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Tormented by my mother's death


ImissMyMommy

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ImissMyMommy

I feel this is a safe place to vent all of my pent up feelings surrounding my mother's death. I am an only child, my mother raised me as a single mother, and we were best friends. Not a day went by that I didn't see and talk to my mother. I miss her so much. I miss her smile, I miss her voice, I miss her laugh, I miss talking to her all day and all night about everything.. I miss her advice. I miss checking on her throughout the day and fussing over her. I miss reminiscing with her... I miss her cooking, I miss my best friend. She was always there for me no matter what. The only one I could truly depend on. My true soul mate... she just understood me, and I understood her. She knew me better than I know myself. The permanence of her being gone is excruciating... I've been spiraling. I've been suicidal, I've been depressed, I've withdrawn. I have to make myself get up and stick to a schedule just to keep from becoming a hermit and giving up on life. I would give anything to have more time with her. It truly has broken me up inside and I'm floating around aimlessly, lost, without her...

She had initially been diagnosed with Rheumatoid Arthritis which then lead to her Pulmonary Hypertension diagnosis. Prior to her death, she had been hospitalized for 2 months. All through Christmas, New Year's, her birthday and she died a week after Valentine's Day.  I took her to the ER because she had lost her appetite and had constant phlegm in her throat that no doctors or specialists were ever able to determine the cause of. She lost so much weight and was so weak that she lost her mobility from malnutrition. She eventually had to get an NG tube and then that was replaced with a PEG tube. Still she wasn't getting enough nutrients because she couldn't tolerated the maximum dose of formula without getting sick.

My mother was only 65 years old and she struggled for so long. I took care of her as best I could at home but working full time I was limited to what I could do for her and when. When she was in the hospital I would go straight there after work to spend as much time with her as I could. She was strong and fought long and hard, and I know she did it for me. During her last hospital stay, I started receiving calls from the Palliative Care team, and they suggested that my mother go to hospice. They said her lungs were not recovering and that hospice was recommended for anyone with less than 6 months to live. They said it didn't mean she would live 6 months but that is a medicare guideline that they use. I didn't want to accept that so I pushed for my mother to go to a long term acute care hospital. All of her doctors had given up on her and basically threw in the towel, but I didn't want to. I feel like that was a mistake and she may have been more comfortable in hospice because our experience at this so called specialty hospital was a nightmare and she hated it there. I didn't know that when she was admitted to that hospital she would never leave.

The doctors ended up telling me that my mother's kidney's were failing, and that they had discussed with her that if she refused dialysis that it would lead to her death. The doctor said he wouldn't recommend it to his family member in her current condition, with her quality of life. My mother was unable to leave the bed at all. She had to be bathed, cleaned, wiped, everything. She was very independent so I could tell that losing her mobility and independence was killing her spirit. She was depressed and miserable. I tried everything to try to keep her spirits up but nothing really helped. Still she remained strong and tried to smile and be in good spirits for me whenever I was around. 

All of the doctors kept telling me that death by renal failure was supposed to be a "peaceful death" and that people just "drift off to sleep"... but no one explained exactly what would happen to her body that would lead to her death. They just said that she would feel euphoric from toxins building up in her body. The hospital did a very poor job explaining the transitional care process to me. They said that transitional care meant that they would stop doing labs, they didn't explain anything else about gradually lowering her oxygen, stopping her tube feeds and no longer administering her prescription medications. They approached me one afternoon and wanted to start the morphine drip, but my mother hadn't expressed that she had been in any pain, so I kept putting it off. Every time they would give her something the help her sleep it would knock her out for 24 hours, but I prayed for one more day with her, just to be able to talk to her and laugh with her and spend some time with her, and I was blessed with that opportunity. She was really disoriented during this day and I assumed it had to do with the toxins building up.That might she became very agitated and kept snatching her nasal canula out of her nose, she was tired of it and I could tell. They gave her a dose of Ativan that night to help her relax, she slept through the night and was barely lucid the next day. Again, they pushed to start the morphine drip... I didn't know what to do, but one of the Respiratory Therapists said that my mother probably wouldn't want to be aware of everything happening inside her body as it started to break down. I didn't want her to be in any pain, so I agreed. They also said the morphine was supposed to help with her breathing.

Fast forward to that night, the shift change and everything took a turn for the worst. The Respiratory Therapist came in the room and was shocked by my mother's low oxygen saturation. She said "Are we letting her go or what?" and then I panicked and said "I don't want to have anything to do with contributing to my mother's death". The nurses said that too much oxygen could cause oxygen poisoning. They asked a PA to come and talk to me. He said that if he lowered her oxygen, she would decline faster as opposed to lingering and dying by renal failure. I told him everyone had assured me that she would not be in any pain from the renal failure and it was supposed to be a peaceful death. He said "people do drift off to sleep but I don't know how peaceful it is. Is this the quality of life that your mother would want?" I said "I don't know, I know she never wanted to be on life support, I don't think she would want to drag anything out and be left to slowly linger and die". He took her heart monitor off and said that we needed to look at her as a person and not focus on her stats. Looking back I never should have let them do that either. How were they even monitoring what was going on with her without checking her heart and BP? What the hell was I thinking? I wasn't thinking... I was completely overwhelmed. I just kept begging them to make sure she was kept comfortable and asking how much morphine she should be on. "Everybody is different" is what they kept telling me... and they would watch for signs of discomfort. Ultimately I decided to allow them to lower her oxygen. Then I changed my mind and told them to just leave her alone after one interval of them lowering her oxygen down while on the High Flow Oxygen. The RT that was assigned to my mom that night kept contradicting herself. First she said she didn't have experience with end of life care, then she said she did. Then she said she had to go along with everything I was saying (when I don't know why when she was supposed to be the professional and my mother's life was in her hands). I fell asleep and when I woke up my mother had the death rattle. I asked what was going on. The nurse said the PA ordered some atropine drops to dry up the secretions. They said she sounded wet when they checked her lungs. Then the RT said "The moisture from the Airvo is probably making it worse, I would recommend switching her over to a regular nasal cannula, would you like for me to do that now?" I said "If you think it will help". I should have had them give her another dose of Ativan to make sure she was relaxed before making such a drastic change in her oxygen. She depended on that oxygen and needed it to survive. I should have made sure everyone was on the same page and that they had a set plan to administer certain meds at certain times to keep her comfortable. I've heard people in the medical field say when their loved ones were dying they knew to ask to schedule certain meds and not have them as PRN, well just because I'm not in the field doesn't mean I loved my mother any less and if I'm asking for you to keep her comfortable why wouldn't that be suggested? To schedule certain meds? 

As time went by I watched my mother like a hawk for any sign of pain or discomfort. The death rattle remained, and I asked the RT how much oxygen she was on, she said 10L. I said out loud "I'm just prolonging this aren't I?" and her response was "You kinda are." (To which I should have said THIS IS MY MOTHER LAYING HERE.. MY WHOLE WORLD, MY EVERYTHING... DO YOU THINK I WANT TO LET HER GO?? SHE'S MY BEST FRIEND AND ONCE SHE'S GONE, SHE'S GONE FOREVER") Why did it seem like she was in a hurry for my mother to die? I didn't want to be selfish and leave my mother lingering and slowly dying though just because I wasn't ready to let her go. Then she said "I can turn her down to 4". I should have asked where she got 4 from? Was that protocol? Or was that just some number she pulled off the top of her head? They still weren't explaining anything to me. They tried to attempt to suction my mother's throat and I stopped them because she hated that and it made her uncomfortable. 

When my mother's oxygen was lowered again, she started breathing a little heavier... I asked for them to increase her morphine. Shortly after her eyes rolled back in her head, and I asked for them to increase her morphine again. Shortly after than my mother's face twisted into this horrible grimace, and she looked like she was in pain. I asked them to do something. I thought maybe she was having a bad reaction to the morphine, that I asked them to push too much too soon and she couldn't handle it, so I asked them to turn it back down. Then I said "This is not what I wanted for her, she doesn't look comfortable, she's in pain, get her something to help her relax!" The nurse pulled up her chart and saw that she had been given Ativan the previous night. She went to get it and it seemed like it was taking forever. One of the technicians went down the hallway to see what was taking so long and when the nurse returned, before she could give my mother the medication, my mother's eyes suddenly opened. She had  been sedated the entire night...she reached out as if trying to grab for someone's hands and started gasping... she took several hard breaths and I grabbed both of her hands and said "Mommy, you're not alone mommy, I'm here, I love you." Then she fell back and the RT said "I think that's cause". I said "You think that's what?" My mother took another hard breath and the RT jumped. The nurse said "Do you see how her breaths are coming far apart like that? Honey, she's going." I said "Can I be alone with her please?" Everyone left the room. I said "Mommy, I asked everyone to leave so it would just be me and you... I know that's what you would want." and she took one more breath. Her eyes were half open and her mouth was gaping open, that's how she died, like she was struggling to breath. It was NOT peaceful. I feel like I took away her chance for a peaceful death by not just letting her kidney's fail. Why didn't the hospital ask my mother what she preferred when she was of sound mind and when they discussed the consequences of refusing dialysis? Was it typical to lower a dying patient's oxygen so as not to prolong the dying process? I just stared at my mother, I couldn't cry. I closed her eyes but couldn't close her mouth. I ran out of the room and fell to the floor saying over and over again how I had done everything wrong and how she looked like she suffered. I had so many questions after my mind started to clear. I tried to communicate with the  hospital staff that was on duty that night but no one would talk to me. I've been researching on my own protocols and what it's like to die from renal failure and the process for lowering oxygen, etc. I've read a lot of people who have lived through somewhat similar experiences with their loved ones but nothing has given me peace. I would like to think that I chose the path for my mother that she would have chosen for herself. To be let go in the quickest way possible and not left to linger and slowly die. But I don't know for sure that's what she would have wanted for herself. There was no good outcome. But I don't know if she dies from hypoxia, or a heart attack, or if  her organs just shut down, or if it was a morphine overdose. Did I cause her death? Did she suffer? I will have to wonder about this as long as I live and it is all I can think about. I can't get the tortured look that my mother had on her face during her last minutes of life out of my mind. I would never want to be the cause of any suffering of the person that I loved more than anyone else in the world. I miss her so much and I feel like I let the hospital rush me into making all the wrong decisions for her when she needed me the most.

 

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Nicole-my grief journey

IMissMyMommy,

My sincerest condolences on the loss of your mom. My mom was also in an LTAC and passed away there. It was confusing, painful and definitely a nightmare. I fought hard for her and she fought hard for herself, but in the end we couldn’t change the outcome. It’s extremely difficult to process and so painful. You have my empathy. We do the best we can with the information we have and you did everything you could for her. My mind replayed things, second guessed things and kept doing that until time went by and I started processing more of what happened. Keep holding on. We are here for you. 

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ImissMyMommy

Nicole,

Thank you so much for replying... although I wouldn't wish this on anyone, it somehow gives me some comfort just knowing that I'm not the only one who had this kind of experience. I have been beating myself up since it happened 4 months ago and I have been praying for peace and for a sign that my mother didn't suffer and that I didn't do anything wrong. I appreciate your support and thank you so much for taking the time to read my post.

 

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My heart goes out to you. I truly believe your Mom knows you did the best you could for her at the time, because of the love you had for each other. My grandmother died from acute kidney failure, and I'm sorry to say her death wasn't peaceful, as she became very agitated and confused with the build-up of toxins in her blood. The moment of death is so unpredictable, and often not as we wish it to be. There is only so much we can control.

Please remember, even though your Mom's last moments were difficult, for you and for her, they were just moments in the span of a lifetime of love that the two of you shared. As a mom myself, I know I would not want my kids to feel guilt and sorrow when they did the best they could and had my best interests at heart, like you certainly did.

It took me a while to get past the image of my dad (I was there right after he died at home) and the guilt of not being there for him at his final moment. As time passes, it gets easier, and happier memories blunt the pain of the sad ones.

Take care.

 

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ImissMyMommy

Gem27 - Thank you for your kind words. I try to put it all in perspective and hearing others tell me that helps me a lot. I am sorry to hear that your grandmother's death was not peaceful. There is always a fear of the unknown and I did truly want the best outcome for my mother in a terrible situation where her life was coming to an end here on earth. I hate the feeling of being left with so many questions and so much guilt. Thank you for sharing your story with me about your dad. I'm sure he knew that you loved him and I've often heard that sometimes it's harder for your loved ones to let go when you're there so everything happens for a reason. I am working hard to try to remember all the good times and the lifetime of laughter and fun and happiness that we shared together as best friends and mother and daughter. I just wish I had more time with her and wish I had spent more time with her when she was here instead of trying to juggle a million things and not dedicating more time to just spending with her. 

I truly appreciate your supportive words...

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Hi ImissMyMommy,

My deepest condolences. Many of us are only childs too and we can understand how you feel. Your post describing everything in detail is quite similar to my own thread... I also tried my best to do all the research, read up and monitor the signs, think of solutions, asked doctors about alternatives. In the end it was a really terrible outcome. My mum was also one of the nicest people in the community and even well-loved among her friends, relatives.

However, when it came to her wake/funeral, i was mainly the person handling it and after that they blamed me for my mum's passing and the events.

You didnt make the wrong decisions Im sure, we only make the decisions based on what we know and were advised by the professionals. You tried your best, your mum knows, and I believe you were very close to her and a good kid... I wasnt that good and nice kid that I should have been,

Grief is a long and arduous journey, different for many. Flashbacks will keep coming and you will keep feeling bad. Hope you can get support from family, friends, or professional help. 

Your mum would have wanted you to live on and do the things she wanted you to...... and to live for yourself. Make her proud.

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Imissmymommy, 

Thank you for your kind words as well.

I'm glad you (and I) found this site, where others understand how difficult it is to go through the death of our loved ones. Everyone's story is different of course, but the sadness, guilt, regret, etc seems to be something so many of us share.

I'm 9 months out from losing my Dad, and can tell you, for me, those feelings have eased, and I'm in a much better place now. Letting those negative feelings out has definitely helped, and I hope it will continue to help you too.

Gem27

 

 

 

 

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ImissMyMommy

nuvar,

 

Thanks for responding. and for your words of comfort. With every reply I read and every similar post I feel support and feel a sense of not being alone in this journey of seemingly never ending grief. You're absolutely right about the flashbacks that come out of nowhere. They hit hard and they reopen the same wounds over and over again. I have a solid support system and I'm working on letting people in, but careful not to be too vulnerable.

I am sorry that you had to go through your loss alone without the support of you and your mother's family and friends.

I pray for healing for all of us.

 

Gem27 -

It's makes me feel good to know that you've started to heal and are in a better place. I am praying for those days to soon come my way.

 

Thank you all!

 

 

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Gwensdaughter75

I pray that healing begins for you as well.

My mother died three months ago and yet when I read your story, I found myself thinking what would I have done if I had been an only child? What would I have done if it had been up to me solely to make decisions like the ones you were forced to make?  Honestly, I think some of the hospital staff you dealt with were  a bit crass.  Starting with that Respiratory Therapist.  You didn't prolong any of your mother's suffering because she was at a point of no return.  They were just keeping her comfortable at that point and opinions should have been kept to themselves while they were doing it.

I'm sorry for your loss and that you were made to, in anyway, second guess what you did for your mother.  You did what you could for her and after awhile, it was just out of your hands.

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