Regret and flashbacks

[Weltschmerz]

I’m coming up to the three month mark since my wife passed away, with only limited eye use still available at that stage. While friends have been helpful and I’ve benefitted a lot from long chats and walks, every now and then I have flashbacks to awful situations we found ourselves in when I was in the thick of caring for my wife. Many are related to things that were just plain scary: breathing relayed, or overwhelming emotion at some of the intricate jobs involved in personal hygiene. I have a lot of associated regret about moments in those flashbacks when I wasn’t my best self. It was exhausting to work during the day and come home and be responsible from 7pm - 9am. I know that but I also hate having moments I now wish were different. Does anyone else have the flashback thing? I did hear early on that there may be elements of PTSD, and I wonder if this is part of it. I do have lighter days and moments, of course, but these memories and thoughts come suddenly and really take me by surprise. I wonder if this is common and if so, whether it passes?

 

[affected]

Definitely flashbacks are a normal part of the grieving and PTSD that we experience as past CALS.
Please allow yourself to go through these moments, then treat yourself the way you would treat your best friend if they told you this was happening to them.
ALS is the thief and killer. You did your best, and playing 'if only' is a destructive thief that tries to take even more from you.
I can tell you that time heals, but it doesn't happen in just weeks or even a few months.
But you will realise one day, that they come less frequently, and are less impactful and shorter lasting.
The times of feeling lighter last longer and you begin to realise that healing will happen in truth.
We wouldn't grieve so hard, nor be as impacted by the trauma, if we had not loved madly, truly, deeply.
A virtual hug to you

 

[lgelb]

We cannot go back and rework the moments that we regret. But everyone has had those moments, not only P/CALS. If we let ourselves stay in them, we could never do better by ourselves.

Still, as the past is part of the present, I find it helpful to remember the experiences that my husband enjoyed both before and after he had ALS. If I have a flashback of something traumatic, I still know it was his choice to be at that point, in that situation, and I also know that I adhered 100% to his wishes when that was no longer his choice.

Best,
Laurie

 

[jonico]

W,

Sometimes I feel consumed by regret and guilt, and I am going on seven months out. But mostly now I don't...it is getting better. I looked back at my notes from my conversation with my Hospice grief counselor at about the 1 1/2 month mark. As I shared some of my regrets and rather profound feelings of guilt with her, she told me that in our grief we often gravitate toward guilt (close cousin to regret I'd say) since guilt tells us we had control. As much as we tried to control things during our wives' super challenging ALS journeys, we weren't in control. ALS was in control.

Today, I try my best to remind myself that I did my best for my wife with what I could control... far from perfect, but truly my best. I believe my best served her well. I believe she forgives me for the times I fell short, which in my mind after the fact, were far too often. My grief counselor also told me that day in December that in the early months after the passing of someone special, around 90% of our energy goes toward grief. I agree, and I can say that percentage is decreasing as the months pass. It isn't a whole lot easier, but I am considerably less consumed by the heaviness of grief, loss and regret.

My challenge is that the one person that could reassure me, who could walk me back from any ledge, who could assure me that all is okay and will be okay is now gone. So, for me anyway, I find it helpful to still talk to Nicole and include her in my life. I've asked her, out loud, to forgive me for the times I let her down. I have also told myself, out loud, that I forgive myself. When the regrets and guilt pop into my head, I acknowledge those thoughts and then I shift the narrative and my thoughts to the things I know I did well. To be fair, there were many. My grief counselor told me that from all I have shared with her about my wife's and my life together, she is certain Nicole forgives me for my shortcomings... especially in light of the tremendous trial that is ALS. And, knowing Nicole, I agree.

I can tell you were an amazing, caring husband and caregiver. Wishing you peace in your grieving my friend...Jon

 

[affected]

Oh Jon, that really rang true with me - guilt tells us we had control.
I do feel that is where coming to as much acceptance while you are a CALS really does help you move through the grief without significant guilt afterwards.

Thanks for putting that so well.

 

[Jrzygrl]

Flashbacks and regrets? Me too.

Before ALS, I always felt that I really didn't have any regrets. ALS changed all that. I think back about the things I could have handled better. How I wish I could take some things back. I have to console myself by realizing that I did the best I could under the circumstances. It's been about 20 months since I lost my husband. A dear friend gave me the book "Healing After Loss" by Martha W Hickman. It really helped me. I've attached a page that has helped me to try to let go of some of the guilt and regret. I hope this helps some.

 

[Weltschmerz]

Thanks to you all for these replies. Jonico, your response moved me to tears. I have to say: remembering how much was out of control certainly puts regret/guilt in its place a bit. I have a great desire to have spent more time just sitting and being together. I regret not watching more of our favourite shows and movies together but then I remember that's because of the million things ALS gave us on the 'to do' list. Your comment about not having the one person there who could talk you down really resonated, too. I have already begun to perform both sides of a conversation because I can imagine so clearly what my wife would say to me.

Similarly, Jrzygirl thanks for the screenshot - I like to imagine a higher plane and the imagery there really offered a moment's pause and some peace.

What a trial ALS was but yet also continues to be. It's been really supportive to have this forum to come back to. Thanks to you all.

Weltschmerz/Nicola

 

[Lkaibel]

I think I was you Welts, working all day, caregiver at night and all weekend and before I went to work each morning. We cannot be perfect in that situation, and yes regrets sting and flashbacks happen. I think all lessens over time.

What helped and still helps me is focusing on the good and on the love we had. Yes, there was the morning I lost it a little and I hate that memory. There was also the evening he said “Come sit with me and let’s enjoy each other”.

it sounds like you were a great caregiver. Love and forgive yourself as I am sure your wife did.

 

[ecolon58]

I am coming up to 5 months without my husband. I have all the same feelings of regret and guilt. Working and caregiving took a toll. Everyone says to me how wonderful I was, how strong I was. I feel guilty when they say that because I think of the times I lost my temper and wished I was nicer. I joined a bereavement support group and it helped me a lot. It seems that everyone does go through all those thoughts. I am trying to remember the good parts, the times I took care of him and did everything I could for him. It is not easy. I miss having that person that will say, everything will be OK. Sometimes when something happens I feel like I can't wait to tell him and then remember he's gone.

Maybe some day I we will feel worthy of the compliments when people tell me I was amazing . Not there yet, but I know I will get there. Grief is a process and I have to go through it and learn a new normal. I also feel that I grieved during the whole process, one by one when something else was taken away, arms, legs, voice. ALS is a horrible disease! I pray they find something someday that can at least explain it. Good luck to you all on your journey.

 

[ARCG]

I so hear you, it has been 6 months for me and I have all the same feelings. Hope and pray they find a cure for this, it is, as you say, such a horrible disease, and I miss him every day and wish there was more I could have done, all the while everyone says I did all I could. But it wasn’t enough. I wake up every morning thinking he is there and then remember he is not. The grief is overwhelming.

 

[affected]

Only 6 months and the grief really is still overwhelming. I sometimes wonder how I got through it, I guess it was just day at a time