Does anyone have any constructive advice for someone who has PTSD after witnessing her mom die in a Hospice in a hospital setting?

Putting my mom in Hospice was THE worst decision I have ever made. She suffered tremendously...screaming out in pain while unconscious (if that makes any sense). The staff said they have never heard such screams. I, her daughter, stayed with her day and night...pulling two hospital chairs together to lay in. I was scared to leave my mom's side because I kept having to get the staff to administer more medication due to my mom's incredible pain. If I weren't there...she would have suffered even more (if that were at all possible!)

My poor mother died a slow, agonizing death...for 14 long, excruciating days and nights. She passed on Christmas day. It was a nightmare I still re-live over and over again...each and every day and especially at night. I can't imagine the pain she was in and wonder if she weren't "unconscious" but just medicated enough to not be able to tell me what she needed.

I have tried counseling to no avail. I have tried supports groups. I have tried reading all about it and the possible remedies for same...but nothing is helping. I can't help but feel guilty for agreeing to put my mom in this horrific hospital hospice. If I had known what it was like, I NEVER would have agreed to same.

To make matters worse, when my mom passed, I witnessed the staff stuffing her in a grey body bag (which I can still smell!) and slapping a toe tag on her big left toe. For them it was just "routine"...but for was a huge ordeal. I can't stop seeing those images over and over again in my mind.

My mom showed no sign(s) that she knew I was there. There were no tears or anything. When she passed, I was standing over her bed, holding her arm (her hands were so terribly swollen and painful), singing her favorite song to her, telling her it was okay to go as we would all be okay and she was going to a beautiful place with no pain. I stroked her head and moved her hair aside. I then kissed here cheek and I witnessed her take her last breath and my surprise and shock...tears streamed down both cheeks. I pray that this was a sign that she knew I was there with her but people have told me it was "just natural reflexes". Does anyone know if this is true or has anyone experienced this? It haunts me each day to think that my mom thought she was alone, dying.

Any help or advice would be most appreciative.

Thank you.

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Certain conditions are dreadfully painful, such as bone cancer. Some screaming is pain, and some is the out of control brain reacting, and this can happen in dementia. Whatever the pain, physically or mental, it is clear your mother was suffering and I am amazed you had a hospice that did not medicate her below the level of pain. That actually is a part of their mission, and often they will come to family and say something to the effect "Your mother needs more medication. IF we administer pain meds to the level she requires it may hasten her death". Did anyone discuss this with you? Did you give them your blessing to do that?

Whatever the case was it was clear your mother was not comfortable. This sort of agony is the way people used to pass, in the home. My great grandmother died of cancer in much this way, and the word "cancer" and "breast" were not even ever whispered. The agony would go on for months. Why the family did not have more PTSD I cannot imagine, but I suspect it was because they expected this to be "the way of it" at end of life. Hospice is supposed to be the way that this is NOT the way of it.
I will tell you that while comfort is not ALWAYS possible, your experience is, I believe, unusual.
You say you have sought therapy and it has not helped. It may have been the wrong therapist for you, and you may need another. One more "tough" or one more "gentle". At some point it has to be recognized that something awful happened; something that no one can change. You can not unhear the screams and you cannot unsmell the bag, nor unfeel the lack of caring.
This note you wrote to us should go to the administrator of the hospice involved in the care of your Mom. Once that is done there is nothing you can do but be thankful your Mom's agony is over.
She would not want this for you. At some point you will have to mentally take a hold on your circular and repetitive reliving of this. You will not have an easy time of that. You will have to tell yourself "NO!" NO to rethinking it; you have relived it 1,000 times. That isn't helping. NO to resmelling, refeeling. You will have to say "I already thought about that today. The rest of the day isn't about death. The rest of the day is about life. "
Definitely get out no matter how hard that is. Allow yourself a bit of time to curl up in a fetal position and "go there". Then get up and go for a walk. Use the magical rubber band. A good snap when your mind habitually goes there, because trust me, our minds are very addicted to a path they form; they will continue to take us on the same non-productive path over and over again.
I couldn't be more sorry for what you saw and felt. Even the wrapping of your Mom seemed uncaring and unfeeling. I always let family help me if they wished to. I always, family or no, treated the person as though they hovered above me. I lost a lot of hospital gowns for them, because, against rules I let them stay on. When they asked me to teach I told them I better not mentor, because THAT is what I would teach and it was against the rules. If a dying person wanted ice cream, and the diet was low carb, that was just too bad. They got ice cream. Too late to take my license now. I gave it up finally at age 75; like cutting off a limb.

I am sorry for all you feel. Perhaps there is nothing for this but time. But I want you to begin to think of your brain as a very malleable ball of clay, one on which YOU create the path. The more you travel a habitual path, the deeper, stronger, more well marked that path becomes. Try to choose the right path going forward. It's what your Mom would want of you.
Your capacity to LOVE is very clear. Now go out and USE that capacity every day. Compliment people. Help people. Make love your path.
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Billygoat Sep 2019
Thank you, AlvaDeer.  In response to your question, I not only asked the hospice staff to PLEASE give my mom more medication as she was in tremendous pain (as they could clearly see and hear!)...I BEGGED them too!  They accused me of trying to "overmedicate" my mom!

One morning around 3:15 a.m. my mom was choking.  She couldn't get air.  I just took my walking boot off my foot as I had a broken ankle.  I couldn't reach ANY nurses so I literally hobbled up to the front of the hospital nurses' station.  When I got there, the so called nurse on staff was sound asleep with her head on her hands on the desk.  I asked for response.  I asked response.  I yelled and the nurse got up and started admonishing me for not using the phone in my mom's room!  I kid you not!  I then ran back to my mom's room, afraid of what I would find.  The nurse trailed behind me...walking at a snail's pace!  When she got to the room, thankfully my mom was able to breathe.  The nurse then told me next time it happens I would have to cyphon out my mom's throat myself and she showed me an instrument to do same!  Mind you, I'm not a nurse or even close to one!  I begged her not to make me do that as I didn't know what I was doing and could hurt my mom further!

I can tell you stories upon stories of things that happened during this entire ordeal.  It would make you cringe!

Thank you for your kind words.  I have tried to get on with my life...I promise you I have.  I just cannot get over this and just want to be with my mom.  I miss her so much and feel so guilty about how she died.  Her last wish was NOT to die in the hospital and that is precisely what transpired.
Your Mother was not alone, you were right there by her side and she knew it. You so obviously loved your Mom very much and that shows by your devotion of being there through sad days leading up to her death, never leaving her side, you are a Wonderful Daughter!

I was there with both of my parents as they passed, and yes, as sad and painful as it is to let them go, it was also a blessing, as they were no longer suffering from their terrible illnesses, and were now in Heaven, relieved from the burdens of their pain.

I am saddened and angry by the hospitals lack of empathy when preparing your Mother's body for the funeral home transport. They should have given you plenty of time to say your goodbyes and then lead you away to the coffee room or Chapel, and done all of that out of your viewing, I hope you didn't demand to stay, as of course it is very difficult to see that. Unfortunately it does become very clinical for the hospital staff, they see death every day and they do not have the emotional attachment that we have, as another poster wrote, they should be reported, as it never should have happened like that for you.

I know you are blaming the Hospice care right now, but it sounds like your Mom was in an incredible amount of pain, and it is doubtful that you could have handled that any more effectively in a home setting, they do do the best they can to manage the pain, and the fact that you were there to help monitor her was very smart and compassionate on your part, and I'm sure your Mom knew you were there helping her along the way. Your Mom may have been crying out for other reasons, and not in severe pain as you witnessed, the dying process is different for everyone, perhaps she was dreaming too. You could not have done any more for her, believe that!

Do know that in time the memories of her death will fade, and then the Wonderful memories of her will replace them, and then you try to put the pain of losing her aside and honor her by living your best life possible, just as she would have wanted for you.

Time is the healer here, grieving take time and it is different for everyone. I think you are a Wonderful person who did their very best by their Mother, and you have no reason to feel guilty at all. Losing our parents is painful, there's no way around it but time. You should continue grief counseling try to get back to the things you enjoy in life. Take Care!
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Billygoat Sep 2019
Staceyb2...simply thank you.  I'm crying as I read your beautiful response.  Already, you made me feel better.  I know logically what you say is probably true, but, I can't help feel like I let my mom, my best friend in the whole world, down by not doing more.  She didn't deserve to die that way...nobody does.

Thank you, again.  You seem like an incredibly warm, sensitive and kind individual.  I needed to hear that today, more than you know.
Your mother knew you were there. Please don’t doubt that.
Your mother is no longer in pain. Her soul is intact but her body failed her. You did the best you could.
I believe that people dying are not alone. I believe they are greeted with love from other family members or friends who went before them. Their pain is alleviated by the love I believe takes over at end of life. God shields them and angels guide them as well.
Dying is a part of living, like it or not. A body in the end is a worn out vessel for a soul that transcends time. That body is no longer your mother. Mom has gone on to bigger and better things as I am sure she would encourage you to do by continuing to live your life. Some things we cannot control - one being when we will die & that death is inevitable. She wouldn’t want you to let grief take over your life. Your mother is free from pain & settling into her eternity home.
Try to focus on the good times you had while together on this earth.
My mom passed in a NH. My brother & I prayed a while together at mom’s bedside afterwards and then left the NH to go home. I didn’t want to see her being removed & we left. But again, remember that is your mothers body - a temporary vessel for her soul, & not her essence- the best of her lives on through you & the loved ones left behind.
If your condition (grief, depression remain I recommend therapy and perhaps an antidepressant. Try to compartmentalize your grief. Set a realistic goal for yourself -for example choosing to grieve/pray at a certain time each day or taking a walk and enjoy outside when you feel your symptoms intruding in your day to day.
You’ll get through this. It does take time.
Helpful Answer (7)

Honey, you just scared the liver out of me with your response below. You said you could not get over this and you just "want to be with Mom".
Billygoat, love, PLEASE get help now. I believe you are severely depressed. I have a child who has dealt all her life with depression. I understand how hard it can be.
I hope you have some friends, and a support system, but please get help now right away. You need to be in care. I know you are so depressed you cannot see to think it will get better, nor see to know anyone can help you, but time WILL make this less acute. You will not forget it, but it will lose the sharp edges that are shredding you to pieces. Please get help. Please let them know the level of your desperation, because you are suffering suicidal ideation now.
Please. I am begging you. Reach out and be honest about the level of your need.
Can I ask you, Billygoat, if you have any history with depression? Because this piled onto it is going to be monumental right now.
Please stay in contact with us. Please get yourself to help and be HONEST about how bad it is for you right now.
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Shane1124 Sep 2019
Very well said, AlvaDeer. You have a gift with words. Your answers & suggestions help many folks here.
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You are being very hard on yourself. The hospice situation may seem very faulty to you but perhaps a certain amount of that was due to your mothers condition. I think that perhaps you should consider an antidepressant at least for a certain amount of time to help your mind process better all the emotions you are experiencing and seem so overwhelming.

I experienced watching my father die. Of course it was terribly sad and the image stayed with me for some time but now a number of years later I remember him for the life he lived. He is not defined by his death.

I am sorry you have not found any relief from a bereavement group. Perhaps you need to give it more time. The absence of grief is not instantaneous. It takes time. I found listening to others and their experiences helpful to me. I never expected a quick fix nor did I think someone else's situation could mirror my own. I just found it helpful to hear others share about their loss and the emotions they experienced. I do hope you find some outlets to process all you are feeling. Focusing on her death constantly will not help you move forward. We all have to die but hopefully we have left memories of better times to cherish.
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I have experience with hospice for my dear brother who passed three years ago. Your mother absolutely knew you were there. At just the time you were talking to her, and passed she had tears rolling down her face. This was a gift, and I do not care what others say about this in contrast. The hearing is the last to go. Your mother felt your presence and now she is at peace. The body bag, I would report this. It is not at all routine to do what they did in front of you. I am so upset with this. How cruel the person or persons were to do such a thing. Please report this to the Administration Department and to Quality Assurance. I would do it in writing and also make an appointment to meet with them. My heart goes out to you. I am praying for you to find some peace.
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Billygoat Sep 2019
Thank you, Earlybird.  I did report what transpired and actually met, in person, with the President of the hospital.  The response I got was "we sure dropped the ball on this, didn't we?"
Hearing is one of the last things to go. Your mum knew you were there. I understand and appreciate your situation. You did what you thought was best for her. I had been caring 24/7 for my dad with no support and eventually was persuaded by family and paramedics that a nursing home would be able to provide better care.

He had had countless falls there, I frequently arrived to find him struggling alone to get to the toilet. The few things he enjoyed he was routinely deprived of unless I was there to insist and ensure. Despite my wanting to remove him, my sibling listened to the homes assurances and decided not to give their consent so I was not able to.

He was left with no walker after damaging it and himself in another fall. The home was more interested in a celebration than getting one from another of their homes. So I got one from the Red Cross.

After yet another fall and despite my insisting medical medical attention was required nothing was done and he was made to walk on a broken hip for 14 days which subsequently shortened his life

there’s a whole load more - a lot worse - including not being allowed to join in Christmas festivities as no one wanted to see him in pain - yet it was apparently ok to walk past his room knowing it.

His death, as a result of their inaction took some while, and i was with him for all those days.

You can chose to torture yourself about such things or consider how much your parent knew you loved them and tried to do your best. I’m sure they would be saddened to think of you torturing yourself. Those were bad times but they are now free of the pain - be glad for them and forgive yourself - you did no wrong. When those unpleasant images come, remind yourself that she had gone by then and it was just the shell they dealt with. Focus on your mum being free, and concerned for you now, and start to live your life again.

I know my father would forgive me for mistakenly following advice “for his best”, and that I would be there with him until the end.
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Billygoat Sep 2019
Thank you for your response.  I have tears streaming down my face picturing what you went through with your dad.  That is just incredibly sad.  I'm so sorry you, and your father, had to endure that.  You were a great son to him and I'm sure he knew that.

I have tried your suggestions...unfortunately, to no avail.  All I can see (every single day and night) is my mom suffering tremendously...screaming out in pain like a wounded animal.  Even one of the nurses said "in 35 years I have NEVER heard anyone scream out like that".  Both of us could not believe the pain my mom was in.

In any event, thank you again for your email.  I will take your suggestions to heart.  You take care of yourself, too.
You are being too hard on yourself.

People react differently to the Hospice meds. For daddy, they were gentle and calming. But I have seen people who are essentially comatose, crying and tossing about---yet they were not 'with us'. Death, like life, is personal to that person.

Hospice is very careful to administer the drugs in such a manner than the patient's passing is without the drama you saw.

I watched as the mortuary took daddy's body away. 'He' was gone the moment his spirit left his body. I was able to see this and not be traumatized by it. I'm sorry that was so hard on you.

Grief is so personal. After 15 years, I still think of my dad and there are some tender and sad moments, but realistically? He suffered so much more than he needed to. His passing was a blessing.

Give yourself time. A lot of time. The passing was but a brief moment in a long life and you obviously loved your mom a lot. That's a gift a lot of us do not have. Make lists of the things you cared about with mom--read good books. Take walks, Live your life as you know your mom would have wanted you to.

I don't know if you are a person of faith, but if you are, please lean on that. I believe that our LO's are still very close to us.

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Riverdale makes a very critical, insightful and helpful observation:   Her father and your mother are defined by their lives, not their deaths.   Think of what she's given to you, made you the person you are, and how she'll be remembered.

I suspect that most of us who watch a parent die experience some level of self recrimination as well as anguish for those last days.  I did, and it prompted re-visiting the circumstances surrounding my mother's and sister's deaths.   There weren't issues of care, just that painful loss and wishing I had been able to do more.  

I think most of us feel that way, and I also think that women succumb to it more easily than men, repeatedly reviewing what happened and thinking that we could have, should have, done something to change whatever contributed to the trauma.   Most of us do the best we can under the circumstances, which as we know are trying and challenging.   And we're not superhuman.

We really don't know the reason for your mother's anguish, or whether anything could be done.   Don't beat yourself up over it; think of all you did FOR for her when she was alive.    I know that's difficult, and it takes a major effort, and there will be times when it's overwhelming.

What I've found really helps is to listen to music when the memories and questions arise and become dominant.   Powerful music redirects me; for me, it's Beethoven, especially the Emperor Concerto and Ninth Symphony.    By the time either are through, my arthritic fingers are trying to determine the notes and follow the flourishes, and I've been distracted, and feel so uplifted.

There are other times when it's just easier to let the questions arise and think through what you've done, which from your description sounds like a lot.   Death is more powerful than we are; sometimes aspects of it are so intense and traumatic that they'll haunt us for years.   It's perhaps the most challenging event we'll face in our lives.

What did you do for relaxation before your mother became ill?   Did you walk?  Hike? Workout?   Try those - they're usually calming and redirect troubled thoughts.   

Another thing I've found to be very helpful is to think of ways I can help others, beginning with finding good charities to accept my father's possessions.  I've just found 2 that are really enthused about some of his tools, and the thought of helping others enjoy what he did at one point brought me to tears.  

Tell us more about your mother, and you.  What did she enjoy doing?  Did she have favorite charities?  Hobbies?    And the same questions for you?  What gave you gratitude and created happiness?   

I think tipping the scale from depression and sadness through outweighing them with positive action is key to balancing and eventually conquering the post-death experiences.

And I think one of the first steps is to rechannel your thoughts to something positive, to balance out the negative ones.  The pendulum is still clearly on that side; we need to allow it to move back to center.  

Take a day off and do something you enjoy, even if it's just walking in the sometimes lovely Fall weather we're experiencing.  

I hope you'll continue to interact with us as we offer suggestions.  I'd like to know more about what you used to enjoy doing.
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Billygoat Sep 2019
Thank you, GardenArtist.  You are so understanding, compassionate and insightful.

I have tried "distracting" myself when I think of things that transpired.  It's like a never-ending roll of film playing over and over again in my mind.  Everything reminds me of my precious mom...everything.  My dad, bless his heart, is beside himself.  It's so depressing seeing him so incredibly sad.  He is 82 and I see his quality of life diminishing rapidly.  It's almost overwhelming as I'm the "dependable" one in my family.  Everyone turns to me and now I am basically useless.  I have never, ever, been this sad, despondent or "alone" even though I'm surrounded by people.  My mom was my best friend.  She was everything to me.  We were tennis partners, went waterskiing together, had incredible talks and secrets we shared.  She was an amazing person (and I would say this even if she weren't my mom).  She was loved by all and the pain in her not being here is overwhelming.

Thank you for your really thoughtful response.  I will try the music therapy again and see if that helps.

Bless you, GardenArtist.
Gosh, so awful for you, dear billygoat.
I'm sorry hospice mishandled ur mom's passing, & disrespected ur pain.
Wud you mind contacting the director of their team...& telling them of ur horrific experience? I wud do that; think it wud start ur recovery process to demand explanation, & hold them accountabl. Let them know how terrible it was, (but take someone with u).
No offense to anyone reading this, but I too felt my mother's "end of life" care was poor.
Billygoat, if u don't get any satisfaction from hospice director, maybe speak to an attorney about hospice causing ur extreme emotional distress.
(Take care to hire attorney with good references, I've had 2 very sh*tty lawyers who lied to me & just wanted 💰).
Important that you decide in your heart that God was with ur mom as she passed, & even tho she seemed 2feel pain...she didn't.
I'd have to believe that if it was me: (just sayin that it's ok to tell urself comforting things... Without any proof)... cuz it can truly save ur sanity. And God sees ur loving heart toward ur mom, knowing u did everything right, as far as u understood. He loves u & isn't finding you guilty in any way.
Peace begins in our heads friend...✌
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