***please note that this post deals with very strong themes of loss. If you have lost someone close to you, particularly to an illness, please proceed with caution.***
I don’t know how to fall apart. How to let go. How to cry so hard that I snot all over my shirt and have mascara running down to my toes. I used to know how to cry like that every now and then. Now, I can’t. And for some reason, that’s really frustrating.
The realization hit me on Saturday night, as I was getting off the Subway at Park Place to walk down to Eataly to meet my roommates for dinner. A song came on my Spotify playlist that sent me into what would be a spiral, but all I could do was screw my face up in the “I am about to ugly cry everyone make way” way and make some questionable sniffling sounds. WHERE WERE THE TEARS?! Wait, did I even want tears? Why was I upset that I wasn’t crying????
In an attempt to psychoanalyze myself, which is truly one of my favorite pastimes, I think it has to come down to that I’m afraid to truly feel pain and therefore to express myself. YES PEOPLE, I AM AFRAID OF THE UGLY CRY. Don’t worry, it’s not about the faces, I make plenty of heinous faces in my everyday life. But seriously my poor little (okay not so little) body is trying her damnedest to protect me. Which is so cute and nice to think about, but also Girl, please just let me do this. Let me cry!!!!!!! I need it!!!!!!!!!!!
I truly don’t even know how to get there now. Do I sit myself down with a bottle of pinot noir and P.S. I love You? Should I pour over old photo albums, or listen to all of my usual trigger songs? I just don’t know how to appear “not okay” anymore.
I was my mom’s power of medical attorney. That means I was the one who technically made all of the decisions. For a long time, she was able to make them for herself, but there came a time when she stopped making them personal choices and started involving me in the process. And then there came a time when I had to make the decisions myself because she was no longer able.
My family always helped me when I asked for it. But I think they also trusted my instinct and were likely to do what I suggested.
About three days after I came home for a long weekend at the beginning of July 2018, I knew that things were bad. I thought we were looking at months. Little did I know, we had mere weeks. I had already made up my mind that I would go back up to New York for the rest of July, and then would return home in August to be with Mom and do whatever needed to be done.
I was on the phone with her best friend and I told her this. Mom had been adamant over the last 4 years that I was to stay in New York and to live my life. She didn’t want me worrying and coming home over her. She would be fine. And she promised she would tell me when to come home. She was the strongest person I knew, and she did not want me or my brother to have to see her sick and in pain, not to keep up that front, but because she didn’t want us to hurt.
I told her best friend that I would be back home in a couple of weeks, and would stay for however long it took. Kimberly said, “Good. I think that’s what you need to do. I know she won’t tell you that, but I think it’s what needs to be done.” We started to get emotional, and I said to her, “Kimberly, I promise I will not let her die in a hospital.”
Sometimes there are promises that the universe doesn’t allow you to keep.
Things began to progress with Mom. A few days after that conversation, I told my dad that we needed to bring my brother home. The cancer had caused a blockage in her small intestine, and things were serious. We always knew that this was something that had the ability to kill her.
The nurses and doctors did what they could before bringing a surgeon in. I held her hand when they inserted an NG tube through her nose and into her stomach, which was one of the most horrible things I have ever watched happen. But she didn’t cry. She remained strong. They hoped that would fix things, and when it didn’t, it was time to bring in a surgeon.
We had been in the hospital for probably about 7 or 8 days at that point. Mom had asked me to start making arrangements for friends and family members to come by. They would come, fully knowing what it meant, and still, she was able to put a smile on their face. The surgeon told us what we had already expected to hear. Technically, she could operate. But the risk of Mom not making it through the surgery was high. What was the bigger issue though, was that even though the surgeon thought she would be able to clear the blockage, she knew that she would, in the end, be doing more damage than good, with a number of things likely to go wrong post-op. Mom still kept it together.
It was just Mom and me when we got this news. We both knew what it meant, but I don’t think either of us was willing to face it. I’m not sure if it was right then or a little while later when we repeated the news to my Dad, but finally, she broke down.
“I’m tired, Ailsa. I am so tired. I can’t do this anymore.”
“I know, Mom. It’s okay.”
One thing that is tragically beautiful when you know someone you love is getting to depart the world, is that you have time to say all of the things you never got to say.
Mom and I got to tell each other everything. She held me as I laid in her hospital bed and wept and told her how much she meant to me. She told me that she was proud of me, and that I would always be the best of her. And she stroked my (dirty) hair and we didn’t say anything at all.
Yes, your heart aches while you speak the words, but my God is it wonderful to not have left anything unsaid.
After that, we had one goal: get mom home and get her comfortable. Whatever we had to do. If we needed to higher an around-the-clock nurse, than that is what we would do. We would have hospice set up equipment at home, and have one of their doctors come out once a day to check on her. I would have to learn how to administer some of her medications. I have a phobia of needles but had already been giving her shots in the abdomen at least thrice daily, so I figured that I would just learn how to do this too.
The next two days were the hardest of my life. We learned that in her condition, it was going to be near impossible to move her to the house. Hospice straight up told us no. I had to tell her all of this. And I wept. I had done such a good job at holding us together, even when we were getting blow after blow. I thought, fine, if this is our fate then we will deal with it, and we’ll do it at home together, where we belong. God, all I wanted was for us to be at the house, as a family, with the dogs, with her comfortable, and that idea of peace had been taken away.
So then I decided that “No” was not an acceptable answer. And with the help of one of the doctors, I fought them.
Finally, after 24 hours of going back and forth, I finally got the OK from Hospice. But it was going to be hard. There was a lot of equipment to set up, a lot that could go wrong, and there was that matter of the NG tube that she still had. Some of the possible repercussions of taking it out where truly horrifying. But I thought that we all had this idea of being at home together, and I clung to its comfort. I explained this all to Mom, and for the first time in all of this, I could see the fear in her eyes. I could see how terrified she was. But still, she said, If you want to go home, then we will go home.
“I want you to be comfortable. I just want you all to feel okay with all of this.”
As she lay there, beginning to go, she was still set on putting our needs before her own.
I went home that night to sleep for the first time in over a week. I had been staying at the hospital every night with her, so it was the first time that I was fully alone in days.
So I began to pray. I prayed for peace, and for strength, and to know what the fuck to do. And then I drank an entire bottle of prosecco and felt sorry for myself and passed out with my contacts still in.
The next morning I woke up, and I was ……….okay? I was okay. I felt zen. Seriously. I definitely did not feel like I had chugged a full bottle of cheap bubbly last night. And I knew what needed to happen. I got in the car to head back to the hospital after washing my hair for the first time in about 7 days, and Ariana’s brand new song was on the radio.
I wanna be in, like, all the time
Ain’t got no tears left to cry
So I’m pickin’ it up, pickin’ it up
I’m lovin’, I’m livin’, I’m pickin’ it up
We’re on another mentality
Ain’t got no tears left to cry
So I’m pickin’ it up, pickin’ it up
I’m lovin’, I’m livin’, I’m pickin’ it up
Pickin’ it up, pickin’ it up
I’m lovin’, I’m livin’, I’m pickin’ it up…
I hummed along to the song and it gave me strength. I knew that it was time to put the tears away for now. I knew that I was going to have to have a lot of difficult conversations, and I knew I was going to have to fight for them.
I got to the hospital and asked for a moment alone with Mom. I held back the tears that wanted so badly to break through, and I told Mom that I didn’t think it was realistic to try to get her home. The look of relief on her face nearly broke my heart. She agreed with me and told me how scared she was at the thought of trying to get everything she needed at home. She was also in tremendous pain, and we didn’t know how they would be able to manage that out of the hospital. Our other option was to move up to the Palliative Care Floor. We knew that it was going to take a lot of convincing to get Dad and my brother to agree to this. But, we were strong ass bitches, and we could do anything we set our minds to. And has also woken up that morning with the same realization: home was wherever we were together.
After the decision had been and arrangements were happening, questions arose. What was exactly going to happen her to Mom? What kind of medication would she be taking upstairs? What was going on with her body?
How was she going to die?
How long and how was an answer that nobody wanted to give us. Mom asked her primary oncologist about a timeline that day, but he said he couldn’t say. With this condition, it depended on the person. Everyone was different.
Mom started to get extremely frustrated. Obviously. And it hurt me immensely to see her like that. She finally broke again and was laying there, in her bed, in pain, sobbing. “I just want to know what’s going to happen to me.”
Seeing your mother, the woman who has given you life, given you everything… seeing her hurting and scared and angry and sad… Well, it will make you angrier than that time your ex boyfriend cheated on you and tried to tell you it was your fault because you were in Europe. Not the time for joking? Apologies, but this is my story remember?
I ran out of the room and to the main triage area on the oncology floor.
“Where is Anna, and where are our nurses?” Anna was the doctor who has helped with hospice. She and one of our nurses appeared. “What is going to happen to my mother.” I was shaking, I was so angry at that point. Neither of them spoke, but just looked at each other and then back to me. “HOW IS MY MOTHER GOING TO DIE?”
At that point, a single tear rolled down Anna’s face and I realized that I was sobbing as well. I apologized. “Please, just tell me.”
So Anna brought me over to sit down on the couch in the waiting area, and she talked me through what we were to expect in the coming days, possibly weeks.
And then I went back into our room, and had to deliver the same information Anna has just given me to my Mom.
I want to say that there’s a lot that I’m leaving out, details big and small, because some of it still hurts too much to talk about. And there’s a lot that’s too personal that I’m not ready to share yet. And some that is quite frankly just too sad, and I don’t want your heart to break along with mine.
We made arrangements to move to the room where my mother would take her last breaths. My Dad and I packed up our current room, the one we had been in for 10 days at that point (though with the amount of shit we had you’d think it was more like 10 weeks) and we waited for them to prepare the room.
About 2 hours later, we got the message that it was ready and that the nurses from the P Floor would be down to help us move shortly. Dad and I got all of our belongings up there before they came down to move Mom up. They moved her in her bed, because at that point it was too much for her to walk the 4 feet distance to her bathroom. When we were outside of the room, I could see how stressed out she was. I was distraught but trying to keep it hidden from her. And she looked at me and said, “Are you okay with this?” And I hugged her and said, “Are YOU okay with it?”
The next 10 days or so were both the longest and shortest of my life. One of the conversations that Mom and I had before going up to the P Floor was about her pain management. They hadn’t been doing a good enough job at managing it on the Oncology floor, and they made it clear to us that on the P Floor it would not be an issue.
One of Mom’s main issues though was that when they did have the pain under control, she was completely out of it and loopy and couldn’t hold a conversation. She told me that she would rather be in pain and have more time to spend with us than to be knocked out or loopy.
That seems like it’s a no brainer, but the kind of pain she was in wasn’t something that any person should ever have to feel. It would have her screaming out and writhing around the bed, trying to escape it. What was I, her power of medical attorney, supposed to do with that? I didn’t want her in that kind of pain. And I also wanted as much time with my mother as possible. What do you do?
The night that we moved up to the P Floor, they started her on an Ativan drip. This would help keep her anxiety down, which was a major side effect of the type of cancer she had (Neuroendocrine, if you were wondering). Around that time, she also started sleeping a lot more. We also upped her pain medication the next day. We weren’t sure if she was sleeping because of the medication, or because her body was starting to shut down.
Anna told me that this would start to happen. She would sleep, and she would seem peaceful.