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.
Bone and Briar 
hugs
Thanks.
AAAGH LJ ATE MY REPLY!!! Short stuff, as far as I can remember:
1) Check out ‘s journal. Look through her memories for anything relating to communication with medi-pros.
2) Avoid overt verbal violence with the nurses; angry nurses make for painful patients. They pull hair, bump beds, spill drinks, and don’t answer calls when they’re annoyed.
3) Consider writing a note to hospital admin, pointing out that this social worker and/or nurse(s) gave you FALSE MEDICAL INFORMATION that was absolutely terrifying, and obviously untrue–if they’d bothered to read her chart. Request that they investigate which other patients or patients’ relatives they may have frightened, bullied or accidentally convinced to make bad choices because they were handed false information by someone who *claimed* to be reading a medical chart.
If you do this, craft the writing veerrrrry carefully. You want just the right combination of scared, worried and angry; too much of any one, and they’ll drop it in the bin they use for letters that say “you SUCK my dad had cancer and you said you could fix him and you DIDN’T I’m gonna sue you!!!!”
I’ll try to remember to get over her journal, thanks. I really would like a “sorry we scared the shit out of you”, but I was convinced well before them that that we were full of it. The part that got to me the most was the brush-offs I received and the attitude toward my mum *because* of the false belief. Two weeks of a different kind of care. Two weeks they’ve been over medicating her with anti-seizure meds even after I gave them all the info because they thought I was just too stupid to know she needed it “because she has brain cancer”. If they had just said it out loud we could have changed this in the beginning.
As for not being angry towards them, etc. so they don’t treat her like shit, this I know. I was very careful to be my normal cheerful self yesterday, with all the staff, for that very reason. And I of course did not tell my mum – for her sake because she’s been through enough already.
The letter after discharge is a very good idea. Thank you.
Pamela!
They’re making this more horrible than it already is!
(((((hugs)))))
Thanks. There was great hesitation in putting her in this particular facility to begin with, but they had private rooms and this was very important to Mum. I asked and was assured that they were “So much better than before they unionized.” What the hell went on around there before??
I don’t know.
Annoying idiots 😦
Good gods above, how awful. A pox upon them all for scaring the bejeepers out of you that way and for being too damned lazy to read a chart that they’re holding right there in their own two hands. The morons.
Glad to hear that this one won’t get her- and hopefully she’ll get a nice long reprieve from this shit after she’s home. You all deserve a nice break from this shit for a bit.
Thanks, Mattie.
Fucktards. Those people are already braindead. They need to learn to care again, and to read! Gawd, what assholes.
It appears we think alike. 🙂
Damn if that was me things would be going splody in the hospital! Ohhhh hand them their ass or better yet make it itch! Hell I would get them some reading glasses and a book on comprehension! Naah wouldn’t work.
{{{Hugs}}}
LOL. The hospital going splody (it is actually the transitional care side of a nursing home) would just put more people on the street, but the idea is sssooooo nice. I so hope that the people responsible for the lack of reading are more thorough with the next patients. I understand you don’t have time to memorize everyone’s chart, most of these people are elderly and their charts are thick, but just read the most recent entries, the ones pertaining to this particular admission would be nice.
Thanks, Vicki.
Jesus Christ. What fucking asshats.
((Pamela))
O.O.o.o.o. I didn’t mean to make the Christian swear!
Thank you, Mary.
this is so typical. it pisses me off that you are treated like naive idiot with a bad case of denial. they assume that you need their pity and they won’t listen.
if they could only hear themselves.
Thanks. I’m happy to report that her care has greatly improved. She me just a bit ago on the phone, “They brought me my pain pills. They’re doing a lot with this, there’s a difference even from the beginning of the week.” I snickered and told her that was good to hear. If nothing else, her care will be wonderful for the remainder of her stay. And just maybe the next patient and family will get a little bit better care, too.
Fucking asswipes! Stupid assholes!
That utterly sucks! Write a letter when she gets out and if that doesn’t work, dress up as a ninja and kick their asses.
*hugs*
LOL. NinjaPJ! The letter definitely. Creative use of magic for the other. 😉
Fuckin’ hell, Pamela. I’m speechless.
Some people just need killing. I think you’ve stumbled upon a nest of them.
{{{ }}}
Thanks. In no more than a couple weeks (and hopefully sooner) she’ll be home. Even the woman that works at the cancer center said at one point, “OMG! Get her out of there!”
What a pack of complete fucking morons. I’m so sorry you and your Mum are going through all this shit and it’s being made even worse on you.
{{{{{{PJVJ & Mum}}}}}}
Also, can I just say, they thought she was terminal and they were SKIMPING on the pain meds?!?!?!?!?! That is a)unforgiveable and b)ass-backwards.
I agree – why did they care about the pain meds? Maybe they considered it a waste of resources? Kind of like the repetitive, “Why is your mum listed as ‘full code’?” Luckily, my mum doesn’t know that brain cancer part, and she told me this evening she’s been getting her pain meds when she asks, and it is an improvement even from the beginning of the week. So, she should be good until she is home.
O M G
I am speechless. Well, no – not really – but I’m at work and can’t speak those words out loud. I’m truly sorry that you got stuck with such incompetant frauds for your mother’s care givers.
Thanks. My anger has been growing hourly. She had her last radiation treatment today, so hopefully anoher week and she’ll be home.
Whoot! Go you! They suck. Big. Donkey. Dicks. Outloud.
Hmm…any lawsuite material here? I know, it is probably not worth bothering, but may be worth threatening. LOL
Jaysus…now I’M even pissed.
Gee do you curse…you swear a lot too. 😉 mwahahah
(sick wiccan/pagan joke in there somewhere)
The lawsuit would take more time, effort, and money than I could give it right now, but I’ll get pleasure from thinking about it. I’ll also take the fact that she’s getting better care now.
Curse? Me? Why I *never*! ~cough~
That is absolutely insane. People too fucking clueless to actually do their jobs.
I’m so sorry you have to deal with that,
(((PJ)))
Thanks, MontiLee.
So why on Earth is this place employing people with all the intellectual acuity of lobotomised newts on a cold morning??
I wish your mother a speedy return to independence and relief from all these worries for you. I’d be very tempted to do a “more in sorrow than in anger” complaint to the most senior manager I could reach – after your mother’s out of the place of course.
Thanks, Ostein. And yes, a letter will be going out once she is released. Why the asshats are employed?? Beats me. No-one else will work there?