Guilt

Have you ever promised someone something, but when the time came you couldn’t or wouldn’t follow through?  It happened to me with my mom and I carry so much guilt over it. However, I’m not sure that I could do it if I had another chance.

This is the whole story of my mother’s death… feel free to skip over the italicized portion, it’s more for my memory than anything.

Friday, November 17, 2017
Mom had chemo today and had to get two units of blood. When she got home she said she felt better than she had in a long time. She slept most of the afternoon and evening.

Saturday, November 18, 2017
Mom woke up with a horrible headache. She had her coffee and Excedrin Migraine before lying in my bed (darkest room in the house). She got up around noon and said her headache was gone and ate some lunch. She had a nap on the couch and didn’t want to eat supper because she said her stomach hurt. She took something for that and went to bed.

Sunday, November 19, 2017
LJ woke me up around 3am telling me that something was wrong with Grandma and I needed to get up. I guess dad caught her dragging the walker (she didn’t use it all the time) and was heading for the front door. When asked what she was doing she said she was going to the bathroom. Once she was out of the bathroom we set her on the couch (we were all camped out in the living room at this point) and she kept saying she didn’t know how to lay down (she was laying down). She was restless, sitting up and lying down all the while saying she didn’t know what she was doing.

Around 6am I got her to eat some toast and drink some orange juice after she said she felt funny, that something was wrong (we thought her blood sugar might be low). After that she gave me a “mom look” and wanted to know if she was having a stroke… I’m trained in CPR/First Aid, so I checked for FAST, but there was no indication of a stroke. I asked if she wanted to go to the ER, and she said no, but because they wouldn’t do anything for “something’s wrong” – at this point she couldn’t tell me what was wrong, but kept saying that something wasn’t right. I talked her into taking a nap and when she woke up she went to the bathroom and stuck her head in my room to tell me that she was feeling so much better and was ready for lunch. It wasn’t even 5 minutes later that my dad was yelling at me to get in the living room.

I rushed into the living room and mom was having a seizure. It lasted about a minute and dad was just sitting there so I yelled for LJ to call 911. After the seizure she was so garbled on her speech that I couldn’t understand anything. Dad kept trying to hold her down and she kept pushing him away and pinching him. She eventually wiggled around enough that when the paramedics got there she was sitting on the floor trying to tug her clothes off.

They loaded her into the ambulance and sat in the driveway forever… literally it was at least 45 minutes. By that time my brother had arrived (sometime between her seizure and while waiting for the ambulance someone called him) and we stood outside and kept saying something was wrong.

Eventually the paramedic got out of the ambulance and told us they were meeting the helicopter to fly her to the hospital. He told us that she had a grand mal seizure after they got her in the ambulance and she coded… her heart stopped – they revived her, sedated, and intubated her. We followed the ambulance to the base and watched them load her onto the helicopter.

Once we got the hospital (about 2 hours away) the doctors and nurses had already ran x-rays, ct scan, tons of blood work, and removed a tick that was stuck to her shoulder (it was sent off for testing). We had several questions to answer about what happened and about her medical history – they had to verify information before they could perform a MRI. She had tests on her heart, head, lungs, ultrasounds to check for blood clots. We ended up in neuroscience ICU where they left her sedated and intubated while they did an eeg to check her brain waves for more seizure activity.

Monday, November 20, 2017
More tests were scheduled for the day and the plan was to wean her off of the sedation and see if they could remove the breathing tube. In typical mom fashion she had problems waking up and the machine was doing too much of her breathing to remove it. They were able to get the MRI done while she was still out of it. She kept moving her arms around and would try to grab the tube so she was soft restrained – hands loosely tied where she couldn’t reach the tube. She was responsive enough that she knew we were there and could turn her head toward us.

Tuesday, November 21, 2017
The tube was removed and she was awake enough to whisper to us. The tube had irritated her throat so a whisper was all she could manage. Therapy came in and sat her up on the side of the bed, where she showed so much improvement. She knew all of us. Doctors gave us the information that they didn’t know why she had the seizures (no sign of blood clots, a stroke, or cancer in her brain). They suspected an infection (didn’t say what kind) and started her on a broad spectrum antibiotic. This would be the last day that she responded to us in any way, but we didn’t know it at the time.

Wednesday, November 22, 2017
Mom has had difficulties maintaining her oxygen levels, had stopped responding to us, wasn’t responding to any antibiotics, and had to have fluid suctioned out of her mouth on regular intervals. Our nurse asked us what we wanted the next step to be. Dad said to do whatever to save her. Once he left the room my brother and I asked the nurse what kind of outcome mom had…she said it would be limited and she’s been through so much. She said she had a friend in palliative care that would be willing to speak to us about what our options were. After talking with her and having dad listen to her we decided to move mom into palliative care for the remainder of her time however long that may be.

Thursday, November 23, 2017
It’s getting harder each day to see her lying in that bed not responding to anything or anyone. My oldest two brothers make it in the see her and she’s moved out of neuroscience ICU to the regular neuro floor. We hated to see her moved because of the care she had and the relationship we had developed with the staff in ICU, but we became close with the nurse there too. I spent most of the time washing her hair (trying to get all the glue from the EEG leads out) and putting lotion on her while I talked to her.

Friday, November 24, 2017 – Sunday, November 26, 2017
My dad, LJ, and I were driving back and forth (when LJ wasn’t in school) to the hospital because my dad refused to sleep in the hospital. My brother wouldn’t leave so we knew if anything happened we would know quickly. The nurse told us she didn’t expect her to make it through the weekend, but if she did then on Monday they would talk to us about transferring her to a nursing home closer to home. Every time we walked out the door we would tell her goodbye because we expected it to be the last time. LJ refused to go back to the hospital Sunday so I didn’t force him.

Monday, November 27, 2017
At 1AM my eyes pop open and I look at my phone, but there’s nothing. I had my cell phone and the landline next to my bed just in case. I had just rolled over when I hear dad’s cell phone ringing… 1:11 AM and it’s my brother informing us that mom had passed away just a minute before. Of course I knew, I knew when I woke up what was happening. I lay in bed crying until my alarm went off. I got up, washed my face, and woke LJ up and told him his Grandma had passed away. He opted to go to school to try to stay “normal” so I let him.

My guilt? It comes from the fact that if I had spoken up to the paramedic like I almost did then that week wouldn’t have happened. I almost told the paramedic that mom wanted to be a no code… she didn’t want to be intubated, have her heart restarted, or any other life saving measures… but I couldn’t do it.  I wasn’t ready to lose my mom so I didn’t tell him that day. Of course, there’s always the chance they would have done it anyway since she really didn’t have anything in writing, but we all knew it… my dad, my brother, LJ, me… she had even made us all promise that we would tell them no code…

To this day we have no idea what caused the seizure, but when people ask we just tell them it was the cancer.