I woke up very early Friday morning about 4 AM. I went out to the living room to check on mom and Carly. Carly was curled up sleeping in the recliner. Mom was lying on the couch where we had placed her. She had begun a low gurgling in her throat...the death rattle as we nurses call it. The true term is terminal secretions and happens near the end of the dying process when the person has lost the ability to swallow. I got the hospice comfort kit and opened up the atropine drops as this is what they're for. I placed a few drops in my mom's mouth and I went back to sleep.
I awoke about three hours later and Carly and I both sat at the table eating the donuts Ella Mae had brought over the day before. I could tell mom was not going to wake up. Mom's friend Nancy was going to come that morning, she asked us if we needed anything. I said we were good, but she did bring us McDonald's coffee. After she gave us our coffee, she pulled up the glider next to mom, she opened her Bible and began reading it to her and praying for her. This touched me deeply and I thought, that's what I want when I die.
I went to go take a shower and get dressed. I was going to leave, I had decided. I had spent a week watching my mother die and I had begun to think maybe mom was waiting on me to leave. She would be safe and taken care of with Sean and Carly there. Andy and Nancy would be there too. Nancy, being a nurse, gave me even more comfort that is was okay to leave.
Sean tells me he got up that morning and got ready at the hotel. He remembers going down to breakfast by himself and looking around at everyone there. Everyone was getting ready for their daily activities oblivious and not knowing what my brother was going to do. He was preparing himself to spend the day with his mom as she lay dying. Everyone bustled around him. Life goes on.
Andy came over as well as Pastor Tim who prayed for all of us and for mom. As he left it was late morning and Sean and his family came. Pastor Tim stopped them and asked if they had been in there yet. Sean said he had been there last night, he was prepared for what to expect as he walked through the door. They walked through the door and went to her. Little Noey hung back not understanding why Mams was making those noises.
When they came I went back to her room and quickly typed up a list of care instructions:
1. You can give the Roxanol (morphine) 0.5ml every 1 hour as needed, I've been giving it to mom probably about every 3 hours. If she should wake up, I would give her some, or if she anticipates moving to the recliner I would give her some.
2. The atropine drops are to help dry up the secretions she has in her throat, you can give 5 drops every 1 hours as needed.
3. If she would wake up, I usually ask her if she needs to go to the bathroom and will set her on the bedside commode and change her Depends even if they are dry. If she would like to change clothes I have those set out. If she wakes up she usually likes to sit in the recliner or maybe just move to the other end of the couch. To get her from the commode to the recliner I've been using the wheelchair.
4. I'm using the mouth swabs (green swabs) to moisten her lips and tongue as needed. There is also an antiseptic wash I've been using. Also, a mouth moisturizer for her lips or chapstick.
5. If she should wake up I would give her a Zofran tablet, they are disintegrating pills so just put one in her mouth with a sip of liquid.
6. Anything she drinks she will likely gag on but it's ok, if she wants to drink let her drink, it's for her comfort. There's some chicken broth in the fridge if she wants something to eat, I usually just warm it up in a coffee cup in the microwave. She likes a paper towel around anything she drinks. If she should want anything to drink, I would try to sit her up some if she's on the couch.
7. If she should pass, call me and I can call hospice, they will call the mortuary. If you need the number for hospice it's on the fridge.
8. If her phone rings it is probably hospice, just answer it, to answer it you press the Send button.
9. Please call me more anything.
I did not think she would wake up, but I wanted them to be prepared if she did and for her to be comfortable. My mom was a strong, extraordinary woman, it would've been just like her to wake up from dying and hand out some instructions.
After Sean arrived and I had given both verbal and the written instructions, I did not wait long to leave. I gave her some morphine and I cleaned out her mouth and moistened her lips. Before I left I kneeled over her, I said, "Goodbye Momma, I love you." And for the first time that day to my surprise she opened her beautiful fading blue eyes, looked at me, and mouthed silently the words, "I love you too." Those were the last words my mom spoke to me.
And I left. Without second thoughts, without hesitation, I knew she was going to die and I left. A thousand times since I have second guessed that decision, cried and screamed at myself for leaving her. However, I reflect back on that day and how sure I was that I was making the right decision and that brings me comfort. I will always have some regret for leaving her, for not being there for her final breath, but I know I made the right decision.
Teal and the kids left with me too. We could've traveled back to Noblesville together, but I asked that we drive separately. I needed to be alone. Teal understood. I drove back listening to Pink's "Just Give Me a Reason" over and and over again. I still listen to that song over and over. It has nothing to do with my mom dying, nothing to do with anything in my life really, but it resonates with me.
We went back to Noblesville stopping at McDonald's for some food. We ate at the house while the kids ran around. Spencer was there and Kristina had come over. I started what was the first of many loads of laundry.
I forget who texted me but they wanted suction for mom. I called Nancy and asked what was going on. The atropine drops were not enough for the secretions and they were beginning to overtake her. Nancy thought some suction might help. They had laid her on her side and this seemed to help too. I called hospice and let the nurse know what was going on. The nurse was surprised at her condition, but I told her I was not. Mom had put on a grand show for her on Monday. She said she would call the oxygen company to get suction there as soon as possible. I asked her if she could go make a visit since I wasn't there and she said she would.
I went back downstairs and I told Spencer and Kristina what was going on. I got clothes out of the dryer and put wet clothes in there and a new load of dirty clothes in the washer. I took the basket of the girls clothes to the dining room table and began to fold them. I stopped and went into the kitchen. My phone lit up on the dining room table, Kristina picked it up and said, "It's Carly."
And I knew why she was calling.
I picked up the phone and said hello. Carly said, "Danielle...I wanted to call and tell you...your Mom has passed away."
Hospice had arrived after she died and they said they would call the mortuary. Carly asked me if I wanted them to keep her body there until I got back. I told them no, that wasn't necessary, the mortuary can take her.
I got off the phone and told Spencer and Kristina. I cried but only for a brief moment, there was not time to cry, there was so much to do. I had told Carly to tell Ryan to please let people know. I didn't have the strength. I knew I would cry. I desperately wanted to call and tell my dad and mom's brothers, but I knew that that would break me.
Teal was asleep on the couch upstairs with Noey. At first, I thought I would just let her rest, she had gotten very little sleep the last two days. But then I remembered that she was more than just one of my best friends, she was Sean's wife and Sean would need to hear from her. So I went upstairs and woke her up and told her the news.
It took us about an hour but we finished up what we needed to do and we all headed back to Muncie. The mortuary had called me and I set up a time to meet with them on Saturday with my brothers. A woman from the church was scheduled to bring us pizza that night. She called me expressing her condolences and said she didn't want to intrude but wanted to know if we still wanted pizza. I said we absolutely still wanted pizza. She laughed.
We got back to her apartment and walked in. My mom who had lay dying on the couch when I left, was gone. The couch was empty.
We ate pizza and Sean told me the events of how it had happened. I called him again yesterday so he could give me the details again, this time with a perspective from a year passing by.
He said after I left, everyone had been near her but after they laid her on her side and she seemed more comfortable Andy, Nancy, Carly decided to sit at the table and eat a late lunch. Sean sat on the floor beside our mom. He was holding her hand when she opened her eyes. He tells me he didn't tell anyone she had opened her eyes. Sean and Teal's son Liam has severe autism and he said that when he engages with you, you don't go do something else or do anything, you just engage. And that is what he did with our mom, he locked eyes and engaged. The two sets of eyes that never saw eye to eye their entire relationship engaged and saw eye to eye. How incredible I reflect back on that day and that Sean was there with her as she died. The son who had left to spread his wings across the country in California over a decade ago had returned home. It was not Ryan and I who lived fairly close by and were part of her day to day life, it was Sean who was with her as she died. While never quite understanding Sean, she loved him fiercely, she was his biggest defender when he would go against the grain with others.
Sean tells me that at first the expression on her face seemed one of anger, but it was not. He describes it as "intense resignation." Death is what had awoken her and made her open her eyes. She had tried so hard to fight it, but there it was, as it will be for all of us one day. He rubbed her head and told her that it was okay, she could go on home, she had fought a good fight, she needed to go be with her parents. We loved her and we would be okay. Her eyes softened and she stopped breathing as she gazed at Sean. She passed away at 3:39 PM.
Sean called Nancy to her, to confirm what he suspected, that she had died. She agreed and Sean placed his hand over her face and shut her eyes. She was there for his first breath and he was there for her last. Sean tells me he walked outside for some fresh air and to escape the heaviness of the room. The day was sunny, the birds were singing, the wind was blowing. Life goes on.
The children played as we chatted at the table. Sean made a post to Facebook to let people know, as did I. I found a picture of her and her granddaughter Caitlyn who had passed away at 11 months old from spinal muscular atrophy.
The kids had taken off the cushions on Mom's couch and were jumping on it. We let them. Sean later made this post on Facebook:
Sean and Teal and the kids were going to back to the hotel. They would be checking out and staying in mom's apartment. Carly headed back to Roanoke and Spencer and I headed back to Noblesville. There would be so much to do in the upcoming days.
I went to bed that night, the bed I had not rested in since her decline had started, and reflected on what I had been through. My mom was gone in an extraordinarily short time from lung cancer. In just a mere 4 months, a season, she had gone from:
This
To this:
The clocks, they did not stop. Oh how I wanted them to, but they did not. There would be no time to cry for many months, there still has not really been any time to cry. Crying will make me tired and there is no time to be tired. There are many days I wish my heart would've stopped beating with hers, maybe it did, but life goes on. We have to hold our heads up and breathe through the enormity and the beauty of it all.
I laid down in bed that night, and I shut my eyes and I went to sleep for the first time in a world without my mom.
~~~
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message She Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.
She was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.
The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.