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sad news

jas1973
Posts: 15
Joined: Feb 2015

I'm sorry to bring more sad news to this group.... so many of you were so helpful with your support and advice. My mother passed away on June 11. this is the first time I could bring myself to come to the board again sice her passing. Mom was in so much pain,the cancer spread to her spinal column and she couldn't bear the pain anylonger. She placed herself in in hospital hospice care to get the pain managed...sadly, her pain wasn't manageable even there... it was a completely horriffic experience for her and our family not being able to help her....for all of you out there suffering from this awful disease  please be or have a good advocate for you... we thought they were helping my mom until after 5 days of no pain relief and continuous large increases of the same pain medicine" dilaudid"  she became toxic and went into severe convulsions and untreated fever for over 12 hours before anyone on the hospital staff finally did something... she was overdosed and then put on a steady drip of methadone to counteract their overdose....mom was unable to communicate after the awful event and she was finally able to pass away in peace 3 days later....   I left my father alone with her the awful night when the convulsions started and I'm so sorry that I did, because the nurse told him that this was part of the dying process and natural... she never came back in the room and my dad trusted them and he said it was the worst thing he has ever seen in his life...when I arrived in the morning all hell broke loose, I was on the phone with drs and hospice management and suddenly, my mom began being treated for her "overdose" one very helpful nurse packed her with ice and also she was the one to get the pharmacist involved to do something to counteract what they had done to her.... it wasn't until 1030 am that a dr finally showed up and explained what they needed to do now.... the dr who gave the directions to continue the high  increases  came in and the only thing he had to say to me was that he was" board certified" and that" dilaudid is 7 times stronger" .... morphine was the only drug that helped moms  pain, and they chose to give her dilaudid instead, which they saw in the emergency room did not work for her... not every patient reacts the same with pain meds.... I wish I knew all of this... we all trusted them and my mom suffered so badly.   I pray no one ever suffers again from the lack of listening to patients and their families.... our experience was so awful...we will have a complaint and are asking for inquiry at hospital... moms admitting dr apologized to me. He was unaware of what had taken place after he admitted her because it was a long weekend... all of the hospital administrators and  hospice managers apologized for what had happened....moms pain was supposed to be managed then she was to have been sent home to live out her days on hospice at home.... this never was to be....all of us were so glad when she finally was at peace and no more pain can ever hurt her again... its hardest on my dad and we are all doing our best to take care of him now. He is even letting us.           Im sorry to post such awfulness in some details, but I just never want anything like this to ever happen to anyone else. Please know if pain meds aren't working there are others they can try instead of continuing to increase only one medicine until dangerous effects happen.   

I'm also so sorry about finding out the recent passing of Neil and DJ....they both were truly inspirational...I read and learned to much from this board and what they wrote...

I know that what happened to my mom is not the norm. I'm sure it doesn't happen everyday, but our family truly never want anyone else to ever go through such an ordeal. 

Love to all of you fighters and survivors and loved ones dealing with this...god bless you all ... I'm praying for each of you 

Julie

 

 

angec's picture
angec
Posts: 923
Joined: Mar 2012

Julie, so sorry to hear about your mom and all that she and your family endured!  I don't understand how they can say convulsions are a normal part of the dying process. I certainly hope you do obtain counsel and make them pay for what they did. Thank you for sharing your story with us. There was no way that you could possibly know that this would have taken place, please don't blame yourself.  I pray you and your family can find peace.  Knowing that mom is not suffering anymore and no one can hurt her again.  Sending big hugs to you and I hope the God of comfort will give you peace.  XXOO

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I am very sorry for your loss and the horrific pain your mother and father endured.  Whan an awful series of events. 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Julie. So sad for you and your family and so sorry for the loss of your  dear mum. I am appalled with how badly they treated her.

Praying for peace and comfort for your family. Thankyou for sharing so we will be more aware how to advocate for our loved ones.

HugsCry xoxo Melissa

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

Very sorry to hear about your mom... Wish you and your family strength to go through this terrible experience

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Julie, I'm so sorry for your loss, I hope you may find peace knowing that your dear mom isn't suffering anymore.  please don't blame youself for the last night, no one knows what's going to happen.I'm sure you did all you could.

Forough

 

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Julie,

Mom's never want their kids to suffer so do not blame yourself at all.  I am sure your Mom would want you to let it go.  She would probably wrap her arms around you with a big hug for all that you and your family had to endure. You did the best you could with what you had to work with at the time--that is all any of us can do.  God bless you and your family.

Arleen

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Julie,

     I am so sorry about your Mom.  But I am glad there is no more pain for her!

                                                 God Bless,

                                                  Brenda

APny's picture
APny
Posts: 1947
Joined: Mar 2014

I am so sorry to hear about the pain and suffering she endured and you and your family had to witness. Words truly fail me. I'm just glad she's at peace now.

Srashedb
Posts: 482
Joined: Dec 2013

Julie:

all I can say is how sorry I am for this dreadful experience; may the passage of time ease your pain.

there was a time when my husband had intense abdominal pain that copious amounts of drugs could not touch; there was a constant experimenting of combinations of drugs. No convulsions nor was this a dying process. Your mom's treatment was horrific; severe spinal pain could have been eased with a block but now, all that can be said is that her pain is over.

so very sorry for you and your family.

Sarah

 

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

That is so sad Julie. Thank you for sharing on what to watch out for. Hugs to you.  That is really heartbreaking :(

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Julie, I am so sorry for your loss. What your mother went through is heartbreaking, to say the least.

It is scary that it can go this badly. I know the Dj didn't react very well to morphine, and yet they insisted that this was all she could take....Neil even stepped in and gave her advice on this.

This is all so hard, my heart is hurting for all of these losses.

Take care of yourself, Julie. Thank you for sharing with us.

Big hugs

Jojo

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

The bitter end is so difficult on those close to the patient.  Regrets that she and the family had to endure so much.

What better way to emphasize the need for a family person to be involved, and vocal about the care being given.

When my time comes, I may suggest they drop me off the bridge into the bay, as I hallucinate terribly on morphine and it's derivatives.  Gallows humor, I know, but it's a reality to confront.

Hope your healing process moves along.

Hugs.

Donna

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

So sorry to hear about what happened to your mom. I can relate. I get very nauseous on morphine and all the derivatives and they generally don't work for me. Each time I've gone to surgery, I've asked them not to give me morphine and they did it anyway so I woke up vomiting. The last time they gave me dilatud (not sure of the spelling). I don't think it helped and I think I was nauseous as well. After my adrenalectomy, I was only taking tylenol for pain as the dilatud didn't work and was making me nauseous.

When I had a kidney stone, they tried everything and they all made me nauseous plus didn't work. I had the same experience that the doctors wouldn't listen to me and when I said I get nauseous, they said not to worry they'd give me zofran. It didn't help. They tried another anti-nausea medication, and it didn't help. Finally they stopped the dilatud. I was so relieved. I'd much rather have pain than the nausea.

It's sad this doctor didn't listen. Your mom shouldn't have had to put up with this.

Wishing you and your family the best.

Todd

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is saddened. One thing we do here is share our victories and losses. Everyone cares. So sorry.

I am alive
Posts: 316
Joined: Jul 2012

Julie,

 I am sorry your mother suffered so much, and I am sorry for your loss. Thank you for providing us with all the gory details of her mistreatment because we need that knowledge. We are forewarned. I am wondering if you could tell us the name of that hospital so we know to stay clear of it. So many hospitals are poorly run and actually have bad reputations in the medical community, but we patients are never privy to that insider's knowledge. 

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

So sorry for all you and your mother, father have been through. No, hospice never works like that.
I worked in hospital hospice, homes and nursing facilities.

Hope you can heal yet get the answers you deserve.
Please take care of YOU!!
Your mother's spirit is all around.
Well, that is MY belief.
My mother appeared to me in a dream..it was so wonderful!

Sending you healing, caring hugs,

Jan

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