rough day today

[Erika]

It's been 7 weeks since my mom passed away . My parents apartment has been emptied and keys have been returned. People and agencies have been notified, and death certificates picked up. Time slowly starts to go back to the pre symptom, pre Dr visits, pre ALS days. And I miss her.

I know she's in a better place and so happy that she's not in that broken body anymore. But I miss her. I'm miss spending my days with her and telling her about my day or about my kids. I miss the weekend sleepovers. I miss that twinkle in her eyes when she'd* see me walking in. I miss her hugs, I miss sitting by her; her presence.**
The magnitude of her loss is setting in. I knew it would, I just didn't realize I* would have this many should've, could've, would've 's.
*Like many of you mentioned, sad and bad moments come to my mind. They're like pictures flashing suddenly in my mind. Pictures are of her struggling to cough, and of her not being able to cry, because she couldn't take a deep enough breath. Of the last time she spoke to me and I to her, not knowing it would be the last time. She looked so tired from not sleeping more than minutes at a time for days. She looked so sad and scared because she was having trouble getting enough air. I told her her meds would soon kick in and kissed her forehead. Minutes later she closed her eyes to only open them again hours before she passed. I* guess i just need to keep reminding my self that we did all that we could to give her quality of life and to keep her as* comfortable as we knew and could. Some days are just hard to though.

Thank you CALS who've lost a life* partner and have posted your feelings here. My dad isn't much of a talker. Everything is always "OK" when we ask, and maybe it is, but through you I continue to learn and can have an idea of what he might be going through now or down the road. You are all sooo strong and I hope happy moments will sneak into your days and soon bring smiles and peace to your hearts. Hugs.
- Erika

 

[soonerwife]

Hugs Erika! You should have no regrets. You did EVERYTHING you could for your mom. I felt your love for her in every post. I know she felt it too.

 

[Manhattanite]

I also found that I started to feel the loss of my PALS most poignantly when life returned to "normal," i.e., pre-illness. Once all the medical equipment, hospice, doctors, meds, etc. were gone, it seemed like the nightmare was over and I kept telling myself, "Ok loved one, it's time for you to come back now!" It became so hard to accept the reality that he was gone, hence that strange stage of denial, which it is like nothing I have ever experienced before. 5 months into widowerhood, I am still in some form of denial.

I have come to accept the flow of crazy thoughts that pop into my head and I see them as a part of grieving. Like you, I relive my PALS' last moments and many things that happened during the illness. I also think of alternative scenarios that play out in my head. I let them run their course and finally tell myself, "You can't bet against the past, because the past always wins."

Another thing I have discovered is that people return to their lives and your PALS death will become remote to them. My boss asked me the other day if it had already been one year since my PALS' death, and I said, "No! four months! And I am still having a very hard time dealing with it!" He seemed puzzled. Unless you have lived through this, it is hard to understand.

Even if your dad doesn't talk about his feelings, he will appreciate your being there for him, I am sure. Sometimes just being by someone's side can say more than a thousand words...

Wishing you peace and strength.

 

[Erika]

I completely understand what you mean by people returning to their lives. It's not their fault and they don't have to be sad or grieving along with you, but man sometimes there is a real lack of empathy in some people. But like you said, unless you lived through it, it's hard to understand.
I feel like I've been on work mode all this time and I'm just now allowing my self to process all that's happened. She's present in all I do and experience. I think of how hard it had to have been to be in one position for so long when I wake up with a sore neck, or how much she enjoyed getting out for walks, when I feel a nice breeze on my face. Every time I clear my throat and scratch an itch....when I eat something she liked and wear one of her downy scented shirts. I feel her absence but also her presence. How crazy and sad and beautiful.

Thinking of you all and hoping you had a nice Christmas and wishing you a blessed new year.
-Erika

 

[LoveMyKids]

I'm sorry for your loss. It has been 2 1/2 years since my daughter passed away. On a good day I can be so glad that she isn't suffering. Other times, I just want her back. I t is so tough watching your loved ones suffer and you want it to end. Then you find yourself alone and stuck in a different ALS hell. I know some people that just have the happy memories and some who have the bad times just playing through their heads. I don't mean this to be depressing but I've just come to realize that for me, ALS doesn't leave. It changes your life and I am just trying to love on my family and get through the day. Be easy on yourself and don't have expectations that are too high. Allow yourself the time to figure out the best way for you to deal with your loss regardless of what others may think!

 

[Jlynn]

Wow..after reading your posts here I almost feel normal. I lost my PALS, my baby brother 16 weeks ago Tuesday. What you describe is exactly how I have felt. Your relieved that your PALS is finally at peace but you miss them terribly. I had a good cry Erika after reading your post as I can so feel your pain. You sound exactly like me. The end of Mikes journey and even the journey is like a movie reel in my mind and I can see it all so vividly. The feeling that your world has come to a screeching halt while life goes on all around you. It is getting better but takes time I guess. You have been through a journey no person should ever have to go through. You do you and whatever it takes to get through it. However long it takes as well. Hugs to you all.