A client who was dying once said to me, “Every day I feel as if I’m on one of those exercise boards that rest on a ball. Just when I steady the damn thing, it starts moving and I’m struggling again to balance myself. Why don’t people realize that’s what my life has become?”
I’ve heard similar descriptions for thirty years from clients and patients living with chronic and terminal illnesses. Many believed that not only did they have to deal with the effects of their illness, but also the unskillful acts of friends and loved ones who didn’t understand what they were experiencing. And that’s the purpose of this article: to explain it.
There’s a constant interaction of elements that contributes to mood unpredictability in people with chronic and terminal illnesses. From my experience, the most critical ones appear to be a lack of control, loss, physical effects of the illness or medication, and uncertainty.
THE ELEMENTS
Lack of Control
Imagine for a moment that your attitude about living is heavily shaped by people, objects, and activities. It could be an abusive boss, a landlord intent on evicting you, or a car that constantly breaks down. While oppressive, you could act. You could move on to another job, find a new apartment, or use public transportation.
But what if none of these choices resulted in acceptable consequences? If you quit work, you might not find another job in this economy. If you gave up your apartment, you might become homeless. If you couldn’t afford to repair or replace your car and there was no public transportation available, you’d be stuck in your neighborhood. A lack of control would, at the very least, make you disagreeable.
People who live with chronic or terminal illnesses constantly experience a lack of control. If I have an advanced case of CPOD (chronic pulmonary obstructive disease), I know that without proper medication and the constant use of oxygen I’ll die. On one side of the scale is death. On the other, the side effects of the medication, minimal movement, and oxygen. No contest. I’ll choose the medical protocol—not because it’s something I desire—but rather because it’s something more acceptable than the alternative.
Loss
The feeling of losing something that gave your life meaning is profoundly upsetting. And it happens often with chronic and terminal illnesses. Unfortunately, the magnitude of loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit is inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered around knitting, the loss is devastating. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit may disappear, but its memory is constantly present.
Physical Effects
We think with our minds, not our bodies. But we know the relationship between mind and body is strong. In my hospice work, I’ve watched how the physical effects of a tumor changed a calm, peaceful man into a paranoid, aggressive person. While he sometimes understood that the cancer was changing him, during those lucid moments he realized that he had no control over what was happening to him. The ability to think and act rationally can be effected by changes in metabolism and the occurrence of pain. I’ve never had a client or patient who chose to be moody or act irrationally. There always appeared to be a cause. And often it was a physical change.
Uncertainty
Most of us want predictability in our lives. If I buy an apple tomorrow I expect that it will taste similar to the one I ate yesterday. When the traffic light turns green for me, I expect cars to my left and right to stop so I can go through the intersection without being hit. But what if that apple I had yesterday tastes like an onion today or it became optional for anyone facing a red light to wait until it turned green? I could stop eating apples and wait until no cars were present before going through a green light. But what if the unpredictability spread into other areas of my life? My anxiety would become palpable. We may want some uncertainty and a bit of spontaneity to spice up our lives, but it’s predictability that allows us to function sanely on a daily basis.
For many people with chronic or terminal illnesses, predictability may be an illusive state of being. One day, the illness is controlled either by medication or who knows what, the next day it comes on with the power of a sledgehammer. On good days, although there’s jubilation, there’s also the fear that the reprieve will end. On bad days, there’s the fear that it will persist and never relent. Wondering if the pain will ever stop might make it difficult for someone to be supportive when a friend complains how his wife never lets him choose the movie they’re going to.
For someone with a terminal illness, there is certainty, but it’s not desirable: there’s the knowledge that the illness will continually progress. The uncertainty involves the course it will take. People with terminal illnesses often wonder how much pain they will have to endure or the extent of reduced abilities until the body just gives up.
THE INTERACTION
It is difficult to prevent the effects of any one of the above elements from having a negative impact on relationships. Living with all of the elements, and quite often having to deal with them simultaneously, is mind-boggling. Experiencing chronic and terminal illnesses is not a static event. It’s constantly changing as each of the elements takes its turn effecting one’s mind and personality.
Some very wise people maintain that illness doesn’t necessarily have to control the mind. By understanding that pain and suffering aren’t internal, but rather our reaction to events, the effects of chronic and terminal illnesses can be reduced or eliminated. As a Buddhist for most of my adult life, I would like to believe that. But as someone who has been involved in the lives of people who have chronic and terminal illnesses, I know the difficulty in believing in a concept when all you can think about is the loss of something that was critical to your happiness, unrelenting pain, or a future envisioned, but unobtainable.
What I have found that’s comforting to people I serve, is the expression of acceptance and compassion for what they are experiencing. The anger and sarcasm vented in my presence is rarely about something I have done (I certainly hope not!). But rather, it’s the effects of trying to balance that board on top of the ball. As a monk once said to me, “We do the best we can, given the circumstances of our lives.” So when someone you know who has a chronic or terminal illness appears to be cranky, unappreciative, aggressive, or distant, it’s not about you. The balance is probably out-of-wack.
copyright 2010 Stan Goldberg, stangoldbergwriter.com
This article can be reproduced and distributed without charge for any non-commercial project if the source is provided.
Dr. Goldberg,
Thanks for sending us from Advanced PCa list to your article. Well worth reading.
Often I just shake my head. I have recurring PCa, controlled by ADT right now, AND I have some degree of heart disease. I’ve been having interesting discussions with my Internist and my Cardiologist about my “terminal” choices. My internist has come around to agree that no extreme measures should be taken to control the heart disease since it is (usually) a much kinder means of exit. My cardiologist, a much younger man, still wants “to fix me.”
But I’m really going in another direction–death with dignity. Still a relatively new concept but it is catching on. In many states the closest we can come is Hospice, but we need to have access to the control and certainty of real death with dignity (i.e., assisted suicide). That’s my opinion. I’m curious to know what is yours?
Herb S.
Hi Herb,
Please call me Stan. And thanks for the kind words. If you haven’t read it yet, you might want to look at my article The Right To Die: Shoot Me Please. In the article I relate a story where a hospice patient asked me to help him die. Although my immediate answer was “I can’t,” it began a long internal examination for me about assisted suicide. I was pushed further along after having spent years serving patients who had painless deaths and others who were in pain. I finally became convinced of the right for everyone to determine the conditions of his or her death, after I was in excruciating pain from a non-prostate cancer problem.
So the answer to your question is I believe everyone has the right to decide what should happen to their own body, whether that involves pursuing heroic efforts to continue life, refusal of all medication, use of only pain reduction medication, or the active termination of their life. I have little tolerance for anyone who tells another another person how they should die. And I’ve found that those who are most adamant, have rarely served anyone with unending pain, or have experienced it themselves.
That said, I think the choice of assisted suicide is not one that should be made without looking at all the steps that can be taken along the way. Although a death by prostate cancer can be painful (as described by others on the advanced PCa list), it doesn’t necessarily have to be. As a hospice volunteer, I’ve been with fellow prostate cancer patients who had both painless and difficult deaths. In 8 years I’ve never seen any deaths that have been identical. What leads to painful deaths are both emotional issues and physical conditions.
I think it’s important for those of us who are concerned about the quality of our own deaths to deal with both the emotional and physical aspects of dying as soon as possible. It’s been almost 10 years since I was diagnosed with prostate cancer. While I knew from the time of the diagnosis that it would be slowly progressive, I began discussing my death with my family within the first year. They knew what my wishes would be as I approached the end of my life. And I find that the longer I’m alive, the more often I need to affirm with them that my present stable condition is not permanent. I also know what I will have to do to prepare myself.
The phrase you used “death with dignity” means so many things to different people. For one of my hospice patients it meant having his diaper changed hourly so he never felt he was lying for long in his own waste. For another, he couldn’t care how long it was for his diaper to be changed after a bowel movement. For him, “dignity,” was being allowed to watch as many game shows and soap operas as he wanted. The first patient’s definition of dignity involved hygiene, the second, being allowed to make choices. I don’t trust any academic definitions of “death with dignity.” Dignity means something different to each person.
I think it’s tragic that we as a society neither understand nor make adequate use of hospice. On the Advanced PCa list, I see that many of our fellow prostate cancer suffers don’t investigate hospice until they have only a short time left. It may be due to our reluctance as a society to view death as a part of living, or not enough PR about the benefits of hospice, or even the politicization of it (e.g., death panels). Regardless what it is, those of us who are facing death sooner than more healthy people, may needlessly suffer.
Although hospice doesn’t offer assisted suicide (I don’t know whether it does in states where it’s legal), they are masters at reducing pain and creating a psychological milieu where many of the difficult emotional aspects of dying are effectively dealt with. Even though you may not think you’re ready to enter a hospice (usually 6 months or less to live), it’s never too early to contact them. I’ve found, not only for myself, but for others, knowing what the future may hold is more comforting then guessing.
Most pain can be effectively managed through palliative care. Unlike many physicians, palliative care doctors specialize in pain reduction and management. Also, unlike most physicians, they view death as a part of living and not an adversary who must be crushed, regardless of the life their contest leaves us with. Think about four levels of pain reduction.
Emotional Preparation. It’s been my experience that a significant amount of emotional pain people experience before they die has to do with the unfinished aspects of their lives (forgiving, being forgiven, offering thanks, saying goodbye,etc.).
Physical Pain Reduction. Palliative care nurses and physicians as masters at this. One of the purposes of hospice is to manage pain.
Terminal Sedation. Although some hospices don’t offer it, it’s worth asking about. With terminal sedation, patients are rendered unconscious until their disease kills them. Although it’s legal, I’ve only witnessed it twice in 8 years. One was for an ALS patient who, although wasn’t in physical pain, could not psychologically handle the inability to move any muscle. The other was a cancer patient whose pain could not be controlled
Assisted Suicide. I don’t know anyone who has chosen this, and if I did, I doubt if it would be revealed to me. But there are organizations who not only support this choice, but provide information and counseling for those who are contemplating it.
So, this was a rather long answer to a short question. But I’ve found that there rarely are short answers to end of life questions. I hope this helps. Many of more than 100 articles on my website and my books deal with these issues. If there is anything you would feel more comfortable discussing privately, feel free to email me at stan@stangoldberg writer.com
Thank you for your views and opinions on dealing with a relative with a chronic illness.
It is very difficult as a nurse, caregiver,child,spouse or even as a friend to explain, in words, that we all may, at times, fall into some of these “elements”.
Behavioral changes, in my experience, also can be brought on by vast changes in our immediate environment. I believe that when many elderly are under the ” control” of a hierarchy in a nursing home or even a ” good” assisted living, even more anxiety can be produced. The anxiety or loss of power/ control over their environment can be very upsetting to many. Feelings of confusion, anger and many other feelings can be all consuming. It’s important to understand that not all environments work for all people. Some truly never can adjust to the changes or the feeling of being in an institution. Why? As you stated so well..experiencing loss, lack of control and uncertainty.
Though it is stressful to care for a loved one who is congnitively impaired, in my opinion, the added stress of having that loved one ( mother, father,aunt, uncle etc.)in a facility…well,that is yet another article waiting to be written. All of the elements come into play once again.
I have personally experienced some of the elements ( loss of a sister due to an accident) and feelings suggested by your article. This loss continues to have an effect on me today…over 30 years since her fatal accident.
Thank you for sending this article to the alzheimer support group. Knowledge is power.
There is a certain satisfaction in knowing that we, as caregivers, are doing the ” right” thing.
I hope that you consider writing an article on ” caregiver burnout” and or giving us your views on this,as I am sure that you have dealt with this…and we must face this as well.
I agree with you about the need to provide caregivers with support. In my new book, Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers I spend a significant amount of time providing suggestions to prevent burnout. Since the book won’t be available until March of 2012, I’ll be excepting portions of it for my website. I’ll definitely include something on caregiver burnout. Thanks for the suggestion.