It was finally Tuesday morning after a long, long weekend and my mom was supposed to have the radiation to shrink the tumor on her tailbone that was compressing the nerves in her legs and pushing up on her spinal cord, causing massive amounts of pain. As they always do in the hospital, they had scheduled it at some ungodly hour in the morning. I was exhausted. I had practically spent the entire weekend at the hospital. As badly as I wanted to be there with her, I knew they weren’t going to allow me to go into the room with her.
I don’t think I’ve ever been so scared in my life as I was that weekend. There was a few days there that I really thought it was the end of the road and she wasn’t going to pull through. When she sent me a text that was just my aunt’s phone number typed out, that Saturday, I got really concerned. I noticed that weekend my normally pretty technologically savvy mother was having trouble using her own phone. My mom was always into gadgets and technology as long as I could remember and once she got an iPhone, forget it. She was addicted to it. She was always on the damn thing, even if I was sitting there talking to her. If ever she was with anyone and you’d start talking about something and there was a thing you weren’t sure of, she’d pick up her phone and start searching for answers. That weekend however, she was completely unable to navigate her way through the phone. It was scary to see her having these, for lack of a better term, brain fart moments where she’d be searching for something and be stuck in the totally wrong place on her phone. Say she wanted to find a product on her Amazon app, I’d see her going into the calculator app and just sitting there staring at the phone in a daze. It was almost what you’d expect someone with Alzheimer’s to do.
She lost control in many other ways as well. The day I brought her into the hospital she was able to walk. She walked into the doctors office earlier that day and out. The first day she was in her room (which she shared with another person) she was able to walk to the bathroom. Then a few nights later they had to bring a portable commode because she couldn’t make it over to the bathroom which was on the opposite side of the room. After a few more days she couldn’t even get up to get to the commode and so they put a pull-up type of adult diaper on her. That became too painful to change and so a day or so later they had to put an actual diaper on. She couldn’t even pull herself up in the bed. Her legs became completely useless and she was completely bedridden a week after she came into the hospital. That was a very hard thing to watch. My mom was a very self conscious woman. She was never happy with her looks or her body. She was always going off and on diets for my whole life. After her kidney transplant she blew up like a tick. The steroids slow your metabolism and if it’s already slow, you pack the pounds on. Every time the nurses had to change her she’d apologize. I would’ve done it if I could’ve but it was a two person effort because she couldn’t sit up. They had to roll her to one side place the diaper on, roll her to the other side and then back to her back, which was incredibly painful for her.
Aside from the radiation, during the whole weekend and on Monday my friend Kathy who was a nurse kept telling me that my mom needed dialysis really badly because her creatinine levels were off the charts. My mom was resisting the dialysis like no one’s business. In my opinion my mom was more scared of the dialysis than the cancer. I believe she was traumatized by her kidneys failing back when I was young, and reliving that horror was her worst nightmare. Dialysis is not an easy thing. You “give up” four hours of time, three times a week. If you work like my mom did, it’s four hours a day, three days a week that’s getting taken away from your kids, your husband, and yourself. You must eat a very strict diet and when I say diet, I’m not talking about the kind you go on to lose weight. It’s a diet like where you can’t even have something as simple as a banana or a potato because they’re high in potassium and too much potassium can cause heart problems and all sorts of issues. Dialysis just drains you in every possible way, mentally, physically and emotionally. She resisted it so hard.
On Monday morning I spoke with the attending physician. She told me that my mom was in dire need of dialysis. It was life or death by this point. She told me all the horrible things that could happen if you don’t do dialysis. Having not kidney function could cause so many other organs to malfunction or fail. Her blood could become too acidic, she could have a stroke, etc etc. she told me that my mom wasn’t consenting. The doctors would ask her if she wanted it and she’d beat around the bush and say, “well if I have to I will but I don’t really want to.”. She told me that the nephrologists (kidney doctors) needed clear and concise, yes or no answers. I was so worried.
Another thing that happened that weekend was that I apologized to Aunt Debbie. When it came down to it, my mom and her were the closest. In fact we used to call them copy and paste. If one got something, the other always had to get it. They even drove the same car just in different colors. They were like the Patty Duke twins only they were sisters. My mom was very upset that we weren’t speaking and so I wanted to bury the hatchet once again, for her sake. I didn’t give her some over the top apology. I basically just said that I was sorry for everything and just thought we needed to be there for one another, but most of all for my mom. She agreed and so it was good to be on speaking terms again.
I called her after I spoke to the doctor. Her and Aunt Bea were coming down to the hospital. I caught them by the elevators and explained what the doctors said to me and asked them to back me up on the whole dialysis thing because my mom really needed to do it. It was do or die at that point in time. My mom finally agreed and I explained to her that she had to give a clear answer, yes or no, to the doctors and that she had to stop beating around the bush. The doctors came in and finally she agreed. So now she had the radiation in the morning and the dialysis scheduled for the next day.
The radiation did not happen that tues morning. They ended up bringing her in early in the morning and they couldn’t do the radiation in her bed, so they had to transfer her from one bed to the other and that on its own was very painful for her. Once they got her on the table, they needed her to stay completely still as they shot the radiation. She tried her hardest but she said the pain she was feeling was so excruciating that she just couldn’t do it and so they sent her back up to the room with a plan to try later in the day. I had to bring my son to school and on the way home I called my mom and that’s when she explained what had happened. She told me they were going to give her more pain meds and try again around lunch time. She was so scared and nervous. I could hear it in her voice. She hadn’t slept well that whole weekend. I think she was afraid to fall asleep because she thought if she did, she may not wake up. I was in fear of that too, believe me.
I decided that I had to bite the bullet and bring my son up to the hospital that day. I knew seeing him would lift her spirits. My mom loved my son more than anything in this world. I mean she just adored him. She spoiled him like a grandmother should, in fact she went above and beyond. She just loved seeing him, hearing him; looking at him, everything. At nights when we were home and she was at her house, I’d FaceTime her on my iPad and she’d stay on until my battery died just because she loved seeing him that much. Sure enough my plan worked. She was so happy to see him and so they let us walk down with her to the radiation section of the hospital and we waited with her until they took her in. She was finally able to sit still and I truly believe seeing my son is what gave her the strength to pull through.
Aside from the radiation there was the he fact that my mom needed the dialysis so badly at this point, she was really out of it. They had to put her on oxygen because her lungs were filling up with fluid. If your kidneys aren’t functioning you are unable to expel excess fluids and so it finds its way through your body. Your ankles will swell, your eyes will get very puffy and you will be really uncomfortable. I think it also makes you kind of delusional as well and so after the radiation treatment, she was really out of it.
She finally consented to having a dialysis treatment and so that day, right after radiation, they wheeled her up to the dialysis unit. She was so tired that day. They had her up early for the radiation and now they wanted to do dialysis too. They wheeled her up to the dialysis unit and by this time she was out of it. She must’ve maxed out her pain pump button quite a few times that day. She was holding on to the button for dear life that day. By time they rolled her up she was conked out. She pretty much slept through the whole thing. Once she was all hooked up, I left briefly to bring my son home.
When I came back up to the hospital that night. I walked into the room and Uncle Bob, Aunt Bea and Aunt Debbie were all there. Whatever day it was, I was really worried about my mom and so when I came in the room I sort of walked past all of them and went straight to my mom to see how she was. Remember, she was having trouble texting and using her phone, so I hadn’t really been able to communicate with her like I normally would. They weren’t my concern. I hadn’t seen or spoken to them in months. Still after I said hello to mom and made sure she was ok, I turned around and said hi to my aunt Debbie and aunt Bea. I went to walk over to my uncle and he’s a tall guy, over 6ft tall, and he didn’t even look down at me as I was approaching him. It was like he was staring right through me. He kind of turned his head away from me. That was not like him and so I kind of just turned around and walked away. I had no idea why, but he gave me the could shoulder.
A few minutes later my brother and Satan enter the room and suddenly there’s 9 people in this tiny crowded space. I knew my mom was not really up for visitors that night, but what am I going to do, start telling them they can’t come? I wasn’t about to do that. It’s bad enough I am already the family-wide scapegoat, I didn’t need to give them another reason to blame me but I could see my mom was really, really drowsy. She had a long day. As she’s sitting there with her eyes rolling into the back of her head, fighting to stay awake, my grandmother (who had no idea my mom had cancer at this point) is sitting on the chair next to her, talking to her. My aunt Debbie is on her phone as usual. Aunt Bea is talking to her. My brother is taking care of his kid and Satan and My uncle Bob are having this weird, almost flirtatious convo in the corner. All you hear is Satan’s voice non-stop (as usual) and my uncle is cracking all these corny jokes. I just kind of sat back in amazement that no one was grasping how bad my mom looked or that she was tired and probably didn’t need all the commotion in her room. It was like a fucking social club in there.
My mom kept looking at me the whole time and without having to say I word, I knew exactly what she was thinking. Me and my mom had that kind of connection where we could practically read each other’s minds. 9 out of ten times we were thinking the exact same thing. I was starting to almost feel angry that they were all there and so I stepped out into the hallway for a minute where one of the nurses saw me and asked if I was ok. I told her I just felt like there was an overwhelming amount of activity in the room, and like no one was being considerate of what my mom went through that day. She was drained. The nurse told me that if I wanted her to she’d kick everyone out. I told her it wasn’t necessary but it was just a lot and I needed a breather.
I go back in the room and after a few minutes Satan makes her usual, “we gotta go because __________”, excuse and her and my brother start saying goodbye. I see my uncle Bob slip out of the room, into the hallway and he’s just kind of standing there waiting. My brother and Satan finish their goodbyes and when they walk out into the hallway, uncle Bob motions them to follow him. My husband and I were texting each other while this was happening. He was at home with out son and so I send him a text telling him to call me. I walk out of the room and tell him to just talk to me about anything. So he starts saying all this random shit and I’m just “ah ha-ing” and “yeahing” back to him as I walk down by the elevators. I stop at a point where I can see my brother, Satan and uncle Bob all kind of huddled together and I stood there for a second and watched. It was just weird to me. After everything happened with Aunt Bea and Uncle Bob’s son and him molesting my cousin, me and my brother stayed away from that family. Prior to then we always hung out with them but that changed our relationship. My brother never particularly cared for either one of them, my Aunt or my Uncle and I found it so strange that now all of the sudden they’re all close and stuff.
You see, that prior week I was on the phone with my brother and he and I were discussing everything that was going on with my mom and what the future held for her. It was apparent at that point in time that my mom was not going to be able to go home and live independently. To be honest, at that point i had said to my brother, “I don’t even know if she’s going to make it out of the hospital this time.”. Things just were not looking good. I was then explaining to him what the social worker told me. That should she get out of the hospital she will most definitely have to go to a rehab facility. From there on, I offered for her to come live with me. My husband and I were going to give her our entire family room. She’d have her own private entrance and bathroom. It would be like her own studio apartment.
As I’m explaining all of this to my brother he cuts me off at the rehab facility part and says, “and yeah, when she gets out we have to get her over to an elder care attorney because if she goes into a nursing facility, they’re going to take all of her money when she dies.”.
That statement right there told me EVERYTHING I needed to know. I’m talking about where she’s going to live and how she’s going to survive and he’s worried about her money (which is essentially his money). If a nursing facility was going to take all her money and provide the best care for her then that’s what happens. Oh well. I didn’t care. Keeping her alive was all I cared about . I got so angry when he said that, I just couldn’t hold back. I said to him, “what the fuck are you even worried about that for?” and then, “you are sick!”, and then I hung up the phone. He tried to call me back but I didn’t want to speak with him.
I’m watching, my brother, Satan and uncle Bob, huddled up, whispering to one another near the hospital elevators. Finally I decide to make my presence known. At that moment they all sort of jumped back and they started scrambling and doing that whole, “So yeah, we’ll talk….call me this week,”thing that people do when they’re being shady fucks. I consider myself someone who has very sharp perception and intuition. I’m very in tune with what’s going on around me. It’s hard to get one by on me. That’s why my mom never threw me surprise parties because she knew if she lied; I’d be right on to her. I’ve always been like that, my whole life. I just always know what’s going on and something about that whole situation just didn’t feel right and it didn’t seem right. Something extremely shady was going on. Uncle Bob wouldn’t so much as look at me when he came to the hospital. He never said hello, goodbye, NOTHING. For a while now my husband and I had suspected my Aunt Bea and Uncle Bob were the ones who were advising my brother and Satan to do all the shady shit they were doing. Going through her safe, her mail, her financial statements. They were rounding up her assets trying to figure out how much she was worth. It was sick.
From that point on it was abundantly clear to me….. my brother and his wife were only in this for the money. They did not give a flying fuck about my mom and whether or not she lived. They were banking on her death.
(To be continued in my next post)