Just like that, she was gone. Novemeber 20th 2016 the worst day of my life. 

The last few posts were very hard for me to write. Reading them back to myself, I can see how much I struggled. I am still grieving. As I wrote this it has barely been four months since my mom has passed. I am still in shock. I still won’t allow myself to fully go to that place where I get too deep because I am afraid of being so sad, and crying so much that I won’t be able to turn it off. From this point on in the story we are pretty much up to current times and everything I’ve been dealing with since her passing, and so once I fully catch up to present days I’m going to start talking about the grieving process and how I’m dealing with that. First though, I must finish the story and tell you all what happened in the days and weeks following her death and how crazy that all was for me. If you read any of this story, thank you. 

It was the morning of November the 20th, 2016 when my mom passed away, at 8:04 in the morning. I was the only one with her besides the nurses, who were complete strangers to me. They both looked at me and expressed their sorrow. I rubbed my mom’s arm and it was still warm. I stared to cry and said, “goodbye mama.”. The other nurse turned to me and said that they would give me a few minutes alone. For a second I panicked as if I were a little kid, that they are leaving me alone with her now lifeless body, but then I realized, this isn’t the scary part. The scary part was what I witnessed for the past month. It was just her body and her spirit had left it. It was still my mom. I thought to myself, she was finally at peace, with no more pain and I was ok. 
I got up out of the chair and paced around,  just looking at her. Her eyes were opened but looking down and I could see there was no life left in them. That is another image that is unfortunately burned into my brain. At the same time it was so scary, it was also peaceful. I found peace in knowing she didn’t have to suffer anymore and I didn’t have to watch her suffer anymore. I have never seen a person suffer in agony like that before and in so many ways. While what my dad went through was horrible, terrible, what I watched my mom go through over the course of that past year and especially in the month before she died, I cannot even find adequate words to describe it. Watching a person suffer like that will really make you question of there is a god because no human being should have to endure that much suffering. I have to believe that there’s a heaven and a place where we go on to bigger and better things because otherwise, it all seems to senseless.
I realized my family would be on their way shortly and so I decided to step out of the room to start making phone calls. I didn’t want everyone just showing up without knowing, and so the first person I called was my brother. He told me he and his wife were heading up to the hospital and would be there shortly. He also said he’d notify my aunt Debbie and Aunt Bea and I figured between them, they’d notify everyone else. I went to walk back to the room and the door was closed so I knocked. They told me to wait a moment and that they were just cleaning her up. In the meantime the on-call doctor came to talk to me. He apologized for the loss and had me sign some papers. He also asked me if I wanted an autopsy in which I declined. I’m actually sorry that I did. At times I question why things took such a drastic turn. Why my brother and his wife stayed away from the hospital for those few days before she died.

By the time I was done discussing things with him, the nurses were done. I walked into the room to see they had closed my moms eyes, neatened up the sheets and folded her arms over her chest, simarlarly to how they do it in the funeral home. They also gathered all of her belongings and put them in bags and piled the bags on the table and chairs. She had accumulated a lot of stuff in her months long stay. As I was in there I could almost here her telling me to grab her phone and her iPad before my brother and his wife got it. I knew my mom was like me and she never deleted her text messages. My brother would’ve been devastated had her read the text messages between me and her. I also knew she talked to a lot of people about what was going on and how much she hated his wife. I couldn’t do that to my mom. Even though she physically isn’t here, I felt like it was wrong. 
I walked downstairs to put them in my car and as I was on my way down my cousin Tina called me. Of all of my cousins her and I used to be the closest. Tina was Aunt Debbie’s daughter and she was an only child. I always felt bad that she didn’t have a sibling and so I sort of stepped into that role for her. We used to talk daily since the time she was a young teen.  After my mom she was probably the next person in my family that I communicated with most, but six months before my mom passed she kind of just cut off communication with me, without any explanations. There was nothing that I could think of off the top of my head that I did that would cause her to just drop me like that. In the same token I also didn’t bother to find out what was wrong. I was too busy caring for my mom. I eventually found out it was because of the letter I wrote to her mom. I was shocked. She is well aware of who her mother is and how she operates. I’ve never seen a mother and daughter at each other’s throats more than her and her mom. If my son ever spoke of me the way she spoke about her mom, I’d be really upset. Besides, I don’t think she was presented with my letter in its full context and so I almost can’t blame her for being angry. If you just read that last letter I wrote, it looks as if I’m just being a mean asshole.  That’s how my aunt operates. 
We stayed on the phone for a while. I hadn’t talked to her the whole time my mom was there except for a few texts in the very beginning, after I had accidentally called her one day. I told her all the crazy shit that was going on with my brother and his wife and how they were non-stop harassing her about seeing an eldercare lawyer and health proxies and her “wishes”. I hoped she’d share it with her mom so maybe she’d have an understanding of what was going on and why I’ve been so upset and angry. 
Eventually I saw my brother and Satan coming up to the hospital with their one and a half year old daughter. I figured I’d give them a few minutes alone with my mom, the. I told Tina I’d call her back. I walked into my mom’s room. My brother and Satan are sitting on the chairs and the baby is running around the room trying to lift up the blankets and stuff on my mom’s bed and Satan’s just sitting there talking and laughing as if she’s not sitting next to my mom’s deceased body. My brother just had this blank stare going on. I thought it was so strange and inappropriate that they even brought their baby. They always seem to find baby sitters when they want to go out to the bar but they can’t find one for now? Satan has a 14 year old daughter who could’ve looked after her. I told them I didn’t think there was any purpose for anyone in our family to come up. There was nothing for anyone to do. She was gone. The hospital was at least a half hour drive or more for the majority of my family. My brother agreed. He then turns to me and says, “oh yeah, by the way, we made an appointment at the funeral home for 3:00 today.” It was around 12:30. I had slept a total of just over 6 hours for the last three days. I hadn’t been sleeping well for long before then. I was dealing with insomnia for a long time. I explained that to him along with the fact I just wanted to go home and see my son and my husband and relax. I felt like I hadn’t seen them in a month. I was hardly ever home. I’d spend 8+ hours at the hospital each day. If I could, I’d bring my son up with me in the early afternoon and my husband would come pick him up around 3:30. Most nights, by time I got home they were both bed. I asked my brother why we couldn’t wait until the following day, like we did when my dad passed. My brother then said to me, probably one of the most fucked up things, he has said so far, “well I mean it’s thanksgiving is this Thursday.”. Was he fucking kidding? I’m sorry our mother’s death has inconvenienced your holiday. I said, “I don’t give a fuck about thanksgiving!” It’s so unimportant. My brother was always like that. He did what was convenient for him without taking anyone else into consideration. While he was at his house at a 50th Birthday party and sleeping in his nice comfy bed, I was sleeping on a shitty old piece of hospital equipment for the past two nights. If the roles were reversed I could guarantee he wouldn’t want to go that day either. 
When all was said and done he and Satan stood up and said they were leaving and they’d see me at 3:30. They just walked out. They didn’t even look at my mom, touch her, kiss her or say goodbye, while her body was still somewhat warm. They didn’t even look at her. I know she couldn’t hear them but it just showed me how emotionally unaffected then were by this. I never once saw my brother’s wife shed a tear. I saw my brother shed a few over the days prior but never when she was around. My girlfriend Kathy who was the nurse said that on that last night while I was at my house picking up my clothes and stuff, she walked in the room and was shocked to see my brother sitting there balling his eyes out, like to the point where he doing that weird breathing thing you do when you cry really hard. Of course Satan wasn’t there that night. It’s so sad that he cannot be vulnerable in front of her or show any weakness. I was happy to hear that had some human emotion left in him. Satan  on the other hand, didn’t seem the least bit upset about my mom’s departure. I know my husband cried. In our 9 years together it was the first time I ever saw him cry. 
They walked out of the room with the baby and their empty stroller and left me there to carry all of my mom’s belongings, all by myself. One of the male nurses there who I became friendly with, came in with a box of coffee for us that he paid for out of his own pocket. I felt bad telling him that no one else was coming. I have to say that the nursing staff at that hospital was phenomenal. I had become friendly with all of the nurses. I almost felt like they were my family for that month. They all treated my mom with kindness and compassion and most importantly, dignity. I felt like I was going to miss seeing them and talking to them everyday. Anyway, the male nurse who got me the coffee also went and got me an extra wide wheel chair to help he carry all the bags and belongings down to my car. It still took me two trips to get everything in my car. After the first trip I called Tina back and talked to her for about 15 minutes or so. When I came back in to get the bag I opened the door to my mom’s room and was startled to see a group of young medical students surrounding her bed. They all turned around kind of shocked to see me standing there and when they did I was able to see they had taped cotton over my mom’s eyes. The doctor, who I assume was their professor, started to apologize profusely about me having to see that. She then explained to me why they were doing that. My mom had obviously signed up to be an organ donor. Because they couldn’t use any of her organs or tissue because of the cancer, they were going to see if her eyes could be donated. The reason they needed to tape cotton to them was because so they could keep them moist. It didn’t bother me at all. In fact I was happy to see that they were going to try. I know that would’ve made her happy. 
I finally got back to my car and started to drive away from the place that had almost felt like home to me for those last few weeks. My 30 day parking pass expired that day and I had to pay for parking. It was bittersweet rolling out of there. I was happy to never have to go back but sad at the same time because I was leaving there alone. I had driven my mom home from there several times that year and now that was it. Never again would I drive her anywhere. It was a hard pill to swallow.
I got home and walked in my front door. My son came running up to me yelling, “mommy!”. My husband too. We all just say there and embraced one another and cried. We all sat down on the couch and I went over everything that had happened that day up until then. I told him I had to go to the funeral home and he agreed it was bullshit that they couldn’t wait. Neither of us could understand why they were so eager to get my mom’s wake over and done with and  on with their lives. 
As I was home I received a phone call from the place that handled donations of the eyes. The woman who answered was very pleasant to deal with. She needed some basic and background information about my mom. I ended up being on the phone with her that by time I got off, it was time for me and my husband to leave to go to the funeral home. 
We pulled up and of course my brother and Satan were already there sitting in the lobby. I needed my husband there too. Satan is very quiet when he’s around. I think she’s a little intimidated by him. It was so uncomfortable with her being there. It was like having a (demonic) stranger in the room sucking up all of the good oxygen. The funeral director was a woman, different than the woman who came up to the hospital. The first part of this meeting was completely redundant. It was exactly what we had accomplished in the hospital. She asked us basic info about my mom and once again my brother was looking at me for the answers. My husband and Satan were quietly sitting in two chairs off to the side. Then me moved on to how many days we wanted the service. At the same time I said, “one” and my brother said “two”. I wasn’t really sure why he wanted to do two, but I just went a long with it. I was much too tired and upset to argue. Then she showed us the book of Mass cards and we picked ones that had assorted pictures of flowers. My mom loved flowers. We decided to have a priest even though my mom wasn’t really all that religious. She still believed in god and I think she would’ve wanted him there for her family’s sake because a lot of my aunts and uncles are religious. 
After we wrapped up all of the details, it was time to talk money and how this was all going to be paid for, that’s when Satan jumped in. She had already apparently done her homework and knew that my mom had three life insurance policies and one of them lapsed. I was in complete shock. My husband and I looked at one another and without saying a word I know he was thinking exactly what I was thinking, “how the fuck does she even know about that shit?”. The funeral director said she’d look further into everything and see what was what.
As the funeral director was tallying the costs, my brother turns to me and says, “after here me and [satan] are heading over to [a local Irish pub]. We figured we would go there between the funeral services.”. I had went along with all their crazy bullshit up until this point but there was no way in hell I was agreeing with this. For the last two days Satan was going around telling my family members that we were going to go back to my mom’s house between the viewings. Whatever family member is was that told me that, thought it was incredibly ballsy for her to offer up my mom’s house. They also though it was a little strange. I also found it funny at she was able to lend her own home to a friend’s sister to have a 50th birthday party in, but she didn’t even offer it up for her husband’s family. Someone must of told them that was weird and so now they picked this Irish pub. I had to laugh when my brother said it, I replied to him by saying, ” [our mother’s Italian maiden name], we are Italian. There’s no way in hell we are going to [local Irish pub]. We will honor her by eating Italian food.”. I could see the smoke rising from Satan’s ears. I know she’s the one who picked that place. She is Irish through and through. St. Patrick’s day is her favorite holiday. I told him to go check out a local Italian restaurant to eat at. I wasn’t going to no pub so I could watch Satan get drunk. No thanks. 
After that it was time to go down to the show room of death, as I like to call it . . I was stunned the fist time I had been down there when we were making my dad’s funeral arrangements. It’s like a little store. The first room you walk into is all filled with urns and all these miscellaneous knick knacks and memorial items. You can really customize your wake. Then as you go through there, you enter a large showroom that’s filled with caskets that are all sitting there with their doors propped open. If there’s anything I learned from watching HBO’s six feet under, it’s that death is a business too, and this room confirmed it. 
We picked our casket and went back in the first room to look at urns since we were going to be cremating my mom. As I started to look around I noticed that not only did they have big urns, they had smaller ones too. There was one urn specifically that reminded me of something my Aunt Debbie would like. That’s when I got the idea. I again remembered my mom in her final days, that she just wanted her family and so I turned to my brother and said, we should get these for our aunt’s and uncle’s this way my mom could be with all of them. My brother agreed it was a good idea and the funeral director told us that during the wake she could pull down my mom’s siblings and our grandmother and they can pick the one’s they like. Since my mom told my aunt Debbie that she wanted her ashes mixed with my dad’s I decided to keep my dad’s urn and just add my mom’s ashes. My brother and Satan of course picked out the most expensive urn on the shelf for their house. God my mom would hate to be sitting on their mantle. 
Another thing that hit me as we were down in that room was that I didn’t remember discussing what two days exactly we would be having my mom’s wake and so I asked out loud. My brother answered, Tuesday and Wednesday. I looked at him like he had five heads. That left us with one day to find a place to go between viewings, get flowers and photos together, etc. etc. Again I had to open my mouth. I was concerned for some of my mom’s family who lived out of state, who may want to come to pay their respects. They’d need more than a day or two to make travel plans, especially given the fact that thanksgiving was that Thursday. I mentioned that to my brother and suggested waiting until the day after thanksgiving, to have the wake. Even though it would be hard, we could e at least have people the option to travel here.  His answer was that he already took Tuesday and Wednesday off from work. God forbid my mother’s death ruin his thanksgiving and his three day weekend. He’d rather waste his 2 days off from work so he could enjoy the rest of his week…..selfish fuck!
We walked out of the funeral home and Satan, still reeling about my “we are Italian” comment, ran straight to their car and didn’t say goodbye to either me or my husband. My brother stayed behind and talked with is for a few minutes. He started spewing plans of what we should do in the following days. The next day, he and Satan were going to order the flowers and go to the Italian restaurant. Then he started to go into this bullshit about just opening up my mom’s house and having an estate sale so we didn’t have to be bothered going through everything. I sat there and just looked at him dumbfounded and wondered, did he even know our mother? She actually used to go to estate sales all of the time because she would sell stuff on eBay. She always used to tell me how sad she thought it was that the family didn’t want to be bothered looking through the deceased’s stuff. She asked me never to do that if she died. I never would anyway. I know my mom was very sentimental, as am I. I want to touch and see everything she held. I want to find little treasures like a letter she wrote or card that she saved. My brother and Satan seemed like they wanted to be in control of everything……everything. 

(To be continued in the next post)



Novemeber 19th, 2016 11:30 pm and beyond…. The last talk. 

I was totally sure my brother would be gone by the time I came back. As mad as I had been with him, I still cared about him. I’ve made this analogy before, but seeing someone you love in a relationship with a narcissist, is like losing a family member to drugs. All you can do is sit back and watch them make horrible decision after horrible decision, and there  is absolutely nothing you can do about it. I know my brother, or rather, I “knew” my brother and what kind of person he was. If it was any other girlfriend, I don’t think my brother would’ve left the hospital at all that night. He was gone for four hours. He was well aware of what was going on with my mom and where she was headed. If I were in his shoes, seeing that he had missed the majority of the last three years with her, I would’ve wanted to stay there and soak up every minute of time with her. That goes to show how much control a narcissist has over their victims and how afraid their victims are to go against them. My brother had a choice that night. He could’ve told his wife to entertain her friends on her own and he could’ve chosen to stay at the hospital. I know my brother and I know that one day he is going to be very sorry about the choices he made during this time. I wonder if he spoke to my mom during that time. If he told her he was sorry or told her  he loved her. It makes me sad for him that one day he may see things clearly, but ultimately they are his choices and he is the one who will have to live with them and live with his regrets,….not me. 
My brother left only minutes after I got there and once again, I was alone with my mom during this scary time. There was one saving grace though and that was my nurse friend, Kathy. My mom had been up in that same unit for an entire month now and that whole time Kathy was never actually assigned to be her nurse. Out of the kindness of her heart she checked up on her for me whenever she was working her shift.  It just so ended up though that, that night, Kathy wasn’t even supposed to be there. She was covering for another nurse and she ended up miraculously being assigned to my mom’s room. If there was one thing to be happy about, that was it. I knew Kathy would take extra care of my mom and make sure she was  ok and as comfortable as she could be. 
I was in the room trying to set up the chair I was going to “sleep” in that night. Kathy came in to check up on us. We sat there for a few minutes both just stared at my mom.  We started to discuss how peaceful she looked. Kathy tried to arouse my mom by saying her name but my mom kind of grunted and went back to snoring. The other nurse came in and she and Kathy discussed cleaning my mom up and putting a clean night gown on her. She had been in the same one for several days at this point in time and there was stains and blood on it. Normally I would stay in the room when they cleaned her up but Kathy told me, it was probably best if I left this time. When people are in the condition my mom was in, it wasn’t a pleasant experience and could be quite distressing to the family. I was fine with that and so I took a walk down stairs to get some fresh air. 
When I got outside it had started to rain. I stood there close to the building and suddenly the rain started to really come down and the winds picked up. I saw a wheelchair flying across the street and it crashed into the curb. I remember thinking to myself, this is it. The storm was coming. It just seemed like something out of a Greek mythology tale. Like the sky’s we’re opening up to let my mom come in. The gods were coming to get her. Like the earth was angry for losing such a special person. I started thinking about the advice my cousin Nikki had told me and I knew that tonight was going to be the last chance I had and, so I k ew that this was the night for me to tell her all the things that we forget to say to one another on a day to day basis to the people we love.. Oddly enough though, kind of nervous and also I was scared. Scared that I would get too upset. Scared it was too late and she wouldn’t even hear me. Sacred I would freeze up and not know what to say. 
I went back upstairs and the nurses were finished up and just tidying up the room  I could tell at this point that she was awake. Her eyes were slightly opened. They left the room and it was just her and I,  alone. I closed the door and sat down. I sat there and stared at her for a few minutes. I looked at her arms and the bruises she had from being stuck with so many needles for blood tests and for dialysis. Those were the arms that held me as a baby. Those were the arms that hugged me and comforted me so many times. I wished I could freeze time. I wished I could keep her here forever. I wished she didn’t have to go through all the things she went through. I scanned her over and looked at her hands. I didn’t get many of my mom’s physical features. We could never share shoes because my feet are much larger than hers. We could never share clothes either,but the one thing we’d always swap was rings. Our fingers were the exact same sizes,  every one of them. I thought about my mom taking her rings off so she could roll the meatballs for her Sunday sauce. I realized I never learned how I never even learned how to make the meatballs and now it was too late. I just wanted to take everything in. Her face, her hair, her hands, just everything. 

As I was sitting there I suddenly remembered something. There was something I wanted her to have with her. I had gone to her house a few days prior to look for this necklace that she had, that she always wore. When my dad passed back in 2006, she had gone to a jeweler with an idea that she got from a friend. She took his wedding band and had them bend it into a heart shape. They added also added a bail to it so it would hang on the chain, flat. For some reason though, I couldn’t find it. I looked in all of her jewelry boxes and it was nowhere to be found. I found her wedding band but not my dad’s and so I grabbed that. Then I remembered she and I had purchased these necklaces after my dad passed. They  were crosses in which had a little screw at the bottom where you can put some of the ashes. I had been wearing mine for the whole time she was in the hospital. I took the necklace out of my pocket and quietly leaned over and said her name. Her eyes slightly opened up. I told her that I had something that I wanted her to hold close to her. I said to her, “this is the cross with daddy’s ashes, I know know much you have missed him for the last ten years and I want him to be close to you, so I’m going to wrap this around your hand and I want you to hold it.” I gently lifted her hand and wrapped it around and closed her hand on it. She was so weak she couldn’t even hold on to it. I then said, “go be with daddy. It’s ok, he is waiting for you.”. In the days prior my mom had been saying some strange stuff and she had mentioned my dad being there quite a few times. She also told someone she saw hands reaching out of her. That is actually a very common thing for people to do when they are dying. My dad did it too. 

After that, words just came naturally to me. I told her what a good mother she was and how lucky I was that god choose her to be my mother. I told her that if I could be even half as good a mother to mey son as she was to me and my brother, that I’d be ok. I told her how I admired her dedication and how she put her heart into everything she did in life from being an employee to being a wife and mother, and how I was lucky to have her as a role model. I told her how strong she was and how she never gave herself enough credit. My mom always compared herself to her sisters. She would always tell me, “I’m the fat, ugly sister.” I don’t know why she looked down on herself like that and so I reminded her that she always compared herself to them yet she didn’t realize that of all of them she was by far the most beautiful because she had the biggest heart, and like she always used to tell me, “beauty is only skin deep. It’s what’s on the inside that counts”. Beauty means nothing if you have a rotten personality and black heart. 
I was nervous for nothing. The words just came out. Naturally, and I told her everything I wanted to say to her. There was one thing that I know she needed to hear before she left this world and so I promised her that I would try my hardest to fix everything with my family but most importantly my brother.  I think my mom’s biggest fear in this world was leaving it knowing that me and my brother would still be separated and wouldn’t be there for one another. I wanted her to know I’d try. 
 As I was talking to her, her head was leaned away from me facing in the opposite direction. I walked around the bed, then I got real close to her, and I bent down so she could see me in her line of vision. I told her try to look at me. To really try to focus. I saw her eyes straining to move. I promised her I was going to be ok, but I was going to miss her terribly. That was when suddenly I heard a noise come from her mouth. I couldn’t make it out. Her voice was extremely raspy and low. I asked her to say it again and out came three short, one syllable words, “I luh you.”. I looked at her and asked, “did you say I love you?”. She nodded her head once and then she just kept saying it over and over until her voice was no longer able to come out and just her lips were moving. I saw a tear drop from her eye and I started to cry and I told her I loved her too, more than she could ever know. 
I love you wasn’t a phrase that was often said in our home. In the months prior there would be times I’d be with her and my brother would call and every time they hung up she’d say, “I love you.”. She didn’t say those words to me often and I don’t think it’s because she didn’t love me. I think it was just that we didn’t need to say that to one another all of the time. It was pretty obvious by the closeness of our relationship and how we talked to one another multiple times a day, everyday. The week prior to this day was really hard too. I felt like she was angry with me. She was snippy with me and had yelled at me a few times when I was trying to help her. I felt like she was annoyed by me being there and at times, maybe she didn’t want me there. I know now that is a common part of the process of dying. Anger and detachment. It’s something I guess we need to do to separate ourselves from the ones we love. I needed to hear those words at that time and I am so glad I did. It was a beautiful moment in such a horrible situation. I was happy about it but at the same time, completely devastated. I knew that it was the last time I’d ever hear those three words fromher mouth. 
I sat there for a few moments and I could actually see she was finally relaxed. I watched her as she drifted back off into sleep. It was an emotionally intense situation. I needed to get up and take a lap around the building. I walked out the room and ran into Kathy. She told me to come take a break with her as she ate her late night dinner. I sat down in the break room with her and two other nurses. They shared some crazy stories with me and it was nice to forget what I was going though for a minute. I don’t know how those work do what they do. How they leave this shit at the hospital and manage to go home and be wives and mother’s without letting all that sadness affect them. I have a whole new appreciation for nurses. I really admire them and the work they do. It takes a special kind of person to do what they do.

I went back into mom’s room and sat there for a bit. I had probably only slept a total of four hours in the last two nights. It was starting to catch up with me. Kathy came back in and we sat there and talked for a while. I am not going to lie. My mom looked scary. She had her head turned to the side, one eye was wide open while the other was half way shut. Ten years ago I never would’ve imagined myself being able to sit there alone with someone I loved in such horrible condition and looking so scary. It’s an image that I don’t want to remember, but any time I think back to her time at the hospital, that is all I see in my head. I hope in time that vision fades. I do not want to remember my mother like that. 
It was rounding 4:00am and I had set myself up as close to my mom as I could physically be. I wanted to be able to hold her hand and touch her. When my dad was in the hospital my mom slept in that chair every night and held his hand. My mom was the most fiercely loyal woman on theplanet. Her love was truly unconditional. I hated that she had to be in a hospital dying. I wished she could’ve had the privilege to be home on hospice as my dad was, but unfortunately it didn’t work out that way. My dad was in the hospital a week or so prior to his death. He made the decision to stop all treatment and go on hospice at home. He didn’t want to die in a hospital. My dad accepted his situation and in a strange way, his death gave me a whole new respect for him. He handled it all like a true man, like a father should. He sat all of us down one by one and talked to us about his decision. I will never forget that conversation. He told me he was going to stop treatment because he didn’t want to go through all the bullshit anymore. I told him, “dad although I don’t want to see you go, I understand. It’s YOUR life and I can see that you are tired of fighting.”. Back when my mom’s kidneys failed in the early 90’s, I remember being in the car with my dad one time on the way up to visit my mom in the hospital. My dad said to me, “if I ever get sick like your mother is, just kill me. I don’t ever want to be sick like that. I wouldn’t be able to handle it. I don’t know how she does it.”. I remembered him saying that and I told him, and my dad said one of the most meaningful things he had ever said to me, in my life. He said,” [my name] you are the only one who gets me.”. Those words meant a lot to me because I knew he wasn’t just talking about in this situation. He was talking in general terms. Of his four children, my brother, me and two half sisters from a previous marriage, he had very tense relationships with three. I think I was the only one who cut him some slack and understood the reasons as to why he was the way he was.

Anyway, I got off track there but my mom literally stuck right by his side as he was going through the transition of leaving this world and going to another. In the last few days of his life, either me or her were in the room. She hadn’t showered in days. She would only leave the room to get food or go to the bathroom. We were sitting there talking one day and my mom was saying how disgusting she felt and how badly she needed a nice hot shower. I told her to go and that my dad would be fine for a few minutes. We called my brother, who was living in the basement, to come upstairs and stay by his side. My mom turned on the water. At the time I was going through some old pictures of my dad so we could display him at his wake and I had all the albums and stuff laying on my mom’s bed. I left the room that he was in and went into their bedroom. The very second after I closed the door I heard my brother screaming, “he’s gone! He’s gone!”. It was the first time in three to four days that both me and my mom were both out of the room, at the same time. I truly believe he was waiting for a moment like that because he didn’t want us to see him take his last breath. I felt like my mom deserved the same thing. She deserved to leave this world with someone by her side, especially since she was so scared and not ready to die. She never made it to the acceptance stage. She didn’t have enough time. 
I don’t even remember falling asleep that night. The last thing I remember was saying goodnight to my mom and kissing her of the forehead, then laying down and watching a video on my phone. At about 7:30 am I woke up to the sounds of beeping machines and Kathy and another nurse, talking in a dull whisper. I popped my head up and asked what was going on. She told me my mom’s heart rate went up extremely high and she was trying to calm her down. I was trying so hard to stay awake, but it felt almost as if someone was pulling my eye lids down. The previous night when the nurses were in and out of the room I’d pop up and feel wide awake. The first thing I’d do is look at her chest to see if she was still breathing. This time I was fighting to keep my eyes opened and I don’t even remember falling back to sleep. 
At a few minutes after 8:00 I was awoken by someone saying,”sweetie…..sweetie, you need to wake up, this is it…your mom is going.”. I was a bit disoriented and so I looked up at the clock, and then right away realized where I was. My head shot over to the right of me to look at my mom’s chest, as I did all of those other times. I asked the nurse, “she’s not breathing?”. She said, “she just stopped “. As she was talking she grabbed my grabbed my mom’s wrist and held it, then said, “she still has a pulse.”. There was a long pause of silence, as I sat there staring at the nurse holding her wrist. It seemed like minutes, but was probably only a few short seconds. She then jerked back a bit, almost as if she was startled. She slowly put my mom’s arm down and said, “I have to call the doctor.”……..
….and just like that, at 8:04 in the morning on November 20th, 2016, my mom passed away…….

(To be continued in my next post)

 November 19th 2016 (early morning and day) 

I had left the hospital and ran to my house to grab some of my stuff so I could sleep there. They had this baby blue, fake leather, recliner chair in my moms room and that was going to be my bed for the night. Aunt Debbie decided she wasn’t going to stay. Instead she was going to go home and sleep and come back early in the morning. It was super late. The nurse set me up with a blanket and pillow and I tried to get settled in, but I just couldn’t fall asleep. I was too nervous. I was just sitting there watching my mom’s chest go up and down as she breathed. She looked very peaceful and if there was anything to be happy about, that was it. I hadn’t seen her completely calm and peaceful in such a long time. Ever since she had her surgery to remove the 8″ cancerous mass and her kidney,  back In February of 2016, it’s like a piece of her soul was left on that operating table. She just wasn’t the same. She seemed detached sometimes and like she was distracted by her own thoughts, or in her own world. Our conversations went from gossiping about who posted what on Facebook, to what new aches and pains or new symptoms she was feeling, which doctors she had to see next, and what prescriptions she needed to refill. I missed the regular bullshit conversations we used to have and I knew at this point we’d never have them again. 
Before she left that night, my cousin Nikki gave me some advice. She told me that she read somewhere that the hearing was the last thing to go and so she told me talk to her and say the things I needed to say to her. I wanted to say things to her but I wanted to do it at a time where she was sort of awake and could hear me. I didn’t want to wake her because she looked so peaceful. I also felt a little uncomfortable talking to her, in that way, with another person in the room.  The nurses were in and out and I just felt it wasn’t the right time to say those kind of thin with complete strangers, and so instead I took my chances and held out for the next day when hopefully she’d be in a private room. Remembering back to when my dad was at the end of his life,and how he was in his final days and hours, I didn’t think my mom was quite there just yet. 
At around 3:30, 4:00 am I tried to fall asleep. The chair was terribly uncomfortable and not made to sleep in. It was old and I think maybe a bit broken because it wouldn’t stay locked into the recline position. Every time I’d move it would start folding in on me. I may have finally dosed off at about 4:30 but I didn’t sleep. Every few minutes something would wake me up. Whether it was the nurses coming in and out all night, the machines beeping because someone bent their arm and occluded their Iv port or people talking loudly in the halls, I kept getting woken up. Both my mom and her roommate were moaning and groaning in their sleep. They had put my mom back on her dulladin drip and so I’d hear her moan and I’d look over to see her fidgeting with the button, trying to press it, and I’d have to get up and press it for her. Every time I was awoken, I would jump up in a panic and then I wouldn’t be able to fall back to sleep. 

I don’t think I got a solid hour in a row of sleep until about 5:30/6:00am Around 7:30am I opened my eyes to see my brother sitting in the other chair, kind of staring at me. I asked him what time it was and he told me, and then he pointed  to the table and tells me that be brought me a cup of coffee. He told me I could go home, (thanks for the permission) and that he’d be there and his wife, Satan would be up there in the afternoon. I actually wanted to go home so I could freshen up, take my pajamas off and out regular clothes on. 

I got home and sat with my husband for a few minutes and told him what had happened during the night. I was exhausted but decided to just push myself to put clothes on and go back up there. I asked my husband if he could bring our son up there to say goodbye to his grandmother, one last time. I got dressed and went right back up there. 

When I got there, the doctor came into the room and asked me and my brother to talk and so he told us that the patient who was in the single room was being discharged and that they were just waiting on housekeeping and they’d move us into that room so we could have private time with my mom. I was so grateful for that. Losing a family member like that is probably one of the most intensely emotional situations you can ever go through. It should be done in private, so the family can feel free to express themselves to the patient. 

My brother told me around 12:00pm that he and his wife had called a representative from the funeral home and that they were going to come there around 3:30. I was really annoyed that he went and did that after asking me for my opinion and me saying no. There he goes being a team player again. I knew this was all Satan’s doing. She is a chronic planner (not sure if that’s even a thing, but it is now) and has to plan every hour of everyday of her life. I was so sorry my mom’s death was impeding on her life. I can say with 110% certainty that she was the one who not only suggested it, but she got in touch with the funeral director and coordinated everything. I can totally see preplanning a funeral for an elderly person or for someone who’s been battling something like dementia or Alzheimer’s before they get to the point where they can no longer express their wishes, but what happened to my mom was kind of unexpected and we knew she only had a matter of days or hours left with her. 
My husband came up shortly after. I met him downstairs in the parking garage. We got in the elevators and made our way up to my mom’s floor. Some of my family had arrived by that point and when we were coming up, they were heading down to grab coffee and snacks from the cafeteria. My husband and I walked into the room thinking we were going to be the only ones in there. My mom was still in the double room at that point. We walk in and the curtain is all the way drawn so we couldn’t see my mom. As we finally get past the curtain we see my brother and Satan are sitting there, at her bedside. They didn’t see us right away and so I look down and I see Satan pulling out this packet of paperwork out of her bag. As soon as she realizes it’s us in the room she, quickly jams the papers back into her purse, which was a Michael Kors tote bag , and she puts her arm over it and pulls it tightly into her body. She’s all nervous and just starts babbling random shit with my brother. My husband whips his head around and looks at me as I do the same. I quietly say, “did you see that? What the fuck was the all about?”, and he replies, “I don’t know but it looked really fucking shady.”. Satan is holding on to her bag for dear life like Ben Stiller, at the end of Meet the Parents, when he’s on the plane with his luggage! 
We couldn’t believe what we both saw. It was clear Satan had some type of document in her possession that she didn’t want anyone, especially us to see. It’s very obvious when someone is being sneaky. Both me and my husband have a pretty good read on these kinds of things. We knew it was something shady. 
Me and my husband went downstairs and into the parking garage so I could have a cigarette and calm down. Once again we were left to speculate as to what was going on. We knew they were up to something and obviously had been formulating some sort of plan, exactly what, we didn’t know. I also started to question my mom and of all the things that happened in the last year, that’s probably the one thing I regret. My last text to her was on Tuesday Nov. 15th and it read, 
“I have to tell you. I feel like something is going on. Like you’re not telling me something. Is there something you need to tell me? I know there’s something going on that I don’t know about. This whole thing with [my brother] and his wife and the camera is completely not making sense to me. Why they were putting cameras in the house??. I just don’t get it.” After that I wrote, “Ok. I’ve made you a priority in my life for the past ten years since daddy has been gone and especially in the last couple of years, months and weeks. I have sacrificed my time with my son and my husband to be there for you. I just want to know what’s going on. That’s all. I just know something is not being said.”

She replied, 

“if you think I would do anything against you you’re out out of you’re miimh [sic].”

I didn’t think my mom would do anything to hurt me, but I knew she was holding back information from me. There were a few things said to me here and there that didn’t make full sense and I was able to tell there was more to it than what she was telling me. I know why she did it and I cannot even be mad. There were a few reasons, one being that she had to make peace with her son, so she can have her own peace, to absolve her of all the guilt she was made to feel because she stood up for herself. A lot of that guilt came from Aunt Bea. She made my mom feel like she was a terrible mother for putting her foot down and demanding respect. Although, she was in denial about her own situation and what my brother was doing, I think deep down inside she knew what was going on and I think she just wanted peace of mind. The other reason was that she didn’t want me to be alone. She knew how badly her death was going to effect me. About a week before she died I was up in her room visiting and out of nowhere she said to me, “[my nickname] I’m sorry.”. I asked her why she was sorry and she told me,” I’m sorry because I feel bad that this is what your life has become.”. I told her, “don’t be sorry for me, I’m fine. Feel sorry for yourself, you are the one who’s going through the hard stuff, not me.” I had to explain to her that there was a difference between “wanting” to be there and “having” to be there. I wanted to be there.
My husband and I were out in the parking garage and the more we talked the more angry we were getting. With everything else that was going on we thought maybe they were going to try to get my incapacitated mother to sign something. Maybe she had already signed something and they were just reviewing it. My husband was vexed and said he would go right up to her and ask him to show him what was in her bag. As badly as I wanted to grab her pocketbook like a mugger in Central Park; it was probably best if I let him handle this one, this time. 
We made our way back up stairs and by the time we got up there the nurses had informed them that the private room was ready for us. My brother and Satan were moving all of her belongings out of the room and transferring them over to the other room. My husband and I entered the empty room where they were and we just sort of stood there quietly. I kind of blocked the doorway and my husband, holding my son, walked a little further in the room. Neither my brother or her made a peep. I watched them carelessly pile my mom’s belongings on the radiator. I looked over at my husband and I could see his mouth opening like he was going to say something but the words wouldn’t come out. Instead I just gestured to him to leave the room and we went back in to my mom’s room. He gave my mom one last kiss on the head and told her he loved her. He then held my son over her to give her a kiss. She didn’t even respond. Seeing my son say goodbye and knowing it was the last time he’d ever see her; well it was the most gut wrenching thing I had ever seen. I will have that vision, along with many others, burned into my memory forever. 
My husband left and by that time almost all of my family was up there. They took over the waiting room once again. They even brought some wine which I totally thought was wrong,  but whatever, to each their own. It was nearing 3:00pm and my brother told me that the woman from the funeral home was running a little late and would be there in a little while. I was already extremely annoyed with him and this wasn’t helping. I just said whatever and decided to go downstairs to blow off some steam. As I head for the elevators, I had to pass the waiting room where I see Aunt Bea coming out. I tried to speed up and walk away, but she walks up to me with this soft spoken voice, as if she were talking to a four year old, and asked me if I minded if my aunt and uncles sat in on the meeting. In reality, her and Uncle Bob wanted to sit in there because Uncle Bob seemed to think he had some type of control over my mom’s estate since Aunt Bea was one of the executors; and she can’t even tell her ass from her elbow when it comes to that kind of shit. She had to include everyone else so it didn’t look to obvious. I don’t remember my exact words but my response went something like this. “I really don’t give a fuck, in fact I don’t give a fuck about any of this fucking bullshit because I think it’s a huge fucking waste of time….do what you want.”. With that, I walked away and got on the elevator. 
I was so angry. Once again no one in my family speaks up. I know I wasn’t alone either. There absolutely were others who thought that it was a huge waste of time and completely fucked up, but no one felt like it was their place to say so. I understand that no one wants to be that person and start drama, but it sucked that no one had my back. It was such an unnecessary thing to do. I was pacing back and forth in the parking garage when I spotted a woman holding a tote bag and she had a little name badge on and I recognized the logo on her badge from the funeral home,  so I followed her inside and ended up on the same elevator as her. I was so annoyed I could literally feel my blood boiling. I got off the elevator and walked down to my moms room to put my stuff down. As I was heading there I round the corner to see Satan walking shoulder to shoulder with the woman from the funeral home. Something about seeing her with this big,  shit eating grin on her face, like she was enjoying the fact that my mom was on her death bed,  really bothered me. I don’t even know what came over me but I walked and stopped right in front of them. Looking down at Satan who’s a few inches shorter than I am, I said, “what the fuck are YOU talking to her for, this is none of your business. It’s my mother.”. I could tell Satan was taken aback for a second and finally she says, “I’m not doing anything!”. That’s always her response.I wasn’t  surprised. I told her good, don’t do anything, this is MY mother. I knew all of this was her doing but she will try to convince me it was my brother’s idea. I wanted her to know she was not going to pull this shit anymore. That she was not going to push me around and control my mother’s funeral. She neededto know not to mistake my tolerance for weakness and my weakness for stupidity. I also wanted her to know she wasn’t welcome in the meeting either.  She turned around and stormed off down the hall. 
I was just so angry that day from everything. These situations are hard enough on their own without the extra bullshit. My mother was still breathing, a few doors down and we are sitting in a hospital waiting area planning her funeral. It just felt wrong and I really wanted no part of it, but I knew if I didn’t go in there, I was going to have no say in anything. I couldn’t seem to calm myself down. My heart was racing a million miles a minute and I could feel my body shaking. I could feel my anger trying to escape my body like the Incredible Hulk. I couldn’t sit down and so I went to the furthest corner of the room and squatted down as my body shook. One by one my mom’s siblings shuffled in. All were there except one. Surprisingly my Uncle Bob didn’t come in. My cousin Nikki was the only cousin there too, and she sayt directly opposite me in the other corner of the room,and we kept looking at each other the whole time, just shaking our heads in disbelief. She was the only one who got it. I found out later that Satan left the hospital all pissy because I had said something to her. Good. It was about time. 

There was an awkward tension in the air and I know it all had to do with me. I didn’t care. Even the woman from the funeral home looked a little uncomfortable. She started to ask my brother for some basic information and it was actually kind of humorous listening to him struggle to find answers of for the most basic of questions like what was my mom’s job title at her place of employment. I let him make a fool out of himself. This was his show; not mine. The woman then gets to the part where she asks if my mom has a will. I look at my brother who replied “ummmmm, I don’t know.”. I couldn’t believe he was sitting there playing dumb in front of my whole family, me so I couldn’t stop myself  stop myself, out loud I said,”[brother’s name] really? Cmon man, you know she has a will! Stop lying, you snuck into her safe how many times in the last few months??”. He then said, “well…well… well I didn’t know if she had it changed or not.”. I said, “no she never did. She has a will and ir names  her ( I pointed to aunt Debbie) and her (aunt Bea) are the executors. Stop the lying already!”. Aunt Debbie then jumps in and says, “ok this isn’t the time for that.”. I looked up at her and said, “yeah? Well it’s not the time for lying either!”. I was so sick of my brother playing stupid. He knew exactly what he was doing. 

There wasn’t much more we could accomplish there except for discussing her basic info and talking about how many days we were looking to have the wake. It was a huge waste of time, just as i knew it was going to be. We still had to go to the funeral home to finalize things. The same thing could’ve been accomplished in a simple phone call. It really didn’t save us time or do anything else for that matter. We just got the formalities out of the way. All it was was a big old show to make it look like my brother actually gave a shit about my mom. They just wanted to put a show on for the family, at the expense of the precious time my mom had left.
At the end she was about to give us an estimate for the two days of wake service and cremation costs. As she was adding everything up, people started to shuffle p out of the room, leaving just me and my brother there alone. A few seconds after everyone leaves the room, my uncle bob opens the door and comes walking in with his chest puffed out like she’s some type of tuff guy. He didn’t even look at me. Instead he walks right over to my brother, sits down in the seat right next to him and pats him on the back as if to console him. He didn’t look at me at all during the whole rest of the meeting. I fucking hate that asshole. He made it very clear to me that day by doing that. He had chosen a side and clearly, it wasn’t mine.  
It was really nice that my mom had her own room. We could all sit in there and not have to worry about disturbing anyone else. There was a very somber tone in the room. I wonder to this day if my mom was at all conscious while everyone was there and if she heard everyone’s voices and knew we were all there. I do not remember if she even opened her eyes, while everyone was there. The more she slept, the closer I knew she was to leaving us. I realized that night that my mom was the unique one out of her whole family. When you come from a large family where the siblings’ ages span over a decade, their tends to be little cliques in within the family unit. The older siblings tend to be closer with one another and the youngest seem to stick together too. My mom was closest with Aunt Debbie and Aunt Bea but kept a special relationship with each and every one of her siblings and each and everyone of them valued that and valued her and the things she for them. She made everyone feel special in their own way. 

She always made sure to periodically call all of them to see how they were. I don’t think the rest of them call each other as much as my mom called all of them. I know she’s my mom and people are not going to talk negatively about her,  but I have heard each one of them talk about others but I never heard anyone talking negatively about my mom. In fact, it seems she really stood out. I was told by almost all my Aunts and Uncles stories about how she’d go out of her way to make everyone feel special. For instance her youngest sister would always tell me how of all the sisters, my mom always treated her the best. She would always buy her stuff when she was a kid. Being that she was so much younger, when  my mom was was a manager at a store  she’d bring my aunt to work with her all of the time and pay her to work for the day. She’d also buy her things she needed like new shoes,  help her with her homework and pay her to do chores like fold her laundry, so she can have a little pocket money to buy candy and stuff. My aunt told me that my mom was the only one who did that. My mom was the one that everyone used to turn to for advice and her opinion was always respected. I’m proud to say that she taught me to treat people with the same care and kindness.
My heart really broke for my grandmother. She didn’t leave my moms side for the entire two days. She just sat there staring at her, saying, “that’s my baby.”. . I really feel like she got lost in all of this. I’m not saying my aunts and uncle’s don’t care about her. They all do a great deal, but I think sometimes they just write her off as this old lady who can’t hear that good and they’re so wrapped up in their own god damned feelings about things, that no one really sat with her and comforted her or discussed how she felt about everything. I made it a point to sit down next to her (as did my cousin Nikki) and really ask her how she was feeling about everything and how she was holding up. . I couldn’t imagine what was going through her head having just found out how really sick my mom was. I sat down next to her and just held her hand. Here it was three generations of women and one who going well before her time. 
It was around 6:00-7:00 in the evening when my brother stood up and announced he was going to go home for a little bit but he’d be back. Had he left it at that, I wouldn’t have thought much of it but he goes on to tell whoever else was in the room at the time that he has a party going on at his house! Apparently his wife had offered their house up for a friend’s, sister’s 50th birthday party. He goes on to make this lame excuse that they couldn’t cancel it because they didn’t have any way of getting in touch with all of the people. He then buried himself by saying they were all invited via Facebook. Maybe it’s just me but I found it kind of ridiculous that he’d even entertain a party while his mom was in the hospital dying, and if these people were “friends”, you’d think they’d understand what was going on and move their party elsewhere. 
It wasn’t until about 11:00pm that he ended up coming back. By that time my family started leaving. I had to go home too, to grab clothes for another long night……

(To be continued in my next post…..)

Novemeber 18, 2016 the beginning of the end….(part b) 

My brother got up to the hospital shortly after talking to him. We paged the doctor and he was there within minutes (which is highly unusual). He explained the same things he had told me, to my brother, and thankfully my brother agreed with my “choice.” It wasn’t really much of a choice though. It was really the only option we had. 
He explained to us that it could be hours or days until she actually passed. About a week prior to this there was a woman in my mom’s  room who was clearly at the end of her life. She was older than my mom by many years and I could tell she was in her last days. She was sleeping non-stop and when the nurses would come in, she would start screaming at them, telling them to leave her alone and to not touch her anymore. This anger and agitation is a very common part of the process. Anyway, this poor woman had no visitors for days until her sons finally showed up. They moved her into a private room where she passed away peacefully. I asked the doctor if it was possible we could do the same for my mom and he told me he’d try his best to get us that room. 
Although I saw this coming from a mile away, I was still in complete shock. There were no questions anymore. No hope. My mother and best friend was going to die. People say it’s “easier” sometimes when you know before hand. They say you can prepare yourself. In a wa yes, but in reality, nothing can ever prepare you for losing someone. In a way it’s almost harder because while you know it’s going to happen, you don’t know when and so you are stuck in a constant t state of anxiety. I knew this was coming since the day I heard she had a rare and aggressive form of cancer. I read many articles about cancer in immunocompromised patients and what the survival rates were and statistically, they were not good. I knew it would be a while but not knowing how or when was what made it so hard for me. Losing my mom was my biggest fear not just for that month or year but for my whole life. Since the day I was born I had this connection to her where I never wanted to let her go. My mom used to tell me this story all of the time about how no one could hold me except her, when I was a baby. My aunts used to get mad because they wanted to hold me but every time my mom would hand me to one of them I would scream bloody murder until they gave me back over to my mom. One time her and Aunt Debbie decided they’d try to fool me and so they went into another room and switched shirts. Aunt Debbie picked me up but her face was turned away. She said right away I knew something was wrong and so I kept trying to pull Aunt Debbie’s face toward me. Finally she gave in and and turned her head and as soon as I did, I started to scream for my mom! No one can ever take her place. 

It was my husband’s 40th birthday that day and it killed me when  I had to call him and tell him the worst news I’ve ever delivered to another human being. My husband had a really good relationship ship with my mom. He was better to her than her own son was. He always called to check on on her and sometimes he’d go over there on Saturday mornings while I was still sleeping, so she could see our son. I knew this news was going to hurt him too. I asked him to come up and if he could bring my son so he could see her in hopes that maybe she’d remember it. 
The night before, when I was up at the hospital, I was trying to clean up my mom’s room. I was just fidgety and didn’t know what to do with myself. I just wanted to keep her awake and talking to me so I kept asking her questions what she wants to do with this or that. She wasn’t really responding much except for “yes’s” or “no’s”. She was sleepy and she was kind of trying to talk, but she was kind of going in and out. I asked her, “what is it ma? What do you want?” She looked at me and said, “I just want my family.” and so I remembered her saying that to me and I knew that meant she wanted me to get them there. 
One by one my aunts; uncle’s and cousins all started to pour into the hospital. All 5 of her siblings were there with their husbands or wives (except for Aunt Debbie who is twice divorced) and a lot of my 12 cousins, also came. They set up shop in the waiting room where my brother and I had just sat down with the social worker, the day prior. Everyone took turns going in and out of my mom’s room to visit with her. It was sort of overwhelming. Everyone was crying and in shock. I don’t think anyone realized how bad she really was and later I found out why. They were being misinformed by my brother and his wife. 
Satan told us she had to leave to go to the doctor and it was nice not having to see her around for a little while. My brother was actually spending some time with my mother. He hadn’t been up there in days. I could see in his face that there was a lot going on in his head. My brother was very quiet that day. I wondered exactly what it was, that was  going through his head or if he even cared. I wondered if he had any regrets that he hardly saw her or acted like she existed for almost three years. That in and of itself just made me sad. I loved my brother, but I just hated who he had become. It still hurt me to know he was going to have to live with all that regret for all the fighting they had done. Prior to Satan my brother had a very good and very close relationship with our mom. He would keep in regular contact with her and make sure to visit her at least once a week. It was sad to me that he let someone else spoil that. 

Another difficult part of that day was when my grandmother arrived. She was about to get the shock of her life. My grandmother had no idea that my mom even had cancer. My mother elected not to tell her. I thought it was a very bad choice and she was doing my 89 year old grandmother a disservice. When I asked her why she didn’t want my grandmother to know, my mom told me that Aunt Bea had decided that it would be best that at 89 years old, she didn’t have to worry!  Aunt Bea thinks she’s the mother. How fucking dare she make that decision for her and for my mom. That is not her story. I was really disappointed in my mom. They think they were protecting her but all they were doing was hurting her. I tried to put myself in her shoes and think which I’d be more upset about, knowing my daughter had cancer and being able to mentally prepare myself and making sure I talk to her and spend as much time as possible with her, or not knowing she had cancer for an entire year and then finding out when is too late. I sorted avoided my grandmother for the last few months when things started to slowly decline because if I was talking to her, and she asked me any questions, I was NOT going lie to her and like I felt about Aunt Bea, it was not my story to tell. Many of the nurses in the hospital had this same talk with my mom. They would ask if her mother knew what was going on and my mom would say no and then the nurses would all say the same thing, that my mom was doing her a disservice. By this time I think my mom had lied so long she felt too bad having to explain herself. 
My husband left and went home to watch my son. I really wished he could stay because I could’ve used someone to be on my side. I felt like I was virtually alone. The whole time my mom was in the hospital, out of five of my aunts, only one reached out to me and that was my mom’s youngest sister. Of all my cousins, the only ones who checked in on me was my oldest cousin Nikki. She was the only one who consistently called me. My aunt Bea and my aunt Debbie weren’t being mean but they were kind of ignoring me and giving me the cold shoulder. Likewise, I was kind of avoiding them. I was avoiding almost everyone. My cousin Nikki was by my side the whole time and I could never thank her enough for treating me kindly, having some compassion and understanding. She actually listened to me vent and actually tried to empathize with me. No one else wanted to hear anything I had to say and that really sucked because I think if they knew the story they’d understand why I was the way I was at that time. 
In the late afternoon I was in the waiting room with some of my family. Aunt Bea, uncle Bob a few others were in my mom’s room. Satan came back from her Doctors appointment. She walks in and my aunt Debbie asks her how her doctors appointment was and suddenly she pulls this sheet of paper out of her purse and starts reading it to everyone. Her reason for going to the doctor was because she had an upper respiratory infection. Anyway, she starts reading off what the doctor prescribed to her, antibiotics, a cough syrup and……. oxycodone (aka Vicodin or Percocet) . My aunt D yells out, “oxycodone? What kind of doctor is prescribing you oxycodone for an upper respiratory infection?”. Satan says, “I guess this doctor.”. “My aunt D says jokingly, “Damn wish my doctor would do that!”. Satan made a comment that she had bottles and bottles of it at home. It sounded highly suspicious to me. This was not the first time she had made mention about having pills. She had mentioned it a few times to different people and I personally think she has an addiction to them. 
My mom was mostly unresponsive that day. This may sound strange but it was kind of relieving to see her sleeping. I felt as if anytime she was awake she was suffering, whether it was from physical pain, or mental and emotional pain, and it was hard to watch her going through any of that. She was comfortable and that was all that mattered. They had put her back on the pain pump and told us we could press it every hour for her. She held on tightly to that thing. There were a few times when she popped her head up and said hello to people but it was almost as if she were in a dream like state because she was so heavily medicated.  I was told that every time she woke up and I wasn’t in the room the first thing she’d do is look for me and ask where I was. She also woke up for my husband and my son which made me so happy yet unbelievably sad knowing that it was the last time she’d probably say his name or be able to acknowledge his presence. She was able to recognize faces and that gave me a weird peace too. I was glad she knew her family was by her side, like she wanted. 
Later that night I was in the room sitting on her bed and she opened her eyes and looked around the room. Someone asked her how she felt and she said “good but it’s scaring me that everyone is here.”. I said to her, “Everyone is here because they love you.”. I stated to cry and then She looked over at me and said, “[my nickname] you’re scaring me.”. I was trying to choke back my tears. I didn’t want to scare her but I knew she wanted her family around. I still to this day don’t know if it was right that I didn’t tell her she was dying. I was always honest with my mom. We had a very honest relationship. I just didn’t see what good it was going to do her at that point. I think she knew. I think she knew all along and didn’t want to tell me because she didn’t want to scare me either. That’s something I am always going to wonder about. 

The doctor came back to me and my brother to check up and see how we were all doing. He told me that he was reserving the private room for us. The patient that was in there was supposed to be discharged at some point the next day. He asked how I was doing and I didn’t even know how to answer him. He then said to me, “you did an amazing job caring for your mom.” He leaned in and gave me A huge hug. It felt good to hear that from someone because there were many times that I questioned if I was doing the right thing or everything I could do. I knew I was never going to get that validation from my brother or my two aunts who were supposedly closest to my mom and so, to hear it from a professional and someone who deals with this stuff all of the time, it really helped.
When the doctor walked away my brother asked me if we could talk privately. I really didn’t have much to say to him but I agreed. We walked down the hall and he turns to me and says, “tell me what you think, me and [Satan] were thinking of calling someone from the funeral home to come down here tomorrow so we can start making arrangements.”. I just looked at him for a moment, in complete shock and then I asked, “Why?” and reminded him, “She’s still here.”. He tried to sell me the idea by telling me that he wanted her to get into this specific funeral home because my dad’s wake was there and the holidays were coming up. I hated having to argue but I thought it was a TERRIBLE idea and completely unnecessary. Why waste an hour talking to some funeral director when we can spend that hour with her? Besides, there was absolutely no need to pre-plan her funeral. Had she died in a car accident or something we would’ve had to go after the accident and plan it. If we couldn’t get her in the same funeral home, oh well. There’s 100 others around. I didn’t want to get into it but I told him I didn’t think it was necessary and he seemed rather annoyed that I didn’t agree with him. I explained that I didn’t believe it was going to save us any time afterwards. We would still have to go there and pick out Mass cards and a casket, etc. They couldn’t bring their showroom to the hospital. I told him I didn’t want to argue and I didn’t think it was a good idea and and I just walked away. 
I really don’t know what all of this stupid bullshit was about. It was all a show, for him and his wife, to make it seem like they were being helpful and actually gave a shit about my mom. To me however, it was insulting. Where was he when she had her surgery and went home barely able to walk? Where was he when she fell at 11:30 at night and needed an ambulance? Where was he when she was up for three days straight because she was in so much pain? Where was she when she was at the emergency room in horrible pain? Where was he for any of it? He showed up when it was convenient for him and did the bare minimum just to keep himself from looking like a complete heartless asshole. Now all of the sudden he wants to come in, in the 11th inning and be the here by doing completely uncecessary bullshit? If I were him I wouldn’t have wanted to do anything but sit there and soak up every last minute that I had with her. 

It was getting late, almost midnight. I decided to “sleep” at the hospital. My aunt Debbie said she was going to stay too. I was kind of happy in a way. I thought it would give us some time to talk and hopefully fix things between us. Since I hadn’t spoken to her in months I didn’t tell her all of the crazy shit that was going on. Plus, it would be nice to have somewhere to talk. I’m not going to lie either, I was scared being alone and  knowing my mom could’ve died at any moment.

I went into my moms room and some family members were starting to leave. I had to run back to my house which was only a short four miles away and get some comfortable clothes to wear and my contact lens case. I sat down on the foot of my mom’s bed. My Aunt Bea was seated on the other side. People were walking in and out of the room for the entire day and I felt bad for the elderly woman who shared a room with my mom. It’s hard enough to sleep in the hospital as it is. I mean you really don’t sleep. There’s always nurses coming in to take your vitals or people screaming, announcements over the loudspeaker, carts rolling down the hallway, nurses talking really loud, janitorial staff cleaning, other patients yelling, etc. I expressed my concern for the old woman. I said I felt bad that there was so much activity going in and out and that she was probably tired and wanted to get some rest. Aunt Bea heard me and I thought she’d also try to empathize and say “what if that was my mother?”. No, instead she waves her hand and says, “Oh fuck her!!” and then proceeds to stick her middle finger up towards the curtain that divided the room in half. I know this sounds silly and isn’t really a big deal, but when she did that, it really bothered me and really made me think. Small moments like that could really show you a person’s true character. Over the last few months of my mom’s life I really started to see everyone’s character much more clearly than I ever did before, my Aunt Bea especially. If you didn’t know her the way I do, you’d be shocked by her doing that. Aunt Bea is always the first one to send you a birthday card or call you to wish you a happy birthday. She will compliment you and praise you and make you feel special but behind your back she will mother fuck you, to no end. I started to see who she really was long before this day and believe it or not, Facebook is what exposed her. I just started to notice how incredibly fake she was. She’s an ass kisser. She’s a phony and she’s a manipulator. Her whole life is based on worrying about how she’s perceived by others and looking perfect,  and so she goes above and beyond to manufacture this imagine of a loving, caring, honest, thoughtful, god fearing, empathic Saint; but in actuality, that’s not who she is at all. She’s quite the opposite of everything she portrays herself to be. She’s a very ugly person.

Aunt Bea made my mom feel like shit. She gave my mom her kidney, and then I guess to her, that meant that she had the right to treat my mom less than human. I believe a lot of it was out of jealousy. My mom had a lot of traits and ways about her that I believe my Aunt wanted. My mom was smart, intelligent, and well read. She was independent and did everything for herself. She didn’t depend on my dad to do it for her.  She was a dedicated worker and was recognized for it. She was an amazing mother, who until three years ago, had really good relationships with both my brother and myself. Aunt Bea possessed none of those skills. She would always say things to me like “oh, well your mother is so smart, she reads all those books and she can figure anything out…she’s good like that. I have hardly read any books.“. It goes to show how stupid she really is because reading books didn’t make my mom smarter than her. My mom was smarter because she took interest in things other than herself. If she didn’t know how to do something, she’d try to figure out another way. She listened to other people speak and absorbed information, and yes, she read books too. That’s what made her smarter. Reading a book didn’t make her any smarter. 

I am an empath by nature. A lot of my crying that day was because I was feeling the pain of everyone around me. I would look at my grandmother and think, “Wow. She is 90 years old. She lived through so much.”.  Born in the mid 1920’s, she has seen everything from the Great Depression to the Vietnam war, to the gulf war, to Iraq and 9/11. She watched people much younger than her by many years, die off one by one. My grandfather and all four of his siblings have passed on and she outlived all of them and now here she is, at 90 years old and she is losing her baby. Her and my mom had a very special bond and I think it’s because of all of the siblings, my mom took on the most of her traits. It hurt me to know that. It doesn’t matter how old you are or your child is, you should not die before your child. I’d look at her and just think about how hard this must be for her and I’d cry. 

As for my aunt Debbie, her and my mom were the closest of the two sisters. They were the only ones who were single and lived independently. When my dad died, my aunt Debbie would call my mom up in the morning before work and they’d stay on the phone until it was time to leave. They’d then get in their cars and talk to one another while they were driving in. They did this every morning for the last ten years. If my aunt Debbie bought something, she’d call my mom up and tell her about it and a few days later, she’d have the same thing. They drove the same truck and all, just different colors. At the hospital that day, I could physically feel her pain. 
I left the hospital and a few more people hung out until I got back. I knew it was going to be a long night….


A sticky mess….

The next day was Wed the 16th. I got there around 2:30-3:00 that afternoon. I had my son with me but only for a short time. After their breakup, my mom was still very friendly with my brother’s ex-fiancé’s mother. In fact we went to dinner with her about two weeks before she ended up back in the hospital. I hadn’t told her my mom was back in the hospital because her brother had just passed away around the same, and I thought it would be too much for her to handle. I told her husband who works in a restaurant that I frequently go to, and I figured he would tell her when the time was right. Once he did, she texted me and I told her what was going on and she asked if she could come see my mom at a time when it was unlikely Satan would be there. I told her they hadn’t been there for about four days now but her best bet was coming during work hours. My brother got off at 6:00pm. 
I made plans to meet up with her in the parking lot and so I did. We walked up into the room and to my shock and surprise my aunt Debbie and Aunt Bea were there. I wasn’t expecting to see them considering it was during work hours and they both had jobs. There was a real strange vibe when we walked in. Instead of sitting in the two chairs next at my mom’s bed side, they were leaned up against the wall on the opposite side of the room. I really didn’t want to be in there, but I couldn’t leave Donna (the ex-fiancé’s mother ) there alone. Sure enough though within a few minutes my husband called me and told me he was downstairs to pick up our son. 
I took a little extra time talking to my husband, hoping my aunts would leave, but when I went back up, they were still there. It was super awkward in the room, but I felt obligated to stay. As I said, it was weird to see them there during work hours, and even more weird there without my uncle Bob, who always drove them out here. They hadn’t been there in days. Why all of the sudden did they decide to take off during the day and come? 
There was obvious tension in the air and so Donna made a good buffer for that. They ended up leaving shortly after and then it was just me, my mom and Donna. Donna is an interesting person. She’s really funny and outspoken, but not in a rude way. Usually when my mom and I were with her we’d talk non-stop and laugh until our bellies hurt. Donna always had a way about her that just kind of lightened the mood and lifted you up. That day however, I felt like my mom was completely detached, and she almost seemed annoyed that donna was even there. She hardly looked at Donna or paid her any attention, even after my aunts left. She was just staring straight ahead watching the TV which was tuned to Fox News. The more I observed her lack of interactions, the more I realized that something was majorly wrong. 
I tried to talk myself out of it but from that Monday on, I was recognizing something in my mom that I remembered seeing in my dad at the end of his life. He had that same glazed over look in his eyes and it scared the shit out of me. My mom was very agitated and while I was trying to help her pick out dinner, she was holding the menu upside down and just kind of blankly staring at it, but she was trying to convince me that she was reading it just fine. When I tried to help her turn it around, she snapped at me. We fixed the menu and as I was trying to help her read her choices, she snapped at me again to leave her alone. I watched her as she sat there holding the menu and eventually falling asleep with it in her hands. She didn’t eat all day and she didn’t order dinner that night either. It troubled me. 
Donna didn’t stay too long. When she finally left, I looked at my mom who had dozed off to sleep. I felt bad waking her but I wanted to get her dentures out so she’d be comfortable for the night. She pulled out the bottom one and put it in a container like we did every night. When she went to get the tops I saw she was really struggling, and so I asked if she needed help. She snapped at me again and said she didn’t need help. Usually the tops ones slipped right off because she didn’t use the adhesive on the tops. She only used it on the bottom. She was pulling and pulling and they wouldn’t come out. She didn’t even look as if she had the strength to get them out but finally after struggling for a few minutes, she managed to get them out. There was shit loads of glue on them and in her mouth. It was a fucking mess. The glue stretches and so there was these huge globs of stringy glue hanging all over her mouth. She looked so pitiable sitting there pulling off the strings one by one. I helped her clean her mouth out and get ready for bed. 
Something just didn’t feel right those few days. She seemed like she suddenly got worse. She was confused and just seemed kind of out of it. I wondered if t was the antidepressant, but she had only been on them for a few days, and I couldn’t imagine she had even built enough up in her system to make her seem this “off”. I couldn’t help but think something else was going on. She wasn’t really eating or drinking any fluids. While she had lost over 25lbs in the few weeks she was there, her stomach looked terribly distended and the day before she started complaining about a pain in her lower belly. I figured she was constipated because that had been another horrible issue she had to deal with since she started the pain killers. I just couldn’t forget that glazed over look in her eyes. Something wasn’t right. 
I spoke to the doctor that night and I asked her if the antidepressants could be causing her to be apathetic and confused. Given the fact she was taking over 16 different medications, he said it was a possibility there was an interaction somewhere in there. I asked him if we could stop them and see if it helps and he agreed that it was a good idea. I was hoping to come back the next day and see her in better condition. I didn’t  sleep much that night….
(To be continued in my next post) 

Let’s get together and talk…

My mom wanted to know why Satan was calling up the hospital asking about who her healthcare proxy was and so she called my brother to ask. That was also when she informed him that she appointed me to be her healthcare proxy. My mom said he flipped out and got all “butt hurt” (I hate that word but it’s the only way to describe what he was). She explained to him that it wasn’t anything personal and that she only picked me because I’m the one who has been taking her to all of her doctors appointments and stuff. She also told me that my brother said he thought I was, “holding back information from him”. I wasn’t. I made a conscious decision and elected not to tell him about the MRI report because I am not a doctor, and I didn’t feel it was my place to give such news. God forbid I had interpreted wrong. I didn’t want to send everyone into a panic. Even though I was 99% sure I was right, there was still that 1% I was wrong about it. Before we hung up she asked me if I could talk to my brother and clear up everything. I told her I would. 
At this point in time I really wanted to try to keep the communication with my brother open. I was extremely worried about the state my mom was in. Seeing her on all the heavy pain meds only made things seem worse. It was hard to decipher between what was her being in bad shape and her being medicated. She would nod off while you were talking to her and at other times she’d be mumbling to herself or saying things that didn’t make sense. I was sincerely trying to keep a dialogue open with my brother for her sake. I explained to him that if he finds there’s any information missing from what I’m telling him, it’s because I don’t know it. That was the gods honest truth. I don’t know if he was referring to anything specific when he told my mom I wasn’t communicating with him or if he just believed that in general. We were texting back and forth for a while. After I tried to straighten out the communication issue, I wanted to explain the healthcare proxy. I told him that it wasn’t about what either him or I wanted, it was about what my mom wanted. It was about carrying out her wishes. He understood. I told him that her wishes were something we would have to discuss with her. He also agreed. I then suggested that just me and him, alone agree on a time to sit down with her and go over what her wishes were. It was at that exact moment, that he completely stopped answering me. 
I knew what the problem was and why he suddenly stopped answering. He knew there was NEVER even going to be a remote possibility of Satan allowing just me, him and my mom to sit down in a room. I don’t get why she’d even want to be there. Someone’s dying wishes are a very personal thing. My brother seemed to forget that we weren’t that close with Satan. It was like having a complete stranger sitting there while discussing the most intimate details about your life. Have respect for my mom too. She wants to talk alone with her children just like our dad did. She needs to feel comfortable and be able to be vulnerable, and Satan is not the kind of person who you want to expose your weaknesses to. There was absolutely no need for her to even be there. I don’t even understand why she’d want to be there. My husband wasn’t going to come. Its a testament to how badly she lacks empathy. She couldn’t not know that she didn’t have the best relationship with my mom. She knew they only started treating each other decently a few months prior to all of this. Why would she ever want to impose on a moment like that?. I just don’t get it and I never will. I need to accept that. 
That weekend was a nightmare. My mom started to have major anxiety attacks at night, when I left. I mentioned my girlfriend who was a nurse, in my last post, but to explain further, Kathy and I have known one another since the 7th grade. We didn’t really hang out with one another in those days but back then we had a lot of friends in common. When my mom had her surgery in early February, and she had popped a few of her stitches open on her incision, I had made a post on Facebook asking if any friends were nurses. My mom’s incision looked a little funky and so I took a photo and wanted to know if they thought it looked infected. I also wanted to ask a question about cleaning it. Of the three nurses who answered me, her answer was the most thorough. I could tell just by her answers that she was a really good and dedicated nurse and knew what she was doing. From that point on we developed a Facebook friendship where we would message one another behind the scenes. It just so happened that when my mom finally got a room at the hospital, she ended up in Kathy’s unit. Even though Kathy wasn’t assigned to her room she was a god sent. In fact I told her she was my guardian angel but now that I think about it, she was more like a spirit guide to me. Kathy was one of those tough girls in high school. Not the girl you’d want to get into a fist fight with but she was always a genuine and caring person. It’s weird how life brings you back together with certain people. 
Kathy worked the night shift and so she would keep an eye on my mom and text me updates throughout the night. I don’t know how I would’ve made it through this situation if it wasn’t for her. I don’t think I would’ve made it to be quite honest. Well it was that Friday night, my mom’s third full day in the hospital when Kathy had pulled me aside and asked me what I knew about my mom’s cancer. I told her I knew that it had spread to the tailbone, the stomach and lymphatic system. She then asked me if I knew about anywhere else and I told her no but that I was sure it did. She walked me over to her computer station and pulled up my moms chart. She turned to me and said, “I can get into big trouble for doing this but I think you need to know…..your mom’s cancer has spread to her lungs and that would probably explain why she was having some of the breathing problems.” I couldn’t believe it. I stood there in shock and stared at the computer screen. This explained a lot. For starters, the week prior to bringing my mom to the ER, I brought her to her lung doctor. When we got there my mom informed me that there had been a few times she had coughed up some blood. It explained why she had a cough for almost a year even though she had quit smoking over ten years prior. I couldn’t have thought of worse news. 
To add insult to injury my mom started having major anxiety that first weekend in the hospital. She was having these panic episodes where she’d think she was dying and she would start freaking out and kicking the bed because she felt as if she couldn’t breathe. Kathy had text me every time she had one. My mom looked really scary that Friday and I was really concerned and so I stayed with her until well after midnight when finally her nurse found me downstairs on my way to get a coffee and told me to just go home and get rest. 

That Saturday she had another episode and she called me around 3:00am, freaking out. I calmed her down and kept asking her if she wanted me to come to the hospital but she kept telling me no. I know how she operates. She never wanted to be a burden on people, impose on people or have anyone make a fuss over her, but there were times when I knew she needed me and it was inconvenient (or at least she perceived it that way) and she didn’t want to bother me, so she’d insist I didn’t have to come, but it’s like, well you wouldn’t be calling me if you didn’t need me, ma! I was in bed and it was one of the few nights I was actually able to fall asleep before 2:00am but she again was insisting I don’t come, that she just needed to talk to me and hear my voice. I asked her if she was sure a million times but it didn’t matter. I was already getting out of bed. I wasn’t going to be able to sleep anyway. 
I hung up and a few minutes later she called back and asked me for my aunt Bea’s number, which was obviously really weird seeing that they talked all of the time. That got me really concerned. Again I asked if she wanted me to come, but again she insisted that I didn’t. Again we hung up. I get a text from her. She text me my Aunt Bea’s phone number! She actually went into her text messages as if she was making a phone call and she typed in my aunt’s number and sent it to me! At that point I was asking myself, “what in the fucking fuckidy fuck is going on with her right now?”. I grabbed my keys and headed down there. When I got there she was fine. I later found out that everytime she would have these episodes it would take like three nurses to calm her down. Kathy was in there many of those times and she told me my mom would tell her to call me or she’d ask where I was, every time. As soon as I got there, she would calm down. So crazy how things come full circle in life. She always comforted me and now it was my turn to comfort her. She told me one day that she didn’t care even if I was in the room, so long as I was in the near vicinity or in the building, she felt safe. 
It was one scary weekend. I don’t think I ever worried that much in my life. They scheduled her for radiation on Monday morn. In hopes that they can shrink the tumor on her tailbone and get her out of pain. There was also talks about taking a neuropathic medication. All I wanted to see was her just being comfortable. That was my biggest concern the whole time. 

Crossing the line….

It was going into the second full day my mom was in the hospital. I had to bring my son on a field trip for school that morning. It was his first field trip ever. I felt wrong going but I had to do it for him. I wanted to try to keep his life as normal as possible while this was going on. He was only three years old and didn’t need to feel the stress which I’m sure he inevitably felt anyway. It was a short trip to a local public farm and so I was ok that we were only 20 minutes away from the hospital if anything happened. My mom was still in pretty severe pain but they had decided to give her a pain pump to better control it. She was at least able to lay down and relax a little. 
We had been at the pumpkin farm for about a half hour and I got a text from my brother. His texts were weird to me sometimes. I had trouble telling if I was actually talking to him or not. That is how much my brother had changed in the years since he had met Satan. I could never tell if I was talking to him or her. He asked me if I had seen anything in the report when I had picked up the MRI disk the previous night. I told him I did,but that I was on a field trip with my son and couldn’t really speak at the moment. I also told him that I’d call him as soon as I got to my car. This is where things got weird to me. He responded back that he was really worried and would prefer I gave him the short version “now” and tell him the details when I could talk because he was, “really worried.” I didn’t understand why suddenly he was “really worried” when all along I had been telling him how bad of shape she was in and he didn’t seem to show that much concern. Also the way he worded it was just weird to me. It just wasn’t like my brother to be pushy like that, at all. I easily could’ve not answered him until I got in the car but I didn’t want to be accused of withholding info and so I told him real quick that they thought there was a tumor on her spine. I asked him to not say anything to my mom until the doctors told her. 
When the trip was over, I called him as soon as I got my son in the car and explained to him what happened and how I figured it all out. His tune was suddenly different. He was acting as if I was wrong and he almost got argumentative with me about it and told me to wait and see what the doctors said. I kept repeating to him that I was 99% sure but he kept arguing. I didn’t want to bicker with him so o just agreed and told him I’d be heading to the hospital later that day. 
Sure enough, a while later my mom called and told me the very same news. She sounded surprisingly ok with it. I don’t know if it was the dilaudin or what but I didn’t expect her to sound so calm about it. She also informed me that they wanted to do a blast of radiation on it to shrink it down in hopes of alleviating the pain. Shortly after I spoke to her they were going to bring her down to the radiation area to tattoo her so they can pinpoint the correct spot to shoot the radiation. Before we hung up the phone, she asked me if I had called the social worker at the hospital. I told her that I didn’t and after I said that she then says, “I didn’t think so…… I knew it…..I was [Satan].”. Apparently the social worker had come in to my moms room that afternoon and told her that her daughter in law had been calling, inquiring into whether or not my mom had a healthcare proxy and if so, who it was. My mom told me that she told the girl not to give her ANY information. I asked my mom for the social worker’s number and called her when we hung up. The social worker explained to me that Satan had called more than a few times asking about the healthcare proxy. In fact her exact words were, “she’s been calling and calling, all day.”.
I was totally confused and angry as fuck. That was TOTALLY none of Satan’s business whether or not my mom had a healthcare proxy and who it was. I was really pissed off and felt like she was way overstepping her boundaries. As bad as I wanted to call her up and tell her the fuck off, I resisted and instead decided to go a different route. I text my girlfriend who was a nurse in the unit my mom was in whether or not doctors and hospital personnel were allowed to give information to non-blood relatives. My friend told me that they shouldn’t but if the patient consents, they could. I explained briefly what was going on and why it was weird and so she informed me that they had the healthcare proxy forms at the nurses station and that when I came in later that night she’d give me one to fill out with my mom. 
I know this may sound crazy and so hear me out but I do not know Satan all that well. When push comes to shove, she is a virtual stranger to me. After catching her and my brother in my moms house, going through her safe, her bills and her financial statements, back in August, I do not trust her. Especially since I believe I already didn’t trust her but that made me really side eye her. I don’t know what her intentions are. For almost three years this girl treated my mom like total dog shit. She broke our family apart and kept my brother away from us. My mom cried, begged and pleaded with her to make amends and she vehemently refused. My mom then gets diagnosed with a rare form of cancer that doesn’t respond to treatment and all of the sudden, like a light switch, she decides to start acting friendly? Do you see where I’m going here? This girl sees my mom as her cash cow. She’s an investment. She knew my mom was sitting on a little nest egg and she wanted to ensure my brother (aka, her) was going to get what he(she) was “entitled” to. Maybe even a little more if she played her cards right. I had no idea what her intentions were by worrying about who my mom’s healthcare proxy was but I can ensure you, after being the main and pretty much only caretaker, of my mom, there was no way in HELL I was going to put my mom’s life in her hands! Allowing my brother that much power meant giving her the power. They weren’t going to not be around for three years and then all of the sudden think they can make crucial medical decisions with my mom’s life. Over. My. Dead. Body. Again, I know this may sound crazy but I thought to myself, maybe they are so worried about me being the healthcare proxy because they are scared I’m going to keep my mother alive! (Therefore delaying their inheritance from reaching their pockets). 
That night my brother and Satan came up to the hospital. I have never so badly wanted to jump across the room and choke her to death but that wasn’t an option. I swear she was purposely trying to piss me off that night. She kept mentioning how she spoke to this doctor and that doctor and how my mom has so many doctors and it’s confusing. That was the one thing that used to make me laugh about Satan. She had no concept of how close me and my mom were. She would talk in my presence like her and my mom were BFF’s and try to make it like she was helping my mom so much. I don’t think she can even comprehend the type of relationship my mom and I have because she is completely incapable of forming those types of close relationships with ANYONE in her life, let alone her mother. As much as it annoyed me when she did this, I had to laugh it off because she was just making herself look like a fool. 
I was trying to show my mom pictures of my son’s field trip from earlier that day and so as my mom is looking through them, Satan wouldn’t stop shoving her phone in between my moms face and my phone to show her pictures of her daughter. That’s the kind of person she is. She cannot wait her turn. She just kept talking and talking. When she’s around she makes people feel tense. One of my moms roommates from her previous hospital stay dubbed Satan Niagra Falls. My mom and her started talking one day and my mom told the roomie she wasn’t crazy about Satan and so the roomie told my mom that her and her daughter were whispering on the other side of the curtain about how Satan’s voice was all they heard and her nonstop talking was driving them crazy. The woman told my mom she compared it to a waterfall that just kept going and going. She was right. She just doesn’t shut up and nothing she talks about has any substance. She seems to have no sense of the atmosphere around her either. It’s a hospital and should be a calm environment but she doesn’t sense that. She’s all neurotic and hyper just talking and talking, like she’s at a social club. It’s bizarre. 
I remember I had to pee really bad while they were there that night but I didn’t want to leave the room and so I waited until they left. My girlfriend, the nurse came in the room shortly after with the healthcare proxy form. I didn’t want to have to do it but I was just really concerned about Satan. My mom explained to my friend how we didn’t like her but that I had nothing to worry about, that Satan wasn’t a threat . My mom didn’t get it. I was worried because she was on a very powerful pain killer and Satan is the type of person to take advantage of someone when they’re in a weakened or vulnerable state. I wasn’t going to let that happen. So long as I was around I was going to protect my mom. 
The job of a healthcare proxy is to convey the wishes of a patient should the patient become incapacitated and unable to speak for themselves. For example, if for some reason, my mom needed to be put on a breathing machine or artificial life support, the healthcare proxy would tell the doctors whether or not the patient would want that. Obviously these things should be discussed between the patient and the proxy beforehand but if they aren’t, then it’s the healthcare proxy’s job to act in the best interest of the patient. That’s it. Not exactly the title you strive to have in life. As we were looking at the paperwork I realized there was a primary and secondary and so I told my mom to put my brother down. Years ago it may have been the other way around and it would’ve been my brother, solely based on the fact that he was older, but since he became completely unreliable in the last three years, and left me to care for my mom alone, it was me. 
(To be continued in my next post) 

The guilt trip….. 

October 18, 2016 will go down as one of the worst nights of my life. Bringing my mom to the Emergency Room that night changed everything in my mind. I was really starting to lose hope. My mom was in really, really, really, bad shape. Sleep wasn’t really happening. It was already almost 4:00am by time I got home and settled. I sat outside on my porch as the horror of the night replayed as a loop in my head, over and over again. I had so many emotions going through me. I was scared, upset, confused and even angry. Angry for many reasons. Angry that I couldn’t help her, angry because she had to suffer but most of all I was really angry with my brother for once again, leaving me and more importantly her, high and dry. 
During the 25 years my mom had her transplanted kidney, she had good health. There were a few, very minor hiccups along the way and a few times we had to visit the ER. Even when my dad got sick and was going through his chemo and radiation treatments we had visited the ER many times. No matter which parent our ER visits were for, one thing was consistent. We were all ALWAYS there. My brother always came. During my dad’s illness my mom, my brother and I came together and became an amazing force. I had a support system. Things changed though, and I felt very alone. 
Now some people may find what I’m about to say to be a bit distasteful and to be honest, I’d probably feel the same if I didn’t go through what I did in the years prior to my mom getting sick. As I sat on the floor of the ER that night, I couldn’t help feeling a little resentful towards my brother who was in the city watching an Amy Schumer, comedy show. Here I was watching something that was scarier than any nightmare on elm street and he was in the city laughing. Laughing was the last thing on my mind that night. I spent most of that night in a state of panic. I cried a lot that night. I think it bothered me even more that I knew the tickets he got were free. If that were me and my brother had texted me to let me know that my mom was in really bad shape and was going to the ER, I probably would’ve just skipped the show and headed home. I don’t think I would’ve been able to sit there with a clear conscience and listen to a bunch of stupid jokes. That’s where my brother and I differ greatly. 
Anyway, I was so angry and I felt like I was being punished (obviously my mom was being punished far worse than me) and once again, it’s ME to the rescue. I often think what would’ve happened if I weren’t around? Would my brother step up his game because he had no choice? Was I enabling his irresponsible behavior by being the one who always came to the rescue? I got so angry and so I decided to take a few short videos of my mom while she was moaning and yelling in pain after having two doses of a powerful pain med, dilaudin and one dose of Valium. I wanted him to see what I was dealing with. I wanted him to understand how serious it was. I felt wrong taping her suffering, but I just wanted him to understand. I wanted to spark some human emotion in him. He never answered me back. 
If he couldn’t come there, fine. I mean I get it, sort of. He could’ve at the very least called and checked in at some point during the night. I’m sure he had to take the train home and had time to shoot out a quick text. There’s no excuse. People can argue and say I also could’ve updated him and let him know what was going on, and they’re right, I could’ve, but at this point I was done enabling his behavior. If he cared he would’ve checked in. In today’s day in age there is just no excuses. It’s just like when he doesn’t answer text messages. He has the god damn Apple Watch. There’s no excuse. We know he sees his texts. He wants to act like he gives a shit but only when it’s convenient for him and I’m sorry, but it’s infuriating. Especially when you know how a person normally operates and you know his lack of regard for our mother isn’t normal for him. He was never the most helpful son but he did at the very least, have care and concern for my mom, through the years. 
I have to put some of this on Satan too. Nights like these only helped to solidify that her concern for my mom was limited and phony at best.  My mother-in-law was hospitalized this past year as well. My in-laws live out of state and have since my husband and I started dating and so I don’t have a very close relationship with them like he did with my mom, but nevertheless I love them and when I found out she was in the hospital, I must’ve asked my husband for hourly updates the whole time. I wanted to know what was going on with her and make sure she was ok. Sometimes men need a push with things like that. Me asking him will push him to get updates from his dad or his sister who are there with her. The fact that NEITHER of them thought to check in that whole night, it goes to show what kind of people they are. They come first always. Their good times trump everything else that’s going on. 
I managed to get a few winks of sleep that night but as soon as I lifted my head off the pillow in the morning, my heart started pounding and I started looking for my phone to see if I had a call or text from my mom. Other times when I had brought her to the hospital I’d wake up to see a text about what was going on. This time there was no text and so that worried me a little. I didn’t want to wake her up if she was sleeping. I knew she hadn’t slept in days and so I figured maybe she was finally getting sleep. I sent her a text and told her to call me. In the meanwhile I rang the desk at the nurses station. They told me she was sleeping but due to HIPA laws they couldn’t disclose any further information. 
I was stuck between a rock and a hard place. My son had school that morning but I didn’t bring him. I was far too tired. This is why being an adult sucks at times. I wanted to be with my mom. It was all I could think of. If I didn’t have my son I would’ve went right back up to the hospital but I had to think about him. I was seriously traumatized by what I had witnessed that night and with that said, I didn’t think it was a good idea to bring my son up to the hospital to see his grandma like that. On such short notice, I didn’t have anyone to watch him either. At around 10:00am I got a text from my brother asking me if she got a room yet and informing me that he was going to go see her at his lunch hour. It was better than nothing I suppose and I at least felt some relief that someone would be there, at least for a short time. 
I eventually heard from my mom. She told me she was still in pretty bad pain but they were staying on top of it and she was able to get a little sleep here and there. I told her I’d be there as soon as my husband got home from work. It was around 3:30 and I believe she text me and told me not to come because they were taking her for a few tests. I got back to the hospital later that evening and she still wasn’t back in the room. They had moved her from the regular ER to the Critical Decision unit. The nurse came up to me and asked me who I was, and told me that someone needed to go pick up her MRI results from the radiology place where she had them done. I didn’t want to leave again, but I had no choice. They needed my mom’s written consent that I could go pick the disk up. 
They rolled her in right before I was about to leave and I had her sign for consent and I left. I got to the radiology place right before they closed. The girl handed me the disk. I walked out into my car and sat down. I looked at the envelope on my legs and took a deep breath before opening it up. There was a DVD with the images on it and a document. I pulled the piece of paper out and started to read. While it was difficult to understand, I got the feeling it wasn’t good. I didn’t want to say for sure and so I took a photo of it and headed back to the hospital. 
I walked into the CDU and over to the station where my mom was and sure enough there’s my brother, Satan and their one and a half year old baby. Why the baby needed to come, I will never understand. I explained to my brother how bad things were the previous night. I mean he could see for himself. Why Satan couldn’t stay home with the baby while my brother went and spent some time with my mom, is beyond me. The ER isn’t a place for a baby to be running around in. The only time my brother was allowed to come alone was during his lunch break. I guess because there was a time limit. Satan probably doesn’t like the indefiniteness of time that comes with an after work visit. If he goes alone, she cannot control how much time he spends there. When she’s with him she can make an excuse (as she always does) for why they can only stay a short period of time. 
I didn’t want my brother or Satan to see the printout that came with the disk and so I snuck by and handed it over to the nurse. The last thing I needed was for them to read it and scare my mom. I thought it was best if a doctor gave her the results. I didn’t even want to say anything about it myself. I excused myself to use the bathroom and when I came back they were all gone. Sure enough they had finally gotten my mom a room on floor 12. I went up to the room and by time I got there my brother and Satan hung around for about ten minutes and then Satan made her usual excuse that the baby was tired and they all left. I stayed with my mom until about 11:30 pm. They still hadn’t gotten her pain under control fully.  
I went home that night and got a pad and a piece of paper. I sat at my kitchen table and pulled up the photo I took of the paper that was with the MRI disk. I had to interpret the medical talk, and so word by word I went through it and googled everything that I didn’t understand. When all was said and done, I finally knew what was causing my moms excruciating pain. She had a cancerous tumor on her sacrum (tailbone). It was pushing down on her sciatic nerve and all the nerves going to her legs. It had also expanded between two of her vertebrae and were pushing on the sac surrounding her spinal cord. On the report it said it had caused a fracture in the bone as well but they later seemed to think that wasn’t the case. Either way, that explained why she was in the incredible amount of pain she was in. At that moment I knew shit was very serious and very bad. Once cancer spreads to the bones it is considered to be in stage four, incurable and untreatable. “Holy shit!”, I thought, “this isn’t good.”. 

From that moment on it was pretty clear where things were headed. I hated knowing this. I wanted so badly for it to be wrong and part of me hoped it was, but the more rational part of me knew what reality was. I didn’t know what to do with this devastating information. I was so upset and so I decided to reach out to someone who was closest with my mom……my aunt Debbie. I shot her a text and in the text I had apologized for everything and told her shit was serious now, I explained what I had just interpreted and told her that we just needed to be there for my mom. I wasn’t too surprised when she wrote back. She told me it was ok and that she was really worried about my mom. 
About two weeks prior to my mom’s hospitalization, my aunt Debbie took her on a road trip. I will forever refer to this trip as “the guilt trip”.  Aunt Debbie had found this really cool, eclectic hotel in upstate NY and she thought it was right up my mom’s ally. To be honest, while Aunt Debbie provided great emotional support over the phone to my mom, that’s about where her help ended. She hadn’t come out to my mom’s house,but one time the whole summer and that was just to take her to dinner. She helped out a little in the very beginning of the year by bringing my mom to a few doctors appointments but after I had written her that letter, she was no where to be found. She didn’t spend any time with my mom at all. She came to visit a few times when she was in the hospital in August and that was it and so when she planned this trip, I believed it was out of her guilt, because she knew she should’ve been spending more time with my mom. I’m not going to lie either, I thought it was pretty irresponsible for her to even bring my mom on this trip. She was in bad shape. Remember that this trip took place about two weeks before I brought her to the ER. My mom was having trouble breathing again and was in pain. I didn’t think she was in any shape to be hiking around or sight seeing. God forbid something happened and my mom was hospitalized four to five hours away from home. What would I do? At the same time, I knew my mom needed to get away and it was only for one night. She needed to get out of her house, and so I kept my concerns to myself and just hoped for the best. She was in such bad shape though, I had to pack her bags because she couldn’t even do it herself. She laid in her bed as I scrambled around her bedroom and bathroom gathering all the stuff she would need. 
Aunt Debbie told me that she realized how bad of shape my mom was in when they went on that trip. I was glad we were able to talk again. I knew that me and aunt Debbie being on speaking terms again was going to make my mom happy. I am a huge believer in that your mind and overall mental wellbeing plays a big role in your physical health and whether or not you can overcome things. Being upset, stressed or depressed will only exacerbate negative symptoms and so I knew seeing her family United was going to give my mom the push she needed to get through this. I didn’t know how long she had left but whatever time she had, I wanted to make it as pleasant, harmonious and peaceful as possible. Unfortunately though, I was the only one who was thinking that way……

(To be continued in my next post).