Incontinence

is no fun. And I'm coming to see my own ability to "toilet" myself as a rather long blip on the screen. I've changed many an infant diaper by now, and have worked hard at potty-training my toddler. Now at work I help adults in various stages of losing, or, in the best case, attempting to regain, their abilities to (1) recognize when they need to use the bathroom, (2) get themselves there, (3) get themselves safely onto and off of the toilet, (4) get themselves cleaned and dressed afterward, and (5) wash their hands. Some just need supervision and reminding because they have epically short memories. Some, since they're hemiplegic, need help getting onto the toilet, or maybe just pulling their pants up. You try getting re-dressed sometime with just one arm. :/

It's a weird position to be in with adults, with whom I have normal conversations about normal things when we're not in the bathroom. It's infantilizing, and how I do my job can mitigate or exacerbate this dignity-robbing effect. The advice I was given back in NAC training was to be professional and matter-of-fact, and non-judgmental. This I have done, and it was good advice.

One hemiplegic client last week was on his way to the toilet, but the process of getting out of his too-big-to-fit-in-the-bathroom wheelchair and getting set up to use his cane to walk in took longer than it usually does, so he didn't make it. I spent a good 30 minutes getting him cleaned up and changed. He was mortified and apologized profusely. I was totally okay with it, in part because of the number of infant diapers I've changed, but that's not a comparison that would have made him felt better. Another client, who takes himself to the toilet without reminding or assistance, has now twice pooped--once on the floor, once on a chair--in the middle of group activities. He is the absolute _last_ client I would have predicted such of--no one else has done anything like this. It seems a little crazy. The second time he left the room without mentioning that it had happened, and someone had to point it out to me. I cannot imagine how incredibly embarrassing this must be for him.

A lot of our clients wear Attends or whatever other brand of disposable adult undergarment. This was the case in the nursing home where I did clinic. Unlike that home, however, we do not merely rely on changing these undergarments, bypassing the bathroom altogether. They still use the restroom. This seems so very important to me. Babies and toddlers don't go to the toilet by themselves, and to not encourage and assist adults' bathroom use communicates to them that they are children.

Personality is sorta chimerical

A few days ago, our planned physical activity of the day was indoor basketball with a 5' tall plastic basket. Steve, my co-worker, who's a case manager with several of the TBI clients I work with, ran the show. He decided that to even things out, he'd split our group such that the two clients with motorized wheelchairs were on opposite teams, another usually wheelchair-bound client was on one of their teams with her non-motorized chair, then he pulled 3 extra chairs out of the equipment closet. Two clients who normally walk on their own took the first 2, and I evened out the teams by taking the 3rd chair.* I don't think I'd ever sat in a wheelchair. It was fun, and I'm glad I don't have to ride in a wheelchair normally.

I've still not read any clients' files, so I'm still creating my own ideas about what they're "like," what's illness, what's part of their former personality. I'm sure it's a relief for them to be somewhere that people _don't_ continually compare their pre- and post-incident selves. There are some general characteristics one finds such as speech problems (softer than normal and/or inarticulate and/or disconnected and/or nonsensical speech) or loss of certain inhibitions (quicker to anger, tendency to make inappropriate remarks of a sexual or non-tactful nature). But then I think that if I'd had an accident that robbed me of, say, the use of a side of my body, and made me talk funny, and meant I wasn't as smart anymore so my spouse no longer found me attractive enough to be intimate with me, I'd probably be grumpy and quicker to anger than normal, too. And maybe have lowered inhibitions because I quit caring about social consequences because my deference to them didn't seem to help me be accepted by the world at large, anyway, now that I was disabled and looked down on or pitied or ignored.

One client seems to have vocabulary straight out of a John Hughes script. Her response to most things said to her is to grin widely, wave her hand, and say "I'm so sure! I'm so sure!" Did she talk like this before whatever-it-was injured part of her brain? Was she always such a cheerful person? Did her grumpy wires get disconnected altogether? Or the client who makes continual inappropriate flirtatious comments to me--maybe he's always objectified women in this way? Is that just his injury talking? My boss leads group discussions about once a month on communication skills and uses that phrase with the clients, telling them that what they said wasn't their best self, it was their injury talking. It's great they're learning explicitly to use other parts of their brain to inhibit certain behaviors. And this reminds me what a fragile construct self and personality are.

What if I had to ride around in a wheelchair as my only means of locomotion, and couldn't think or talk as fast? That would sort of be someone else, except they would have my not-as-functional body and some percentage of my memories.

*If you did the math, you realized that's not many clients. On any given day we have between 14 & 21 clients present. After the lunch that takes up the first hour, they're split into two groups, red & blue. One does the cognitive game/activity while the other does the physical, then they switch, then everyone goes through free-weights/sitting/arm/leg/standing exercises at the same time in the two groups in two different rooms. That day, the client who should've been in the wheelchair I took was still eating her lunch. She typically takes about an hour to eat the meal that most people consume in 10 to 15 minutes.

Getting Paid

My volunteer gig has turned into a paid job. The whole thing feels quite serendipitous. The TBI (traumatic brain injury) group had its program moved back to a former location, and its director asked that I move with them, and talked to the right people so that I got hired. The new/former location is quite close to my house, only a 12-minute bike ride or so, as opposed to the original volunteer location which entailed a 30-to-45-minute bike ride south. The move also meant they could switch back to their former hours, as well, which means that my workday fits very neatly into the time between when the Microbiology class I'm taking this quarter ends and when the kids' daycare ends. I can easily pick them up on my way home, in fact. I am still a little shocked that I found a job in my field that fits inside daycare hours and allows me to take the last prerequisite required for my dream program. (I submitted that application on 12/1, won't hear whether I got in until 3/1.)

The first few days of my job I spent washing dishes and barely talking to clients. We aren't running our own kitchen fully. Instead, we're having food brought up daily from the south branch, and having to do our own dishes. I got my food handler's permit the first week, and other than that spent that week getting the kitchen back in order, which felt somewhat like moving into a vacation cabin. The stuff was unused for so long, it all got dusty, it's all needed cleaning, reorganizing. I've thrown away a bunch of random stuff that was either in terrible shape, unidentifiable, or a crappy duplicate. As for the rest of the tasks I was ostensibly hired for, I'm slowly being trained in the why's and how's-of-the-why's: bathroom assists, leading exercises, helping certain mostly wheelchair-bound clients do their particular occupational-therapist-devised standing exercise regime. Each day involves lots of different kinds of tasks, and this makes me really happy and makes the time go by quickly.

I've especially enjoyed the one-on-one time I get with clients when I help them with the standing exercises. I've found my experience with Iyengar yoga and its emphasis on alignment and physical adjustments really helpful in this endeavor. We go to a bar facing a window, I fasten what's called a gait belt around their waists, and help them to do things like stand up with both feet facing forward and parallel to each other, or to put weight in their heels (one client would constantly be on his toes otherwise). My help consists of reminding them of the exercise routine and staying by their weak side, holding the gait belt, in case of falls. They're bearing most of their weight themselves. Because of the yoga stuff, I've been able to brace a heel, or support a calf, so that a client can move the other half of their body more freely, or with more control.

TBIs--and maybe their aftermath, like life in a wheelchair for some? I need to research this--lead to common muscular conditions, one of which is called "high tone," which occurs especially in the lower extremities. Their quads are always contracting, meaning it's hard for them to bend their knees much. Many TBIs involve only one side of the brain or the other, so clients have no control over one side of their body. But both sides, the side with and the side without control, have this "high tone" problem. One client always asks us to tuck (force) his left foot back onto the footplate of his wheelchair. If we don't, his whole lower left leg springs into the air and stays there. With his right leg, he can do the forcing himself.

During standing I end up chatting with the clients. I've found out that the Beatles fan in the wheelchair isn't quiet at all, and that when he's standing up he's about 6-foot 1. His TBI was from a car accident when he was 16 years old. He says he was in heaven 2 to 4 years after the accident, that God sent him back, and that he doesn't really remember the time he was in heaven. This does not come across as delusional rambling in the least. He's incredibly polite, and quick-witted, except that his perfectly articulated, soft speech is produced at about 1/6 of the speed of average speech. One day I called him a "rockstar" because of his hard work; I know from what my boss tells me that he's improved his mobility a great deal, and that this is due to his determination. He replied, immediately, carefully, and slowly: "I prefer to call myself a stud. That's what I was called in high school. I was a wrestler and played soccer." He's 29. He managed to finish high school over the course of several years after the accident, and thinks he survived for a reason. This has something to do with the time he spent in heaven. He wasn't driving the car.

Notes from volunteering

I've been neglecting my blog. I was thinking I could save my writing time and energy for the statement of purpose I've been working on for the nursing program I really really really want to attend. (Remember the person you had an absurd crush on in junior high or highschool? I have that crush on this program. I reeeeaaaaalllly want to get in.)

I'm come to think, however, that they are two very different kinds of writing, and actually, by neglecting to record my thoughts about my volunteering and my [thus far frustratingly fruitless] job search, my head is just full of more noise. So, I'm gonna get some of that noise out.

Volunteering is still great. It's fascinating. I've learned people's crazy stories and life histories. The TBI (traumatic brain injury) folks are the ones with the most to tell. One man, Jonny, who can't talk at all, by pointing the index finger of his one mobile hand at his alphabet board, told me that he's 31, and hasn't been able to talk or mostly move since he had his spinal cord injury at age 19 as a result of attempting suicide by jumping off a bridge. He's developed this obsession with blue M&M's, which he told me he wanted to use to get high. One of the staff members uses blue M&M's to motivate Jonny, giving him the M&M's whenever he does all of his exercises. I think I solved the mystery of Jonny's obsession with them for myself this afternoon. While listening to _On The Media_, I heard, as an example of sensationalist health reporting in general, that there was an irresponsible news report about a study done on a few rats that had some symptoms of paralysis lessened because they had the chemical that's in blue gatorade and m&m's injected. So of course a bunch of people freaked out and thought it was their last hope. Depressing.

[sample of this type of story here:
http://www.cnn.com/2009/HEALTH/07/28/spinal.injury.blue.dye/index.html]

Another man in the TBI crew I'd observed doing passive range of motion for his left side with his right hand. That is, when exercises involve one side of the body then the other, he'll do the exercise on his right side, then move his left hand or leg with his right hand when it's time for the other side. It's a lot more work, and it's impressive. No one else does it. I told him so, and he said, "well, I want to play guitar again." So far, he's regained some control over mobility only in his left shoulder in the 8 years since he had his stroke.

The people here are the absolute antidote to self-pity.

And there are strange things. There's a super-tall man, James, who spends his 4 hours there every Friday solving the same Christmas-themed jigsaw puzzle (maybe 200 pieces?) repeatedly. And I'm sure he does this the days I'm not there, too. He doesn't like to share his table, fastidiously finishes everything on his plate, in his cup, in his dessert bowl, and after wiping his mouth delicately with his napkin, he goes back to the puzzle. He doesn't interact with anyone, and he's silent, except while eating, during which he emits some otherworldly high-pitched noises, the production of which doesn't seem to require him moving his face at all.

There's a small, confused- and fragile-looking old woman, June, who tends to drift away from whatever's going on, except that she is able to concentrate very effectively if she's given paint and a brush. She doesn't require paper--one day, after the [cognitive] art activity had ended and most of the materials had been put away, we realized she'd been carefully painting the table for at least 5 minutes. She is probably the most passive person I've ever encountered. She answers every question, once she understands the words, with something to the effect of, "If you want me to."

There are two men with Down's syndrome in the morning group, one elderly, one middle-aged. They act in every way like petulant 8-year-olds, often exhibiting inappropriate attention-getting behavior. The middle-aged man is thoroughly devoted to a woman who is always there. That pair are inseparable, and squabble like children. I've used my parenting skills to decent effect with them. To the elderly one, who was pouting last week: "Fred, I know it was frustrating you weren't allowed to pass out weights at the beginning of class, but we'd love to have you help us with that in a few minutes when it's time. Do you want to come join us for exercises now?" He did.

A few weeks ago I was given the opportunity to help out downstairs with the highly structured group, which is made up of people with more significant dementia. We were playing a version of seated basketball, with a sad, deflated soccer ball (a staff member told me it's at least 8 years old), and I unthinkingly tossed the ball to the next person in the circle, rather than handing it to him. He caught it easily, and I remembered what we'd talked about in my Anatomy & Physiology class regarding different kinds of memory--declarative, explicit memory we store in the hippocampus, but muscle memory is stored in the cerebellum (and likely elsewhere, too lazy to look that up right now), and much of it can become reflexes. Catching a ball is one that was mentioned in our textbook. So we ended up playing toss, me to a client, back to me, to the next client, etc. It was amazing to watch. One woman repeatedly tossed me the ball off of her slender, long-fingered right hand with impressive grace. I asked her whether she'd played sports back in the day. She simply doesn't remember. But her ability to catch and throw seems unimpaired.

Finally, it's thrilling to be in a facility that uses all of the implements I learned about in my CNA course that can help people to do things more independently. For several of the people who have partial use of one hand only, at mealtimes there are utensils with wider, rubber grips and rubber non-skid mats to go under their plates. No one hurries anyone. This clearly makes people happier than having someone impatiently shovel food in their mouths.

Tango and Noodle Hockey

Today I spent at least 30 rather goofily ecstatic minutes with the morning crew in the main room at Geriabulous, listening to tango, and playing "hockey" with about 20 elderly folks. They were all gathered in a circle, in their seats or wheelchairs, wielding fun noodles, which are normally used in swimming pools, and have been cut off so they can be used as thwacking implements to send beachballs and balloons careening around the room. Man, physical activity is so good for the soul. I had so much fun, and they were gleeful. I also helped a blind person play Bingo for the second time--my first day I sat in-between two blind people to help with Bingo. It's weird to see people who haven't been blind for their whole lives; it's gotta be an incredibly hard thing to adjust to late in life, when other things related to one's independence from and connections to others are already made more difficult as mobility and cognitive speed decrease, and friends die and children move away and get busy.

Friday was my first day with the crew that I'd mistakenly described in my prior post as developmentally disabled. They're not. They're all people who've suffered some sort of brain injury that's left them at least cognitively impaired, some from strokes, some from accidents. That group was incredibly fun. Many were difficult to understand, but none were surly. They were happy and optimistic, introduced themselves and asked for, and remembered, my name. I spent threee hours participating in various activities with them, including assisting some as we walked laps around the downstairs offices, playing an indoor version of frisbee golf that involved bases, and reading creepy Halloween-ish stories. Towards the end of the day, around 5:30 p.m., as everyone was waiting for their rides and leaving in small groups, those of us left had no stories, so someone asked if I knew any. I sang "The Fox" (a version of the lyrics here: http://www.festivarian.com/index.php?topic=2110.0), then they asked if I knew more songs, so I sang about 4 different camp songs from my days as a Girl Scout camper and later counselor, all of which had repeated parts that others could easily pick up and sing along with. Then it was mentioned that this one quiet guy in a wheelchair who's lost a lot of motor control is a Beatles fan, so we all sang "Help" together, then he sang "Yesterday," and it wasn't poignant and sad, it was impressive and inspiring.

Volunteering

A few weeks ago, I interviewed for an underpaid job with a nonprofit organization I thought had a super-cool mission: they provide adult daycare. It's called day health for obvious reasons, for the frail elderly and otherwise disabled, to give respite to the caregivers--usually family members--for such folk so that the caregivers don't get burnt out, and the care recipients can stay out of longterm care facilities as long as possible. Before a bunch of statewide budget cuts, this nonprofit also provided counseling and support for the caregivers. Makes so much sense to me. Also makes sense that the state would be short-sighted enough to think it was a good place to save money in the budget, not realizing how much it saves them on Medicaid in the long run to keep people out of longterm care facilities. Huh.

Anyway, this organization, which I'll call Geriabulous, needed more hours from me than I could work, so they didn't give me the job. But I think they're so great that I decided to volunteer with them, which, as of Monday (5 days ago), I'm doing 9 hours/week. I like the work. It moves slowly, since it involves the frail elderly, which forces me to slow down and practice patience. I haven't worked my afternoon shift yet--afternoons are for the developmentally disabled, and I'm interested to see what that will look like.

Mornings go in chunks: 8:45-9:45 arrival, coffee (decaf), social time; 9:45-10:30 exercise; 10:30-11:30 some sort of activity; 11:30-12 get situated for lunch. Transitions are slow.
While people are there they see nurses, get vaccines for things, see OTs and PTs--it's really great, and a huge contrast to what I saw at the longterm care facility where I did my clinicals. At the LTCF, emphasis was on speed and task-completion: get them fed, changed, into bed, stat. That is, everything was about physical health, pretty much completely neglecting mental and emotional health, which was, of course, detrimental to physical health. The only "recreation" I saw was residents pushed in their wheelchairs to a TV room, where they sat for hours on end, listless. I realize the missions of the two institutions are different, but they both purport to provide "care," and I think the LTCF's care was distinctly lacking in a caring attitude towards the "care" it provided.

Back to Geriabulous: my first morning there I helped a blind woman, Judith, and a Spanish-speaking blind man, Jose, to do the exercises. Sylvia, who leads the exercises, asked that I help them figure out what they should be doing since they can't watch her and mimic. Everyone (about 30 folks) are gathered around in a big circle in the main room of the converted church that houses the nonprofit. To get to their spots, the clients inch along in walkers, push themselves in their wheelchairs--they are _not_ impatiently and efficiently guided into place by workers who think they need to get the next thing done. The first 3/4 of the exercises are done while sitting. Sylvia has them shrug their shoulders, move their arms in different directions, tap their feet forward and sideways... then we pass out weights, between 1 and 5 pounds, letting the clients choose how much they want to use. It's pretty neat, and they are engaged and really participate. The employees and volunteers are there to check on folks who aren't participating, ask them if they need help, and if so, what help. We treat them like adults, and they are clearly pleased we do so. I like this a lot.

I am starting to understand what my developmental psych instructor meant this summer when she called the elderly "invisible"--they are ignored, overlooked, treated like children or annoying pets, they are wished away. I think I might end up doing geriatric nursing as a career. This is a fascinating population to me, and working with the elderly serves as a perpetual reminder to be grateful for my senses and my mobility, and to do what I know I can to maintain them. My social circle is filled with energetic, young (in spirit and health, if not in age), optimistic, beautiful people, and this means I have a narrowed perspective on life. Working with the elderly would allow me to expand my horizons a little as I am helping an under-appreciated population.

advice

Yesterday I finally met with my erstwhile primary care provider, a nurse practitioner who's partly my inspiration for this, and whom I'll call June. She has always seemed to me to be a happy, well-balanced person who enjoys her job, does great work, is responsive, knowledgeable, etc. She's been by far my favorite PCP, and I've changed to a different one only because her clinic about 1/3 as far away from my home as June's is. June was encouraging about nursing in general, and about me being a nurse in particular, but has made me reconsider my original intent of doing an intensive immersive program in which I'd complete my R.N. and M.S.N. within 3 years.

June said that she did this sort of program, worked her tail off, learned tons, but when she finished school felt like she was thrown into work as a practicing clinician with not nearly enough supervised clinical experience behind her. If she had to do it over again, this is definitely not the path she would take. The program I've been looking at requires about 500 clinical hours, and she says this is far too little. She recommends that I become an R.N. and attempt to find work in an E.R. for a year or two to gain experience and exposure, and only later, if I decide it is worthwhile to pursue the M.S.N. and become a nurse practitioner, should I return to school. June said there are definitely E.R. nurses who earn more than she does, but of course as a nurse practitioner, if one is lucky enough to find work, one has far more control over one's hours, interactions with patients, etc. She also said that the intensive programs are _so_ intensive they make it difficult to spend time with family. My daughter is 2. This does not sound so appealing. So, I have some research to do!