Grieving Death Following a Long-term Illness

One of the reasons that no two people grieve the same is that the circumstances surrounding a death are never exactly the same. How someone responds to an unexpected tragic death is often completely different than how someone would respond to a death following a long-term illness. While there are threads or stages of grief that might be similar, unique emotions abound with the circumstance of a long-term illness.

Those who grieve a sudden death deal with several special factors which make the grieving process intense and traumatic, including police involvement, legalities, no time for preparation, public scrutiny and sometimes even media interest. The loved ones who experience the death of an individual after a longer illness are often burdened by the perception that a death that is anticipated is somehow easier. Many well-meaning friends perpetuate the myth that such a death requires less time and energy to process.

Unique circumstances make grieving difficult

Although there is a sense of preparation for death that takes place during a prolonged illness, or even through the extended years of life, there are also unique circumstances that make the grieving process just as difficult. Let’s examine a handful of these factors.

  • Extended pain and suffering. Even with the best of care, the additional time of life may dramatically increase the amount and intensity of pain that the loved one must endure. Both the pain itself, and the medicine measured to manage the pain, can have an effect on the quality of life, the ability to make crucial decisions, and the personality of the loved one. Watching the loved one go through such an ordeal is a painful challenge to one’s patience and coping skills.
  • Unusual invasive treatments. During the course of a long illness, many crucial questions must be decided. Should chemotherapy be used? Should radical surgeries be employed? What kinds of additional care will the loved one require? Not only are these decisions critical, the emotional weight of these life-and-death issues can be crippling.
  • Loss of mental and emotional capacities. The loss of memory is often characteristic of the pattern of declining mental prowess. Because the brain stores short- and long-term memory in different places, it is quite possible that the person has good recollection of their youth but cannot remember that they had lunch. Another sign is losing items; the person sets something down and cannot remember where it was placed. The person can become easily confused and disoriented. Often the emotions begin to swing during this time – partially due to the frustration associated with mental impairment, partially because the brain does not set emotional boundaries as clearly as it once did. Behavior may range from fits of rage to child-like gleefulness. The person may become rude and inconsiderate. They may pick unreasonable things to argue about, or even attempt to pick a physical fight. Outbursts of violence against care-givers are not uncommon.
  • Loss of physical abilities and independence. In addition to mental limitations, as the brain deteriorates it ceases to perform as well in circumstances requiring dexterity. The individual will have the inability to wash and dress themselves. Buttons become particularly difficult to maneuver. Co-ordination becomes impaired. The ability to feed oneself may also be hampered or removed. In the final stages, all memory becomes severely affected. Family and long-term friends are no longer recognizable. Incontinence of urine is usual; double incontinence may occur. Difficulty in swallowing may lead to the inability to clear secretions which will bring about chest infections. Resistance to germs is significantly lowered.

The Unique Role of the Care-giver

As the loved one becomes more and more dependent, someone in the family usually begins to assume the role of care-giver. Over a short amount of time, a co-dependent relationship may develop, causing the care-giver to have purpose and worth through caring for the loved one. When death finally occurs, the care-giver may feel a devastating loss because their primary purpose is life is now gone.

Dr. Richard Schulz is a social psychologist at the University of Pittsburgh. He and his team specialize in studying caregivers of Alzheimer’s patients. Their research found that most of these caregivers did remarkably well in adjusting to the death. While most had high levels of depression while they were serving as caregivers, within six months many had returned to normal levels.

For some caregivers, they actually may begin the grieving process while the loved one is still alive. They become accepting of the fact that the person is not going to return to a normal lifestyle. The death may ease the physical and emotional burden connected with daily care. The caregiver can strengthen other friendships and begin to regain a social life. These positive factors often produce feelings of relief and satisfaction.

But studies have shown that about 1 in 5 caregivers experience severe depression and other harsh physical symptoms starting at around six months after the death. Many have positive feelings and a sense of purpose about their care-giving role. Treating the depression before the death played a significant role in the recovery after the death.

Once the loved one has died, a mixture of feelings may rise to the surface, including sadness, relief, regret, peace – and guilt for feeling relief and peace. There may also be a real sense of emptiness. What am I to do now? After spending lengthy time on call 24/7, there suddenly is a void of purpose and pattern in life.

Part of the grieving process, then, becomes a rediscovery of self. Who am I without this loved one? What is my purpose in life, beyond caring for the departed? What things can I now allow myself to enjoy? Allowing time to process the death and adjust to a different life will greatly assist healthy healing through the grieving process.