Sideswiped
Well, it’s four o’clock in the morning on a Saturday–okay, closer to four thirty–and I’ve been up for hours. I got my work done. I’ve got a really huge cup of tea. It’s business as usual, except that my mother is in the hospital again.
Okay. That’s business as usual, too, at least in one sense–I only found out about it when I called the night nursing staff at her nursing home to check up on her.
I do that every night, and I also call almost every morning, too. Just to check in. Because they never tell me anything.
I’d called the night before last to be told that she was doing really well, responding more and more to the nurses when they talked to her, able to get up and sit in a chair for a while every day. In other words, doing a lot better than she had been doing.
Yesterday morning, I wasn’t able to call. We had a ton of things to do and there wasn’t a place in the day that was also a place in the nursing staff’s day.
So I waited and called at eight thirty.
And not only had they not called to tell me she was in the hospital, but the nurse I talked to when I called last night almost didn’t tell me either. At first, she just said that my mother’s regular night nurse wasn’t in that evening.
Telling me about the hospital was a sort of side remark, almost an afterthought.
A good friend of mine says that this kind of thing is not unusual at nursing homes, that nursing homes resist communicating with the families of patients.
I’ve got no idea why that might be so. The whole thing seems crazy to me, and the longer my mother is sick the crazier it gets.
The last time she was admitted to the hospital, her doctor had no record of her having any living children at all, and the hospital listed her family contact as my brother, who died in 2006.
In the meantime, she’s got a court appointed guardian–the only way the nursing home would keep her after my father died, unless I could move down there permanently, which I couldn’t–and he never contacted me or returned a single one of my phone calls for four solid years until about a month ago, when my mother was first admitted to the hospital.
Then he waited for nearly two days to tell me that my mother was in the hospital, answered maybe two e-mails once I finally got hold of his e-mail address, and has now disappeared into the mist, again.
This entire system seems completely out of whack to me.
And I’m tired.
10 Responses to 'Sideswiped'
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I’m so sorry to hear you are having these worries. I don’t know anything about that system – is it possible for you to fire the guardian and get another one? One who answers phone calls and reports to you?
Only one of my relatives spent time in a nursing home (hospitals are a different story). That was my great grandfather, who died when I was about 20. I used to phone and ask about him to save my grandmother the long-distance call, and always got a response from a nurse on the floor. How accurate they were, I don’t know. There was never any question of me or my grandmother not getting information from them about him.
That was before the new privacy act here, of course. I wouldn’t be able to do that now without written permission on file. Friends of mine who care for a mentally slow sister finally had to get legal permission to handle her medical care recently, after they and their parents before them had been doing so for over fifty years without any official documentation at all, simply her verbal agreement.
But that’s a rather different situation from yours. You obviously are in touch and can enquire; you just aren’t getting answers.
Cheryl
7 Aug 10 at 6:42 am
My parents, age 99 and 95, live about two hours from me, in their own condo outside Chicago. A “Geriatric Care Consultant” makes my life possible. She’s expensive – maybe $150/hour. She’s an RN who specialized in geriatric nursing before she started her business. She cherry-picks the caregivers sent by an agency to work round-the-clock in my parents’ house, keeps in touch with all doctors my parents see, comes at least once a week to check on things and pour meds, and calls and emails me regularly. She chose a hospice agency when my father’s dementia and general condition seemed to her to warrant it. She is a Goddess. Not that I think you should have to hire an intermediary to be kept informed about your mother, but it might work. Our Nancy Carey knows everyone in the local health care business and smooths our way.
nkateb
7 Aug 10 at 11:48 am
I work for a company that does elderly care management. Some of our staff are nurses and some are social workers. The people who hire us are usually legal guardians, often lawyers, who recognize the value of a professional who knows what is required to keep someone home, who to hire to do the work, and when it’s time to give up on that plan and why.
I don’t know that anyone ever hires a care manager for someone in a nursing home. Nursing homes usually have at least one social worker on staff, and that person usually gets involved with planning to send someone home and with in-nursing home activities. And of course there are nurses everywhere, so they’re expected to do their jobs.
Which, I think, is the problem here. We expect everyone will do their jobs, but the professional and the patient and the family don’t actually agree about what the job entails.
One of the blogs I’ve read for a long time is about to talk about this whole issue (again). The writer is in public health and he is, I believe, about to re-tell the story of his horrible hospital experience (the one he credits with interesting him in his field) from twenty years ago. A badly edited excerpt from his most recent post might sound familiar: “But it’s astonishing how little has changed since then. […] the organization of the hospital around the convenience of staff rather than the comfort and recovery of patients, poor sanitary practices, nosocomial infection, reflexive lying to patients about medical errors, overworked nurses . . .” http://healthvsmedicine.blogspot.com/
carolstone
7 Aug 10 at 2:27 pm
Sorry to hear–and outraged but not surprised over sloppy bookkeeping and uninformative staff.
Part of it seems to be the bureaucracy. The best physicians I’ve known at remembering that they were dealing with people and not meat were individuals and small partnerships. Hospitals start at uninformative and unhelpful, and get worse from there. Thank Heaven I don’t know enough nursing homes for a good sample.
I don’t know how you get around it in an institutional sense. Most professions have a bad track record at policing their own, and the head of an institution who enforces a standard his subordinates think unnecessary is ploughing the sea. It might make a diference if you could convince doctors and nurses that keeping the patient informed is a professional obligation–and that this extends to the patient’s relatives when the patient is out of it.
But of course a physician with his own notions of right and wrong can be terribly inconvenient to governments, corporations and–in some cases–patients.
robert_piepenbrink
7 Aug 10 at 5:10 pm
I don’t know about the US but Australia has privacy laws limiting what hospitals can reveal. I had to specifically authorize release of information to a close friend.
And what is a nurse to do when someone calls and says “I’m the daughter of Mrs. X”? How does she verify that the caller is really entitled to information?
jd
7 Aug 10 at 7:37 pm
Well, let me try to be clearer than I was this morning.
There are privacy laws here, too.
But I’m not bitching because I cold called the hospital and they refused to talk to me.
I’m bitching because the nursing home–where I’ve been known for over 10 years–although it’s required by law to inform me when my mother is removed from its premises and admitted to the hospital, doesn’t do it.
They have a contact sheet with my name and phone number on it, and they know they’re supposed to do this.
They just don’t bother.
This time, they not only failed to call me, they seem to have failed to call ANYBODY until my mother had been in the hospital for most of a day.
What’s more, they’ve got a sheet of information on my mother, which at least the last time the hospital got none or close to none of the information on–they didn’t know I existed, they didn’t know my mother has naturally low blood pressure or that she has Thal B.
And some of those things could be medically dangerous if nobody knows what they’re dealing with.
But they don’t have to take my word for it when I call.
They’re supposed to call me in the first place.
janeh
7 Aug 10 at 8:01 pm
AH! Now it makes more sense. The nursing home is asking for a law suit!
jd
7 Aug 10 at 9:24 pm
Given your mother’s poor health and the existence of the unavailable guardian, I suppose it wouldn’t be possible to have her moved to a nursing home in Connecticut? It would not only be easier for you to watch over her and come down on them like a ton of bricks if they don’t inform you of changes in her condition, it would also make the point with the Florida nursing home that their performance was unacceptable by removing one of their sources of income.
Cheryl
8 Aug 10 at 5:57 am
When my father died, we looked into moving my mother up here. Her condition is such that moving her would probably kill her.
And except for this notification thing, that nursing home is the best I’ve ever seen–clean, very high staff to patient ratio, on a little promontory jutting out into Boca Ciega Bay, lots of light and windows, good food.
I’ve seen CT nursing homes–even the expensive ones are ugh.
And, from what I’ve heard from people here, just as bad at communicating with you.
To me, this seems like a control thing. When I do get people to communicate me, they use the most jargon-y medical langauge they can find, and then get mad at me when I understand them.
janeh
8 Aug 10 at 6:41 am
I thought that might be the case. I had a close relative with very complicated medical needs which meant he had to live in a major city and even there had difficulty finding the necessary support. Sometimes even the best solution available isn’t perfect.
Not all medical people do the control thing, with or without jargon, but some certainly do. I’ve known of people with far more chemistry background than the medical personnel being given little lectures on how they can’t understand X because it involed pH, which is terribly complicated, or Y because, well, you probable didn’t know this, but iron comes in different forms (meaning, apparently, solid vs a couple different ions).
It can be very annoying – or amusing, if you don’t mind feeling a bit smug and superior while you explain to them or their superiors that you are not an idiot or uneducated.
Cheryl
8 Aug 10 at 1:20 pm