Pride Run

I should mention something about our weekend. Clearly much time was spent packing things in boxes, sorting, throwing things out, but we did some fun stuff too. I ran a race! I participated in the Pride Run on Saturday, finally running with a friend (also moving, but far away). I managed to run the 5 miles non-stop in around 52 minutes. I was very happy with that time, and am now inspired to run further and participate in more races. However, despite that, I've not been able to run since Saturday. Too tired to get up in the morning and get in the pre-breakfast run I was managing until the end of last week. Maybe once we're all moved into the new place and the weather cools off (which it's supposed to do).

Moving house

It's been a while since my last note here. We are in the process of moving home and so I am both tired and distracted. Today I was so tired at my main place, I was almost falling asleep on my feet. There's a heat wave so it's hot at night. I wake at 3 am and take another 1 1/2 hours to get back to sleep. I set my alarm for 5.50 am so I can get up for a run before breakfast. Well, this morning, I just could not get up, I was so tired. I decided I'd be better off getting another hour's sleep.
Anyway, we were expecting "The Man with the Van" to show up today and schlepp our boxed up stuff from our present apartment to our new one nine blocks north. He did not come; he had called Chuck yesterday evening to confirm and Chuck had not got his message or had not called back early enough to constitute confirmation. Well, he'll come tomorrow instead when the Whalens guys come - a minor circus, but what choice do we have.
To get back to the main point. Today I had a great day in some ways. One of the two nurses on my floor who suggested my "shadowing" them was in today. So I got to see some interesting procedures. This nurse is great: she tells me if she has something "interesting" to do and then takes me through it step by step explaining what she's doing (Nurse C). God love her for her patience. I watched her (and vaguely helped) redoing a Foley catheter and then with a new IV insertion. With the Foley, I also saw something that, without care, would head for a pressure sore. This lady seems to understand the need to keep off it and instead lie on her side; hopefully we'll avoid her neighbor's situation.
Her neighbor I have previously mentioned. She's visibly deteriorated since I started (PT AH). She sleeps constantly now but will briefly wake if you talk to her. I spoke to her on a couple of occasions today and gently rubbed her arm. She likes that. It puts a smile on her face. I spoke to her briefly. She's so clearly so sick. She's not eating really and thus is very malnourished. She has pressure sores at her sacrum but she won't be in any position other than on her back. It's my understanding that she was a very VERY difficult person before, but her inexorable slide toward the beyond has rendered her passive and calm.
Last week, I would pop in and see how she was, I also tried to render some order to her tray table. She was looking for something and in the process of helping her find whatever it was she was after I noticed various belongings on the window sill: a letter produced by her lawyer for a stay of eviction on her apartment, glasses, handbag, expensive make-up, lots of Sharpie markers in assorted colors, a week-old newspaper... random trappings of a faded existence. It was all together a glimpse into a life. There is quite an accumulation of stuff around her on her table, the window sill, a pile on a chair, clearly she's been here for some time. It's astonishing how quickly a person can go downhill. When I first met her, she was talkative (and irritably demanding), could read the paper and would eat solid food. Last week I got her to talk for about an hour about herself. Now she is asleep constantly but will rouse briefly when questioned. She is wasting away.

Meanwhile, I learned yesterday that a nice man I'd spent some time with last week passed away early that morning. He didn't seem to be on the verge of death so that was a surprise. His room was being cleaned; there was a certain very particular smell. Not a pleasant job, but one that must happen on this floor with some regularity. Three people died last week (two of whom I'd actually spoken to or spent time with), no doubt there'll be more this week.

This is my last day for this week at the main place. Today I started out sitting with another patient that I've encountered a few times already. This lady is not well at all and has visibly deteriorated since I started (PT AH). I am told she is dying. She has periods of lucidity that appear like clouds clearing in an overcast sky. Much of the time she is very confused. Since she's confused, and, probably, lonely, she tends to call for the nurse repeatedly having forgotten that she did receive her medications or that she did get her breakfast (which she doesn't usually eat anyway). She will frequently get an idea fixed in her head that someone significant is coming to visit, such as her doctor, which requires "order" around her bed. She is summoning help to tidy her table, her stuff on the window sill, the floor. Of course, there is no one coming. She does not understand that the nurses or myself, nor indeed, the PCAs cannot mop the floor, that that is housekeeping's job for which they have all the equipment and products, not us.

I spent a little more than an hour with her this morning. I got her talking about what she used to do, where she lived. She'd been conservatory trained as a pianist and singer. She used to sing Schubert Liede and similar material, but as a professional she'd sung soul and all kinds of genres. She had an ex-husband, a jewelry designer specializing in pearls and mother-0f-pearl. I joked that she must have lots of pearls and she assured me she did. We then spent some time trying to find a particular watch she had, a famous name. I could not find it, despite rummaging through the drawers in her bedside cabinets, in the tray table, and on the window sill. She also asked me about cars. I said I didn't have one. She asked me, "What's the most famous car you have?". I threw out a few different kinds. Finally, she told me Mercedes-Benz. That was the car she had. She hadn't had one for a long time, then, finally she got one: a Mercedes-Benz 320. A silver one. She seemed extremely proud of it. She then invited me for a drive, assuring me that she "wasn't a Lesbian" but that she'd gladly go out one afternoon. I thanked her and said that it sounded lovely.

We then had a long talk about her phone, which had stopped working (presumably because it had not been paid for). She asked if I had a phone to which I replied that I did, but that I didn't have it with me. Then she wanted to give me her phone number: after I'd found her MetroPCS phone on her tray table and she'd explained that that did not work anymore either. I said, "Well, you could give me your number but the only phone you have that works is this one [the one on her bedside table], and I'm right here! So, it'd be a little silly for me to call you." She agreed, laughing at how everyone would think this terribly funny.

So, we talked a little more, while I tidied her tray table somewhat, throwing out various things, an opened pudding, tissues, packets of pepper, salt, that will never be used. "Finally, order!" she stated. Then I sat with her again. From time to time I put my hand on her arm, gently moving it back and forth. "That feels so good." I was told. Her skin seemed so dry, inspite of the fact that, I'm sure, the PCAs or the nurse rub lotion on it. This is a problem for skin stretched out with the swelling of edema. It all becomes so fragile.

While I was there her nurse for the day came to give her some medications. One really upset her stomach, sort of acid upset not nausea. It took a while for it to start feeling better.

Previously I've been in this room, with this patient and have noticed the trappings, such as they are, of an existence. A letter from a lawyer, notes to staff she'd written herself when she was in a better state than she is now. A newspaper or two. (When I came in to start with, she started asking me about purchasing a paper with some elaborate story about some fundraising effort or something about a building collapsing - something knitted together in her subconscious confounding assorted memories compiled in such a way as to make no real sense).

It is truly interesting and, indeed a profound privilege, to have this glimpse into an existence. Clearly this lady had been stylish and of "good taste" at some point. She has Mont Blanc pens, Dior make-up, her eyebrows tatooed (or pencilled in? I cannot tell), her nails done. A lawyer who produces stays of eviction notices. A mouse for a computer that was in her bag - which I stumbled upon while trying to find that "famous" watch (R & R), another thing she'd wanted me to find.

She told me where she lived. I asked if she had children and she said that she'd been too busy, that there was already so much dealing with herself that they'd not had any. That there was too much sadness in the world. Then, seeming to apologize almost, she explained that usually she is a positive person that she didn't usually dwell on such negativity. I suggested that wasn't there also a lot of good things in the world. Despite agreeing, negativity seemed to have it.

For some reason I had to leave. I don't recall why. I looked in on her later in the day: she was either asleep or gazing at the window, or her nurse was dealing with her. I didn't have the chance to sit with her again. Probably I'll see her next week and ask her more about her career in music, at least, I hope I get to.

Yesterday was a significant day in some ways. Today was a slow day; I had to hustle for things to do. However, I did get to have a conversation with the lady next door to the lady I was writing about before. Fortunately, the lady I wrote about before did go home with her husband which is fabulous. So much nicer to be at home than in the hospital. I had overheard a conversation between her neighbor and a nurse practitioner (NP) regarding some test results. The news had not been good and now this woman was faced with a choice of undergoing arduous therapy one more time or not. Clearly, since they had left the choice to her they - the medics - held out little hope for any therapeutic value for it. Today, she'd pulled her curtain all the way across, obviously indicating a need for privacy. I did get to have a conversation with her. She seemed to be trying to keep her spirits up; I did get the impression she had decided not to go through more, probably unproductive, harsh therapy. She has several people visiting her throughout the day and so it seems like she has lots of support. That, at least, is one good thing.

I also had a really interesting and useful conversation with one of the nurses (Nurse T). She told me that after school you really need to work in a hospital for a year or so, to get that experience, since it's hospital work that's always your back up. She'd worked in a variety of places and is making her way back into hospital work. She mentioned friends of hers who had not had that hospital experience and who were now having trouble getting work.

Yesterday I spent pretty much all the time sitting with the lady I talked about before (PT L). She was scheduled to go home and so spending the time with her seemed appropriate. We briefly talked about how her weekend had been, that her husband had visited with her, but that she hadn't been so good. Then I asked her how long she'd been sick. She told me since when, for several months. Then I asked what she'd done before she was sick. She told me. Then I asked if she'd like to see photos of my children and she indicated that she would. I got my iPod out of my pocket and found some pictures to share with her. She lit up. I told her a little about them, related to the pictures - about my daughter in ballet class, and how she's such a girlie girl ("She's so CUTE!" she kept saying, with a smile on her face) and then about my son and cub scouts, how much he loves that. There was one picture of him, in his full uniform, with a very serious expression on his face. There were also a few pictures of him in his suit (first communion, she particularly liked that, how proud he looked) or in his vest. She noticed how he liked to dress up. It took her away from her illness for a while.

I had been unsure about sharing such things, but clearly it had been the right thing to do. She was so much looking forward to going home. We talked about that; about how much nicer it is to be with your own things, and to sleep in your own bed. In my mind, I could certainly relate to those aspects of her predicament, but did not mention this. I'm so glad I read one of the books I had rented from Chegg for one of my classes, since here I get to actually implement some of the points there. In normal conversation one is always tempted to bring up similar examples from one's own life in response to comments from whomsoever one is in conversation with. In my current role in this place, as the book reminds me, you cannot do that. It is not about you it is all about the person you are being with; they don't need to know about your 36 hour labor, or about living in a sublet and with someone else's stuff, or about the trauma of transatlantic moves, or that time your kid went missing, but briefly, and it was dark and you were terrified. No, now your job is to listen and acknowledge and certainly one should empathize (heaven knows that whatever experiences you have had in your life facilitate that but must remain unmentioned).

It truly is most profound and wonderful, nay privileged, to be able to share with someone who is having to face something - which we all ultimately face, of course, but which few of us are actually called upon to face quite so precipitously.

Will death become her?

I started this blog for myself, in order to express my feelings about my experiences where I am volunteering this summer. Three days I am at a place where there are some extremely sick people, including some people who are dying. I've never been near anyone who was that sick before. It has prompted me to think about nursing, the role of the nurse, the role of anyone who works in such a setting. It really makes you think about the importance, significance of any task, no matter how mundane, one performs in the presence of such a person. It may sound, I don't know, corny, pretentious, whatever... it's hard to express since I myself am not a profoundly spiritual person.

I walked into a room, introduced myself, "My name is ..., I'm a volunteer, is there anything I can help you with, anything I can do?" and the response was "Can you sit with me?". No one had ever asked that before. So, I asked if she, PT L, wanted to talk or just have me sit. She said she didn't want to talk. I asked if I could get a book and was told that was fine. So, I sat with her, and read.

I have to admit, I find it hard to sit still, especially when I have the opportunity to try and see new things in the place I'm at right now. But I sat until she fell asleep. Then I got up and helped the PCAs in various ways, then took a brief lunch break. Came back and sat with her some more. Then, when I had some down time over the next day or so, I sat with her. We talked a little, but mostly I sat and read, just being nearby. I knew what sort of issue she had due to the nature of the floor, but not specifically. Then, I learned that she is dying and from what. This obviously led me to totally reevaluate the significance of my sitting there with her. She's not visited in the daytime (at least, I have not seen anyone visit) since she has no children and her husband is at work. He visits every evening after work.

She doesn't want to be on her own. Now I realize that perhaps it's because she doesn't want to die by herself. I'm imagining that perhaps she's afraid she'll die and no one will realize for several minutes; or perhaps, it's just the process of dying that she fears. All perfectly reasonable, as far as I'm concerned. Also, there are other things that prompt major rethinks (clearly I have had my head in a bucket for years), such as the visit from the priest and taking communion from him and how happy that made her, even if for just a few minutes. Just having the priest there in the room seemed to lighten her aura, her mood immeasurably. I always say when I am leaving and when I will be back. This seems only fair. I was lost for words when she said in response to my telling her that I'd be there for another hour or so, "I guess I have to cherish every moment I have with you then". I had no idea what to say. So, I said nothing. I always say goodbye when I am leaving and always say when I will be back. I hope she's there when I go back next week.

I am certainly thankful for my lovely weekend, filled with a birthday party for a friend's child, running in the park, going for a swim, eating meals with my family, which includes children (thankfully, despite the various frustrations that includes), and sleeping in my own bed, next to my husband.

I almost didn't go in today, dreading the thought of pacing the floor looking for things to do. It was indeed a slow day, but I had a couple of good experiences which made me feel like it was worth my while to go in. One man chatted for a while and gratefully took one of the free papers I'd grabbed armfuls of on my way in. On another floor, one patient's bed had completely stopped working and I grabbed a NA who fixed it. She was grateful for my telling her. Most of the day I was going from room to room, as usual, introducing myself and offering papers and assistance. Patients rarely actually ask for any real assistance, but on the rare occasions that they do, they are so happy for help. I wasn't able to pass on all the papers I'd grabbed this morning, but a number of patients did take some so it was worth grabbing them. Some patients don't have their glasses with them or they have equilibrium problems or, as with one poor fellow today, acute headaches which prevent them from reading.

I'm also learning more about the trade from my occasional chats with nurses. For example, some facilities have fixed shift days, at others your days are different every week. The bedside nurses all do 12 hour shifts. They do three days a week for three weeks, then one week of four days. That way they get to 40 hours a week. The PCAs seem to do 5 days of 7.5 hours. The BA and the clinical manager (RN in charge of managing the whole floor) work M-F, regular hours and they are on salary, not hours.

What have I done so far? So many different tasks, roles: assisting PCAs, RNs, sitting with patients, prowling the floor for things to do. I just want to keep moving, looking for things to do.

The team on the floor are terrific. They all seem to get along so well and work well together. Fortunately, they have welcomed me into the team and somehow I am managing to integrate my abilities into this team. This is such a privilege and a wonderful experience.

I am writing this just before I head off to work where I am once a week. This experience isn't working out so well. It seems like they are not clear on what I can and can't do and I have a hard time finding stuff to do for five hours. Thus, I am not looking forward to this so much.

More later...