Bereavement: starts before life ends

medical decisionsBereavement and the process of dying

Often, the reality of death doesn’t hit home until seeing the physical stages of the body shutting down. This can be upsetting for those watching, but is a normal part of the dying process.There are strategies and treatments to minimize any discomfort and suffering

  • Hands, feet and legs may feel cool or cold to the touch, Fingers, earlobes, lips and nail beds may look bluish or light gray..
  • Blood pressure gradually goes down and heart rate gets faster but weaker.
  • A purplish or blotchy red-blue coloring on knees and/ or feet (mottling) is a sign that death is very near.
  • Because the body no longer needs large amounts of energy and because the digestive system is slowing down, the need for and interest in food (and eventually fluids) gradually lessens.
  • As eating and drinking taper off, the body naturally becomes dehydrated. When this occurs, the dying person becomes sleepier and may be less aware of pain or discomfort. This is a normal part of the dying process and there are ways to keep the person comfortable throughout this time.
  • Fever may or may not occur, but is common nearer to death.
  • Secretions usually thicken and build up in the lungs and/or the back of the throat.
  • Breathing may sound moist, congested – called ‘wet voice’ – or like a rattle.  This may come and go and is rarely bothersome to the dying person closer to the time of death.
  • Progressively deeper and sometimes faster breathing, followed by a gradual decrease that results in a temporary stop in breathing. This is called Cheyne Stokes breathing
  • Restlessness, agitation or delirium – which may be a result of less oxygen to the brain, metabolic changes or physical pain.

From the mouths of the dying

“It is not unusual for a dying person to speak in metaphors about dying, for example speaking about death in terms of travel or a journey, getting to the door, or finding the key. It is not uncommon to see a dying person calling or reaching out to a deceased family member or to a religious figure or speak of visits from or dreams about those who have died before them.  These reports have almost always been comforting to the dying person. Rather than deny these descriptions, or correct these reports, it is important to try to listen and accept what is being said”.

Bereavement and mourning: before, during and after

Bereavement is the period after a loss during which grief is experienced and mourning occurs. The time spent in a period of bereavement depends on how attached the person was to the person who died, and how much time was spent anticipating the loss.

Advances in modern medicine mean dying and death have undergone a shift: a life-threatening disease doesn’t always mean an immediate ‘death sentence’.  We survive months or even years before dying – even from  a terminal illness. While it means more time with our loved ones, prolonged dying and death can also prolong emotional pain, exhaust caregivers and cause family issues, baggage, pattersn and rifts to take front and center stage.  

In their book, Saying Goodbye: How Families can Find Renewal Through Loss Dr Joseph Nowinski and Barbara Okun summarize the five stages of grief:

  • Crisis. Family grief begins when the family learns that a loved one has a terminal disease. Feelings of anxiety, anger, confusion, and fear may arise. The equilibrium of the family has been disrupted.
  • Unity. The reality of impending death forces family members to put even longstanding resentments or grudges on hold to pull together to care for the dying loved one.
  • Upheaval. In a protracted illness, the unity experienced starts to fade, and issues put off to deal with later eventually rear their head, with guilt, anger, and resentment starting to emerge. It is most important, at this stage that members of the family communicate effectively with each other and with other loved ones.
  • Resolution. Upheaval created by the illness subsides. The protracted nature of contemporary grief presents families now with an opportunity to resolve any long-standing issues and to redefine each person’s role in the family.
  • Renewal. The final stage of grief begins at the funeral and expresses itself through the celebration of the life of the now-deceased family member. The interconnected system of individuals that make up the family, through acceptance of change, rather than its resistance, is given the opportunity to become stronger, more resilient and thus find its new equilibrium.

Mourning: rituals, customs and culture

Mourning is the process by which people adjust to a loss and often entails cultural customs and rituals. Dr Niamh van Meines – a Nurse Practitioner and Hospice & Palliative Care Consultant– tells of her experiences with culture and ritual at life’s end:

  • The woman was overwhelmed with grief when she walked into the room and saw her mother silently and peacefully dead in the hospital bed. Her death was expected, but as always, no-one is ever quite ready to let go. She started to wail loudly and speak directly to her deceased mother about the pain she was inflicting by dying. She was compelled to hold her prayer beads and started to dance around the room. Little footsteps, singing and chanting, crying and wailing in a pattern that looked like she was in a trance. Occasionally, she would lay across her deceased mother with her arms outstretched. I approached her gently, touched her lightly on the back, apologized for interrupting her and asked “Are you OK? Is there anything that you need from me?” She stopped the dance, composed herself and answered “No, I’m fine.” She then returned to her trance, dance and chant. Reassured that she was not losing control, I relaxed and supported her. I observed and learned about my own lack of knowledge about different cultures and their rituals at the time of death.Embracing Different Cultures in the Service of Dying

 Interesting reading: Rodger Harding shares his experiences, as a son, how his parents good death helped him through mourning