How do we stay abreast? Adventure in palliative care. 

It was reaching Halloween now and my mom was in the hospital for almost 2 weeks by this point in time. It is really hard taking care a sick person and also being the mother of a young child. It was the first year my son was truly excited about Halloween. He learned all songs in his preschool class and was singing the ghostbusters theme, day and night. I felt terrible but I couldn’t even think straight and I had no idea what to dress him up as. That was completely not normal for me. Usually I make his costumes but this year I just didn’t have the time or imagination to do it. My husband ended up bringing him to the store and he picked out a scooby doo costume. 
Before I could worry about Halloween, I had to get through this meeting with the palliative care team at the hospital. By this time they were starting to get my mom somewhat stabilized. Her pain seemed to be better from the radiation and it was under control. The first week and a half was extremely scary and my friend Kathy who was a nurse in my mom’s unit told me that a lot of that had to do with the fact that she was on an extremely high dose of pain medication which was making her seem a bit loopy and out of it. I spoke with her and her doctors about possibly getting her off the pain pump and back on to regular injections every 4-6 hours. The meds were making her so out of it she couldn’t even navigate through her phone. It was really weird that week or so not being able to text with her like I normally did. I still text her even though I wasn’t even sure if she could read it. I just wanted to reassure her that I’m there and give her some words of encouragement and hope. 
The doctors weren’t sure what to do with her once they did get her stabilized. There was no way in hell she was going to be able to go home and care for herself seeing that she couldn’t even get out of bed or walk. This was all part of the purpose of the palliative care meeting. We were going to discuss our concerns, her concerns and what her options would be in the future. 
I got to the hospital before my brother did that morning and I headed up to my mom’s room. My brother came walking in with a pad and pen as if he was some big shot who was super concerned with my mom’s welfare, all of the sudden. It just fucking annoyed me that he comes in during the 11th inning and all of the sudden acted like he was the once taking care of her or something. It was so phony. I saw right through it and it was clear his wife had him completely under her control at this point. I prepared myself for a lot of eye rolling that day. 
I left my ledger and quill pen at home that day and so I decided to record the meeting on my phone. Prior to then I had been recording all of my mom’s doctors appointments too. To anyone out there who is helping care for a sick parent or relative, may I suggest you do the same? I found it to be a big help, especially because when you’re there and you’re in the moment, you tend to forget things that are said. It’s nice to have the doctors exact words to refer back to. 
The doctors started off by asking us if we had any questions and right away my brother jumps in sounding all professional, reading out of his notebook, “what’s the current goal for the treatment? He went on to explain that because my mom was so heavily medicated, she isn’t always understanding. He was wrong. She understood perfectly. She understood all too well and she knew it wasn’t sounding good. It’s funny he even had to ask that question. If he dedicated more than 20 minutes a day to being there, he probably would know what was going on. The doctors told us they’d come back to that question but for now they wanted to know what others questions we had. I told the doctors I was up to speed because I spent all day and night up there. My brother interjected, “well I’m not up to speed because I’m not here all of the time.”. Then he starts going on he wants to know what the goal is of palliative care, and how things were going to be proceeding with her treatment. He paused and then said, “I also wanted to get an idea of what she’s looking for so that everyone is on the same page as far as……..she……….you know…..would want us to do for her if she’s not able to do things for herself.” The room got quiet. There was a doctor from the palliative care team and two social workers sitting with us. None of them said a word in response to his questions. Once again he’s referencing the healthcare proxy shit. I don’t understand why he doesn’t seem to comprehend that those are not the types of questions that you have in front of a group of strangers. 

The doctors didn’t really respond to what he said and instead I jumped in and told her I had questions about her meds and stuff. The doctor the. Turned to my mom and asked her if she had any questions and her questions was, “I’m just wondering how I am ever going to sit up and get out of here.”. For the next half hour we addressed her medical situation. The fact that her pain wasn’t fully controlled, that her kidney failed and she needed to do dialysis, the fact that she couldn’t walk or use the the bathroom anymore, were all things that would need to be addressed before she was discharged. They also encouraged us to start making a discharge plan this way we weren’t blindsided but from where we stood at that point, it didn’t look like a discharge was coming any time soon. What made her situation way more complex was that she lived on her own. She would either have to go to a rehab center or home with a fulltime aide which wouldn’t be covered by insurance. Prior to the meeting I had told my mom that she was more than welcome to come live with us and that my husband and I would care for her.
My mom was still kind of out of it from the pain meds and wasn’t able articulate herself as well as she normally does and so I basically remembered a lot of the concerns she has over the past two weeks, that she had shared with me and so I tried to voice those for her. My brother was relatively quiet during this portion of the discussion. She had a long road ahead it seemed. They had to get her pain under control first. They explained that the radiation would take some time to take effect. It had only been a week and it could take up to two weeks to take full effect. The other issue was the fact that she couldn’t walk and her muscles wasted away quite a bit in the short two weeks she was there. She would have to be evaluated by a physical therapist before leaving and she’d have to be able to sit up and support her own weight, in the bed, which she was unable to do at this point in time. 
After most of the medical issues were addressed there was a long pause. My mom sounded was about to ask another question when my brother interjected once again…”I have a question….about when we should start the discussions….I know she had a healthcare proxy form…..filled out which I guess was my sister but like, I don’t know if it was ever done, but I don’t think we had a discussion as to what your…….what your wish actually are…”. I was so sick of those god damn healthcare proxy shit already. It was starting to get insulting and I couldn’t for the life of me understand why he kept harping on it. For three years he had no problem with me doing everything when it came to her and for the past year of her being sick, he did nothing. Now all of the sudden he is worried what her wishes were? Did he think I’d make some type of irresponsible decision? If he was so concerned why did he wait two weeks to ask her, in front of a group of strangers? Why not ask her when you’re sitting in the room with her. I had suggested several times that just him and I sit down with her and discuss her “wishes” but he ignored me every time I suggested it. Now he wanted to know? 
I watched my moms face and immediately she shot me this annoyed look. I knew this was something she was uncomfortable discussing at all, let alone in front of these people. Whether or not she was going to be resuscitated in an emergency situation, wasn’t exactly her biggest concern at that point in time. Although my mom and I never had those specific kinds of discussions, I think she believed they weren’t necessary because she trusted my judgment and pending on all the circumstances, I’d make the best decision for her. I didn’t need to know exactly what she wanted. I know that if there was a chance of her fully recovering and having a good quality of life, she’d want to be revived but if she was looking at a hard life of suffering or being a vegetable, she’d rather go in peace. It’s that simple.
My brother kept insisting and my mom said she didn’t know. She’d have to see a list or something. Knowing my mom the way I do, she probably only mentioned the list because she didn’t want to talk about it and she figured there would be no list so that would end the conversation. To her surprise though, the social worker explained that there was a list and as she was explaining it my mom just kept saying, “ok, great! Ok, great!”. When she does that, that’s her way of politely telling you to shut the fuck up and change the subject. I know because she did it to me all of the time! 😂😂😂. 
The social worker then mentioned that there’s also something called a power of attorney and that’s more for financial stuff. Should my mom be unable to take care of her own finances at any point in time, a power of attorney would be able to do things of that nature for her. They could pay bills, transfer money, and write checks and stuff. As she’s explaining that, my brother jumps in and says, “and it will probably be a good idea to get you to an eldercare attorney……again, to protect you.”. Personally I don’t think he had any interest in protecting her because realistically, how does an elder care attorney protect their client? Eldercare attorneys only protect them by writing wills and trusts. Once the client dies their job is to protect the estate and the heirs, not their client. He wanted her to get to an eldercare attorney to protect HIS best interests which was HER money! I believe his issue with the healthcare proxy stuff wasn’t an issue at all but a way to segway into talking about an eldercare lawyer. He knew if he brought up just the eldercare lawyer it would make him look greedy so he wanted to use the healthcare proxy as a way to make it look like he was concerned about her, first and foremost. My brother has always been greedy and selfish. He has always been all about himself and what he wants and so he wanted to make sure he got his half of the inheritance and that was his number one concern the whole time. My concern was getting her to a place where she’s comfortable, not in pain and can preserve at least some quality of life. At that moment in time, healthcare proxies, power of attorneys and all that other shit could wait… especially seeing that she already had all of them. That’s what was in the safe with her will. My brother knew that too. 

The meeting was coming to a close and the doctors and social workers asked us if we had anymore questions. I felt like all of my questions were answered at that point but of course my brother had some. I remember seeing this meme on Facebook one time that read, “look at that bitch eating her crackers over there like she owns the place!”. It’s basically poking fun at the fact that once you are angry or annoyed with someone you find everything they do offensive, even something as simple as eating a cracker. I don’t know if my brother had become my bitch eating crackers or what but he really just fucking irked me the way he spoke and carried himself. He asks the doctors, “so who can we speak with to stay abreast of the situation.”. The immature 16 year old in me wanted to laugh out loud and say, “ha, ha! You said a breast!” but I held back, but I mean really? Who speaks like that? The doctors are not expecting their patients to have their doctorate in the English language. Speaking like that made him look like a pompous asshole. His next question was really a doozy. He asked, “what type of questions do people usually ask in these types of situations?”. I mean really? Can we keep the rhetorical nonsense to a dull roar!? That’s a stupid question. 

The meeting ended and my mom asked me to get someone to clean her up. When I came back in she was looking at the paperwork that the social worker handed to us. One was the form for resuscitation and the other was the name of a lawyer that had a grant to work with Cancer patients. Back when my mom was first diagnosed with cancer I was on the phone with one of my aunts and she asked me if my mom had a will. I told her yes, that she did and that my brother was the executor. Knowing everything that had transpired between Satan and us and how my mom said she wanted to change it to make me the executor, she asked me if my mom ever had it changed. To my knowledge at the time she didn’t and so my aunt urged me to talk to her about it ASAP. I explained to my aunt that I felt uncomfortable bringing that stuff up to her. That was almost 8 months prior to this day and I STILL couldn’t find the heart to bring it up to her. I figured that if and when she wanted to discuss it with me, she would. Up until August when I caught my brother and Satan in my mom’s safe, I too thought my brother was the executor of my mom’s will. When I finally saw her will, it named my Aunt Bea and Aunt Debbie as executors. I thought perhaps there was something written in there that said something to the effect of if my brother and I weren’t adults when my parents passed away, that my aunts would be executors but it didn’t. They were the only ones named as executors. The will was written in 1996 and both him and I were still minors. It was that day in the hospital that I brought it up to my mom for the very first time. I informed her that she had all those things we previously discussed and that it named Aunt Bea and Aunt Debbie. My mom responded by saying, “oh.” That was it. After what I had saw and heard in those two weeks I told her that she should change it. She told me that she thought I should be in control of her stuff but she wanted to tell my brother the truth. The truth was that she did not trust his wife and didn’t want her taking control of her stuff. It was absolutely nothing personal against him.
This was only the first part of the day. I was starting to get very concerned with what my brother and his evil wife were up to and the next few weeks would prove that my concerns were very legit. 
(To be continued in my next post) 

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