Wednesday, March 23, 2016

The Total Grief Rant......(not a quilt in sight)

Easter 2015
My love was dead a week later..
I am struggling.
In these pictures, he is totally paralyzed but his right hand and his face.
 His neck is in a brace.
He has a feeding tube with Morphine and Ativan and food.
His skin is itchy.  He has a catheter.
He is wearing Depends. His limbs have to be massaged and stretched.
 He is prone to blood clots.
He is freezing in the hot Easter sun.
His diaphragm is impaired leaving his breathing weak, his voice is a whisper,
his swallowing is difficult
His mind is clear.
I love him and I am helpless.
ALS/ Lou Gehrig's Disease/ Motor Neuron Disease/ Hell
Watching someone you love go down paralyzed with this disease,
 is almost too much to bear.
No one wants to hear that the grief struggle still sucker punches you a year later.
No one wants to hear the grief and anger and betrayal..
Folks want you to pretend to be ok.  It is far more comfy for all.
Suck it up, pretend, be positive.. You are so strong!.

But, the healing is really in the talking.
Thank God, I have a few friends who are able to listen to my pain.
They know that the suggestion box is full.

I understand folks are busy with their own lives....good friends drift off into acquaintances..
More abandonment..
I understand that we are all alone.
I feel like going back to M&Ms and red wine.
I feel despair.


MariQuilts said...

I have never forgotten your words that there is anger in grief. I think of you often.

ES said...

You are opening up my mind and my heart. You're educating me and I hope to be more understanding to those close at hand. X

Michele Bilyeu said...

Grief needs anger to get it out, I think. Otherwise it wouldn't be one of the healing steps. Anger is so powerful in its own way. It is a catalyst and an impetus and a force and energy to project the absolute unfairness of ALL of this. To you, to your kids, to your grandkids. And at the bottom hard to talk about but still there..not just how unfair this happened to him, But yes, now he's abandoned you and left you with this huge mess and dang it you're doing the best you can and it's never enough. And dang, I am feeling this with you and I am here feeling it for you and that's going to have to do as we all come here to share and feel your pain and just hang out here with you the best we can.Sometimes 'just sew' isn't enough but it will be any time now for just a minute, just one sew.

Unknown said...

Hugs and prayers from someone who's there!!!

Unknown said...

Hugs and prayers from someone who's there!!!

Karen said...

You are educating me as well. When people look like they are doing well, when they look competent and in control it is easy to believe it is so. I will try to not walk away from friends who are suffering but who try to minimize it so as not to "bother" me. I guess that is why support groups are so popular but for a disease like ALS that is not common, the groups are probably mostly just online. The care you gave him was amazing and you turned a horrible disease process into the best it could be for him. I hope that gives you some comfort hugs to you.

Karaquilts said...

Write on. Talk on. we will listen. and walk with you. It is a lonely place for all of us, but keep reaching out and we will reach back. My first waking thoughts today were of you and how hard these "anniversaries" can be. No platitudes, just hugs.

smazoochie said...

You make us sound so hard-hearted. We really aren't, we are just naive. Many are blessed to not know the heart-break, loneliness, fear, anger & plain old grief you are going through. We may think that the first year is the hardest & on the 366th day, you will wake up as your old, pre-grief self. You are educating all of us. To the grieving, self-centeredness is hard to tell from selfishness, delicacy of feelings is hard to tell from indifference.
But I suspect your anger was not at your friends, but at that horrible disease that took you dear man. Rage on, that is righteous anger. And talk and write and communicate, because we are listening, we are learning.

Holee said...

There is no way to really explain it Diane. It's been since 1997 that I lost my son.......and all those people who I thought were family and friends. One by one they left, unable to listen and allow me the healing of talking about it. The very last thing I wanted to be was strong. I wanted and needed someone to hold me and let me be weak, let me have them be the strong ones. But as you know, that doesn't happen. Instead they spend a little time telling you to get over it and when you don't and you don't jump back to being that old fun person, they leave. Thing is, sometimes that love was so strong and beautiful that you are never the same person and why should you be? You are missing a part, a part that was you, that made you get up each day looking for that voice or hand to start your motor. At some point you'll stop calling it grief and start calling it life, your life, your memories. It's all those memories that'll keep you going to raise those kids. Only you can have the memory of touch, his touch of love. Remember, he too was angry that he had no choice but to leave you with that big responsibility. I'm still here and I love to listen to you and when you are stricken down I often hit bottom with doesn't hurt to let yourself fall apart every so often, it actually helps you to pick yourself up and go on. I do know that even with all that was wrong with him, he enjoyed seeing the kids have a nice holiday. Just look into his eyes. I'm here, just a little weaker this week from the radiation but if you need to talk...I'm here.

Rachaeldaisy said...

You need extra big hugs today OOO. You are in my heart and thought even when I'm slow to check in on what you're up to.

Bonnie said...

My friend, I just happened up on your blog. I have found that grief comes in waves...some days you feel like you can barely keep your head above them, and some days you just can't tread them at all. Hugs to you...keep on talking...

Rhonda said...

I lost my husband 33 years ago & did a total personality shift. People hardly recognized me anymore. I say talk, scream, rant all you need to. Then get thru the next minute, hour, day scratching your way forward at "your" own speed! My thoughts & prayers are with you!!

Alcea Rosea 31 said...

Grief does not stop and no one can tell you how to deal with it. Finding the right words to convey sympathy and understanding often sound contrite. We are listening and wishing that we could elevate your pain and anger. We feel helpless to make a difference to your suffering.

Patsy said...

Hugs to you even though we've never met. Wish I had some words of wisdom but there are none, just a long distance hug from a stranger.