose that his condition gave you. I hope you fill your life with happiness soon.
Hugs,
Becky
 
Star, it gets better, but not quickly.

I used to give myself a designated few minutes at bedtime to feel sorry about my wife, and stay busy until then.

But if you really are not working because of this, then it's reached the point of being a disability. You might want to ask a doctor about that.
 
Mike Star lost her job, not due to anything about being a CALS or grieving.

Star, sending you a PM - what you are going through is grief, and it SUCKS, and is normal xxx
 
Thanks guys! As always, you are tremendously supportive. I got your message Tillie and will respond shortly.
Yes, I lost my job two weeks after his death so I feel like I'm mourning two things at once. Many others were displaced but I feel that my being away for so long played a part so I have some anger there as well. As I slowly start to look for my next opportunity, I'm taking time to try to recover so that when I get my next job I can be fully focused.
 
It's nearly 2 years for me and this year I am finally looking like being able to work at full capacity again.

Oh I guess I kind of could have last year if I'd had to, I have needed to 'be' more than just be out there earning a living in the rat race.

Our western culture totally sucks at recognising grief for what it is and allowing it to happen. People become embarrassed if we cry and try to 'make it better', instead of acknowledging our grief. I don't know how many times I've said to people - no you didn't make me upset, I was already upset!

But I promise you will move through this really hard stage - gosh it's only been 10 weeks, that is a VERY short time. In Australia the gov gave me 14 weeks extra pay pension as an acknowledgement of my need to grieve rather than be out working. I thought that was way generous but now I think 6 months paid leave would be far more close to the mark!
 
Sorry to hear of your parents passing. I just lost my Mother July 30, 2015 so I have an idea of what you are going through. No it wasn't from ALS it was lung cancer. Since then I've been diagnosed with ALS (about 3 weeks ago). For me, It's been rough, still grieving for my Mother who I took care of for years and then got hit with this diagnosis.

My son recently told me he wished he could take away the pain, the disease and just make me feel better. I told him if I had to choose between one of my loved ones...my kids, husband or grandkids having this disease I am glad I am the "chosen one". I could not bear to see them go through this...the way I'm looking at it is...taking one for the team. Sounds silly, I know. I want them to live their lives now and after I'm gone...be happy, move on with LIFE. And I'm sure your parent would want the same for you. Sending positive vibes your way.
CarolSue
 
Star, I know everyone grieves differently. I lost my parents and grandma within 13 months wjile going thru a high risk pregnancy for my son. One tjing I learned on my journey was to recognize they are jo longer trapped by disease, they are free. You might want to think of it as 10 weeks since he was freed of an awful disease, 10 weeks he has been at peace. Hard to do but a coiple times a day when it is hard, try to think this way. It helped me heal, I hope it helps you.

I also had lost my job shortly after returning from my fathers death. The thing is, I would never let him be alone going thru his journey. I wanted him to feel loved and cherished. So yes I was angry too but I didnt regret my choice. My family, my father, was most important at the time.

Lastly, I would say to check in with your doctor or mental health person. Anti depressants really help. I grieved until I almost lost my marriage.....2 years of it. I am still sad about my parents and think of them daily. But I believe they are in a much better place than their last couple of years on earth.

Hugs to you.
 
I think 10 weeks after death is such a very short time, it still feels like yesterday, in fact it practically was just yesterday.
 
That is true Tillie. In my case with my parents and grandma dying from cancer there was a routine and certain path so I had time and did grieve a great deal before they passed. A new baby didnt hurt:)

My only intention for star was to think in a more positive way about it. But everyone does grieve very differently, and there is no right or wrong way.
 
oh gooseberry, I was just thinking out loud, not saying anything in reply to your post :) I haven't lost a parent, so I can't reflect on how that felt after caring for one. Sorry if I can across that way.

And it's true we all grieve differently. I don't think there are any real rules, we just have to go through it - ahhh it is what it is eh xxx
 
Dear Star and all Caregivers,

As a person with ALS I am looking intimately at the approach of my death. I sit for long hours in my chair and think of my wife and children and what it will be like for them when I have passed. My wife has vocally expressed a great struggle with going on without me, and I am deeply concerned for her.

My thoughts and advice on how to continue are simple. -Do what you did for me, serve others the way you loved and served me. Do not stop being that beautiful caring person, who did everything you could for your passing loved one, but continue to love and care for those around you.

Most of you who will read this serve others here on this forum, Mike, Tillie, Laurie etc....... You devote long hours to giving advice and helping. I am sure you can vouch that caring for us who come here with dread and questions takes your minds off of the ache in your own hearts as you help ease the ache in others.

This is not the only way to serve others though. I remember reading the stories of how Mike served his children and sought to put their needs above his own. Tillie and her beautiful memorial Trees on the other side of the planet, and Star you recently with making us aware of the "leftover shirt Bears". These are just small examples that I know of and I am sure there are many more ways that people have found self help in helping others.

I want to know that my wife and children will be ok. I am glad that they will miss me, but I want there lives to be full and happy without me. I can not bear the thought of my wife moping around depressed and paralyzed with sorrow when I know she has so much to give. So again I ask, I plead, take your mind of your own sorrow and tend to others who are in sorrow or who have a need of any sort.

Star, be the person your dad saw, the one he loved and cared for him. Be the caring go getter who flew across the country to be at his side. Get up and go to the gym, while you are there help wipe down someones equipment for them, if you stop at Starbucks on the way home by someone a cup of coffee. When you get home go out and get the dream job you always wanted, don't "try" and get it -get it. In the mean time make it your goal that each person, stranger or fiend, who you run across will see in you the person your dad saw and loved.

Finally, we who you have served with your life, love you. We wish that we had more time to serve and love you. Our regret is that we did not love you enough. We do not want to see you sad or depressed, but we want you to be the loving person that we wanted to spend our lives with.

-peter
 
So very eloquently said Peter. Thank you. Steph
 
Thanks, Pete. Your words really resonated with me. I will read this many, many times. Like your wife, I have told my husband that I don't know how I will be able to live without him. Today is the anniversary of our very first date 40 years ago. He is my best friend as well as my husband.
 
That was beautiful Pete. I will certainly take your words to heart. :)
 
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