Giving is hard

[R.Everit55]

I will tell you all that I read daily here so many posts.  yet for some reason I still have immense trouble in posting replies to you wonderfully beautiful people.  It's like even after 17mos since Mary passed I still rarely find the words for my own grief so it's hard to find words to give to others for some reason even though we all share the same heartache.  I think I'm stuck in anger.  Not at anyone.  But at the disease, ALS, that robbed my bride of so much then took her away from me and my family.  It's crazy to be angry at a disease.  That disease can't talk back to my anger.  So it festers in my soul and I'm sure that's contributed to my depression and health issues.  

ALL of you here are such beautiful people undeserving of this grief we share.  

Butch

[Gwenivere]

Finding words is hard.  That you have found where to direct your anger is a very positive thing.  I still sometimes get angry with Steve, but it was the disease that ruined our life together.  I often think the diseases are the cowards because they take and won't face us.  All we are left with us turning to others that can relate and thank gawd they are here!

[R.Everit55]

Absolutely Gwen, the diseases are so cowardly.  

[kayc]

Butch, I lost a friend, Dennis, over a year ago from ALS.  It's a horrid disease, I can understand being angry with it.

[enna]

This is tough, Butch. To be angry at a disease almost seems silly but it is not. After Jim died, I spent months cursing the word Alzheimer’s disease. As you said, your anger wasn’t with your Mary nor was my anger at Jim. It was what finally took their lives. 

My grief counselor helped me with this by allowing me to express my feelings of how unjust it was for someone like my wonderful Jim to be stricken with the disease. I think I used the word why so often that she made me promise to remove it from my vocabulary. There is no answer for why.

You do not have to be concerned with finding the right words to help others at this time. We are here for you and that is what matters. This forum isn’t about if you can help me then I will help you. The forum has always been about being here for each other. Being active listeners is so healing.

One thing you may not see is that you are helping us by sharing your pain and joy. You have inspired me by your determination to keep going and by sharing with us those beautiful pictures of Gracie. 

Anne

[KATPILOT]

Cancer is an organism. It grows and often kills. I can hate that. I do hate that and always will. I try not to hate as much because my wife so disliked that word. I just can't help this one.

Butch you have helped so many here if you realize it or not. There have been many times when your spirit has rubbed off on us and endeared us to you and your family. Your loss along with ours is the glue that sticks us together.

[kayc]

Butch, you and your family are amazing, and I think you give whether you know it or not.  It's not something you "do", it's something you "are".  And you've given back to us by sharing Gracie, we've seen an answer to prayer and it's made us all smile.

[MartyT]

Well said, Kay ~ thank you!

My dear Butch, you are so NOT alone in hating the horrid disease that took the life of your beloved Mary. One of our more articulate members is Harry, whose dear wife Jane died of NET cancer. He established a foundation in his wife's name (Walking With Jane) and has written extensively about his reactions and what he has done with his anger.

See, for example,

Voices of Experience: A Toddler In the World of Grief

Voices of Experience: For Those Whose Grief Is Relatively New

Voices of Experience: The Ring

Voices of Experience: Growing A New Heart

[R.Everit55]

Thank you all so much.  

Marty I remember Harry.  It's been a while since I've seen anything from him.  Hope he is well.  Thanks for the links.  

[Patty65]

I will go look at your articles, Marty, thank you.  My anger is sooooooo directed at Hospice.  And its not the people, it's not even the institution (I don't think).  I think it's the place.  Yes I had grievances at certain things that happened during it all, as I wrote about before.  But in general, I could never hold on to anger at an individual, in fact, anger is something I just don't (usually) EVER have.  An emotion I've always struggled with (finding in me).  

I am not even angry at cancer (why, I don't know, it's evil)...  It is at that place.  I don't know how to unravel it to take any of the heat off of it.  I hate that place with such a passion I'm crying (at work) just writing this.  Theoretically I know it is more that I hate what happened there.  But I have no way to translate that from the hatred I have at that PLACE, that house, every inch of it burned into my memory that I seethe at.  The place I lived, slept, ate, fed him, everything. The entryway, the living room, the hallway, our room, the patio... the faux brown fake wood floors, the "modern comfort" - EVERY detail I hate.  I even hate how they have all these bright exterior lights lighting up every inch of the property that I drive by twice a day in darkness, once on the way to work, and once on the way home.  It glows in the night for me to see, only its roofline showing above the cinder-block sound barrier wall between the road and the house.

Also, if I get a letter from them in the mail, so far an invite to something and two surveys, I get SO SO SO angry.  If I see their logo on a letter. I live in fear that a staff member will come into the shop when I'm out front, in that uniform. Anger is foreign to me, so foreign.  I just don't understand it, and as you said Butch, it is probably bad for me physically and otherwise...

 

[Gwenivere]

Patty, I had the same reaction to the hospital that did Steves surgeries and then turned thier back on him because his wasn't a success they could claim.  I got so furious I spent months getting off thier mailing list because just seeing thier logo tore me up.  That they had the nerve to ask for donations enraged me as Steve participated in clinical trials for them.  He let them use his body and now they want money from me?  I am now having a problem with the hospice people and a mistake they made.  I don't see these institutions when I am out, but they are in my head when I think of all Steve went thru.  I want to settle this last thing with hospice and shut them both away forever.  Thank gawd there are other hospitals as the thought of me needing them would be too much.

[Patty65]

Hi Gwen,

Yeah, I can totally see that -- cus so much of what he went through was in those places. I hope you can get Hospice out of your life and never have to think about them or the hospital again!  Maybe maybe part of it is the hope that we held that got so decimated? But for you, turning their back for a statistic -- that is the epitome of unforgivable and I've heard that before, the pinnacle of an example of what's wrong with our Health Care.

We have one - and only one - hospital on the island.  It's called Maui Memorial, and Ron and I used to call it Murder Memorial. We used to tell people, if you have health issues, DON'T move to Maui!   It's just not good.  That's why my friend was shocked when I called her and told her I just called 911 for Ron, I vowed I would never bring him there, but I had no choice in that moment.  They took my gall bladder out when there was nothing wrong with it (it was kidney cancer they had missed), they left an IV wide open on me, my best friend's son got brain damage at birth there, on and on.  And I do hate that place too.  I usually do catering deliveries, and when some hospital staff there ordered from us, I sent someone else.  I hate that place too.  But it doesn't compare to this other hate.  I couldn't imagine this level exists, or that I could hate more than I hate the hospital.  But this is off-the-charts-double-down hate.  From me, who has always felt legitimately puzzled when someone says "that must make you angry".

Patty

[kayc]

Wow, the medical mistakes never cease to amaze me.

[Gwenivere]

That really is hard, Patty, not having other options.  Being dependent on a place you already know is not a prime provider.  And to have that reminder daily, wow.  I hope you can find some way of releasing that justified anger and dont ever need to go there yourself again.  Do others on the island fly or boat to another island?   I guess emergencies, tho, would make that tough.  I'm so sorry you both were stuck with that place.

[KarenK]

I held onto the anger at those that caused Ron to suffer unnecessarily and hastened his death as well as the horrible Hospice in Kentucky that allowed my daughter to suffer a horrible, painful death. I held onto that anger for a very long time. The thing about anger is that it eats you alive, especially when you can't change the end result of what happened. So, somewhere along the way, I let it go. I often wonder if I will ever find any semblance of happiness again. Ron has been gone for over three years now and next month will be two years since I buried Debbie. My life is filled with an unending sadness which never abates.

[R.Everit55]

Karen I guess at some point I'll let the anger go because it festers and I've had heart attacks and surgery and who knows the anger may have contributed it certainly causes depression.  They say depression is anger buried inside.  

I'm sorry you lost your daughter too.  I never lost a child that lived.  My wife and I had twin girls stillborn and our granddaughters only lived days.  

[Patty65]

2 hours ago, Gwenivere said:

Do others on the island fly or boat to another island?

Yes, I had my cancer surgery at a very good hospital on Oahu.  They took out part of my kidney.  Anything serious, anyone here says "can you go to Oahu?"  When Ron was in the ER, I had a screaming fight with the Doctor to get Ron to Oahu.   Because Ron didn't want chemo, the Dr didn't think they would approve. He finally agreed to "recommend" to the Kaiser people, and he got approval.  But he told me that if Ron went to Oahu, he would probably not ever make it home again.  And I would be in a strange place, no support, and I would have had to shut down the business, and lose my teaching job.  I did not believe he was going to die. I did not want him to come out of it to a failed business that was our whole life.  How crazy is that. So after he got the approval, I ended up having to make a split second, on the spot decision to have him stay on island. But in the hospital, they put him on DNR, which I again had a screaming fight about. The dr. said he had to be if he didn't want chemo.  "I don't want this place making a mistake and killing him and not reviving him!" I had screamed, spewing out all the things that I could think of about the hospital.  It wasn't pretty.   He was in the hospital from Friday till Sunday, then Hospice for the 23 days.  Hey, maybe that counts as anger. Thanks for listening.  It all just swirls and swirls around with nowhere to go most of the time.

[KATPILOT]

I'd say it does. You certainly have the right to be angry Patty. You are also right about how it has no where to go because there are no answers. We can keep asking why because you want things to make sense but in the end, Ron, Kathy. and everyone here's lover are still gone.  I know for certain that two things that happened in Kathy's battle with cancer may have contributed to her death.  Oh there were times when I wanted to go there, to let the anger out, but it's nothing like what you went through. My friends and family are all aware that if it wasn't for this house I am living in which I can never leave, I would sell everything I own and buy a cardboard shack on Maui. With that hospital being your only choice, it makes not being able to live there easier to take. By the way, my prime directive is to see to it that Kathy's ashes get to Hawaii. So when I am mixed with her, I guess I wont need to worry about hospitals.

[scba]

After my boyfriend passed, I lived with the feeling that the virus that caused his death was still here, the virus was still "alive", that it was me and it, here, face to face. Then, I felt as if it was living inside of me, no symptoms of course, it was like an entity living inside of me. Of course this was not real at all, it was all produced by anger I think. I will never forget this strange feeling. I was crazy too at the disease, at the virus, I was angry at many more things that cannot be seen, such as destiny, love, God, fate. To say that I'm not angry anymore would be lying, it comes and goes.

[KATPILOT]

Yeah it does.

[R.Everit55]

I went through a time of sort of being angry at God but I stopped myself from that because my faith was the same faith my Mary had and I know he is holding her and she is holding two little ones and two granddaughters.  It's just anger at ALS.  Not for just taking her.  But slowly taking her ability to walk talk see move etc... And taking her dignity not being able to go to the bathroom on her own.  None of that was her fault.  I don't hate anything but I hate the disease for all it stole from her.  

[MartyT]

Lots of suggestions for coping with anger, along with links to related resources at the base of this article, in case anyone is interested: Is Anger One of The Stages of Grief?

[R.Everit55]

Thanks Marty. 

[kayc]

There's nothing wrong with feeling angry for a time, how could we not?  Not so good to stay there though...it doesn't change what happened, all it seems to do is hurt ourselves...UNLESS we can channel it into change so that someone else doesn't have to suffer this.  I wasn't up to the fight, like some are, but I DID talk to the doctor and extracted a promise that he'd never again withhold referral to a specialist when it's needed.

[R.Everit55]

Sadly I think some of my anger caused some of my cardiac issues.