I will not take these things for granted

I have just spend 9 days working with and for people who can often do very little by and for themselves, who sleep in single beds with roommates that they may or may not interact with, and who go to meals at which they might not talk to anyone because their tablemates are mostly deaf, or they themselves don't really speak comprehensibly anymore.

This makes me appreciate so many things in my what-I'm-coming-to-view-as-temporary functionality. I have two functioning eyes, two functioning ears, and four mobile limbs. I can walk when and where I want. I can ride my bicycle or drive a car to go places I want to get to. I can talk to people to let them know what I'm thinking, or to pass the time. I wonder about residents' boredom. Are the residents who spend 7 hours a day parked in a wheelchair in front of the nurses' station bored? Or is the level of what engages their interest lowered such that boredom doesn't really apply? I can read, and acquire things to read that I want to read. I can go to the bathroom when I need to and be clean before and after. I can choose what to wear, and put it on myself, or take it off. I have a high degree of control over what I eat, and when. I can listen to music when I want to. I can dance.

I share a bed that I can make myself with someone I love who knows me well, and with whom I feel safe and understood, and whom I can care for as well, so I know that I am useful. I spend time with friends whose company makes me happy. I laugh a lot.

There is a poster up in the physical therapy room of a 70-year-old-ish woman wearing a swimsuit, with the caption: "Growing old is not for the faint of heart." No kidding.

Vocation

I spent 10 years in indentured servanthood in academia, moving from one degree to another because they were paid for by my TA-ing, but never really envisioning an actual future along one of these paths. I kind of let it remain blurry, and hoped that by doing my work well and getting good grades, the future would take care of itself. It didn't.

I married the right man, found the right city to live in, the right housing situation, but didn't know what I was doing professionally, despite, or because of, all those years in school.

I knew my current career path wasn't sustainable or viable, but didn't know what to put in its place. I thought through lots of random possibilities, then this whole nursing business kind of dropped into my head one day while I was waiting for the bus. I dismissed it, then several curiously serendipitous things happened, and the people close to me in my life didn't tell me that I was crazy or that I was just doing another degree and why bother.

When I attended an open house at the school where I now hope to study nursing, they suggested we become Certified Nursing Assistants so that we could get our feet wet in the field and make sure this is what we want to do. So that's what I've been doing. Eight days so far of clinic, and all signs still point to yes. I find this stuff compelling.

Then this is what my mom wrote to me in an e-mail, after she read all my blog posts back-to-back yesterday, and which I have her permission to quote:


Today I re-read the chapters of your blog I'd already read and caught up thru the latest entry. [...]. I think you have found the ideal vocation. It challenges your mind and engages your heart, providing the sense of giving back that you require. Good call.


:)

Management

On Monday and Tuesday, I was on the third floor, shadowing Joe. Wednesday, Thursday, and Friday, I shadowed Jane. Jane works hard and constantly, interacts with the patients like they are human beings--she addresses them by name and jokes with them and is clearly concerned for them. She has been a great example and teacher, although even she and I had a conflict during dinner the first day I shadowed her--she asked me to feed a certain resident, and while I started to do so, I realized that the resident was picking up her own fork and attempting to get food on it, and simply didn't have the coordination to do so. She could guide the empty fork to her mouth without a problem, however. So I started spearing bites and leaving the fork on the side of the plate for her, and she did fine. She'd had 3-4 bites this way when Jane looked up, saw the fork wasn't in my hand, and said, "You have to help her, she can't feed herself." I said, "Yes, she can, she just needs a little help." So Jane got up, and began feeding the resident herself, hurriedly. I have taken very seriously the idea that my job is to help residents and patients achieve their highest level of independence--this is important for their physical health, because they need to move, and for their emotional health, because it makes the difference between helplessness and self-esteem. The NACs, even the fabulous ones like Jane, have such a large workload (10 residents to herself), that they tend to do everything as fast as possible, which tends to be to the detriment of residents' exercise of any sort of autonomy.

Later that day, I began pushing a resident in her wheelchair towards her room, since Jane wanted her to get there faster. Stella, the supervising LPN on Jane's side of the floor, saw me and said "Ms. Smith can push herself. And she needs to! She needs the exercise. It's the same way with feeding residents who can feed themselves." I was very glad to hear her say this.

Stella pays attention to what's going on on her floor, stops NACs in the dining room from talking to each other and has them talk with the residents, helps out NACs by doing any task they need if she's got a spare moment and it makes their job easier... she's a great manager, respectful of the residents, warm with the NACs, manages to keep something like a big picture in her head while performing tasks both detailed and demanding, and man do I wish for the 3rd floor's sake that they'd move her up there for a while.

The first day I shadowed Jane, she introduce me to Kiko, and told me that she and he watch each other's section of the hall when the other is on break. I was pleasantly stunned. No one does this on the 3rd floor, which is why us students had such trouble finding NACs up there--they were on constant breaks, and all together. No LPN on the 3rd floor really directs anyone's behavior or sets any limits. Clearly they wouldn't leave for simultaneous 45-minute breaks if someone noticed and called them on it.

Underdogs

I've just gotten home from day 5 of my two-week clinic. Students are playing hooky like flies, or something. I've been there all but 3 hours of the 40, and most folks have missed at least one entire day.

I've found this to be challenging and thought-provoking and fulfilling. I realize it might seem premature to say so, but given that I've embarked on a drastic mid-life career change, the fact that I've had no second thoughts--even after spending a week changing "briefs" and wrangling wheelchair footrests (no two are alike, good Lord)--seems significant. I find the ways I'm spending my time and using my brain and hands and health gratifying. I'm finding, so help me, negotiating the often conflicting expectations of different authority figures to constitute an interesting challenge and test of my social skills rather than an infuriating obstacle.

Every population I interact with I recognize to be disadvantaged, which unfortunately seems to be what my exercise of patience is predicated upon. The residents are mentally or physically impaired, dependent on others, aware of this, and are often depressed or peevish or aggressive as a result. The NACs are mostly immigrants, dealing with linguistic and cultural challenges, and thus also to be dealt with patiently. The RNs & LPNs that manage the floors, like the NACs, have over-large workloads, and simply cannot be everywhere and aware of everything at once. And I don't mean in these cases I'm gritting my teeth and exercising great forbearance.

I mean it's as easy for me to slow down and consider circumstances and some greater good and not get my hackles up as it is for me to do with my daughter, the first person with whom I think I have truly been patient in my life. Too bad I haven't figured out how to generalize this situational attribution to everyone, not just the "disadvantaged" according to whatever standard I clearly must be using. Would be nice if I could be patient with my husband, family, students, and friends in the same way. I'd be a lot less grouchy. A friend of mine once told me that relationships are all about managing expectations, and I see the truth of that statement more and more as time passes.

In theory, practice is like theory.

But in practice, it sure as heck isn't. Yesterday was my first day of clinic, at a real, live, longterm care facility. I am on evening shift, 1-9pm. The nighttime NAC instructor, not Betty, was our supervisor, even though she'd already supervised the day shift from 6:30 am to 2pm, since it should've been a third person entirely, Amita. Amita was stuck with car trouble a 2.5 hour busride away, so she didn't make it.

I'd come to think from Hazel's descriptions of her experience working as a NAC that I'd see a bunch of overworked NACs who couldn't possibly take as much time to practice humane care as is ideal, since they had too much to do, given a too-large resident-to-NAC ratio possibly made worse by the current economic climate and the budget cuts that have happened everywhere as a result. Instead, I saw NACs who should've been overworked, given the too-large resident-to-NAC ratio, but who weren't, because they did the minimum and took frequent and long breaks. It's frustrating for us as students, because we are each paired with a NAC, whom we are supposed to shadow and help, but the NACs keep disappearing--we'll look down the hall and see the other 4 students on our floor, and no NACs are to be found.

This has good and bad aspects. The bad are that care is performed peremptorily, minimally, and with almost no conversation or human interaction. I have seen the NAC I shadow--I'll call him Joe--joke around with a few residents, but mostly he comes in their rooms, quickly changes their briefs, wipes them, changes their clothes, and they are put in bed with no explanation or gentleness. Joe is effective, fast, safe, and self-assured, but he does not talk to or with them.

The good side of this is that, when and if I manage to get a job in a facility like this one, simply by working the hours I'm paid to work, there _is_ room and time for me to care for residents in the ways Betty has taught us. As Joe was putting one resident to bed, he was brusquely moving her limbs about and tucking pillows under here and there (essential to preventing pressure sores), and I reached down to pull the gown he'd put over her front further down her legs, so it would cover more of her and not be wrinkled. She thanked me--and before that she'd only replied in monosyllables to direct questions.

I had conversations with a few residents this afternoon and evening, and they seemed mildly surprised, and appreciative. One resident, who I'd assumed from a series of repetitive sounds she'd made yesterday must be quite absent mentally, told me she was 95, and asked about the bruise on my thumbnail. Another told me he can read again after his Parkinson's medication (L-Dopa) since it has helped him control his fidgetiness, and that he likes good fiction. _The Razor's Edge_ was his favorite novel for years, he said. He's only reading pulp fiction currently, because that's what he finds on the shelves at the facility. He hopes to move from this facility into an assisted-living facility, since his symptoms have abated significantly with his medication and he is again mobile.

Joe has brushed no one's teeth so far that I've seen. If I went two days without brushing my teeth, I'd start to feel not human. Amita, who has rented a car, suggested in our debriefing today that we touch the spot on our neck that makes us stupid, and ask our shadowees, wide-eyed, "So, I know that different places have different ways of doing things, but when do you do P.M. care here? 'Cuz I have to check off tooth-brushing on this list I have from my instructor..."

As for the briefs, all the residents I've seen so far that don't walk to the restroom by themselves wear them, which is distressing. It possibly has more to do with the trouble it is for caregivers to assist with toileting than full incontinence.

I realize I am being harsh on minimum-wage workers, many of whom are immigrants trying to make it here. Maybe they started off kind and gave up. They are kind to each other, and to me. Nonetheless, I find at clinic, as has been the case for me everywhere else, time flies as long as I'm busy, and crawls if I'm not. So today, during a few of the crawling times, I asked residents if they are comfortable and may I adjust their pillows, or if we might make beds while residents are dining... and Joe tells me "Don't worry, it's no problem." He clearly thinks I'm the type that works too hard, in a bad way, since it makes trouble for others, but I'm not there to take 30-minute breaks every two hours (we're in a somewhat far-flung part of the city--I wonder where he and the other NACs go!). Does time not crawl for Joe when he is idle? Hmmm.

A final thought: without giving up a minute of their ample break time, the NACs and LPNs on the floor I've been on could at least use proper terminology for the sake of preserving residents' dignity and self-respect. We are supposed to say briefs or Attends and clothing protectors, NOT diapers and bibs. :/

Power of Attorney

So I've always heard the personal is political, and that has felt very true in my own life. I'm now learning that the medical is legal.

NACs are certified, not licensed, so there are many limits on what we are allowed to do, that is, our scope of practice. As one become licensed to do more advanced things, one takes on increasing liability. I'm not even licensed. But I am still at risk for tort claims, both intentional and unintentional. Assault or battery would be in the first category, neglect in the latter.

Battery means touching someone without their consent. If a patient or resident is a "no-code," or DNR, that means there is a do-not-resuscitate order in effect for them, and were I to find such a patient in respiratory or cardiac arrest and perform CPR, I would be engaging in battery.

It's all about consent, and that's trickier than I'd even realized it could be. OBRA, the Omnibus Budget Reconciliation Act of 1987, put into place all sorts of regulations regarding quality of life for residents of long-term healthcare facilities. Part of OBRA guarantees the right of such residents to having a fulfilling sex life, should they so choose. Such residents can include the mentally retarded and people with early-to-late-stage dementia. The mentally retarded, it's worth noting, can often be 6-year-old brains functioning inside of healthy adult bodies with all the normal hormones and desires you'd expect to find there. So here's where it gets weird: the mentally retarded, if they're on the same level of retardation, may have a sex life, and even procreate, and no-one can enforce that they be on birth control, unless their parents, say, have their power of attorney and have made such a decision. So Betty knew of two mentally retarded residents who had sexual relations that resulted in pregnancy. The woman had had her baby and her family took it and raised it. I guess the illegality of a healthcare facility interfering with or preventing such an occurence is the result of some combination of ADA (Americans with Disabilities Act) protection of the rights of the mentally retarded as citizens, plus their OBRA protections as residents there. However, mentally retarded patients of differing levels retardation may not engage in sexual relations with each other, because it's considered that the more severely impaired person is unable to give informed consent. But it's ALSO the case that as soon as someone has been diagnosed with dementia, even early-stage dementia, he or she is considered to be unable to give informed consent--so technically an institutionalized husband and wife on the same mental decline schedule couldn't share a bed (although clearly no pregnancy can result from their union). Yet I know this happens. I think there might be difficulties with conjugal visits, however. But Lord, wouldn't you want to just be able to cuddle with the person you'd spent 50 years married to, and to provide them physical contact and comfort? Ugh.

I found some of this pretty confusing. I asked Betty about it, and she said to prevent the situations that might result in non-consensual sex, you get to know the facility, its regulations, and its residents well, and you get to know who wanders. It seems to me that this must be such a different side of healthcare than that doctors experience or are trained for.

On another note, I related to Betty what Hazel had commented regarding what affects quality of care, that is, that the most important factor is the ratio of residents or patients to NACs. She said that is quite true, and that it is sort of regulated by law... OBRA has regulations for this ratio. But then she added something I didn't know: OBRA only applies to facilities that accept patients or residents on Medicare. I need to do a little research on what percentage of longterm healthcare facilities _don't_ accept such residents.

I wonder what unions or professional organizations might exist to help affect this ratio... I'm guessing that overall NACs are not a particularly politically radical or politicized group of workers.

One last note regarding legality: HIPAA, pronounced as though there were a female hippo, refers to the Health Insurance Portability and Accountability Act of 1996. It protects patients' and residents' privacy. Betty says she's heard people violating it constantly, because they'll discuss patients' conditions or situations in public areas such as cafeterias or elevators, where information can be overheard. She said that we should realize that the women two tables over could be the family members of the patient whose diagnosis we're discussing, and that maybe they haven't heard about it from the doctor yet. Ouch.