I have inside of me a really long rant and rave about the care my mother has received, and alternately the continual brush-offs I’ve received in inquiring about certain meds she is getting that are overdone/overprescribed. Also, I kept getting questioned as to why she is listed as “full code”. This would be phrased to me in terms of, “The doctor is questioning why your mother is listed as ‘full code’?” I would answer the same way each time, about her not being terminal at this point, about the back cancer being eradicated by the radiation therapy, etc. Over and over.
Fast forward through a whole bunch of bullshit that was utterly unneccessary and based on their *inability to flip backwards through a chart and see her history which was clearly typed out on blue-green paper and summarized her health issues this year*.
Late Tuesday afternoon I get a phone call that an estimated date of discharge is Novemeber 17th. Much later than we thought. Then I get asked what arrangments have I made since she cannot care for herself, she needs assisted living, or in-home care, 24/7 supervision. What?? Why?? Huh?? “She’s confused.” Duh. Cancer. Punched by radiation therapy. Narcotics to tamp down the pain as the radiation kills the cancer. Heeellloooo ….. Well, the fatigue wanes, and the narcotics are decreased she’ll not be confused. Discharge is almost 3 weeks away. Why do they think this? “The therapists are experts on situations like this and they say she will need 24/7 care.” I ask about costs and get told assisted living is high cost and in-home and much much higher. I am deflated, I am sad. I get off the phone and sob. A lot. Later that night I go in to see my mum and break the bad news. I tell her she come live with us again until she gets her strength back. She is none too happy about this. She wants to be *home*. I mention the expense is high. ( I believe I use the term “pay out your ass”.)
Fine. We’ll arrange care. I go in the next day to talk to social services and together we are to discuss with my mum her options. I asked her to ballpark in-home cost for 24/7 care. Which BTW is not medical care – no, she needs medication reminders, help getting up the steps to bathe, light housekeeping, like that. Medically she will be released. This is all needed because of her “confusion”. So ballparked, in home care will be about 12 grand a month. That can drop rather quickly as she later won’t need overnight, and eventually (how long is quite variable) won’t need all day, or any day either. As I’m talking to the social worker I’m getting the feeling that they believe she’ll need this forever. (Assised living would likely kill my mum in weeks just because how much she’d hate it.)
Anyhow … finally I say – “What I don’t get is why people (meaning her and the people she’d consulted with) are acting like the confusion will not improve when the pain diminishes, when the fatigue from the radiation wears off, and the narcotics are withdrawn.” I continued, “I realize the only woman you know is the one you’ve seen here, but the woman that was my mum in August – how does she get to the one in October, with no hope of getting back to where she was in August, when there is no evidence of organic brain disease? I just don’t get that.”
And then once again I get “the look” I know so well from these people. “The Look” says – “you poor dear. So deluded. How sad. You just can’t face your mother’s condition.” What the social says however is, “Honey, your mom has brain cancer. ” My world tilts, then spirals to blackness. “OMG!!! What do you mean?? When did this happen? When did you test her? The CT at the beginiing of the month was clear?? Why weren’t we told? When did it come back? Why didn’t the doctor call? I know Mum doesn’t know?” Alarmed and caught completely off guard, the social worker stammers, you’ll have to talk to the doctors. “No, I want to know what tests, when, what they showed! She was clear! She *had* brain cancer.” Blah blah do you know what metastatic means, sympathetic you-are-a-dumb-ass-daughter look, let’s get the nurse.
So now I’m panicking, stammering, shocked, and just not comprehending, pissed, distraught – reeling reeling reeling in my head. This changes everything about after care because she will simply choose hospice. While the nurse is being retrieved and briefed on the clueless daughter I gather myself and say, “Bullshit.” There is no eveidence.
We got to the conference room. “Honey, your mom needs 24/7 care because …..” I stop her. “I am not here to argue that. That is fine. She needs it now. I want to know why you are saying her brain cancer is back.” “It’s in her chart.” “Show me.” She turns a page and I see a quick note the radiation oncologist wrote when he was brought in for consult. It lists her recent history in short phrases, “Admitted to ER, confused, back pain, low sodium, brain CA, metastasis to the spine.” I’ve seen this note before, I read it when I met the guy and was waiting for him, I paged through Mum’s chart. I say, “That’s her history. She *had* brain cancer. She doesn’t now. Her CT was clear. She’s been having MRI’s of her head every 3 months for the neurosurgeon, and they’ve been clear.” “Honey, her brain tumor was a primary tumor. ” (More tight smile, sympathetic nodding at the dumb daughter.) “No”, I say, “the tumor was *not* primary. It did not stain as brain tissue, and all staining resulted in unknown primary.” I turn the pages in the chart for the nurse, who keeps chirping in that the chart says she has brain cancer. Middle of this she busts out again with, “The doctor wants to know why she is full code?” WTF? “Because she is *not* terminal! The back cancer will not kill her. Eventually, as it keeps popping up, cancer will kill her (thinking, unless you all do it first), but not this one. She is full code until she is terminal.” Oh jeebuz fucking god they are both smilenodstupid now. But now I am pissed. I want answers now. I am convinced now that they are wrong. After I had flipped the pages for the nurse to read her history, she agrees that it does indeed say brain tumor resected, raditaion, no sign of return. But she is not giving up. She’s calling the oncologist for clarification, because you know – I am just stupid and clueless. I leave as I have to go to work.
Three phone calls, questions and explanations later through the cancer center and finally they understand that there is reason there is a typed up history in her chart. Oh look. She does not have brain cancer. When they stuttered to the cancer center, “But she’s confused, so we thought she had brain cancer!” The reply she got was, “Gee, do you think it is all the meds she is on???” I had said this for weeks and got blown off. The asslicking motherfucking dicksuckers. I have been seething since yesterday. They are staightened out now. Maybe now they will give her her pain meds when she asks, which they’ve been chumping on big time. Maybe now they will stop treating her as half dead already. Maybe now, they will stop talking to like her brain is being eaten alive by cancer, and think, “Gee, narcotics, radiation, cancer, she must be confused because EVERY OTHER FUCKING PERSON who goes through this is confused.”
Fuckers! I thought *maybe* I’d get a quick I’m sorry when I arrived today. Nope. Sheepish looks. Avoidance of eye contact. Motherfuckers. All of them. Telling me my mum’s cancer is back because you were too fucking lazy to flip a few more pages in her chart. Fuck you! May your elder relatives be subject to the same shit you throw out daily. Fuckers.