Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
It's about Ethics, Isn't It?
I've been "away" from following Palliative Care Grand Rounds (the link is to its latest edition which is excellent, as usual) for a long time; just as I've been "away" from just about everything with which I was in touch prior to my mother's death. Lately, though, I've been stumbling back, which, I guess, is obvious in my sudden, recent interest in posting again. As I perused this month's edition of PCGR I was introduced to the website Death Club for Cuties: Caring for patients and families at the end of life. The post featured in this month's PCGR was an abstract for a presentation about, to quote: "Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers." Interesting subject. Once I finished that post, though, I was drawn to this blogger's most recent, linked here: My First E(nd of) L(ife) N(ursing) E(ducation C(onsortium) Presentation. Don't let the dry title discourage you. The post is a presentation he gave to the Consortium about ethics, particularly medical practice ethics at the End of Life (often abbreviated "EOL"). I recommend it to all involved in caregiving for the Ancient and Infirm. Aside from this, though, one part of the post resonated with me as I continue in the wake of watching Tokyo Story, the movie featured in my immediately previous post (to which the movie title, back there, is linked).
Scuttle down in the Death Club for Cuties post just past the graphic of the cover of the book "The Long Winded Lady" by Maeve Brennan. Read the quote lifted from one of her columns (cited in the post). Notice the phrase that Jerry, the blogger who wrote the post, highlights: the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy.
It's true that, in the post about the movie, I leaned toward moral relativism, except at the end. I often do that, on my ethical way to making a moral decision...I think it's one of the standard landmarks for people who make the effort to think their way through to a decision about what is the right action to take. When I read the above Brennan phrase, though, I realized that Ozu was subtly making the same point in his movie. The decisions made by sons Koichi and Keiso and daughter Shige were the easy choices. In one case, Koichi's decision to put off a city tour because he encountered a Sunday emergency involving one of his patients and, as well, to disallow his wife and sons from going ahead with the tour because no one would be left at home, seems like "the right" decision, especially since Noriko, the daughter-in-law, rescues the tour. It also seems like the "hard" thing to do. Later, Shige's and Koichi's combined decision to pack their parents off to the Atami spa and resort seems clearly wrong, the "easy" thing to do. The catch, though, is that in both cases there are alternatives that aren't considered and alternatives that are connected to decisions made long ago, sometimes by agents only peripheral to the lives of the adult children and of which I was only made aware in the commentary, which gives us this snippet about Japanese life at the time: Koichi is clearly a physician of mediocre status as evidenced by his office being in his home, not being able to afford a nurse and not being in league with other physicians to whom he can refer calls. In addition, there is the obviously long standing decision on the part of all the children, including the "virtuous" daughter-in-law, that it has always been easier not to closely attend to the lives of their parents once they each fledged the nest.
I can't say that I agree that the easy action is always the wrong action. As one develops as a caregiver to an Ancient and/or Infirm One, if one has even an ounce of compassion for one's care recipient, "easy" comes to have multiple meanings. A good case in point is when I decided to allow my mother to be entered into five days of respite care while I prepared for her return home from the hospital after an especially debilitating bout of pneumonia which led to her lung cancer diagnosis. I thought this would make reassembling the house and recuperating, a little, from having literally lived at the hospital while she was there "easier". Even though I visited her frequently over those five days, more frequently than I had intended, my absence in her life was so overwhelming for her that it became debatable, in retrospect, whether putting her in respite care had been a good idea, for her or me. Shortly on its heels, though, another situation cropped up in which it was clear that she needed intense, short term physical therapy in order to regain enough of the strength she lost during her pneumonia (it was judged by both a doctor and a physical therapist that she was capable of regaining this strength) to negotiate being at home. For a variety of reasons having to do with Medicare and hospice regulations, we had to sign her off hospice for a bit and sign her into a Skilled Nursing Facility in order to accomplish this. This episode wasn't pleasant, either, but it was the "right" thing to do, it worked...and it was "hard", on both my mother and me. The "easy" respite episode, though, became "hard" almost immediately after it began. This clears up nothing about which decision was "right"...nor does it take into account the subsequent decisions, in response to her reaction to not being at home, that I made about how to tend to my mother while she was in respite care, all of which made the experience "harder" on me but "easier" on her.
Once someone becomes aware that an Ancient and/or Infirm One needs extra companionship and care, it is impossible to avoid the daily intrusion of ethical dilemmas, all of which, from the very first dilemma regarding who should offer this care, are sticklers. They all involve the consideration of what you, as a caregiver or onlooker, can live with and what it takes to live with your decision. I think a handy rule of thumb is this: If living with your decision involves blocking out anything involving the one you know who needs care, like, for instance, blocking out the loneliness your Ancient or Infirm One experiences because you are not particularly present in her life, blocking out the possibility of medical mistakes being made because you've left medical advocation up to the medical professionals without question, blocking out the day-to-day life of your Ancient One because there doesn't seem to be a way to incorporate it into your own life, well, that's probably the point at which you need to question the decision you've made. I know, this doesn't make it easier. After all, what about the parts of your life that you have to block out on behalf of the needs of your Ancient or Infirm One?
This is where the post gets really interesting. Search the word "compassion " (with a space after it) in the article. It will bring you to the following quote Jerry lifted from "Human Relationships at the End of Life", published in the "Journal of Hospice and Palliative Nursing":
While it may sound simple to suggest that compassion serve as the underlying moral foundation to guide our response to suffering, true compassion actually requires great courage. It involves being open and available to suffer with, instead of recoiling from the suffering experience.Ultimately, Tokyo Story explores the lack of compassion and how "hideously easy", to quote Maeve Brennan, it is to avoid the compassionate response; how easy it is to think you're being compassionate when you're not; how easy it is to think you will always be driven by compassionate urges when life gets complicated; how easy it is to become so confused by life's complications that trying to decide on a compassionate response is quite like feeling around in the dark in an unfamiliar house for a light switch.
We all wish it was easier. But it's not. Read the post. Bookmark it. I think it's always a good idea to remind oneself, every once in awhile, to think ethically and how much compassion figures into making an ethical decision. It's "easy" to neglect to do this...because it's so damned "hard".
Wow. What a post. And what an experience you've had.
I'm very glad that you came to my blog, and that you led me here.
I've added you to my blogroll. I'm also bringing this post to the attention of an undergraduate nursing class that I presented the ethics material to last week. Among other things, your post highlights how the conversation about ethical dilemmas often never really ends.
I'm also going to poke around here some more. See you 'round the innertoobz.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson