Guilt... It Hurts So Much

[R.Everit55]

I remember writing this 24 hrs before my bride went to Heaven.

"The time is near. The time when it was decided by my wife and myself when enough is enough. The time when everything has shut down and it's only her mind imprisoned in her failed body. I know her decisions and I must follow through with them. How do I do that? Her mind is still here. But she does not want to be kept alive with a machine 100% breathing for her. And that is where we are. Her own breathing function is not more than 5-10%. It's getting to be that time where if the ventilator was to be shut off, her own minimal breathing would not sustain life for her for more than a few minutes. She knows what's happening. And she knows her wishes. And she is trusting me to follow through. And I will. But not quite yet. There are goodbyes that need to be said.

She so adamant about not letting her linger. But for me, it's like I'm killing her if the machine is removed. Because her mind is not gone. She knows . She is imprisoned. But once her breathing is totally at 0%, she won't last long. But she doesn't want to just linger like that until she passes.

This is all heartbreakingly conflicting."

And now I wonder, how could I take her off the vent? How could I give up on her? How could I play God and decide that six months ago Jan 9th I would remove her from the machine? Yes it's what she wanted... She didn't want to just linger there. But how was it my decision to make that night? It's like I gave up. I killed her. I gave into the ALS. Why am I feeling this.

I am sorry I made that decision. I hope she didn't think I gave up on her. Even though she knew and it was her wish. Dammit... Why????? I want to rip my heart out.

Comfort is not something that is with me right now. For I don't know if I did the right thing. I don't know if I comforted my sweetheart. I don't deserve comfort. She could have been kept alive. I maybe shouldn't have listened to her wishes. I should have given her and us more time.

I'm sorry if this doesn't make sense.

[KATPILOT]

No my friend it does make sense. There is no way one can walk away from such an event clean and without second thoughts. Just not possible.

The truth is and always will be however that it wasn't you that made the choice nor was it you that put this whole plan into effect. One day you will realize this simple truth and be at peace. It just takes time and almost all of us have gone through that "what if". One of the most important phases of grief is guilt. It's just part of the journey, a sad, anguishing journey.

Stephen

[Froggie4635]

We all know that we would have done anything for our spouses. I never thought that I would have to perform CPR on my spouse. While it was happening, it was pure adrenaline that kept me going (and the 911 operator who helped me to stay focused). I went through a period where I questioned my choices...did I act quick enough, did I take what Mark said seriously when he said what he was feeling was different than what he felt before. We know we would do anything for the ones we love, but how many times did we ever REALLY think we would have to take extreme measures to ease the pain of our loved ones? Just talking about it takes me right back to that day, those minutes when Mark was struggling to stay alive. I watched as the paramedics did everything they could do...for over 40 minutes. At that time, I did not realize it was a battle they were not going to win. You followed the wishes of your wonderful wife...who knew she could trust that you would do for her what she wished. She needed her suffering to end, but she also wanted yours to end too. Our loved ones would rather have pain, than to see us suffer in pain (of any kind). I would give ANYTHING to have Mark back; to have my life be as it was before this horrible experience. But it is not a choice I have, so I must honor his life and try and find mine again. Please be gentle with yourself and know your precious wife watches out after you and loves you just as deeply. She knows how brave you were during the whole event, whether or not you think you were.

[R.Everit55]

Stephen and Maryann... Thank you.

Maybe it's the six month mark later tonight that is eating at my heart. I have the guilt. I have the what if's. I have the anger at all that ALS slowly stole from my bride. But I was reading my first post the day following her death and the undying love and honor between us six months ago. I will never forget those last moments of pain, calmness, prayer, devotion, love and so much more all rolled into one. I can feel her in my arms. I can see her looking up at me eyes meeting each other's and no words necessary. While it hurts my heart, I never want to forget those last moments. I'm just a mess today.

My heart goes out to you and your grieving hearts as well.

Butch

[Froggie4635]

Butch,

I am right there with you at just over 7 months. Go ahead and be a mess. Those last moments we had were the bravest ones we will ever experience. The thing that keeps me going is that I KNOW how much Mark loved me, and I KNOW that HE knew how much I loved HIM. When I get hit with those very hard times, I remind myself of that very thing. Be kind to you, Butch. Keep telling yourself that in those last few moments, your wife KNEW you loved her and you made it possible for her to slip from this world into peace. Our lives will NEVER be the same, but we continue to have that love we shared.

[kayc]

Most of us have had attacks of guilt or what ifs following their deaths. Guilt at this point does no one any good because we can't change anything, but telling you to let go of it would be like casting my words to the wind also! It's something each of us individually have to work through and know within our own hearts the truth that we would have done anything in the world for them and we always had their best interests at hearts. We're human, not God, we don't always know what to do, and so we act with the best knowledge and intuition that we had at the time...just the same as they would have for us had roles been reversed. And no one can expect any more than that.

I do think it's a wee bit harder for men than women, no matter how much we all loved our spouses, because men come with this built in feeling that they should be able to fix everything, and the truth is, sometimes things are beyond fixability. I hope someday you can recognize than not only in your head, but in your soul.

Yes, perhaps it is the six month mark speaking to you. You are in my prayers, dear Butch...and Mitch, and others who are feeling this way.

[R.Everit55]

Kay I agree for me at least as Mary's husband I needed to fix her. All of her ailments. But when ALS was finally figured out it was late. And it went so fast. And I knew all about it. And I knew I COULDNT fix it. I knew it was an ANGRY ANGRY disease. I just tried to love her through it. I tried so hard to believe and take one day at a time. All the while it was stealing things from her daily. I'm a mess today. I won't do PT. I asked my son to take me to the ocean. This is is where I know my bride is. It was our place. I'm crying. I am a man. I absolutely have no shame anymore in just crying. I was never a "cryer" before. I don't want tonight to be six months. I don't want it. I want one more moment with my bride. But sitting here at the ocean will have to do listening and watching the waves. If I could walk in the sand with this knee I would put rose petals in the ocean. But I will do that when I heal.

[enna]

Oh, the guilt. It is that ugly part of grief that we can't escape from. I really have nothing to add just to let you know, Butch, that this journey can't be taken alone and that is why we are here. We carry one another sometimes and other times we need to be carried. One thing I've learned about this journey is that being here helps us to know we are not alone.

Peace to your heart.

Anne

[kayc]

Yes, Butch, you'll do that when you heal...and it will give you something to work towards.

George and I spent our honeymoon at the coast, in October, all of our anniversaries were spent going back there, it has great meaning for us. It is a place to let go of all of your cares and be restored.

[R.Everit55]

My beautiful bride. She's really gone. I somehow can't wrap my head and heart around it today... Tonight. I'm supposed to just allow this journey to happen. But it feels like it is all gone backward and I'm doing it wrong. Six months ago in two hours and fifteen minutes... She left.

[kayc]

We feel for you, Butch.

[iPraiseHim]

My heart grieves with you, Butch. I'm experiencing the same thoughts, feelings, emotions. I think I should be better but I'm not okay. I miss my wife so much. I still cry almost every day now. It's hard to imagine it is almost five months since my wife died. (16th) Life hurts. No joy, just pain. It sucks. Yet somehow, through all of this darkness I have hope that some day it will be better. I can hope. I empathize with you Butch. Shalom

[LadyCarrie]

Just a note to tell you that I care, Butch.

Hugs,

Carrie

[KarenK]

Butch,

Even after 2 years, the guilt and "what if's" remain in my mind and heart. After 40 years, there was so much "water under the bridge" between us. Could I have done more? Could I have been a better wife, a better person to him. I only know I did the best I could.

In a way it happened so fast. One minute he was yelling at the nurses for me to come take him home, an hour later he was intubated due to an aspiration. We had not recently discussed "end of life", so I had to act on gut instinct supported by my son, daughter, and many doctors. Thirty years before, he had written his own DNR following the death of his mother who had fallen and become an instant quadriplegic wasting away on life support. He did not want that fate, so I chose for him as I felt I knew him so well after those many years. Still, my decision tears at my heart.

Again with my daughter 10 months later. It was not my decision to make, but so very hard to stand by and watch her suffer and not be able to call the paramedics per her wishes. Should I have insisted? It's way too late for each of them and I will NEVER know if I did the right thing.

So, I completely understand your feelings and anguish. I send strength and love to you to somehow move forward.

Karen

[feralfae]

Dear Tribe,

I still have some overwhelming "what if" moments when I think that somehow I should have been a better wife and caregiver. Yet I know, deep in my heart, that I did as well as I could under the stress and grief and impending loss. We each did the best we could for the most precious person in our life, who abides with us and shares our spirit.

I do believe that we each did all we could. We gave from our hearts, and we gave from our love. And I am sure that Mary, Doug, Jim, Pete, George, Bill—and everyone else who has stepped away for a while—know, with their perfect love for us, that we will heal from this guilt. They have no anger toward us. No sadness. Only Love. They simply hold us with love and as much longing as we have for them. Fortunately, it all works out eventually. It's just that the patience is difficult. Fortunately, many of us seem to keep getting nice signals that they are still around, loving us. Although Doug said, when I asked him about being two places at once, "Don't limit me. I will be pure spirit soon. Spirits have perfect free will. But so do you, of course."

I think each of us here has made a free will choice to go through this healing journey, this valley of the shadow, and each for our own reasons. We are all inspired by the Divine Love we share with our beloved. I am learning patience, clearing a lot of trauma, and coming into a new state awareness. I think that all of us come into a new state of awareness. I think it is a gift of Grace. And doing the work is the process of getting through the layers to heal our hearts at the very core as we move into a new way of being.

Butch, we are all moving together here. Yes, we are on different time lines, but I am pretty sure grief is not related to time. Grief is dimensionless. Like Joy. I wish for each of us that our lives continue to soften and bring us a greater sense of wholeness. But as we do this work, we hold each other up to the Light, and we help each other along with our compassion and support. I would not have made it otherwise. This is a luminous Tribe, gathered around Marty's healing fire. You are a part of our Tribe.

Peace to your Heart, and know that I am holding you in my heart and in my prayers.*

*<twinkles>* and Much love to you and Mary and your family.

fae

*Story follows over on

[kayc]

You are right, if George could, he would pull me to him and just hold me and all would be right with my world. This is the love we had together, and that love still is. Just as all of our love is.