Posted by Brighty on Jul 26, 2020 2:28 pm
Posted by Laika57 on Jul 26, 2020 11:11 pm
I don't think I have any capacity left to deal with crap, so I may as well own up to it and tell them. Seriously, what can they realistically expect one person alone to do?
At the hospital there are a minimum of 2 people 24/7 with lunch breaks and nights off. Plus the place is geared up to deal with patients like him, making it impossible for him to get out of bed, and there not being a fridge to raid or a bathtub to try and step into. No access to medications other than what he is prescribed at any one time. No car keys, no stairs.... heck, they even control his food and can take blood sugar readings before he eats...
And like I said they have drugs to calm him, IVs if he doesn't drink enough... and they can ignore him without risking having the police show up at their door. And no personal investment so they don't care if he is trying to use emotional blackmail or just being plain mean.
I think they just don't realize what it is like to care for someone 24/7 because they never have to.
Posted by Brighty on Jul 26, 2020 11:32 pm
Posted by Kuching on Jul 27, 2020 7:33 am
Everything you said about all the ways a caregiver’s life is so much harder than a nurse’s really rang true for me. I felt exactly the same way. If I could have left (or at least gone to sleep) at the end of each twelve hour shift, life would have been a lot more manageable. Luckily, I had a GP who understood that, and told me to let him know when I couldn’t handle things at home any more. Then it was back to the hospital. But at that time, I could spend all day every day with him in the hospital, which made it a whole lot easier to make the decision to go back there.
Sending you hugs and strength...
Posted by Laika57 on Jul 27, 2020 10:26 am
If it happens again I'll just tell the bloody contractor that the job was canceled and they should just go home.
maybe that'll cause enough of a stir to force them to fix the issue....
psychiatrist just called too. They're messing with his meds again.
he didn't cooperate with the assessment so she didn't do it. Apparently he was taken off the anti psychotics. Now he's more delusional and paranoid than he was last week. So she asked for permission to start them again at 1/4 of the dose he was getting. What a joke.
I'm supposed to be calling CPP but I'm too angry to bring up the patience to sit on hold for an hour or two.
Posted by Runner Girl on Jul 27, 2020 10:55 am
Good grief, companies should be keeping their information up to date!
I have to wonder why, then they planned to release him, they would take him off the anti-psychotics. He's difficult enough for you to manage.
It almost seems that those who are managing his health in hospital are not speaking to each other. A meeting of all his in hospital caregivers might be a good idea before they decide to send him home and set you up for failure again.
Posted by Laika57 on Jul 27, 2020 11:06 am
so instead of cutting back to his previous dose, they decided to discontinue it altogether. Makes sense. To someone, apparently. Argh. It'll be weeks before his dose is dialed back in, especially if she only checks on him once a week.
now she was hinting about him being discharged to "somewhere with more help" - but, again, been there before. Will believe it when Isee it.
Posted by Laika57 on Jul 28, 2020 2:02 pm
doc called to ask for permission to do a gastroscopy. Apparently the same CT that "showed no infection" last week, now shows inflammation and they want to check it out further... (update, since apparently i have been useless long enough for them to get it done and come back with a result - it's just stomach acid.)
surgeons office finally returned my call from july 8th. No comment. I wasn't very nice.
@edwardtrishsmith 's post about the grief counseling really upset me, because i, too, felt very much abandoned by my counselor. So i finally sent her a text and requested someone else who "won't miss every single appointment and might check in more than once a month". Got an instant apology, woweee, and her colleague called me back within 20 minutes. She had no clue about the complexity of the situation but will make inquiries and find me help. We shall see. I've been promised that before. But it wasn't while i was bawling my eyes out. So maybe they'll take me seriously now. Can't afford for caregivers to fall apart now, can we, that would put a strain on the system....
The dog is no help today, apparently snot and tears offend his delicate sensibilities. Giant pansy that one ;-)
oh, wrote to the patient care manager requesting a proper, full picture update. Peeves me when i find out around 7 corners that they found stuff last week that they didn't tell me about. I included all the questions i could think of and a request to tell me any other pertinent information that i might not even know to ask about. (Oh, and i asked whether the oncologist had bothered to check his scans and post op chart yet or whether he was still procrastinating , in which case how would i go about getting a different oncologist.)
i am soo tired and drained and behind on my work...
Posted by Laika57 on Jul 29, 2020 5:30 pm
i was there for ten or so minutes, when the team (discharge coordinator, charge nurse and patient care manager) showed up to whisk me away to a conference room and talk about my concerns regarding discharge. They all seemed a bit appalled by the story of what has been happening. Not just three weeks ago, but since December.
I appreciate their concerns, but other than "there is no plan yet to discharge him any time soon" they didn't actually make any concessions.
this conference, however, required me to hang up the call with employment insurance and there wasn't enough time left to call them afterwards.
So that's put off to friday. Again.
meanwhile ian wants to know whom i met on my trip to australia, and what kind of jet planes i was flying out of korea. Maybe i need to watch the news to understand where he got those ideas. He was better informed about the restaurant that burned down down the street from us. I only knew because of the sooty footprints at the entrance and the the charred smell this morning...
Posted by Laika57 on Jul 30, 2020 3:17 pm
turns out, common practice is to do antibiotics for a certain number of days and then declare the infection cured without follow up testing. No wonder it keeps coming back....
she won't be on service next week, but left notes to her replacement to follow up with cardio and get the cultures done before he is sent off to the rehab floor. Great. Oh and mr. Oncologist is still MIA and ignoring her emails. No surprise there.
Posted by Cynthia Mac on Jul 31, 2020 12:40 pm
I think it was that post where you talked about that “pitch” in your stomach when they talked about sending him home. I got the same one when they talked about sending Dad home from the hospital, so I understand fully what your whole body went through in that moment, and I was relieved for you when I read on and saw that they’re keeping him for another while.
Posted by Laika57 on Jul 31, 2020 4:58 pm
On the bright side, i FINALLY got his EI sorted. Sad, but true, instead of giving her the specific amounts and explanations of which that i had spent 2h on hold with CPP to get, i started with the broad picture - "his pension started in february but they took it all - 4 months worth - back when they gave him 2 months of disability." She put me on hold, then 5 minutes later she had it all sorted. Now why couldn't my previous 4 calls have achieved the same?
Posted by Brighty on Jul 31, 2020 6:04 pm
Posted by Essjay on Aug 6, 2020 2:18 pm
Posted by Laika57 on Aug 6, 2020 8:28 pm
i went to see him today. He seems better physically but mentally, not so much. While i was out with the dog this evening he kept calling me saying his surgery scar had opened up and there was a gaping hole in his stomach and he was going to call 911 and take a cab home to meet the ambulance.... (i immediately called the nurses desk to make sure they checked on him)
needless to say, while i was navigating the dog through a crowded park, i fully expected to be coming home to an ambulance and maybe a fire truck and police car and broken windows or however they would try to gain access if noone answered the door... phew. Didn't happen. But not fun.
In other news, someone finally lit a fire under the oncologists backside and he called. Naturally, he hadn't even looked at the pathology report before dialing my number. How the heck does he think he is giving me an update if he hasn't even done his homework? Anyhow, after 30 seconds of studying the report, he pretty much told me to expect a recurrence (cancer cells near the margin and because pancreatic cancer is so aggressive). They may consider more chemo and/or radiation, once Ian is better. I asked about immunotherapy, and he says there is no evidence that it works on pancreatic cancer (i shall go study up on that). So, pretty much any further treatment will be delayed indefinitely....
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