The Hardest Day in My Dash so Far

It's five years ago today that I lost my mom. I can''t believe it's been that long because for me it seems like yesterday. Watching your mom take her last breath is excrutiatingly hard. I watched my mom battle cancer for 14 months, 9 of which was on hospice. Cancer, chemo, and radiation along with pain meds destroyed her body and mind but never destroyed her loving and giving nature. My mom was the most giving person I have ever known. I'm going to talk today about things we experienced as a family ...because I need to. ..because no one allows me to talk about it in person. People don't like hearing all the hard stuff. They don't want to hear the details but holding it in just makes life harder for me. Most days, though I miss her terribly, I function just fine. But other days, I have flashbacks and memories that haunt me. People tell me that someday I won't dwell on those negative things and I will only be able to remember good times...so far that isn't true. Yes, I remember fond and good memories but the bad are still there too. It's been five years! What our family experienced left veteran hospice nurses saying they'd never seen in 20 years of service. 

Because of all we experienced from the beginning of the diagnosis of stage 4 lung cancer, I am leary and untrusting of doctors and hospitals. Before my mom went on hospice, throughout the entire time she received chemo and radiation she was told that she was getting better and the cancer was leaving. Even when she went home on hospice they tried to tell us that she was cancer free and that she was being sent home because of congestive heart failure. Chemo treatments are what make you feel bad during your battle but radiation is what does the most long term damage to the body. It can scar, it shrinks parts of the body inside and often has lasting effects. For my mom, yes she lost her hair and her taste and got very sick and threw up from the chemo but the radiation shrunk her esophagus and is what ultimately caused her the most grief. When she began having trouble with swallowing she was admitted into the hospital and they found the shrinkage and did a procedure to stretch the esophagus. This helped for a day or two but then caused a fistula to form (a hole in the esophagus) and she had to have a splint put in to cover the hole which meant that she would never eat again. She already had a G-tube so she didn't have to have a surgery for that. If she didn't have the splint put in, she would die very quickly because her saliva would go straight into her lungs and cause pneumonia. My mom lived 9 months without eating by mouth. Once in a blue moon she could drink a shake but that was pretty much it. She could not chance having to throw up which she often still felt like doing because of the chemo still in her body. 

I'm now skipping ahead to the final days. In March of 2011, I was having symptoms that sent me to the ER in Sullivan MO. Tingling in my arm and hand and a headache and vision problems. They did a CT scan and decided that I'd had a stroke and sent me to Missouri Baptist Hospital in St. Louis. I was treated as a stroke victim until the next morning. I had an MRI done without contrast and was reasurred by the neurologist that it was not a stroke because where the spot on the brain was and where I had symptoms was not conclusive to a stroke. What I had was a complex migraine. If you have symptoms on one side of the body the spot will be on the opposite side of the brain. What the first hospital was seeing was scar tissue from blunt trauma to the head I received during the car/train collision I was in at age 18. It had not been seen before because my scans had always been done with contrast and the die covered it up. Anyhow, my mom stayed up all night long worrying about me. One week later the hospice nurse called us to say that Mom was beginning her decline and wouldn't be with us much longer. We went to her and she seemed so strong still but she had in fact begun the turn. I have dealt with much guilt over this because I believe the worrying pushed up her decline time. Well, we stayed with her until the end which wasn't for 17 more days. Much much longer than any other patient they had seen. She went 14 days without food and I think 10 days without water. We have all struggled with feeling like we starved her to death but from a medical standpoint, we had no choice. Her body had started shutting down and even meds were not being digested and things were coming back out of her mouth. A couple of times in the first few days, we thought she would pass and then we would walk out of the room for a few minutes and come back to her sitting up on the side of the bed wanting to use the bedside comode. We were shocked and so were the nurses. Then about half way through this period, my mom went pretty much comatose where her pupils were fixed and dilated and she had no gag reflex. This lasted for three days!!! We expected and waited for the last breath. Once again, Mom opened her eyes and sat up, shaking her head. The hopsice nurse had told us to tell her it was okay to go. We were giving her permission to leave us. We did and told her that she would be in a better place and she shook her head no. Now, let me just say right here, that even the nurse had never seen someone wake up after dilated and fixed pupils and no gag reflex. She stood staring in shock as we all witnessed this. It was still about three more days before her passing. 

During the first few days of her turn and decline, while she was still coherent, she would grab my hand and beg me to help her. ...to help her end the suffering she was experiencing. She was coughing up blood, and bruising at the slightest touch, and squirming in pain. I would tell her that all I can do is pray for her. I knew Mom wanted me to help her die. As a Christian, I knew that you don't take matters into your own hands but I will say that the gray area here can definitely creep in. I and my sister both separetly and together more than once filled the morphine syringe up past required dosage but never followed through. Until you've watched someone suffer in that way, you will never know how gray this topic can become. You just want to help ease their pain and death is after all, inevitable. Still, I could not take my mom's life. I only prayed for God's mercy. 

I fully believe that God took my mom from me because I had started to rely on her for financial help and support instead of Him. My mom was in a position to help me and I most certainly asked for help when things got bad for us. Since her passing I have had to rely solely on the Lord for my strength and help. I've had to learn to trust Him for everything and for His daily plan. I believe this so strongly that I won't hardly even talk to my mom except to tell her I love and miss her. I'm afraid that if I talk to her too much, I will begin praying to her and my prayers are to be to God not anyone else. So I guard myself. But this fact doesn't take away that I miss her every single day and often, still this long later, pick up the phone to call her before I realize I can't. I sometimes dream about her and in those dreams it almost always seems to be that she is helping me in some way shape or form in the dream. Helping me hide from bad people who are after me, or helping me to find a good doctor and hospital to have my baby in. (No, I'm not pregnant but in my dream I was!) This just further helps me realize that I must still look to her for help and strengthens my feelings of guarding against praying to her. 

I'm sorry to anyone who found this post offensive but as I have said before, this blog is sometimes for my own therapy and I needed today to talk about what we went through. I needed to let it out to someone else so that maybe I can let go of some of the pain.