Most people take on the role of family caregiver without fully knowing what to expect. These responsibilities may last for only a few weeks or may go on for many years. Sadly, the one common variable in these situations is that the aging loved ones we care for will eventually pass away.
Caring for a Senior Who Is Terminally Ill
Some care recipients die unexpectedly while others decline slowly over time. Through close communication with a loved one’s health care team, it may be possible to obtain an estimated life expectancy. However, predicting how much time a patient has left is not an exact science, even if they have been diagnosed with a terminal illness.
Not knowing what to expect or how to handle new symptoms that arise as a senior’s health fails only magnifies the stress and anxiety a family caregiver feels in an already taxing situation. Learning the signs that death is near will help you prepare for this inevitability and ensure that your loved one gets the palliative care they need to manage end-of-life symptoms and remain comfortable.
It is worth noting that hospice care providers are an invaluable source of hands-on help, information, and spiritual and emotional support for individuals who are facing a life-limiting illness. They also provide ample guidance to caregivers and other family members both during the dying process and after death.
End-of-Life Symptoms in Elderly Patients
Dying tends to happen in “stages.” Certain signs and symptoms can help health care providers and family caregivers determine how close a patient is to death. Common end-of-life indicators are explained below along with suggestions on how to address these changes.
Drowsiness, Increased Sleep and/or Unresponsiveness
When the body is shutting down, symptoms like fatigue are common. If possible, try to plan visits and activities for times when your loved one is most alert. It is important to speak directly to them and talk as if they can hear, even if they are not responsive. Patients often lose consciousness and may lapse into a comatose state at the end of life, but most are still able to hear even after they can no longer speak. Do not attempt to shake or rouse your loved one if they are unresponsive.
Confusion, Restlessness, Agitation, Delusions and/or Hallucinations
Your loved one may be confused about the time, their surroundings and/or the identity of their family members. This can cause them to become restless and anxious. Hallucinations, especially of people who passed away long ago, may also occur in some patients. Gently remind them of the time, date and people who are in the room with them.
Sometimes patients may have delusions that people are trying to hurt them or that they are capable of doing things that are not plausible. If your loved one becomes agitated, do not attempt to restrain or correct them. Instead, be calm and reassuring and try to remove any factors that may have triggered this reaction. If anxiety increases, contact their health care team for guidance. Medication may help minimize their confusion and agitation.
Decreased Socialization and Withdrawal
This can be caused by decreased blood flow and oxygen to the brain and mental preparation for death. Speak to your loved one directly and let them know you are there for them. They may be aware and able to hear but increasingly unable to respond. Professionals advise that giving permission for a loved one to “let go” may be helpful. Reassure them that their life was meaningful and that their family will be okay and well-cared for in their absence.
Reduced Appetite and/or Thirst
At the end of life, the body must conserve energy, so certain processes like digestion will slow and eventually stop. This is a difficult symptom for many family caregivers to accept because cooking and serving favorite foods is a common way of showing love for and providing comfort to ill loved ones.
Rather than sticking to normal mealtimes or pushing foods and liquids, allow your loved one to choose if and when they eat or drink. Ice chips and sips of water or juice may be refreshing if they are still able to swallow safely. Make sure to keep their mouth and lips moist with products like glycerin swabs and lip balm.
Loss of Bladder or Bowel Control
Keep your loved one as clean, dry and comfortable as possible. Place disposable pads on the bed beneath them and remove incontinence briefs and pads as soon as they become soiled. Their health care team will instruct you on the best incontinence care products and safest changing techniques to use.
Darkened Urine and Decreased Urination
At the end of life, urine output may decrease significantly or stop altogether. These symptoms are caused by reduced fluid intake and kidney function. In some cases, a catheter may be appropriate for preventing urinary retention, obstruction and skin breakdown, which can be very uncomfortable and trigger agitation. A member of your loved one’s health care team can provide instructions on catheter care if catheterization is recommended.
Cool and/or Discolored Skin
Also known as mottling, your loved one’s skin may become darker and grayish or bluish in color, especially on the underside of the body and the extremities. This is caused by decreased circulation. Although their skin may be cool to the touch, they may not actually feel cold. Blankets can be used for warmth, but avoid using electric blankets or heating pads, which can cause burns.
Irregular Breathing Patterns and Sounds
Changes in breathing at the end of life are very common, especially for patients with lung disease. Your loved one’s breathing may become shallow and alternate between rapid and slow. Changes in heart rate can accompany altered breathing patterns.
Sometimes breathing is characterized by rattling or gurgling sounds—often referred to as the “death rattle.” Noisy breathing is caused by the relaxation of muscles in the throat and the accumulation of secretions in the upper respiratory tract. Although labored breathing can sound very distressing for attending family members, these sounds usually do not cause discomfort for the patient.
A patient may be able to breathe easier when sitting up at a 45-degree angle with increased support or when lying on their side with pillows placed beneath their head and behind their back. Oxygen therapy may benefit some patients. If your loved one is able to swallow, ice chips may also help. Placing a cool mist humidifier in their room may provide added comfort as well.
Changes in Vision
Your loved one may turn their head directly toward light sources due to a decrease in eyesight. Try to leave soft, indirect lights on in their room to minimize glare and help them see as clearly as possible. Some patients may stare and blink less, which can lead to dry eyes. Artificial tears can provide some comfort if their eyes are irritated.
Increased Difficulty Controlling Pain
It is important to provide pain medications as prescribed by your loved one’s health care team. Be sure to contact their doctor if the prescribed dosage does not seem effective or if side effects become troublesome. Alternative pain management methods, such as massage, music therapy (also called music thanatology) and relaxation techniques, may be used in conjunction with pharmaceuticals to minimize anxiety and discomfort.
Changes in Muscle Function
Sudden, involuntary muscle movements called myoclonic jerks and the loss of reflexes in the legs and arms are additional signs that death is near. Myoclonus is not painful, but the abrupt onset of these uncontrollable muscle spasms can be distressing. Medication may be given to minimize jerking or twitching at the end of life and improve sleep quality.
End-of-Life Signs and Palliative Care Are Unique to Each Patient
It is important to remember that each patient’s goals for end-of-life care and their dying experience are unique. The above physiological and psychological changes may present very obviously, they may be barely noticeable or they may be completely absent. The presence of one or more of these signs does not necessarily indicate impending death, but it is crucial to notify a member of your loved one’s health care team if you notice even subtle changes in their condition. A medical professional can give you more personalized information about what these changes may mean, how your loved one’s care plan might need to be adjusted, and what to expect going forward.
Sources: Signs of Approaching Death (https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death); Signs of Impending Death (https://palliative.stanford.edu/transition-to-death/signs-of-impending-death/); Early and late signs that precede dying among older persons in nursing homes: the multidisciplinary team’s perspective (https://doi.org/10.1186/s12877-018-0825-0); Merck Manuals: When Death Is Near (https://www.merckmanuals.com/home/fundamentals/death-and-dying/when-death-is-near)