Australians, like Americans and their other Western counterparts, are living longer but suffering more chronic diseases. While the Australian boy born today can expect to live to 79.9 years and the Australian girl to 84 (the American statistic is similar), the odds are that they will be plagued by chronic illness, which will eventually kill them. Eighty percent of deaths in the United States now occur among persons age 65 years and older (Lyness, 2004).

The majority of deaths occur in the context of chronic illness associated with functional decline. For example, at the time of death, 75 percent are unable to walk, 33 percent are incontinent, and 40 percent are cognitively impaired (Sullivan, 2003). In Australia, about 20 percent have more than one chronic condition (ABC News, 2014), and chronic illness – the leading cause of illness, disability, and death – accounted for 90 percent of all Australian deaths in 2011 (AIHW, 2015).

In this article, we explore some of the major losses which engender grief for those who are chronically or terminally ill. But before we begin our discussion, let’s define what we mean by “chronic”.

What makes an illness chronic?

Sidell (1997) discusses the evolution of common understanding of chronic illness, from the earliest definitions in 1949 to the more contemporary – if disheartening – assessment by Kinzel (1993, in Sidell, 1997) that “Chronic illnesses are, by definition, not curable. Thus, no matter how vigorously we pursue diagnoses, or treatment, the patient will be left with residual, usually progressive disease” (p 6). Chronic illnesses can be incapacitating or not, with sudden or gradual onset, fatal or of no consequence to life span, and either progressive or unchanging. Too, they may manifest differently in individuals according to factors such as age, sex, marital status, pre-illness fitness level, ethnicity, and education.

Generally, the medical profession views something “chronic” as of at least three months’ duration, as opposed to “acute” illness, which is less than that. Given that we rarely speak of being “chronically happy”, it’s also fair to say that to apply the adjective “chronic” is to give a negative connotation (Sidell, 1997). In this article, we acknowledge that not all chronic disease is severe enough to result in impairment, but our discussion will centre on that disease which is, as that level of loss is more prone to be grieved.

Carol and Kevin: A case example to illustrate loss

It was 7:30 on Sunday morning. Carol and Kevin and their nine-year-old twins had just finished the usual morning’s play session in Carol and Kevin’s king-size bed. Kevin got up to get dressed when suddenly something seemed terribly wrong. “Carol,” he said, “I think I’m having a heart attack.” Carol called the ambulance, hustled the still pyjama-clad boys over to a neighbour’s house for the day, and followed the ambulance to the hospital. The emergency department saw Kevin as quickly as possible, but he still lost 70 percent of his left ventricular function to the condition called “Left artery descending”, ominously dubbed by the medical profession as “the widow-maker”. He was not expected to pull through the open-heart surgery that he was deemed too weak to survive, but which several hours later was found to be immediately necessary. The doctor took Carol aside and said, “There is only a 3 percent that he can survive such a massive heart attack. I advise you to go home and get your affairs in order.” Carol, an information technology executive with IBM, suddenly was sole breadwinner, nearly sole carer for their twins, and the wife who spent most of her days by her husband’s bedside.

Incredibly, Kevin survived that first surgery and a number of other procedures, but the ensuing months were a blur of his comings and goings to and from the intensive care unit. The electrical system of his heart failed, and a pacemaker was inserted. He had circulation problems and was cold (despite the weather being quite warm), with extremities turning blue. He had a series of strokes, some larger than others, although he appeared to escape serious mobility or speech problems. Carol wasn’t sure about whether his cognitive function had been affected, as most of the time he was doped up from either anaesthetics or heavy-duty painkillers. He became depressed and was grumpy with the kids, insisting several times that they were “trying to kill” him when involved in ordinary play around the home. Always trim, Kevin quickly lost a lot of weight. Both Carol and Kevin had to face how long, possibly torturous, and uncertain the road to rehabilitation would be.

Even though Kevin is 16 years older than Carol (who is in her mid-forties), he was fit and active before the heart attack, with results from an angiogram several years prior showing as normal. The various specialists eventually acknowledged that, at best, Kevin would now only be able to regain a further 30 percent of his heart function, and that was doubtful. He would now have to live permanently (which in the most positive, but probably unrealistic, scenario meant no more than ten additional years) with major dietary and activity restrictions, and face massive time spent for rehabilitation. When asked how she was holding up in the face of the new developments, Carol – who had previously shown great resilience in dealing with other issues – shook her head and exclaimed, “It’s a BIG, BIG, BIG journey.”

Listing the losses

Loss of health

Regardless of the specific manifestation of the illness or the course it takes, the first adjustment for the chronically ill person, or that person’s caregiver, is that the person will not ever be returning to the pre-illness state of health; thus the experience of loss ensues, which must be grieved. When Bette, a widow whose husband died of a multiple myeloma nearly 15 years after diagnosis, heard about the massive heart attack of Kevin, her first comment was, “The hardest thing about the situation is facing the dark cloud that will hang over their heads from now on” (personal communication to author, 2015; emphasis ours). Carol (Kevin’s wife), in other words, will never again get to enjoy having a healthy husband. Kevin will never get to enjoy the benefits that good health would confer for both personal and family activities, such as playing freely with his young sons. Kevin and Carol have begun the massive adjustment entailed in this change of perspective, but it is not easy; there have been many ups and downs in this regard over the two months of his convalescence, and this situation is bound to go on for some time.

Loss of control

The moment he began collapsing with the heart attack, Kevin lost control of his life. Regardless of which chronic illness a person has, the sense of loss of control is pervasive. In order to survive, the afflicted individual must subject him/herself to endless medical procedures, limitations on activity, and, usually, dietary restrictions. The endless round of such invasion in one’s life typically engenders a sense of powerlessness which, if it continues unrestrained, leads to a cycle of low self-esteem, depression and hopelessness (Miller, 1983).

Loss of independence and fear of being a burden

With loss of control, comes the loss of independence, either real or perceived; either way it is difficult, if not devastating: for both the chronically ill person and also the person’s caregiver(s). The necessary changes in lifestyle are sometimes overwhelming. Continuing with the example of chronic cardiac illness, for example, we can note that the person may have been smoking, drinking copious amounts of alcohol, and eating a lot of meat. He or she may not have had either the time or inclination to exercise, but – post-heart attack – survival is likely to mandate a change in all of that. Those with cancer may require treatments which make it impossible to work concurrently. Individuals with sudden mobility issues as a result of a stroke suddenly find that they not only cannot drive to the grocery store – or anywhere, for that matter – but they also need help getting in and out of the wheelchair to get into the caregiver’s car to get to the shops. The loss of independence engenders in many people a concomitant fear of being a burden on those to whom they now look for help to accomplish simple daily tasks.

Loss of sense of self

Such encounters with our human limitation and finitude require major adjustment in personal identity (Sidell, 1997). Again, this is true for both the ill person and also the family members and caregivers. In the case of Carol and Kevin, for example, Carol could always ignore the fact of Kevin’s additional 16 years of age because he was young-looking, exceedingly fit, and seemingly healthy; he possessed very high energy levels. An entrepreneur, he was the epitome of independence. Now, both must confront his ultimate human limitation; he is not well, he is not particularly young (compared to the other three members of the family he created with Carol), and he cannot do many things independently of help. In short, both Carol and Kevin are forced to re-assess their sense of who Kevin is; that sort of review, claims Barnard (1984), must incorporate acknowledgement of impairment, imperfection, and constraint: all significant losses for which we must grieve.

Loss of certainty

A significant loss for which chronically ill persons must grieve is that of certainty. While admittedly, there are no guarantees in life, most of us nevertheless assume, in the absence of challenging experiences to the contrary, that we can go on as we always have been. If one has not been familiar with the medical system before the illness, introduction to it in the context of crisis is, at best, strange and disquieting; more often it is utterly overwhelming. Think of it: there is new language to master, along with generally huge amounts of information about the illness to absorb; there are relentless and inconvenient schedules, procedures, and interactions to deal with; and beneath all the medical drama there is the macabre ostinato silently pounding into the unwell person’s brain: “I might die; I might die; I might die. . . .”

Peter Ubel (2006), in his book on resilience, writes eloquently about how the uncertainty principle operates to reduce resilience. He offers two poignant examples. In World War II, London got bombed pretty much every night. Its residents got used to going to the shelters when the bombs would begin raining down. The people in the British countryside surrounding London only got bombed occasionally. Now, logically, getting bombed all the time ought to be a worse experience than being bombed only some of the time, but medical people began to notice over time that it was the people in the countryside who were developing most of the ulcers and digestive problems. The explanation was found in the uncertainty principle: we can put up with a lot more when outcomes are known “for certain” than when we must deal with uncertainty and not knowing if/when a thing will happen. Waiting for the bombs that may or may not come was harder on the British people than merely knowing they were coming and preparing for that.

Ubel’s second example comes from the early days of the spread of the AIDS virus in the eighties. Gay men who suspected they were HIV-positive and went to have the test had to wait six weeks for the results. Many of them commented to their treating physicians that the six weeks of uncertainty about what the results would be were far worse than even a bad result (meaning, that they had the virus). Again, logic would seem to say that the waiting period – where one could still entertain hope – should be better than a bad result known, but the uncertainty principle trumps logic; the men generally felt that, once they knew what the score was, they could begin to deal with it, even if the result meant a probable death sentence (Ubel, 2006).

In the case of both chronically and terminally ill individuals, there is uncertainty in how the illness will take its course, in what symptoms and limitations they will face, in how their lives and relationships will change, and mostly, in when they will die. Possible reactions to chronic illness are infinite and not easily predictable. As Hymovich & Hagopian (1992) noted, “Because chronic conditions affect every aspect of being (physical, emotional, social, financial and spiritual), they pose a threat to everything vital to the person” (p 3). Kevin and Carol live from day to day in the throes of colossal uncertainty.

Loss of relationship through stigma, isolation, and/or abandonment

Individuals who have enjoyed some status in the world and those who have had satisfying intimate relationships face further loss; there is significant stigma associated with most, if not all, chronic illness. Many terminally ill people have commented on how their friends distanced themselves post-diagnosis. Some realised that this was because their friends suddenly did not know what to say to them, but they still felt abandoned and isolated. A patient with chronic illness in a close intimate relationship may have to deal with emotional ambivalence or withdrawal on the part of the partner (Sidell, 1997). Lapham & Ehrhart (1986) cite the increased depression, anxiety, and alienation that results from suddenly feeling stigmatised or abandoned. They go so far as to ask whether those who have been in a healthy, intimate relationship will be able to have the same level of intimacy once one of the partners is chronically ill.

Family members of a chronically or terminally person must grieve the loss of traits or activities of the ill person, who is no longer “the same” (Rolland, 1994). The ill person may particularly struggle with this loss, because family members are likely to deny that anything is different for them, and doctors often give lip service to optimism, thus rendering the ill person’s grief a disenfranchised one (Rolland, 1994).

Nowhere is grief more palpable than in the anticipatory grief processes related to Alzheimer’s disease. Here the stigmatisation is directly disease-related (how many family members, for example, have made black-humour jokes about their elderly, demented, and incontinent relative?). With Alzheimer’s disease, there are multiple losses; perhaps the largest one is the psychosocial death of the unwell person (Walker, Pomeroy, McNeil, & Franklin, 1994); the individual is “here but not here”, engendering what is called an ambiguous loss.

Loss of physical assets and resources

Beyond these considerable losses, the chronically and terminally ill must grieve for losses sheerly on a physical level. Totally apart from, say, the significant loss of mobility (which we have already mentioned, above, in relation to loss of independence) and loss of control (affecting not only mobility, but also personal care activities such as bathing, toileting, and cooking, and daily activities such as banking and shopping), there are issues of control as that relates to aspects of bodily and facial control. A stroke victim, for instance, may not only lose control of some parts of the body, but also, may experience the humiliation and loss of dignity associated with facial disfigurement if the muscles damaged are facial ones. Cancer patients lose their hair. Other illnesses may cause a loss of language or the ability to speak. Diabetes patients at the deep end of the disease may not only lose limbs to amputation, but also eyesight. The list goes on. Each loss must be grieved, but in the context of multiple losses, there is not always the capacity to grieve each individual loss as it is occurring.

Physical illness, generally, induces a more aged appearance, so the loss of youthfulness must also be grieved. Loss of capacity to control bodily movements may also engender a substantial loss of perceived relationship and capacity for comfort through touch as when, for example, seriously ill persons can no longer cuddle partners, children, or grandchildren. Even younger chronically or terminally ill individuals may need to face the loss of comfort and pleasure previously gained from sexual relations if, due to illness, sex is no longer possible. Again, the illness does not dictate the ill person’s response, but it does mandate a re-assessment of identity, as unwell individuals struggle to answer questions such as: “Who am I if, rather than serving others, I must now receive care from them?” “What is my contribution to my world if I can neither see nor walk in order to work in it?”

This article was adapted from the upcoming Mental Health Academy’s CPD course “Loss and Grief from Chronic and Terminal Illness”.

References

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