The dying process can be an emotional and stressful time for those at the end of life. This emotional stress makes this an especially hard time for their caregivers and loved ones. Humans instinctually know that death is a natural part of the wondrous cycle of life—from birth until natural point of death. The dying process can be a difficult time emotionally and spiritually. In times such as these, it is recommended that the dying and their loved ones seek professional counseling. At this time, consultation with one’s religious community can be part of the healing process.
The dying process may be distressing and unfamiliar. Remember that knowledge empowers the terminally-ill, their caretakers, and loved ones. Speak to healthcare providers to discuss the dying process. Most terminal diseases have specific trajectories—studied paths of physical decline—with specific points along a process. For example, those with advanced cancer will sustain steady or rapid decline. Those with serious chronic diseases, such as heart disease or other chronic conditions, may have highs and lows in their pattern of health with good and bad periods in between, giving the impression of improving or declining health.
The dying process is as unique as it is difficult. The living may observe several or few of these issues as their loved ones experience their remaining time. In many cases, a large part of the grieving process takes place while a loved one is going through their decline toward death. By keeping informed and taking care of oneself during the dying process, the living can manage their loved one’s care and best provide themselves with tools with which to move forward in what can be a traumatic time.
Assemble a Team of Care
The dying process can be managed by the aid of help at home, in a nursing home, at a hospital, or in an advanced residential community. As part of this process, the living loved ones and caregivers should begin thinking of their own self-care while maintaining the health care and legal responsibilities of their loved one. When hospice care is provided, a team of healthcare professionals and family members work with each other to ensure quality end-of-life care.
The dying process should not be managed alone, if one needs help or feels overwhelmed. If possible, two or more caregivers, family members, friends, and loved ones should work together to share the burdens and responsibilities of caregiving. Hospice staff including doctors, nurses, social workers, aides, and home health workers may be a part of the team and will focus on easing pain and suffering. Religious leadership and community support are also vital to the healing process, providing comfort and care to the living during this difficult time spiritually. If available, make use of social workers and counselors. These healthcare professionals will work with the team of the dying and their loved ones to provide emotional support and mental health care.
Caregiving and the Dying Process
Caregivers have a vital role providing advocacy, compassionate care, and comforting support to those engaged in the dying process. However, this role can be emotionally difficult and certainly complex. Remember that being there for one’s loved ones is one of the most comforting acts possible: advocacy and company for the dying. Surrounding oneself with a loving team is so important to providing additional support to the dying and those around the dying. Family, extended family, friends, loved ones, and medical team members work together to focus on the life and comfort of the seriously-ill person.
Remember that the primary role of a caregiver to to act as an advocate for those engaged in dying. As in all other aspects of health, knowledge empowers those who strive to obtain it. Keep a list of questions and concerns so that one can refer to them in times of need. Getting full information from medical professionals and taking notes will help. Knowing everything one can about the dying person’s illness and prognosis, along with the specific pathway of decline based on the specific concern of the dying—will help the living in giving accurate information, which is both comforting and assuring to the dying.
Remember that healthcare teams exist to ease the burden on care taking friends and family members. Every person has so much work they can do or stress they can take before they need a break. Don’t be afraid to verbalize limitations to the medical team or social workers. Remember, none of us are perfect beings, and the dying process is uniquely stressful and very difficult. The caregiver cannot do it along, and should get help and be able to take breaks to focus on their health and hygiene needs. Take full advantage of the medical team and ask them your concerns and questions.
What Should the Living Expect During the Dying Process?
During the end-of-life timeline, a variety of these expectations may occur, or none of these symptoms may be a part of end-of-life care. While these are common concerns, each dying process is unique and may differ from the discussed. However, in many instances, when a loved one is experiencing death, they may feel physical changes such as decreased appetite, urinary or bowel changes, body or temperature changes, emotional and cognitive changes, visual or auditory hallucinations, changes in breathing, and changes in consciousness. Read along to learn more about these processes and focus on how the caregiver can act as ally by keeping informed and asking questions.
Changes in Appetite
As a person enters the dying process, they may lose interest in eating or drinking. Loss of appetite and reduced intake of fluids are normal parts of dying because the vital organs are shutting down and no longer need food or water to keep them functioning. In most cases, a dry mouth can be painful for the ill, so caregivers are recommended to keep ice chips for the dying to suck on, if they can. If their ability to swallow is impaired, smooth cool water or ice over the lips. Caregivers could protect cracked or dry lips with a chapstick or a lip balm.
As a person enters the dying process, control of one’s bodily functions begins to weaken as the body expends its energy on other matters. Two key concerns during this process are constipation and incontinence. These health concerns can be painful for the dying, and distressing to notice with regards to one’s loved ones. During this time, loved ones can keep watch for signs of constipation and be alert for signs of incontinence. Keeping the patient clean and dry helps to avoid rashes, bedsores, or other pains.
The dying person’s bodily functions are constantly in flux. Just as common as difficulty in the bowels, overall physical changes like the shutting-down of organs, body color and temperature, and other concerns become important in keeping a patient calm and feeling cared-for. Try to keep the dying comfortable by keeping their body temperature at an average. Use a damp washcloth to cool a person who feels too hot and cover the person with a sheet or blanket if they feel too cold. Alert the healthcare team if any physiological changes are noticed.
At the end of life, dementia may be a factor in the patient’s health history. Other emotional changes like anger, anxiety, and restlessness may occur. We think this happens due to the process of dying, but may also be caused by reduced oxygen to the brain, side effects of pain medications, and other metabolic changes. Sometimes, the dying fight death, wanting to hold on until they see a person, or until they feel the time is right. Agitated patients may pick at bandages or scars, pulling at IV lines, etc. This is due to medications, metabolic changes, or decreased oxygen to the brain. A person may experience audio/visual hallucinations. Its best to speak calmly and be comforting to the dying at these times. Do not try to correct their perceptions.
To protect the patient against this confusion, the caregivers and healthcare team ca work to always identify themselves by name, by using a gentle voice and responding with other senses like touch. The caregiving team should feel free to ask the doctors for pain management or medications to relieve the agitation. In a hospice situation, pain is a real and constant process. Discuss all medication options with the patient’s doctor to prevent patient pain. Most physical pain can be controlled. No one should die in pain when the means to relieve it are available. All persons have the right to have their pain controlled. Pain is real. Always believe a terminal person who shows pain. Remember that each person is an individual and perceptions of pain differ. Nobody deserves to die in pain.
Cheyne-Stokes breathing is marked by prolonged periods of no breathing (10-45 seconds), followed by deep and more frequent respirations. These respirations are common and result from decreased oxygen supply to the vital organs and can indicate that death is near. Call the medical team to discuss changes in breathing. Do not panic. Touch your loved one comfortingly, and speak to them gently and lovingly.
Saying goodbye is not easy. Yet, it is important for the dying person and their loved ones to communicate their love for one another. Assume everything can be heard and understood, even if the person is not lucid or in a coma. Hearing is often the last sense to go. Don’t speak about the dying person as if they were gone already. Even with all the support and knowledge in the world, the moment of death is not easy. Providing prayers, loving words, and physical support is a strength and gesture of purest love. Sometimes, the patient will wait until they are alone until they pass on.
Humans instinctually know that death is a natural part of the wondrous cycle of life—from birth until natural point of death. The dying process can be a difficult time emotionally and spiritually. Take solace in gaining information, and continue to be there for loved ones.