I didn’t know we were there yet…. (part a) 

 My mom was now going into her third week at the hospital and she was kind of in limbo. Her condition wasn’t really improving. It was Election Day and I had gotten her ballot from the election office and went to my local polling place to hand it in. My mom was so nervous about the results that she couldn’t even watch. 
I was really starting to lose it. My stress levels were at an all time high. I have never experienced so many emotions at one time. I just didn’t understand what was going on with my brother and Satan and what they were doing to my mom and what they were trying to do to me. The whole camera thing was really upsetting me. I just didn’t understand what their whole purpose was behind it and why it was even a priority of theirs at that point in time. Were they trying to distract me away from my mom? What was it all about? What were they saying to my mom? Were they putting false things in her head? Was Satan’s control and manipulation reaching her now too? I felt the world around me was crumbling. 
On top of all of this, I was really upset about something my mom said to me on Monday afternoon. She asked me when the lawyer that the palliative care team suggested, was coming. I told her the following Thursday and then she said to me, “I’m not sure what I’m going to do. I’m not sure you are going to be able to handle selling my house and everything, it’s a lot to put on one person and you’ve done enough.”.

I didn’t want to argue with her that day but later that night when I got home my mind was going a million miles per hour. It didn’t escape me that just a day or so prior she had a conversation with my brother and his wife, and now suddenly she was starting to question if I could handle her affairs. For three years straight she repeatedly told me and everyone else she spoke to that she wanted to make me the executor of her will. Now she was changing her mind. There was nothing I could do. It was her life and her wishes, not mine, and I was going to go along with whatever she wanted. 

After I cast her ballot I decided to vote after all. I headed up to the hospital afterwards and let my mom know that her vote was in. For once I had good news to share with her. She told me my brother had asked for her house key back because he wanted to get the box for his precious little camera. I didn’t even say a word about it. I really didn’t even want to bring his name up or discuss this camera thing any further. I had enough. I did want to know whether or not he picked up the camera and so I opened the cabinet door I left it in and saw it was still sitting on the shelf. 

Three more days passed and each day I would check to see if if he took it and each day it was still there. I assume that meant my brother didn’t even come up to the hospital during those days. I’d assume that since that camera was such a priority that he was bothering me and my husband about it at 9:30 at night when he was home relaxing, that he would’ve been there the very next day to get it, but he didn’t. I didn’t even want to ask my mom because I had no interest in opening Pandora’s box. I couldn’t believe that he left the camera sitting there for that long. You’d think if he did come, the camera would’ve been the first thing he looked for.

 

I have to say, those four days were the most peaceful days we had at the hospital. No Satan, no brother, no bullshit. A few of my mom’s friends had come to visit her and it was nice and I could tell it was lifting her spirits. 
My mom and I talked a lot in those few days just about normal everyday stuff. I missed talking to her like that. I felt like it had been months since we had normal conversations. She was however becoming more and more depressed and so one of the psychologists from the palliative care team suggested she think about taking an antidepressant but my mom refused it. I think my mom should’ve been on them since right after my dad passed in 2006. The death of someone that close to you, changes who you are as a person. I loved my father, but emotionally he wasn’t the best husband. Aside from his drinking problem, and the verbal abuse that came along with it, he was very stuck in his ways and unsocial. My whole life I felt like he held my mom back from living her life to the fullest, and I had always imagined that should he die one day, she would sort of get this sense of freedom and realize she had a second chance to meet someone who would treat her like she really deserved to be treated. Instead, my mom built this idealized image of my dad in her head and she got very depressed. I think a lot of it was guilt but the brunt of it was the fact that she had very low self esteem and no sense of worth. Growing up with verbally abusive father and then marrying a verbally abusive man did not help her and once my dad was gone she did get depressed. 
Depression isn’t exactly like you see it on TV shows or even in the Zoloft commercials. Depression is on a spectrum and their are varying degrees. Some people could have mild depression and some can be manically depressed. I believe since my dad died my mom was mildly depressed, but years later when my brother broke up with his ex-fiancé she became moderately depressed. Their breakup happened at a time where she was finally getting settled into her new life. She got along wonderfully with his ex’s mom and step dad, and we would spend holidays with them. It was like we had our own little family. Now suddenly she had to give up all of these people from her life that she had grown to love like family. Once Satan came around though, I believe her mild to moderate depression went a little further down the line and was bordering on moderate to severe depression. I saw it in her. She was really withdrawn and neglectful. She was crying all of the time and she would snap at you. She also started to eat a lot because food was her comfort and that made her gain weight which just added to her depression. She was miserable and negative and couldn’t be happy for anyone when something positive was happening in their lives. It was sad to see her like that because deep down insidei knew it wasn’t her talking, it was her depression. 

Everyone wears depression differently. Depression is like a snowflake. No two depressions are exactly a like because while all this was going on, she was still a high functioning individual. She got up and went to work everyday and she was really respected and appreciated at her job. She worked her ass off. My son was born at the perfect time because he became her reason for living. He made her forget all the bullshit that was going on with my brother and Satan. He was the light at the end of her tunnel, but once she got sick. She was severely depressed. 
There’s a part of me that feels wrong writing about such a personal thing that’s not MY personal story to tell, but I’m doing it because I’m so sick of people, (especially the baby boomer generation) thinking it’s a taboo topic to talk about. That admitting you’re depressed is something you should be ashamed of. For the last ten years I have felt like our roles had reversed and I was more like the parent. The symptoms of depression could wax and wane. Sometimes you can have a few weeks where you feel happy and normal, but the negative thoughts always find their way back in. As soon as something would go wrong it was like it would knock her right off balance, and I had to constantly talk her off the ledge. Of course I mean that figuratively, but I cannot tell you how many conversations we had where she was upset and crying and feeling hopeless, and I would tell her the same things she always told me when I was down. To take it one step at a time. To try to first tackle the thing that’s bothering you the most and to work your way up. She was stuck though. As if she was running on a hamster wheel. It was a vicious cycle. She’d cry and bottom out, I’d talk to her, she’d get motivated for a little while and start making changes and then something else would come along and knock her down. 
I didn’t think the antidepressant was a bad idea and so over the next week I would periodically bring it up and she kept telling me she would think about it. She was determined to get back on her feet but every time she would try, she would get discouraged. She was able to stand on her feet with assistance but only for a few seconds and I would tell her that she may not be seeing it, but was an improvement. They brought in her room this big lazy boy chair and so the physical therapist would sit her in the chair for about 20 minutes but she couldn’t stay in it for much longer. She’d have to call the nurses to come get her because she was in pain. 
I had popped in on the social worker early that week and she told me she was having trouble finding a rehabilitation center that my mom’s insurance would cover and so she was still looking and she’d let me know what was going on in a few more days.
Things were not looking good. When I had spoken to the palliative care director the prior Thursday she explained to me that the doctors weren’t sure if my mom was going to regain any of her bowel or bladder control back or if she was even going to be able to use her legs again. I think my mom was sensing it and for the first time in my life I actually heard the words out of her mouth that she was depressed. I had never actually heard her admit that she was depressed and so I remembered that when the palliative care director also told me about the antidepressants they had offered my mom and the specific ones they gave her would actually also help with nerve pain (which she had a lot of) and so I tried to use that to sell it to her. I don’t know why she was so resistant to the idea of taking something that is going to help you out in the end. 
That Wednesday night my mom’s cousin Lenore came up to visit her. My mom didn’t particularly care for her. She was one of those people that is just so nice and so soft spoken that it’s almost creepy. I mentioned her a while back but she is my mom’s cousin who was left out of her mother’s will. He mother married a wealthy man years after her first husband died and since his children didn’t speak to him, he left all of his money to my mom’s aunt. I’m sure my mom’s aunt had her reasons for cutting her but regardless, her younger sister got all of the money and now her and Lenore don’t speak. My mom has always been close with Lenore’s sister, in fact my mom is her god mother. Her sister moved to Florida years ago but of all six of my mom’s siblings, my mom was the only one who really kept in touch with her. Lenore was another one of those people who had to go above and beyond to be nice to Satan, by writing these over the top comments on almost every single post Satan wrote. Lenore was closest with my Aunt Bea and so birds of a feather flock together, I guess. My mom felt at times like aunt Bea and Aunt Debbie already counted her as dead and was replacing her with Lenore. My mom also hated the fact that Lenore and Satan would speak on the phone with one another and so that night my mom seemed really annoyed that she was there. 
While she was there my brother called. I was right about him not being up at the hospital since the day before I left the camera in the room. He told my mom he’d try to get up that night. I listened to my mom tell my brother what happened to her over the past few days and how she felt like she was never going to leave the hospital. She then came out and said it, she was really starting to feel seriously depressed as she said it she started to cry and all of the sudden I hear her saying, “ok, ok I’ll talk to you tomorrow.”. I was in shock. How do you hang up the phone with your mother after she starts crying? She looked disappointed, I could see it in her face but would never say she was. It’s the little things like that, that make me question if my brother has empathy or not. It also made me question his sincerity towards caring for her. 
That Thursday the 10th rolled around and after my four days of peace, it was a crazy day. First off the lawyer was supposed to come up that day in the late afternoon but when I got to the hospital it was so chaotic. The physical therapist came into the room and something went wrong with dialysis that morning so they wanted to bring her for a scan in the afternoon to see why she wasn’t getting good dialysis. 
That morning before I got to the hospital my mom texted me and told me that someone at the hospital, I believe she said the palliative care director advised her that she should see the lawyer alone, without the kids in the room. While I thought that seemed a bit odd for the woman to say considering the conversation I had with her the week prior, I told my mom I was fine with that. Then a few minutes later she called me up and says, “crap I accidentally text your brother asking him what time the lawyer was coming.” and then she asked me what she should say. Personally I thought she didn’t owe him any kind of explanation but I told her to tell him the truth. 
In the meanwhile, when I got there, the nurses were trying to clean her up and so I popped into the social workers office to ask her if she had any luck finding the rehab centers and that’s when she told me that my mom’s insurance had denied every rehab facility in our county, and the next one over. She told me it would be wise to start getting the ball rolling on Medicare and Medicaid applications. That was great and all, but my mom was refusing to tell her job she wasn’t coming back. 
As I was in there the attending physician saw me walk in, so he followed me and closed the door behind himself and sat down. The social worker explained to him how my mom’s insurance was rejecting every facility either because they couldn’t accommodate her medical needs or for other reasons. There was also the issue of dialysis and how she’d get there if the rehab center didn’t have one on site. Those things right there are the reasons why he wanted to speak to me. He went on to explain to me my mom’s medical needs. Firstly her pain, she was still on a very strong dosage of pain killers and they needed to get her down to a therapeutic level that can be administered orally. On top of that, she couldn’t walk and couldn’t even sit up and support her own weight. She was also fully incontinent and it looked as if there was absolutely no chance of regaining control in that area. He explained that once the nerves are compressed for any length of time they die off, and once they die off they cannot be revived. The tumor on her spine was compressing all the nerves in her legs and so he highly doubted she would ever be able to walk again. In order for her to go to outpatient dialysis, she’d need to be able to sit up in a chair for more than four hours which she was not able to do, and so he then asked me, “let’s just say we are able to find a place that can accommodate her medically, still are we setting her up for failure?”. I asked him what exactly he meant by “failure” and so he went on to explain to me the cold, hard, reality of my mom’s situation. He told me her cancer was so far advanced at this point that she was terminally ill. Deep down inside, from sitting there and watching her day and night in that hospital, I knew that, but it was the first time I had ever heard those words out of a doctor’s mouth and hearing those words it made everything real to me. She was in stage four. This was the beginning of the end. 
At this point in time the goal was quality of whatever life she had left. He explained that we can be sending her to this rehab with the hopes of getting back on her feet, and becoming mobile again but realistically we were giving her false hope. At the same time, keeping her in the hospital any longer was opening her up to other diseases and infections. I don’t know how doctors do this, and he apologized profusely for having to tell me these things, but at this point I needed to hear these things. I needed to know the truth and I actually thanked him and told him I appreciated his honesty. The whole time my mom was in the hospital I knew what my eyes were seeing. I recognized many of the signs from when my dad was sick. I knew where my mom was headed from day one, and that night I told my husband that something had drastically changed and I didn’t know if my mom was going to make it through, this time. I knew her cancer had advanced to stage four as it was in her lymph nodes, her stomach, her bones and her lungs, and god only knows were else. Not only was her cancer so advanced, she had so many things to overcome and it was seeming impossible. I was right and it was like everyone else around me, except my husband was in denial about it. 
Although I knew what was going on, I don’t quite think I was prepared for what the doctor said next. He told me that in his professional opinion, he thought the only way to maintain any quality of life whatsoever was for my mom to stop dialysis treatments and go on hospice. I was taken aback when I heard that word…..hospice.  My grandfather was on hospice and my dad was too, and both were gone within a matter of weeks from the day they started. I didn’t think my mom was that close to death. I was shocked for a moment, and I sat there in silence. Wow, I thought.. my mom is going to die. 
When you hear news like that it’s like being slapped in the face with a ton of bricks. The doctor explained that we weren’t there just yet. We still needed time to come up with a plan. To look into whether she’d do home hospice or go to an inpatient hospice. Earlier on in the conversation. I had told the doctor that telling my mom more bad news was not conducive to her quality of life at this point in time. Every time a doctor walked in and gave her bad news, she would go into a panic. I can’t tell you how many times my mom asked me if , or told me that she thought she was dying in those few weeks. Deep down I think she knew, but when people know they are dying they go through a few different stages. First comes denial which my mom had been in since she got her diagnosis. The next phase is bargaining which is where they will almost try to talk themselves and anyone else around them, including the doctors that they can return to normal life and be saved. 
The doctor emphatically agreed that at this stage in the game, there was no point of sharing anymore bad news with her. We also agreed that we weren’t going to discuss hospice with her until he talked to his team and we came up with a game plan. In the meanwhile he told the social worker to keep trying to find rehab centers and work towards that as a goal, for now. He told me he would get back to me in a few days. I thanked him for being honest with me and of course he was very apologetic about having to deliver such horrible news to me. I had to go back into my mom’s room and act as if I didn’t just find out she was in her final days. I didn’t even know how I was going to look at her knowing this. I slowly made my way back down the hall. I took a deep breath in and walked back into her room…..

(To be continued in my next post).

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