It was Thursday the 17th of November and my brother and I were due up at the hospital around 12:00pm to meet with the social worker. I had no choice but to bring my son with me to the meeting. My husband had just started working with a new company in his union, that week and he couldn’t really take off. Going up to the hospital during that time of day was crazy. It would take at least ten minutes to find parking because the whole garage was so packed. The elevators also took forever. There were crowds of people waiting and the elevators were packed in like sardine cans.
I walked up to the crowd of people waiting and we stood in the back. Suddenly my son spotted my brother standing in the crowd. I had no desire to be near him unless totally necessary. My son was calling his name and I kept trying to quiet him down. My brother didn’t even turn his head and look. The elevator came,but he was waiting for the same one and so I let everyone else go in and waited for the next one which took almost 5-7 minutes. We got upstairs and headed down the circular hallway to my mom’s room. Both buildings from the outside looked like tall, cylindrical octagons. The hallways went around in a circle and the rooms were on the outer edges with the nurses stations in the center. As I made my way around I saw my brother was standing in the hall. He didn’t say a word to me when I stopped right next to him and peaked in the room. I figured they were changing my mom’s diaper, but when I got a better look I saw some machine in there and a bunch of doctors and nurses. I walked in to see what was going on. I didn’t give a fuck. I never waited in the hall. That was my mother in there. I wanted to know everything that was happening.
I walked in and one of the doctors started talking to me. They said my mom had some type of event cardiac event. Her heart rate was sky high. They said there was a possibility that she had a minor heart attack She was stable though, but just kind of seemed out of it. She just looked really scared. They told us they had to do an EKG. She was supposed to be a part of our meeting with the social worker but at that point it didn’t look like she was going to be able to participat, and the social worker directed us to go to the waiting room down the hall and she’d join us in a few minutes. It was totally awkward sitting in a room, alone with my brother. I hadn’t been in a room with him for any length of time since the palliative care meeting on Halloween. I felt like I was sitting in the room with a complete stranger. He wouldn’t even look up except for every few seconds when my son would make noise. He was zoned into his phone.
The social worker came in and eventually we started the meeting. Like many of the others before, I recorded this one on my phone. I listened to it before writing this post and so many things came flooding back, for instance, the week prior was the day I had the conversation about hospice. I held it in the whole weekend thinking we were going to meet with the social worker Monday morning, but she cancelled it. The word hospice played and played in my head the entire week. Every time my mom’s friends or whoever would call, I’d sit there listening to her tell them her plans for the future which consisted of going to the rehab center for a little bit, then moving in with me and my husband and going back to work. (She worked from home). It broke my heart.
From the first time I spoke to the social worker and even a few weeks before then. I was trying to tell my mom to quit her job and go on Medicare and try to apply for Medicaid. She had saved all her money from her settlement (from a malpractice suit) but she was so scared to touch it. Now was the time for quitting her job and using that money to live off of. It was her money and she went through HELL to get it. I’m 100% sure she would’ve taken her health and not having kidney failure, over her doctor’s insurance money. No matter how much I’d say it, it fell on deaf ears. I was happy that she was still motivated and had a will to live, but her goals were unrealistic (as far as working goes).
The Social worker basically discussed what her plan would be. From her point of view there was nothing medically keeping her there. They got her pain under control and she was stabilized. At the same time they could not release her without having a safe plan in place. My head was reeling through the whole meeting because I was a little confused. That past week they were recommending hospice but still making a plan for a rehab. She explained that they did so based exclusively on her dialysis treatments. Prior to my convo about hospice, she hadn’t been able to sit up in a chair for more than an hour. In order for her to go to outpatient dialysis she had to be able to sit up and support her “trunk” for at least four hours. That Monday she did it and so now dialysis and rehab were an option, once again.
Basically said, the whole purpose of the meeting was to, discuss how we were going to get her out of the hospital and preserve her quality of life in a way that also provides the most comfort. We discussed things like rehabs and nursing facilities, insurance and what’s going to be covered and not covered, applying for Medicaid and Medicare, and things to that nature. My mom’s case was very medically involved and so a lot of places just lacked the ability to meet her medical needs. Others weren’t covered by her insurance. It was very complicated and she was telling us how to advocate for her.
My brother didn’t disappoint though. As usual he had to steer the ship into the iceberg. We started speaking about the chemo drugs she took and how that works as far as rehabs administering them. That lead us to her telling is how they’d re-evaluate her to see if they’re working. They weren’t going to change the fact that she was terminal, but they could prolong her life for a while longer. I said, “yeah, like we don’t know how long……..I don’t want to know how long. I don’t think she wants to know how long”. I was basing that off the fact she started crying immediately when my brother asked the SAME fucking thing in the oncologists office, one time. My mom was extremely scared and in complete denial. I had seen the reactions she had to some of the stuff the doctors told us. I can say with 101% certainty that she didn’t want to hear how long she had left, and anyway, no one could ever actually know that. I didn’t see how it was conducive to her quality of life. Of course my brother had to argue and say, “I think at some point, she may need to know how much time she has left cause……so she can make some decisions…”. Of course, he is only thinking of himself. I spoke up again and said, “I don’t think she needs to know that.”. He goes on to give us a hypothetical, ” If it gets to the point where say, the doctors tell her she has something like six months to live……” and the social worker cuts him off and says, “She may want to get somethings in order, she may want to make certain decisions..”, and my brother gives her a very enthusiastic, “EXACTLY!”.
The social worker then went on to explain to my brother, that while it may be beneficial to some, my mom wanted to bury her head in the sand at that point time. She didn’t want to hear it, and if she wasn’t ready to hear it, we were better off not telling her. You can hear the disappointment in my brother’s voice after she says that to him. It’s like he was all excited to tell her.
Throughout my mother’s entire hospital stay, every time I was in the room with him or even over the phone with him, while having discussions about what the plan was for her, for when she left the hospital, he had to bring up her getting her affairs in order in some way, he did it over the phone with me during the second week she was there. He did it at the palliative care meeting. He even mentioned it to my husband a few times in conversation. I matter what, her “affairs” always seemed to be his top priority.
Whether it was about bringing her to an eldercare attorney, talking about healthcare proxies a million times, giving her lawyer recommendations, whatever it was clear from the very beginning that was all he cared about. When we had these meetings he’d come with his pen and paper and have a few general questions (that had he been around more in the past year he’d have answers to) and he’d ask them, but no matter what, it was inevitable her “affairs” came up. I never understood what his big concern was. She had a will that CLEARLY stated everything was split 50/50 between me and him. What more did he want? What more was there to get in order?
The meeting ended and we went back to her room. The doctors and nurses were finishing up whatever they were doing. My brother left and I stuck around. I explained to that they were still looking for rehabs. Even though the social worker seemed to be making plans for my mom to go to a rehab or something similar, and it seemed like there was some hope, I just couldn’t deny what I was seeing with my own eyes.
I remembered at end when my dad was sick, like I mentioned before, he had this glazed over look in his eyes. It is hard to explain. It looked sort of like his eyes were just black, like they carried no light in there, and it seemed like they were never really focused on anything in particular, even the TV. They are detached. Normally people make eye contact when they talk to you or you talk to them and that didn’t happen. There’s no movement except for the occasional blink.
I tried to talk myself out of it but that was exactly what I was seeing in my mom’s eyes that last week. Aside from all of the medical issues she had, something just wasn’t right. She slept a lot that day and I just sat there kind of staring at her. She didn’t want to eat which was HIGHLY unusual for my Italian-American mother. She loved food! She hadn’t been eating well for the past month or so but she was entirely skipping meals for the days prior and I don’t believe she ate anything that day either.
I spoke to the doctor in the late evening and he informed me that they thought my mother may have had a minor heart attack earlier that day but they weren’t 100% sure. I helped her get her teeth out and got her ready for bed, even though she was sleeping pretty much the whole entire time I was there.
I really didn’t feel right leaving the hospital that night. I called my husband on my way home, as I did every night, and I told him that something just didn’t feel right, and that I didn’t think my mom was going to make it much longer. When I got home I was just so upset. I had held it together pretty well the whole time which I NEVER thought I’d be able to do, but that night I finally broke down. I laid on my couch in the fetal position and balled my eyes out. I hadn’t cried like that in years. I cried for hours until I eventually fell asleep on the couch. My husband woke me up shortly after, when he was leaving for work around 5:00am and told me to go upstairs in our bed. At about 8:30 in the morning, my phone rang…….
(To be continued in my next post)