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Mike, you are so grounded! Have always admired your clear headed help and analysis, and your obvious committment to the people in your life. You may think that empathy is not your strong suit, but you are so wrong. Your empathy just shows up through wisdom on this forum. If you don't think you are one of the inspirational ones, you are wrong again! ( yikes! Forgive my observations which contradict your own self evaluations!). I think Krissie was a very lucky woman, and your kids will be grounded adults thanks to your purposeful guidance and love! Think everyone here admires you and your contributions. And that's my story, and I'm sticking to it!
Thanks for sharing your way of grieving and what you have learned! As always, it's to the point, clear and beautifully said! Donna
 
Thanks, Donna. I appreciate that.
 
> Think everyone here admires you and your contributions. And that's my story, and I'm sticking to it!

me 2!
 
Mike, thank-you for sharing so openly about your experiences with grief. I was very touched to read about your life, and all you've had to deal with. You were obviously a devoted husband to your wife in her illness. I'm sorry you lost her so young. And your determination to raise happy kids on your own is commendable. You've tried to make the best of harsh circumstances for your family. Your love has been tested and proven. I was saddened to read that families and relationships have broken up because of ALS, as you've witnessed on this forum. All I've found here so far is love so strong, so admirable between PALS and CALS.
- Charlene
 
Thanks, guys. I'm blushing, now.
 
I have not actually experienced the grief of my husband's death, but I do have experience with many years (too many) of anticipatory grief, and it is I think similar. when my husband was diagnosed, I was in total disbelief for a couple of months and totally crying and scared and an emotional mess. then as time passed I became angry and just more weepy than crying. I had trouble dealing with anything for so long and lost weight and joy and any bit of happiness. after a while that subsided with the help of anti-depressants and time. slowly happiness came back and honestly I don't feel grief anymore. I feel like I have gotten thru it. However, I am extremely fearful of the time when I truly lose my husband. I know that every time he has a setback I get a little knot of fear and worry in my gut. I am afraid I will totally lose it again and have to deal with it all over again.

I really want to have closure on grief after he is gone, I really want to move on with my life and not have it hanging over me. I want to find happiness again, real happiness again, and love again. I don't want to cling to the ghost of ALS and what it did to our family. I know that is what my sweet husband wants for me too, and if our roles were reverse, what I would want for him.
 
Its interesting Barbie, your point of view. I too would like to find happiness, love, companionship but I have no desire to be marrried again. I don't believe that will change. So many things in my life were firsts with my husband. We have been married 26 years.....it isn't about replacing him or anything like that. I have just cherished our life and can't imagine being married again.

I have also gone thru a similar grieng pattern, my son also. I think in the end it will be a relief for us. We love STEVE dearly but seeing this disease and the destruction is so brutal.
 
so true Steph. some times I wonder what my family would have looked like had he not gotten sick...not just him but me and the kids. in some sick way, the whole experience has been good for me. I am much stronger, confident, and together than I was before. I completely relied on him as my rock before, now I rely on myself. I wish I could have learned this without losing him though!
 
Steph, barbie...thanks so much for the honesty.
I have been assured by the specialist that whatever is wrong with me, it isn't fatal, so I truly can't and won't 'compare' my situation to yours...however I do often wonder about my kids. Would their confidence be greater if they weren't embarrassed by my stick, boot, wheelchair...
Carrah's school bus passed me on the street the other day, and some random kid asked her 'why does your mum need a scooter?'
I think I was more surprised that this stranger knew I am her mum than by her response.
She turned her back and didn't answer.
Would they be as willing to help around the house, would they know how to put a load of washing on...would I know how much they love me?
That is the main silver lining to all this.
God bless, Janelle x
 
Barbie, that was my little epiphany - I went through all that grief stuff while Chris was alive. Sure your hubby has not yet died as such, but each loss is another little death and we grieve each one over the time of being a CALS.

For me the grief after death has been quite different to the grief of each loss before death.
 
Yes, Tillie, that is what I am afraid of.

so afraid and dreading it so so much
 
I will be with you all the way Barbie now and after xxx
 
The 5 Stages of Grief and Other Lies That Don't Help Anyone

The stages of grief were developed by Elisabeth Kubler-Ross over 30 years ago, as she listened to and observed people living with terminal diagnoses. Since the publication of her book On Death and Dying, the "stages of grief," as they are known, have become the gauge by which all grief is measured. What began as a way to understand the emotions of the dying became a way to strategize grief: The griever is expected to move through a series of clearly delineated stages, eventually arriving at "acceptance," at which time their "grief work" is complete.

Denial, anger, bargaining, depression, acceptance.

I bet you know what the stages are, even if you don't think of yourself as much of a psychology-type person. The stages are taught in introductory college courses, and were taught back when I was in hospice training. The stages are taught in grief and loss workshops. They come up in pop psychology and in clinical, scientific studies. The stages of grief are everywhere.

This means that many people, even professional psychologists, believe there is a right way and a wrong way to grieve, that there is an orderly and predictable pattern that everyone will go through, and if you don't progress correctly, you are failing at grief. You must move through these stages completely, or you will never heal.

This is a lie.

Death and its aftermath is such a painful and disorienting time. I understand why people -- both the griever and those witnessing grief -- want some kind of road map, a clearly delineated set of steps or stages that will guarantee a successful end to the pain of grief. The truth is, grief is as individual as love: every life, every path, is unique. There is no predictable pattern, and no linear progression. Despite what many "experts" say, there are no stages of grief.

In her later years, Elisabeth Kubler-Ross wrote that she regretted writing the stages the way that she did, that people mistook them as being both linear and universal. Based on what she observed while working with patients given terminal diagnoses, Ms. Ross identified five common experiences, not five required experiences. Her stages, whether applied to the dying or those left living, were meant to normalize and validate what someone might experience in the swirl of insanity that is loss and death and grief.

The stages of grief were not meant to tell you what you feel, what you should feel, and when exactly you should feel it. They were not meant to dictate whether you are doing your grief "correctly" or not. They were meant to normalize a deeply not-normal time. They were meant to give comfort. Ms. Ross' work was meant as a kindness, not a cage.

No matter how much the woman herself regretted the misuse of her stages, they are firmly embedded in our cultural ideas of the right and wrong ways to grieve. The stages are used as a corrective reproach, the process of grief turned into a race: Even the stages themselves are not meant to be lingered in. If someone is identified as being in a stage (especially a messy one, like anger), they need to "get through it" as quickly as possible so they can move on to the end goal of acceptance. Conversely, whatever stage someone is in, they must stay there until they are done, otherwise their grief work will suffer.

For your sake, and the sake of those around you, you must do your grieving fast, do it correctly, and be done.

Except that this isn't how grief goes.

Grief is the natural response when someone you love is torn from your life. It is a natural process: a process of the heart being smashed and broken open, of reality shifting and hurling in place. It cares nothing for order or stages.

The truth is, you can't force an order on pain. You can't make it tidy or predictable. The stages of grief are a net thrown over a fogbank -- they help neither to define nor contain.

To do grief "well" depends solely on individual experience. It means listening to your own reality. It means acknowledging pain and love and loss. It means allowing the truth of these things the space to exist without any artificial tethers or stages or requirements.

There is no set pattern, not for everyone and not even within each person. Each grief is unique, as each love is unique. There are no stages capable of containing all the experiences of love and pain. There are no stages of grief.

If we take away this bedrock, what remains? What do we do without those landmarks?

Here are some things to remember:

• There is no finish line. This is not a race. Grief has its own lifespan, unique to you.

• There is no time when pain and grief are completed; you grieve because you love and love is part of you. Love changes, but does not end.

• What will happen, what can happen, as you allow your grief, is that you will move differently with pain. It shifts and changes: sometimes heavy, sometimes light.

• Anger will happen. So will fear, peace, joy, guilt, confusion, and a range of other things. You will flash back and forth through many feelings, often several of them at once.

• Sometimes you will be tired of grief. You will turn away. And you'll turn back. And you'll turn away. Grief has a rhythm of its own.

• Grief can be absolutely crazy-making. This does not mean you are crazy.

• There is no way to do grief "wrong." It may be painful, but it is never wrong.

Remember that there is no "closure." Grief is part of love, and love evolves. Even acceptance is not final: It continuously shifts and changes.

The truth is, you will seize up in the face of pain and soften into it, again and again, both things in rapid succession, and both things with silence in between. You'll find ways to live inside your grief, and in doing so, it will find its own right place.

Your love, and your grief, are bigger than any stage could ever be. The only way to contain it is to let it be free.

As Ms. Ross said in the last days of her life, "I am more than these five stages. And so are you."

Megan Devine

This is an amazing post. Thank you so much for sharing. We've become a society that pathologizes even the most fundamental of human emotions. If we don't follow the script then we are diagnosed with some sort of mental defect that requires treatment and/or medication. Grief is a very individual experience, as is dying, and the notion that there's a liner/universal methodology to it is offensive to me. Yes, there are times when it becomes overwhelming and we need to seek help but there are also times where feeling the enormity of loss, sorrow & despair are actually part of the healing process. Your post sums it up just beautifully.
 
I agree with the comments that for some of us grief starts at diagnosis. I started grieving the day my partner was diagnosed. When we are in the middle of a mundane task such as making dinner I can't help but suddenly project myself in the future and picture the same scene but with me alone... It does make me value every moment but at the same time it brings immense sadness.
 
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