10:31
whirlwind. roller coaster. nightmare.
that's what life has been for the past two and a half weeks.
I never thought in a million years that my mother would die at 47 years old and that I would be motherless at 28. There's a strange eerie-ness and unidentifiable heartbreak that goes with identifying as that: motherless. It does not seem real. When I'm alone is when I am able to break down and FEEL everything. My two year old talks with me about her now that he knows Nana went to heaven and his sweet soul lets me cry it out while he caresses my cheeks and kisses my eyes. Any other time I am on "I have to get all this shit handled" mode and my God is there a lot for the loved one(s) to do when a person dies. I have mixed feelings about being appointed her POA (power of attorney). On one hand I knew that I would know all the medical jargon thrown my way and that I would be able to fully understand the severity of what was going on, and on the other hand I was going to be responsible for the unimaginable things like life support decisions. As part of my healing I decided to write out how her horrendous story transpired....
On Friday March 4, 2016 my mother, Kamden and I had a play date scheduled for 9am. my phone rang at 830am, the call was from my moms phone but it was her friend on the line. She told me that my mom was trying to get ready for our date but she couldn't because she said her head felt like it was stuck in a vice. I asked what other symptoms she had and she asked my mom and she said she couldn't really feel her arms, that they were numb and tingly. I told her to call 911 and take her into the ER because those are signs of a stoke. My mother went to Banner Baywood and was seen, given a dose of morphine and sent on her way. HOW?????????????? Maybe if they had taken her seriously, they would have done a fucking CT since she was complaining of unbearable head pain and they would have been able to see the stroke.
Saturday 3/5 at 4:02 pm she called me and left a 10 second voicemail saying "Torie, it's Mama. Call me when you get a chance okay? still really sick" and the voicemail went on for 40 more seconds of nothing. Instead of listening to the voicemail I just sent her a text. I couldn't have been THAT busy to not answer if I could send a text immediately after she called. I am so mad at myself for that!! 4:07 pm she responded saying "Still really sick, just wanted to touch base with you ...". she didn't respond again until Sunday. When I listened to the voicemail she sounded so awful and was out of it to not be able to just hang up the phone when she was done. I feel so guilty that I didn't answer because I was at work. That's the last time I heard her voice. I listened to that voicemail today and I can't be strong hearing it, it breaks me apart. I wish so badly that I could have saved her. That's all I've wanted to be able to do my entire life. I know how deadly the "should have/would have/could have"'s can be so I'm trying SO hard to not let myself ask those questions.
Sunday 3/7, I text her to check in while I was at work and she didn't respond after three messages. I had asked her what the ER said she was sick with because I was assuming since they sent her home that it was just a bad flu with all the awful side effects. I was so wrong. Finally at 12:17 pm she responded saying "I don't know but I need to go back to the ER cuz my head still pounding and my body aches so bad". I told her to not go back to Banner Baywood but to definitely go to another ER because I knew something was wrong if she was still in this much pain. That was the last text I got from her. 11:00 pm that night her friend said that when she came home from work at my mom was unresponsive so she called 911 and they took her to Banner Gateway. I found out about this on Monday morning while I was at work from a text I read at 11:08 am.
TWELVE HOURS AFTER THIS HAPPENED.
Monday 3/8, I immediately called the Banner Transfer Center that I use all the time for transferring patients out at work and found out that she was at Banner University in surgery but they couldn't give me any more information due to HIPPA laws. I immediately left work and on my way there I called Banner University to find my mom and I was transferred to the Neuro ICU unit where her nurse Brian informed me that they had been waiting for me to call. When I think back to that, I have no clue how they would have known about me and been waiting for me to call? Anyway, they told me that she had an aneurysm and was in surgery with Dr. Kumar. When I got to the hospital I went to the unit to get more information and they gave me her jewelry that she was wearing. I couldn't believe what I was hearing. MY MOM?!?! There was just no way this could be happening to her. I remember hoping that she was in surgery for an appendectomy or something common. I was begging for it to be that.
I waited 6 hours for her craniotomy to be over and to speak to her Neurosurgeon. When Dr. Kumar came down I could tell he didn't have good news. I was so scared that he was going to tell me that she died on the table but he didn't. In a way, as far as suffering goes, that might have been the best option for her since the prognosis was so grim. My cousin and her girlfriend were with me when I received the news that she had a Grade 5 aneurysmal subarachnoid hemorrhage which is one of the worst brain injuries possible. He tried to clip the aneurysm but the force of the blood was so strong that the clips kept coming off making the stopping of the bleeding impossible. He said that it was "spraying like a fountain" and in order to stop her from bleeding out he had to clip the vessel that supplied it. When the vessel was cut it paralyzed her right side. She was given a 30% chance of having speech or cognitive function only because she was left handed & left handed peoples cognitive function is on the right side of the brain. The entire left side of her brain was destroyed from the aneurysm causing brain damage. The left half of her skull was removed during the procedure and couldn't be put back on due to the swelling. She was stapled up and the skull flap was kept in the fridge for preservation. He said that we had to give her a chance but after 72 hours if she hadn't gotten better and was deteriorating then we would have to decide what type of life I want to leave her with. I shook his hand and thanked him for saving her life although he felt like he didn't do me any favors. I was at least able to touch her again before having to say goodbye eventually. My nerves got the best of me and I ran to the bathroom and dry heaved until my cousins girlfriend came in and sat on the bathroom floor with me for what seemed like hours. I pulled myself together enough to get up and out of the bathroom so I could call my family and give them the news.
The next few days were a blur. I slept by her side and only left to shower when I was beyond un-presentable and I felt so guilty for leaving her.
3/9: Two days in I begged her to give me a sign because I didn't know what to do. I asked her to show me if shes going to fight or show me that she just cant anymore and that shes ready to go. I met with Dr. Kumar on day 2, 48 hours post-op, and he told me that she was not improving. Her pupils were only dilated to a 1 still and she was still only having response to pain meaning none of it was purposeful. Her blood pressure was still unable to be stabilized between 160 & 180 systolically with all the meds they had tried and if she were to code, it would be inhumane to do CPR on her and have her "saved" to remain in a level 6 coma. He suggested that I sign a sign a DNR... DO NOT RESUSCITATE?! That's when it sunk in that the medical miracle I had been praying for probably wasn't going to happen but in the back of my mind my desperation kept me praying for it. Dr. Kumar took the time to explain to me that if she were to pull through and begin to come out of the coma, that she would be severely impaired for the rest of her life. She wouldn't be able to do anything on her own, she would live in a nursing home and wouldn't have any idea who she was or who anyone else was. The thought of that still makes me sick to my stomach. I cannot imagine that life for my wild and free mama. I would never do that to her. At that point I began praying for her sake that she would pass peacefully and quickly so she would no longer be in pain and "stuck" in the body that betrayed her. That night I was so distraught and stood over her talking and crying, telling her that I forgive her for the life we missed out on together and that it was okay for her to let go and go be with her mom. I felt like she was scared to let go. I couldn't fall asleep until after 2 am, at that point she was only taking 6 breaths a minute and her O2 saturation was at 82%. 3:45 am I woke up to her coughing over the ventilator that was breathing for her and she was being suctioned because there was a lot of phlegm. She was moving and contracting in pain. Having to constantly remind yourself that these actions that seem like they are HER doing them are only brain-stem reactions.
Wednesday 3/10, they did a bronchoscopy due to her pulmonary edema seeming to get worse and found that both of her lungs were infiltrated and she developed a pneumonia. Immediately they put her on antibiotics following standard protocol. I got a call from Dr. Kumar updating me about this and as we were on the phone, I had two calls come through from an unknown number that I found out was the pulmonologist calling to update me on the findings from the bronchoscopy. I never met with that Doctor but got all the information from Dr. Kumar instead... once again, he proved to go above and beyond what any Doctor I've ever seen, met, or worked with do. He told me that she was deteriorating from the pneumonia and not strong enough to fight off the infection and she was not making any improvements in her brain function either. We would watch her through the night and reassess in the morning. As I'm writing this it all seems to run together in my mind and I'm even more hazy about the chronology of it all than I was as it was all happening. IT DOESN'T SEEM REAL.
That night was VERY rough. My mom kept spiking a fever, was very diaphoretic, her blood pressure was going through the roof and her ICP was reaching 40. The Intracranial Pressure of a healthy person should be between 7-15, for a person with brain damage it should be around 20. The rise in her ICP was causing her brain to herniate which causes further brain damage. The night nurse, Anne, was absolutely amazing. She talked to me about anything she was doing, as she did it, and kept me in the know every step of the way. She paged the Doctor to let him know about how bad things were and they grimly told me that she is not going to get any better. This was it. Keeping her on "life support" would only prolong her death because her brain was unable to regulate and function properly and all of the things going wrong were proof of this. I am a black and white person when it comes to understanding something like this and when I see the numbers, I know what they mean, and I believe in the incredible Doctors opinions. I believe in medicine. I also believe in God. Believing in God and Science can be a tricky thing at sometimes.
Friday 3/11/16, I made the unthinkable decision to remove all extreme measures from my mother and let her be transferred to "comfort care". I had called my Papa (her dad) at 2:00 am to let him know that I had spoken with the Hospitalist and he assured me that this is the best thing to do FOR HER. My Papa agreed somberly and I cannot tell you how bad my heart ached (aches) for him. Losing a child is not the natural order of life. I might have been losing my mama but he was losing his youngest child, his baby girl. He is no stranger to the terror of death and losing those closest to him so he was my go-to when it came to guidance about what to do for my mom. I'm so thankful that he was there for me in the immense capacity that he was and is. We spent three years not talking because of family drama keeping us all estranged after my Nana (my moms mom) until I called him to tell him about my mom having the aneurysm and that he needs to get on a plane and get here soon. I can never get that time back and that breaks my heart. Kamden met him when he arrived and loved him immediately. It was as if they knew they were meant to be. Our souls are amazing that way.
I had to decide what hospice to choose and that was overwhelming for me. Her day Nurse, Mark, told me about Hospice of The Valley and raved about the care that they gave his grandma who lived to be 102 (maybe 105?)!! I met with the hospice representative, brought my Papa along for support, and decided to transfer my mom was transferred to Hospice of The Valley - Lund Home, where she would be kept comfortable until she passed away. She was prescribed with a morphine/ativan cocktail for pain and to prevent seizures from her brain damage. I was terrified of what was to come because there was no way to know how long this process could take. Dr. Kumar predicted no more than two days due to her condition. My mama made it two and a half days and all of that life was because her heart was so strong. That's the heartbreaking part of watching a person die... her brain was no longer viable but there was nothing wrong with her heart so it pumped away until it was just too tired and quit. Her nurses there were amazing. They were so caring and even concerned about me and the amount of anxiety I had from her episodes of Cheyne-Stokes and agonal breathing. If you have ever heard the "Death Rattle" in a person dying, you will never forget it. My Nana had the death rattle when she was taken off life support and lived 24 hours before passing away. I was so anxious knowing that my mom too would have this and I was anticipating the sound with such fear. It's terrifying to hear someone slowly choking on their fluids because they're unable to clear their throat and the suctioning machine doesn't even help anymore.
The duration of her stay in hospice was filled with non-stop visitors and it was a reflection of just how loved my mama was. I'm telling you, if you met her you were going to love her, no questions about it. Like I said before, my maternal family was estranged for a few weeks shy of 3 years following my Nana's death on 3/16/2013. My point in bringing that up is because although we were reunited on horrible circumstances I know that it was not by accident. My Nana would have wanted us to remain a family and my mom was heartbroken that we were all torn apart. I believe they brought us back together in this twisted way.... We sat in my moms room and told stories of her, laughed, cried and said I love you's again. I didn't know how much I missed them because I accepted the situation as it was and moved on to find my happiness again without them. I'm thankful to have them present again but unfortunately the road to healing is a very long one and one we have yet to set foot on. Now isn't the time though and I think we all know it without having to say it. I say to myself "in due time" but that scares me because clearly we all think we have TIME but we don't know when we'll run out.
I brought both of my dogs, Chloe and Jade, to see my mom and they kissed her and watched her so intently the whole time they were there. She loved them more than she loved most people (that's definitely where I get it from) and I believe in the healing power of animals even if it was only her spirit that was able to take away from the experience, I know she saw them. Many people asked me if I took Kamden to see her and the answer is no. I know my child better than anyone and he is an old soul, he wouldn't forget seeing her like that. "But he's only two"... my first memory is when I was two years old and at my moms friends house with her and I remember exactly what her friend was wearing. Blew my moms mind when I first told her that and if my son is anything like me, I did not want to imprint that memory of his best friend dying like that. I want him to remember Nana as she was. His dad was 100% on board with my decision and agreed completely. We make a great team and I hope he knows how grateful I am for him.
Monday 3/14/2016: it was 5 o'clock in the morning and my mom's death rattle was so loud, louder than it had been the whole time we were there. I called my Papa and told him that I needed him to come up there so I could step out of the room because I couldn't take it anymore. For ME to feel like that, I knew the end was going to be soon. The hour until he arrived I just talked to my mama, kissed her forehead and told her that I was so sorry that she had to go through this. I told her that I wished I could have saved her from everything, especially this. I sat down and prayed to God that I wouldn't see her take her last breath. As those words came out of my mouth I instantaneously felt guilty but I knew that if I had to see that, I wouldn't be okay. You don't get over things like that. My Papa and Aunt arrived around 6:00 am and I was frantic. I needed to get out of that room and breathe. I said I was going to step out and that I would be right back and the next thing I knew I was driving home. My dog Jade was in the car and I rationed with myself that I had to take her home so it was okay to be leaving. I had a huge feeling that my mama would pass away while I was gone.
At 10:29am I was sleeping in my bed and woken up by my Aunts phone call telling me to get there soon because she wasn't doing good. I left my house in two minutes and sped the entire 20 minute drive there. I screamed and bawled the whole way because I knew this was it. I walked into her room, saw her lying still and my Papa was in the doorway. He said "She's gone". I fell apart into his arms and didn't want to believe it was true. She passed away at 10:31 am on March 14th 2016. It was her mother's birthday, she would have been 71 years old. Although I knew I didn't want to see her take her last breath I still felt guilty for not being there when she did. I don't know how to make sense of it but I still feel guilty even though I know it was for the best. She had her daddy and her sister there with her so she was never ever alone. For that I am grateful and it gives me some peace of mind. I went over to her and put my hand on her chest like I did every time I stood next to her since she's been in the hospital. I knew I wouldn't feel her heart beating anymore but I had to feel it for myself to comprehend it.
We waited with her body until the Medical Examiner came to pick her up since she had to have an autopsy per the State of Arizona's law on a patient going down unwitnessed. Ironically enough, I knew the ME that picked her up because I have helped him bag up patients bodies at my work when they have passed away during a CODE. That made me feel more comfortable knowing that her body was going with someone that I KNEW and have seen take great care of the deceased. She sat in the morgue for four days before they were able to do her autopsy due to high work load on 3/18. She was picked up from the ME's office by Science Care on 3/21 and they began the process of "whole body donation" today, 3/24/2016. It's incredible how long this process takes. Most people have the perception that after a person dies they're just dead, get buried and that's the end of it. That is so far from the truth, in fact there is so much to take care of and the person that is responsible to do it all is the deceased's Medical Power of Attorney.
Life after losing my mother:
Every single day has consisted of calling places to get her arrangements taken care of.
- Medical Examiners Office
- Donor Network
- interview
- Science Care
- interview
- purchasing an Urn
- retrieving her belongings
- donating her belongings after saving items to have made into a quilt
- opening an investigation on the ER that ignored her stroke
- writing her eulogy
- planning her Celebration of Life gathering
- buying everything for the Celebration of Life
- endless updates to family and friends
- phone calls confirming start of autopsy, start of process for donation, etc.
It seems like its never ending and I'm handling it all while I've come back to work. Most people say I came back too soon but I needed "normal" again desperately. I didn't work for 11 days, 7 were spent with my mom and 4 were spent handling her affairs. When I came back I was nervous to see the worst, a CODE or a patient on a ventilator or a patient with the same injuries my mom died from. Fortunately the worst didn't happen.
My co-workers were so concerned about me, full of condolences and offering so much help. I am so thankful for that. The entire 11 days I was off work, the Director of my ER checked in on me and shared stories of similar times she had been through herself and I can't thank her enough. I was able to not stress about my job and focus on my mother completely and THAT is priceless. My girlfriends were phenomenal and made me realize how incredibly lucky I am to have them in my life. They are irreplaceable. My father proved to be my best friend like always and the rest of my family were amazing with their words of encouragement and praise when I needed it the most.
On my Nana's 3 year death date, we did a balloon release for her and my mama. That night I told Kamden that we sent those balloons to Nana in heaven. He looked at me and said "Nana very sick" which is what I had been telling him as to why I was having to stay at the hospital when he would cry for me to come home and "sleep at our house in you bed mama". I told him yes, she was very sick and she died and he immediately understood it. He said it over and over as if he was making himself understand it. He said "I see Nana?" and I told him we cant see her anymore, only in our dreams.
The photos I took from the end of my mothers life are graphic in the sense that they are heart wrenching but I'm going to post them because they're of my mama so I don't want to discard them. My mama and I LOVE Rob Thomas and anytime I left her to go home and shower, I played "Rob Thomas Radio" on Pandora and so many of her/our favorites came on so I took screenshots of them so I would always remember. When I was given her belongings when I initially went to the Neuro ICU I immediately put her gold Crucifix necklace on me. I didn't take it off until a week after she passed and I replaced it with the necklace that I gave her for Christmas. The necklace is gold (of course) and there are 3 pendants on it with mine, my brothers, and Kamden's initials on each one along with my Nana's birthstone color so she could always have us close to her heart. Now I wear it close to mine.
I write all of this with the intention to show my son later in life so that he can know exactly what happened to his Nana. I'm not known for having the best memory so before the details slip away from my mind I needed to document them here. Thank you from the bottom of my heart to each and every single one of you that sent your condolences and prayers. I read every single one of them even if I didn't always respond. I just couldn't. I love you all.
- T
This bear is the first bear Kamden got while he was still in my belly and my Nana had gotten it for him before she went into the hospital and passed away. He wanted his Nana to have it so she wouldn't be sad.
"Acorn from a "Rubber Tree" in Missouri that my papa showed us! We all know where I get my dirty jokes from ;)
My mama's handwriting tattooed on me so I can see the most special words she always said to me
that's what life has been for the past two and a half weeks.
I never thought in a million years that my mother would die at 47 years old and that I would be motherless at 28. There's a strange eerie-ness and unidentifiable heartbreak that goes with identifying as that: motherless. It does not seem real. When I'm alone is when I am able to break down and FEEL everything. My two year old talks with me about her now that he knows Nana went to heaven and his sweet soul lets me cry it out while he caresses my cheeks and kisses my eyes. Any other time I am on "I have to get all this shit handled" mode and my God is there a lot for the loved one(s) to do when a person dies. I have mixed feelings about being appointed her POA (power of attorney). On one hand I knew that I would know all the medical jargon thrown my way and that I would be able to fully understand the severity of what was going on, and on the other hand I was going to be responsible for the unimaginable things like life support decisions. As part of my healing I decided to write out how her horrendous story transpired....
On Friday March 4, 2016 my mother, Kamden and I had a play date scheduled for 9am. my phone rang at 830am, the call was from my moms phone but it was her friend on the line. She told me that my mom was trying to get ready for our date but she couldn't because she said her head felt like it was stuck in a vice. I asked what other symptoms she had and she asked my mom and she said she couldn't really feel her arms, that they were numb and tingly. I told her to call 911 and take her into the ER because those are signs of a stoke. My mother went to Banner Baywood and was seen, given a dose of morphine and sent on her way. HOW?????????????? Maybe if they had taken her seriously, they would have done a fucking CT since she was complaining of unbearable head pain and they would have been able to see the stroke.
Saturday 3/5 at 4:02 pm she called me and left a 10 second voicemail saying "Torie, it's Mama. Call me when you get a chance okay? still really sick" and the voicemail went on for 40 more seconds of nothing. Instead of listening to the voicemail I just sent her a text. I couldn't have been THAT busy to not answer if I could send a text immediately after she called. I am so mad at myself for that!! 4:07 pm she responded saying "Still really sick, just wanted to touch base with you ...". she didn't respond again until Sunday. When I listened to the voicemail she sounded so awful and was out of it to not be able to just hang up the phone when she was done. I feel so guilty that I didn't answer because I was at work. That's the last time I heard her voice. I listened to that voicemail today and I can't be strong hearing it, it breaks me apart. I wish so badly that I could have saved her. That's all I've wanted to be able to do my entire life. I know how deadly the "should have/would have/could have"'s can be so I'm trying SO hard to not let myself ask those questions.
Sunday 3/7, I text her to check in while I was at work and she didn't respond after three messages. I had asked her what the ER said she was sick with because I was assuming since they sent her home that it was just a bad flu with all the awful side effects. I was so wrong. Finally at 12:17 pm she responded saying "I don't know but I need to go back to the ER cuz my head still pounding and my body aches so bad". I told her to not go back to Banner Baywood but to definitely go to another ER because I knew something was wrong if she was still in this much pain. That was the last text I got from her. 11:00 pm that night her friend said that when she came home from work at my mom was unresponsive so she called 911 and they took her to Banner Gateway. I found out about this on Monday morning while I was at work from a text I read at 11:08 am.
TWELVE HOURS AFTER THIS HAPPENED.
Monday 3/8, I immediately called the Banner Transfer Center that I use all the time for transferring patients out at work and found out that she was at Banner University in surgery but they couldn't give me any more information due to HIPPA laws. I immediately left work and on my way there I called Banner University to find my mom and I was transferred to the Neuro ICU unit where her nurse Brian informed me that they had been waiting for me to call. When I think back to that, I have no clue how they would have known about me and been waiting for me to call? Anyway, they told me that she had an aneurysm and was in surgery with Dr. Kumar. When I got to the hospital I went to the unit to get more information and they gave me her jewelry that she was wearing. I couldn't believe what I was hearing. MY MOM?!?! There was just no way this could be happening to her. I remember hoping that she was in surgery for an appendectomy or something common. I was begging for it to be that.
I waited 6 hours for her craniotomy to be over and to speak to her Neurosurgeon. When Dr. Kumar came down I could tell he didn't have good news. I was so scared that he was going to tell me that she died on the table but he didn't. In a way, as far as suffering goes, that might have been the best option for her since the prognosis was so grim. My cousin and her girlfriend were with me when I received the news that she had a Grade 5 aneurysmal subarachnoid hemorrhage which is one of the worst brain injuries possible. He tried to clip the aneurysm but the force of the blood was so strong that the clips kept coming off making the stopping of the bleeding impossible. He said that it was "spraying like a fountain" and in order to stop her from bleeding out he had to clip the vessel that supplied it. When the vessel was cut it paralyzed her right side. She was given a 30% chance of having speech or cognitive function only because she was left handed & left handed peoples cognitive function is on the right side of the brain. The entire left side of her brain was destroyed from the aneurysm causing brain damage. The left half of her skull was removed during the procedure and couldn't be put back on due to the swelling. She was stapled up and the skull flap was kept in the fridge for preservation. He said that we had to give her a chance but after 72 hours if she hadn't gotten better and was deteriorating then we would have to decide what type of life I want to leave her with. I shook his hand and thanked him for saving her life although he felt like he didn't do me any favors. I was at least able to touch her again before having to say goodbye eventually. My nerves got the best of me and I ran to the bathroom and dry heaved until my cousins girlfriend came in and sat on the bathroom floor with me for what seemed like hours. I pulled myself together enough to get up and out of the bathroom so I could call my family and give them the news.
The next few days were a blur. I slept by her side and only left to shower when I was beyond un-presentable and I felt so guilty for leaving her.
3/9: Two days in I begged her to give me a sign because I didn't know what to do. I asked her to show me if shes going to fight or show me that she just cant anymore and that shes ready to go. I met with Dr. Kumar on day 2, 48 hours post-op, and he told me that she was not improving. Her pupils were only dilated to a 1 still and she was still only having response to pain meaning none of it was purposeful. Her blood pressure was still unable to be stabilized between 160 & 180 systolically with all the meds they had tried and if she were to code, it would be inhumane to do CPR on her and have her "saved" to remain in a level 6 coma. He suggested that I sign a sign a DNR... DO NOT RESUSCITATE?! That's when it sunk in that the medical miracle I had been praying for probably wasn't going to happen but in the back of my mind my desperation kept me praying for it. Dr. Kumar took the time to explain to me that if she were to pull through and begin to come out of the coma, that she would be severely impaired for the rest of her life. She wouldn't be able to do anything on her own, she would live in a nursing home and wouldn't have any idea who she was or who anyone else was. The thought of that still makes me sick to my stomach. I cannot imagine that life for my wild and free mama. I would never do that to her. At that point I began praying for her sake that she would pass peacefully and quickly so she would no longer be in pain and "stuck" in the body that betrayed her. That night I was so distraught and stood over her talking and crying, telling her that I forgive her for the life we missed out on together and that it was okay for her to let go and go be with her mom. I felt like she was scared to let go. I couldn't fall asleep until after 2 am, at that point she was only taking 6 breaths a minute and her O2 saturation was at 82%. 3:45 am I woke up to her coughing over the ventilator that was breathing for her and she was being suctioned because there was a lot of phlegm. She was moving and contracting in pain. Having to constantly remind yourself that these actions that seem like they are HER doing them are only brain-stem reactions.
Wednesday 3/10, they did a bronchoscopy due to her pulmonary edema seeming to get worse and found that both of her lungs were infiltrated and she developed a pneumonia. Immediately they put her on antibiotics following standard protocol. I got a call from Dr. Kumar updating me about this and as we were on the phone, I had two calls come through from an unknown number that I found out was the pulmonologist calling to update me on the findings from the bronchoscopy. I never met with that Doctor but got all the information from Dr. Kumar instead... once again, he proved to go above and beyond what any Doctor I've ever seen, met, or worked with do. He told me that she was deteriorating from the pneumonia and not strong enough to fight off the infection and she was not making any improvements in her brain function either. We would watch her through the night and reassess in the morning. As I'm writing this it all seems to run together in my mind and I'm even more hazy about the chronology of it all than I was as it was all happening. IT DOESN'T SEEM REAL.
That night was VERY rough. My mom kept spiking a fever, was very diaphoretic, her blood pressure was going through the roof and her ICP was reaching 40. The Intracranial Pressure of a healthy person should be between 7-15, for a person with brain damage it should be around 20. The rise in her ICP was causing her brain to herniate which causes further brain damage. The night nurse, Anne, was absolutely amazing. She talked to me about anything she was doing, as she did it, and kept me in the know every step of the way. She paged the Doctor to let him know about how bad things were and they grimly told me that she is not going to get any better. This was it. Keeping her on "life support" would only prolong her death because her brain was unable to regulate and function properly and all of the things going wrong were proof of this. I am a black and white person when it comes to understanding something like this and when I see the numbers, I know what they mean, and I believe in the incredible Doctors opinions. I believe in medicine. I also believe in God. Believing in God and Science can be a tricky thing at sometimes.
Friday 3/11/16, I made the unthinkable decision to remove all extreme measures from my mother and let her be transferred to "comfort care". I had called my Papa (her dad) at 2:00 am to let him know that I had spoken with the Hospitalist and he assured me that this is the best thing to do FOR HER. My Papa agreed somberly and I cannot tell you how bad my heart ached (aches) for him. Losing a child is not the natural order of life. I might have been losing my mama but he was losing his youngest child, his baby girl. He is no stranger to the terror of death and losing those closest to him so he was my go-to when it came to guidance about what to do for my mom. I'm so thankful that he was there for me in the immense capacity that he was and is. We spent three years not talking because of family drama keeping us all estranged after my Nana (my moms mom) until I called him to tell him about my mom having the aneurysm and that he needs to get on a plane and get here soon. I can never get that time back and that breaks my heart. Kamden met him when he arrived and loved him immediately. It was as if they knew they were meant to be. Our souls are amazing that way.
I had to decide what hospice to choose and that was overwhelming for me. Her day Nurse, Mark, told me about Hospice of The Valley and raved about the care that they gave his grandma who lived to be 102 (maybe 105?)!! I met with the hospice representative, brought my Papa along for support, and decided to transfer my mom was transferred to Hospice of The Valley - Lund Home, where she would be kept comfortable until she passed away. She was prescribed with a morphine/ativan cocktail for pain and to prevent seizures from her brain damage. I was terrified of what was to come because there was no way to know how long this process could take. Dr. Kumar predicted no more than two days due to her condition. My mama made it two and a half days and all of that life was because her heart was so strong. That's the heartbreaking part of watching a person die... her brain was no longer viable but there was nothing wrong with her heart so it pumped away until it was just too tired and quit. Her nurses there were amazing. They were so caring and even concerned about me and the amount of anxiety I had from her episodes of Cheyne-Stokes and agonal breathing. If you have ever heard the "Death Rattle" in a person dying, you will never forget it. My Nana had the death rattle when she was taken off life support and lived 24 hours before passing away. I was so anxious knowing that my mom too would have this and I was anticipating the sound with such fear. It's terrifying to hear someone slowly choking on their fluids because they're unable to clear their throat and the suctioning machine doesn't even help anymore.
The duration of her stay in hospice was filled with non-stop visitors and it was a reflection of just how loved my mama was. I'm telling you, if you met her you were going to love her, no questions about it. Like I said before, my maternal family was estranged for a few weeks shy of 3 years following my Nana's death on 3/16/2013. My point in bringing that up is because although we were reunited on horrible circumstances I know that it was not by accident. My Nana would have wanted us to remain a family and my mom was heartbroken that we were all torn apart. I believe they brought us back together in this twisted way.... We sat in my moms room and told stories of her, laughed, cried and said I love you's again. I didn't know how much I missed them because I accepted the situation as it was and moved on to find my happiness again without them. I'm thankful to have them present again but unfortunately the road to healing is a very long one and one we have yet to set foot on. Now isn't the time though and I think we all know it without having to say it. I say to myself "in due time" but that scares me because clearly we all think we have TIME but we don't know when we'll run out.
I brought both of my dogs, Chloe and Jade, to see my mom and they kissed her and watched her so intently the whole time they were there. She loved them more than she loved most people (that's definitely where I get it from) and I believe in the healing power of animals even if it was only her spirit that was able to take away from the experience, I know she saw them. Many people asked me if I took Kamden to see her and the answer is no. I know my child better than anyone and he is an old soul, he wouldn't forget seeing her like that. "But he's only two"... my first memory is when I was two years old and at my moms friends house with her and I remember exactly what her friend was wearing. Blew my moms mind when I first told her that and if my son is anything like me, I did not want to imprint that memory of his best friend dying like that. I want him to remember Nana as she was. His dad was 100% on board with my decision and agreed completely. We make a great team and I hope he knows how grateful I am for him.
Monday 3/14/2016: it was 5 o'clock in the morning and my mom's death rattle was so loud, louder than it had been the whole time we were there. I called my Papa and told him that I needed him to come up there so I could step out of the room because I couldn't take it anymore. For ME to feel like that, I knew the end was going to be soon. The hour until he arrived I just talked to my mama, kissed her forehead and told her that I was so sorry that she had to go through this. I told her that I wished I could have saved her from everything, especially this. I sat down and prayed to God that I wouldn't see her take her last breath. As those words came out of my mouth I instantaneously felt guilty but I knew that if I had to see that, I wouldn't be okay. You don't get over things like that. My Papa and Aunt arrived around 6:00 am and I was frantic. I needed to get out of that room and breathe. I said I was going to step out and that I would be right back and the next thing I knew I was driving home. My dog Jade was in the car and I rationed with myself that I had to take her home so it was okay to be leaving. I had a huge feeling that my mama would pass away while I was gone.
At 10:29am I was sleeping in my bed and woken up by my Aunts phone call telling me to get there soon because she wasn't doing good. I left my house in two minutes and sped the entire 20 minute drive there. I screamed and bawled the whole way because I knew this was it. I walked into her room, saw her lying still and my Papa was in the doorway. He said "She's gone". I fell apart into his arms and didn't want to believe it was true. She passed away at 10:31 am on March 14th 2016. It was her mother's birthday, she would have been 71 years old. Although I knew I didn't want to see her take her last breath I still felt guilty for not being there when she did. I don't know how to make sense of it but I still feel guilty even though I know it was for the best. She had her daddy and her sister there with her so she was never ever alone. For that I am grateful and it gives me some peace of mind. I went over to her and put my hand on her chest like I did every time I stood next to her since she's been in the hospital. I knew I wouldn't feel her heart beating anymore but I had to feel it for myself to comprehend it.
We waited with her body until the Medical Examiner came to pick her up since she had to have an autopsy per the State of Arizona's law on a patient going down unwitnessed. Ironically enough, I knew the ME that picked her up because I have helped him bag up patients bodies at my work when they have passed away during a CODE. That made me feel more comfortable knowing that her body was going with someone that I KNEW and have seen take great care of the deceased. She sat in the morgue for four days before they were able to do her autopsy due to high work load on 3/18. She was picked up from the ME's office by Science Care on 3/21 and they began the process of "whole body donation" today, 3/24/2016. It's incredible how long this process takes. Most people have the perception that after a person dies they're just dead, get buried and that's the end of it. That is so far from the truth, in fact there is so much to take care of and the person that is responsible to do it all is the deceased's Medical Power of Attorney.
Life after losing my mother:
Every single day has consisted of calling places to get her arrangements taken care of.
- Medical Examiners Office
- Donor Network
- interview
- Science Care
- interview
- purchasing an Urn
- retrieving her belongings
- donating her belongings after saving items to have made into a quilt
- opening an investigation on the ER that ignored her stroke
- writing her eulogy
- planning her Celebration of Life gathering
- buying everything for the Celebration of Life
- endless updates to family and friends
- phone calls confirming start of autopsy, start of process for donation, etc.
It seems like its never ending and I'm handling it all while I've come back to work. Most people say I came back too soon but I needed "normal" again desperately. I didn't work for 11 days, 7 were spent with my mom and 4 were spent handling her affairs. When I came back I was nervous to see the worst, a CODE or a patient on a ventilator or a patient with the same injuries my mom died from. Fortunately the worst didn't happen.
My co-workers were so concerned about me, full of condolences and offering so much help. I am so thankful for that. The entire 11 days I was off work, the Director of my ER checked in on me and shared stories of similar times she had been through herself and I can't thank her enough. I was able to not stress about my job and focus on my mother completely and THAT is priceless. My girlfriends were phenomenal and made me realize how incredibly lucky I am to have them in my life. They are irreplaceable. My father proved to be my best friend like always and the rest of my family were amazing with their words of encouragement and praise when I needed it the most.
On my Nana's 3 year death date, we did a balloon release for her and my mama. That night I told Kamden that we sent those balloons to Nana in heaven. He looked at me and said "Nana very sick" which is what I had been telling him as to why I was having to stay at the hospital when he would cry for me to come home and "sleep at our house in you bed mama". I told him yes, she was very sick and she died and he immediately understood it. He said it over and over as if he was making himself understand it. He said "I see Nana?" and I told him we cant see her anymore, only in our dreams.
The photos I took from the end of my mothers life are graphic in the sense that they are heart wrenching but I'm going to post them because they're of my mama so I don't want to discard them. My mama and I LOVE Rob Thomas and anytime I left her to go home and shower, I played "Rob Thomas Radio" on Pandora and so many of her/our favorites came on so I took screenshots of them so I would always remember. When I was given her belongings when I initially went to the Neuro ICU I immediately put her gold Crucifix necklace on me. I didn't take it off until a week after she passed and I replaced it with the necklace that I gave her for Christmas. The necklace is gold (of course) and there are 3 pendants on it with mine, my brothers, and Kamden's initials on each one along with my Nana's birthstone color so she could always have us close to her heart. Now I wear it close to mine.
I write all of this with the intention to show my son later in life so that he can know exactly what happened to his Nana. I'm not known for having the best memory so before the details slip away from my mind I needed to document them here. Thank you from the bottom of my heart to each and every single one of you that sent your condolences and prayers. I read every single one of them even if I didn't always respond. I just couldn't. I love you all.
- T
I LOVE YOU MAMA, MORE THAN LIFE ITSELF.
Torie thank you for sharing. That was beautiful just like you. I'm sad for your pain and agony. You're such a sweet momma. You and your little sweetie are in my prayers.
ReplyDeleteI'm so glad you posted this hon. I love you ♡♡
ReplyDeleteI am so sorry for your loss. both my parents where in hospice at home. I wasn't there when my daddy passed and felt guilty for a long time. when my mom went in hospice I was there every second. the night she passed me my husband my brothers and their wives were all there. we were talking and watching her as she lay on the bed in the living room. she would stop breathing and I would squeeze my husbands hand then she would start breathing again. my brother was sitting next to her holding her hand. I saw him check her pulse and look at my other brother and shake his head. honestly torie I don't remember much after that. not until my brother told me they would be coming for her soon if I wanted to say goodbye. I climbed into bed with her and fell asleep holding my mom for the last time. I remember my brother waking me because they were there to take her. I know how you feel. losing you mom is horrible. I was her life for 7 years since my dad died. she was my best friend and I miss her every single day. I still cry and I still hurt. but like everyone says it gets better. I will keep you and yours in my thoughts and prayers. pray that your heart heals soon. Marion
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