Hi again. As I write this, I’m staring out the window of the library, amazed that it finally looks (and feels) like Spring. Yippie! Here I sit, inside, writing about death. Oh well. I’ve got an hour and a half while the kiddos are at a birthday party, and one has to take the time when one can.
So, over the last few weeks, I’ve written about what I love about working in hospice, big and small, and then what the day-to-day challenges are that I find myself dealing with. What that leaves us with is what you’ve probably been wondering about all along: what it’s like to deal with the dead, dying and bereaved on a regular basis.
People often tell me that my job must be a difficult one, and that they certainly couldn’t do it. I don’t know if they could or they couldn’t, and as I’ve written, it’s not as bad as one might think. But, yes, I’ll admit it. Sometimes it is hard. And yes, even depressing.
I think for me, the bigger challenges come in two main forms: my role in the family, or lack thereof; and the effects of being immersed in sadness on a regular basis.
So, I’ve been working in hospice for a little over three years, and I like to think that I’ve grown in that role over time. As such, that first issue no longer plagues me as it once did. That being said, I have lost some sleep over it in the beginning, and I’m guessing that it will happen again sooner or later.
Here’s the thing about being the hospice social worker. Most people who sign up for hospice do so because they want the nursing visits, the equipment, supplies, meds, etc. They may or may not want a social worker. They may not even have any idea what I do. I am always very aware that I am an invited guest in their home. I may want to join them in their journey, to explore their fears and dreams, to guide them to acceptance and a “good death.” But that doesn’t mean that the patient or the family has any desire for me to do that.
I spend a lot of time engaged in the delicate dance of trying to meet the patient where they’re at. I actually got into hospice as a way of gaining enough clinical experience to eventually have a private therapy practice. It took me about 30 seconds on the job to realize that there is a big difference between having someone show up in your office to “talk about their issues” and working in hospice. First of all, I am usually asking to see my clients, not the other way around. Some people really want to talk about what this journey is like. And other people want to do anything but. My job is to try to provide support in whatever way works for them. That might be having deep heart-felt chats about death. Or it might be bringing them a hot fudge sundae and trying to find a working remote so they can watch Judge Judy while we don’t talk about death.
That, in itself, is not that hard for me. The problem is when I, or our team, sees glaring problems, and we are powerless to do anything about it. The nurses and I are “mandated reporters,” so if there is an issue of abuse or self-harm then we are required to report it to the authorities (as long as the person is a child or over 60 or unable to make decisions for themselves. Otherwise, they’re kind of on their own). But there are a lot of gray areas. A lot of times the issues surround what some call “denial.” The hospice team sees the writing on the wall, but the patient and/or the family refuses to/can’t see it, and won’t plan for the future, or they try to pursue futile treatments. Sometimes the hospice team has been forbidden to talk about end of life issues, or use the word “death,” or even “hospice.”
Many times I have felt like these families view me as the angel of death hovering over their shoulders. Some people barely tolerate my somewhat subtle, gentle attempts to get them to prepare for the inevitable. Most of the time I think that the only let me keep coming back because I can be pretty sweet and I smile a lot and occasionally bring a sugar-based product. And sometimes I’m funny. Or maybe they’re just too polite to tell me “no.” (Though, some of them do tell me “no.”)
I don’t mind kind of just hanging out and watching Judge Judy, but when I see people in pain because they refuse to take any medications (or someone refuses to give them any), or when there are young children involved and they have not been adequately prepared, or when I know someone is going to end up calling 911 and try to have a dying person brought back to life and all that is going to happen before they die is that they are going to have their ribs broken, it can be hard to watch. I am a firm believer in patient autonomy, which fits very well with the hospice philosophy. I know that all I can do is meet the patient and her family where they are at, and let them know that they don’t have to go it alone. Where they go on their journey isn’t up to me.
But, still, it can be hard to watch.
So, that’s one challenge. The other big issue is that yes, death can be beautiful, etc., etc. I’ve written about that before. But I will admit, too, that it can also be sad. Very, very sad (the two aren’t mutually exclusive, either). And, over time, I have noticed that sadness creeping into me, slowly seeping into my soul. Some deaths are bigger losses than others–there are a few of my patients that I got to know very well, and I loved them, and now they’re dead. I miss them. Others I barely even met. But death after death after death adds up. And some of them are horribly tragic. Others not so much. But some of the stories that I’ve heard–and they’re not even always my patients–they make me want to cry. Sometimes I do cry.
And so what do I do with this sadness that seems to be in the very air that I breathe? Well, given that I’m writing a blog about this I obviously don’t try to avoid it or pretend it’s not there. I’m pretty comfortable sitting with it. I’ll probably write more about that some other time. I also do yoga and cuddle with my family and all of our many dogs and cats and watch funny TV shows (though my favorite comedian, Louis C.K., has started to make shows that occasionally make me want to cry, too. I’m pretty sure he’s a genius. The Kroll Show is a recent favorite, too, though I’m not sure he’s a genius. He does crack me up, however, despite my best efforts not to like him at all.). Sometimes I eat too much chocolate. Actually, I often eat too much chocolate. And I feel grateful for the life and health that I have. (And then, of course, I get nervous that I may be screwing it all up by eating too much chocolate.)
But yes, it can be depressing and hard. I admit it. Not all of the time, of course. But sometimes.
Now, though, it’s time to go back out into the sunshine and pick up the kids and stop thinking about death for a while. Perhaps I’ll find some chocolate to nibble on, too.
Actually, I’m pretty sure I will.