Tuesday

Tuesday was the only day I went in to my main place this week. I spent a lot of time sitting with a couple of patients. These two have conditions - permanent and genetic, that require treatment similar to that undergone by cancer patients, though they are not cancer. Thus these two end up on our floor. One is young and has dealt with her problem on and off throughout her life (PT A). Currently, she's experiencing a particularly long "crisis" proving stubborn to treatment. Otherwise, she's in fairly good shape. Among her problems is pain in her joints just one of the many possible complications from her condition. She's very personable and chatty, clearly animated and intelligent, and thus lonely and bored. She's part of a large family who visit frequently, but even with that, in a hospital one always ends up spending large chunks of time lacking in company. She asked for drawing and coloring materials, which I got from one of the social workers. We didn't get around to actually producing any art, instead we talked about stuff, family, life. What she did, where she lived, her family. My family, where we've lived. She was somewhat in pain, but totally ambulatory - in so far as one can be with an IV. Despite her discomfort and uncertainty as to how long this crisis would last, she was in very good spirits.

Now I know more about her condition, and the long-term prognosis, primarily a severely shortened life-span, her cheerful disposition is a lesson indeed. As is her determination to complete her Bachelors, progress on which has been curtailed by dealing with her condition. She talked about where she'd wanted to study, the same place her mother studied. This didn't work out, but she did start at a good, local institution and made progress toward her degree. She really wants to get back to it and complete it.

Her fellow-floormate is an older lady who, while burdened with a similarly unfortunate and genetically predetermined burden it is one that did not afflict her until much later in life (PT G). She's only experienced it for a year or so, but it's made rapid progress. She's in the position of having to come to terms with possibly having to rethink her entire life-style. Until fairly recently she was able to go about her daily life - a leisurely retired existence, while making some accommodations to this newly present discomfort in her body. However, her current predicament suggests that this may no longer be the case. She has already handed her beloved cat over to her best friend; this is very sad, since he was great company for her. She was no longer able to take care of him, since she can't open cans or shop like she used to. Her arms and hands are somewhat weak - I open packages for her on her meal tray, and while she was able to feed herself and cut up her own food, her dining was slow. She was talking at length at the same time, to be fair, and if I'd not been there for her to talk to, she'd have been somewhat quicker, though I doubt much. I think her weakness is largely due to not having eaten properly for a while and not being able to sleep. Her condition means she's at severe danger from bruising and bleeding from the slightest knock, and even spontaneously in fact. With this in your life it means you've got to be really careful about everything you do. Anything could cause a horrendous health problem. The poor lady had also just had eye surgery that will take several weeks to resolve itself. Then she'll see better; in the meantime though, it means she can't see out of one eye. This was also impacting on her eating speed since the bad eye was on the same side as her tray table where her lunch was. She didn't want me to move the table since that'd be on the wrong side for her right hand.

She had been in pain in her back and down both legs. She'd been trying to deal with it at home, but her OTC options are limited due to anything aspirin-related being off the list. This had been going on for a couple of days or so, during which she'd had a minor fall on one knee. She'd gone to her local ER and was sent home with pain-killers, well, a prescription for some at any rate, but one which she couldn't fill due to her pain and condition. Meanwhile, her injured knee had produced an alarming amount of bruising down the bottom half of that leg, with a "slipper" of bruising along the bottom of her foot, just above the sole. This looked rather alarming to me when I first encountered her, but then she explained why she was there and that it really had nothing to do with this dramatic bruising.

She told me what she'd been doing in her life. She'd worked in finance, and continued to work full-time to the last possible moment she could until retirement. Thus she ensured receipt of the best pension possible. She'd been retired for around a couple of years and had been enjoying pottering around her house with her cat, watching TV, and generally taking it easy. She'd had no grand travel plans and such, as many do when thinking of retirement, which, as she said, has proved fortunate given her current health situation. She'd been part of a drug therapy study from which she was removed when the drugs no longer worked - they'd provided a brief improvement, but this was not to last. She had then been undergoing periodic transfusions, which became more frequent, and were now weekly. And now she was experiencing this current crisis, which was indicating that her condition had exacerbated.

Sickle-cell and MDS: long-term prognosis for either of these is not great.

Another patient I'd been spending some time with, who'd been there for quite a while was not on the floor (PT AH). This lady had been visibly deteriorating and had been recently almost constantly asleep. I asked where she was and was told that she'd passed away Saturday night. This was expected, unlike the fellow who'd died the previous Monday morning. He'd seemed in fairly good shape, given the circumstances.

Around five patients that I've had some contact with, some brief, some lengthy interactions, conversations, have died since I started on this floor. It's proved a wonderful opportunity, prompt perhaps, to ponder various of life's questions but also chiefly one's role in the room with the patient. Constantly one remembers that it's nothing personal for you, that who you are is irrelevant, it's about being available for them. This can mean just being there, as a comforting presence, providing a foil for light, distracting conversation, or a sounding board for life-style readjustment, amongst many other things.

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.