Friday, September 2, 2005
For the second time this week...
...I'm having problems with a highly acid stomach. It's been years, almost a decade and a half, since I've had this type of problem. Even when I was going crazy with caretaking and menopause a couple of years ago I wasn't having stomach problems. It's easy enough to handle with OTC stuff and baking soda in water (gag me, but it works) but I know it's a symptom of an underlying emotional reaction. It surprised me tonight because I groveled my way through an apology to my mother and The Little Girl for my behavior last night. I even told my mother why I felt so terribly bad about it; that it echoed Dad's worst behavior when he was drunk.
I thought about it today and realized that we are also coming up on my two favorite seasons, fall and winter, which, when I used to live alone were also my most productive seasons. Whether they've been so since I've been caring for my mother, well, I'm not sure about this. What I do know is that last year, while very productive, I also "went on vacation" for almost three months, ignoring the holidays, not badgering my mother and thus letting her do pretty much as she pleased, which was fine with her but which also meant I didn't get her moving much and didn't shake her out of her usual cold weather sleeping binge. I still harbor very uncomfortable memories about that period. At the same time, though, I can feel those same desires creeping up on me again. Knowing me, there's a good chance I'll give into them, yet I can feel a part of me fighting the urge because of the guilt I continue to retain from doing this last year. As well, that "ashing over" feeling is now hitting me pretty frequently. I think it's because I feel the peculiar pull these two seasons have for me while simultaneously knowing that any extra time I put into my own stuff also means time and attention (although not my physical presence) stolen from my mother. It has also occurred to me that maybe she looks forward to these seasons precisely because I don't badger her to move and I don't tend to launch into "if you don't use it you lose it" lectures.
I need to calm myself, though, get a grip. The last thing I need or want is stomach problems. They're such a fucking pain in the gut.
I ordered some books today that I'm hoping will help me gain some perspective on my mother's final years, even if her death is still well below the horizon, which I suspect it is. The books (quotes about books taken from Amazon) are:
I thought about it today and realized that we are also coming up on my two favorite seasons, fall and winter, which, when I used to live alone were also my most productive seasons. Whether they've been so since I've been caring for my mother, well, I'm not sure about this. What I do know is that last year, while very productive, I also "went on vacation" for almost three months, ignoring the holidays, not badgering my mother and thus letting her do pretty much as she pleased, which was fine with her but which also meant I didn't get her moving much and didn't shake her out of her usual cold weather sleeping binge. I still harbor very uncomfortable memories about that period. At the same time, though, I can feel those same desires creeping up on me again. Knowing me, there's a good chance I'll give into them, yet I can feel a part of me fighting the urge because of the guilt I continue to retain from doing this last year. As well, that "ashing over" feeling is now hitting me pretty frequently. I think it's because I feel the peculiar pull these two seasons have for me while simultaneously knowing that any extra time I put into my own stuff also means time and attention (although not my physical presence) stolen from my mother. It has also occurred to me that maybe she looks forward to these seasons precisely because I don't badger her to move and I don't tend to launch into "if you don't use it you lose it" lectures.
I need to calm myself, though, get a grip. The last thing I need or want is stomach problems. They're such a fucking pain in the gut.
I ordered some books today that I'm hoping will help me gain some perspective on my mother's final years, even if her death is still well below the horizon, which I suspect it is. The books (quotes about books taken from Amazon) are:
- How We Die by Sherwin B. Nuland
Drawing upon his own broad experience and the characteristics of the six most common death-causing diseases, Nuland examines what death means to the doctor, patient, nurse, administrator, and family. Thought provoking and humane, his is not the usual syrup-and-generality approach to this well-worn topic. Fundamental to it are Nuland's experiences with the deaths of his aunt, his older brother, and a longtime patient. With each of these deaths, he made what he now sees as mistakes of denial, false hope, and refusal to abide by a patient's wishes. Disease, not death, is the real enemy, he reminds us, despite the facts that most deaths are unpleasant, painful, or agonized, and to argue otherwise is to plaster over the truth. The doctor, Nuland stresses, should instill in dying patients the hope not for a miraculous cure but for the dignity and high quality of the remainder of their lives as well as of what they have meant--and will continue to mean--to family, friends, and colleagues. Nuland also has strong feelings about suicide and "assisted death": the doctor should be prepared psychologically and practically to help the longtime patient slip off the scene in relative comfort. --courtesy of Booklist
This is a book I've been wanting to read for years but to which I never got around. I figure, this is a good time. - Sick to Death and Not Going to Take It Anymore: Reforming Health Care for the Last Years of Life (California/Milbank Books on Health and the Public, 10) by Joanne Lynn:
Just a few generations ago, serious illness, like hazardous weather, arrived with little warning, and people either lived through it or died. In this important, convincing, and long-overdue call for health care reform, Joanne Lynn demonstrates that our current health system, like our concepts of health and disease, developed at a time when life was mostly short, serious illnesses and disabilities were common at every age, and dying was quick. Today, most Americans live a long life, with the disabilities and discomforts of progressive chronic illness appearing only during the final chapters of their life stories. Sick to Death and Not Going to Take It Anymore! maintains that health care and community services are not set up to meet the needs of the large number of people who face a prolonged period of progressive illness and disability before death. Lynn offers what she calls an "owner's manual for the health care system," which lays out facts, concepts, strategies, and action plans for genuine reform and gives the reader new ways to interpret information creatively, imagine innovative possibilities, and take steps to implement them.
I read about this book in a recent New York Times Sunday Magazine article on Dying in America which was primarily about people dying of old age and chronic disease. The book sounded like a very complete manual for what I've been trying to do within the medical industrial complex on my mother's behalf. I figured I would find a book concentrating on struggles similar to mine valuable. - Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley
Impressive insights into the experience of dying, offered by two hospice nurses with a gift for listening. The "final gifts" of the title are the comfort and enlightenment offered by the dying to those attending them, and in return, the peace and reassurance offered to the dying by those who hear their needs. Callanan and Kelley describe a phenomenon they term "Nearing Death Awareness"--which resembles somewhat the near-death experience sometimes reported by individuals revived after being clinically dead. Nearing Death Awareness, however, develops slowly, and the dying person seemingly drifts for a time between two worlds. Attempts by the dying to communicate about this awareness, often expressed in symbolic language or gestures, may be misunderstood by those around them, who dismiss the expressions as mere "confusion." According to the authors, dying messages fall into two categories: descriptions of what they are experiencing (such as the places they see, the presence of others no longer alive, or their knowledge of when death will occur) and requests for what the dying need for a peaceful death (a reconciliation, for instance, or the removal of some barrier to departure). To illustrate, Callanan and Kelley include numerous examples of Nearing Death Awareness from their years of caring for the dying. And they offer practical advice not only to involved family members but also to professional caregivers on how to recognize, understand, and respond to a dying person's messages. No lugubriousness or false cheerfulness here, but acute observations and astute advice on a difficult topic. --courtesy of Kirkus Review
This book was recommended to me a little over a year ago by my favorite nurse at the skilled nursing facility wherein Mom spent two weeks last August. Although the nurse knew when she recommended it and I know now that Mom isn't close to this time yet, every day she comes a bit closer and it can't hurt for me to be informed, in case she experiences an extended dying time.