11 End-of-Life Signs for Caregivers to Expect

Let’s get it out of the way now. Nobody wants to spend time thinking about the death of their loved ones. As individuals, we all have a unique and nuanced relationship with death, and being a primary family caregiver adds an extra layer of complexity to an already emotionally complicated time. If you’re one of the more than 30 million people in the United States who have taken on the responsibility of caregiver for an aging family member, you may wonder how you will know when the end-of-life stage is near.  

Though it can be challenging to think about our loved ones passing, learning the common signs of approaching death can help caregivers provide a more comfortable transition for their loved ones.  

End-of-Life Signs & Symptoms

Decreased desire for food

It's very common for a loved one to decrease their food intake in the early stages of dying, even two to three months before death occurs. This is an instinctual message from the body to conserve energy for the final precious moments of life. Don’t force your loved one to eat or drink. Be patient and allow time for their natural hunger cycle to return. If there is a continued inability to eat or worsening symptoms and discomfort due to lack of nutrition, contact your medical team to discuss options, including soft diets or a feeding tube.  

Increase in sleep

As the body prepares for death, tiredness and lethargy are common. Create a comfortable sleeping environment for your loved one and plan activities and quality time with them around their typical waking hours.   

Incontinence

Many caregivers and their loved ones have experience with incontinence. Still, it can be overwhelming to navigate if a loved one has not experienced incontinence until their end-of-life journey begins. First know that loss of bladder or bowel control is a very common symptom at the end of life. Remember, first and foremost, to keep your loved one clean and comfortable. There are many products on the market made specifically for adult incontinence. Work with your loved one to find what works best for both of you. You also may consider joining a local caregiver support group, where the sometimes touchy issue of incontinence (among other caregiving topics) can be freely discussed with people who share your experiences.   

Changes in urine

Urine output and color will likely change during the dying process and often stop completely hours or even days before death. Your health care team can advise whether your family member requires catheterization to prevent bladder or kidney problems.   Skin changes As dehydration occurs, one's skin may feel dry and papery and cold to the touch (though they may not feel cold themselves). You may also notice red or purple splotches spread across their skin, called mottling, due to a decrease in blood circulation. Comfort is key. Provide a comfortable resting area for your family member with soft, warm blankets, and have them dress in loose, soft clothing. Lotion dry patches of skin with gentle, unscented lotion or healing ointment.  

Muscle spasms

You may see sudden, involuntary twitching of the muscles close to death. These twitches are called myoclonic jerks and happen when the body begins to lose muscle control and reflexes. Fortunately, myoclonic jerks do not cause pain, but there are medications that can be given to minimize these muscle movements to provide comfort to a dying patient.  

Pain

Though sometimes just as difficult to discuss as death, pain control should be top of mind when caring for a dying loved one. Pain levels can vary widely depending on where they are in the dying process and what level of illness or disability they are suffering. There are a number of pain medications that can be prescribed by your medical care team. Always administer pain medications as prescribed and talk to your medical care team about the effectiveness and side effects. You may also consider combining medication-based pain management with alternative pain management therapies like mindfulness and meditation, massage, music and art therapy, and CBD- or THC-based treatments.  

Vision changes

Eyesight may degrade and become blurry or dark. You may notice your loved one straining towards light sources to see more clearly. Blinking also often decreases, which can cause dry eyes. Keep the room fully but softly lit to alleviate eye strain, and administer eye drops to mitigate irritation from dry eyes.  

Breathing changes In the days and hours before death, shallow and irregular breaths become more common. Breathing patterns may also get more erratic as it becomes harder to swallow and clear the throat. Often, several seconds and sometimes even minutes may go by between breaths. While the sound of labored breathing can be distressing to families, this change in breathing pattern usually does not cause pain or discomfort. Early breathing challenges can be mitigated by sitting your family member up at a 45-degree angle if possible. Some patients also benefit from oxygen therapy.  

Psychological & emotional changes

While their body is doing the difficult physical work of preparing for death, your loved one may also experience profound psychological and emotional experiences while dying. In the months before death, it’s not uncommon to see increased withdrawal from life and a limiting of social interaction. In the more active stages of dying, hallucinations or visions may occur. This is a normal part of the dying process and is not cause for alarm. Allow your loved one to have these moments without discounting or interfering with the experience. If a dying loved one seems distressed by hallucinations or visions, comfort and reassure them. It can be helpful to give reassurance to your loved one that it is okay to “let go” and remind them of the meaningful relationships and experiences they had during their life.  

What to expect in the moments before death

In the last hours of moments before death, you may notice your loved one's eyes begin to look glassy or glazed. Sometimes the eyes flutter or remain slightly open yet unfocused. Irregular breathing patterns can escalate, and you may hear what is referred to as a “death rattle,” which sounds like labored, noisy breaths caused by the throat muscles relaxing. Your loved one may also have vivid hallucinations or speak about things as if in another time or place. Comfort and stay close to them, if possible. One of the best kindnesses you can give a dying loved one is to help usher them calmly into death, and whatever may come next.  

How will I know when death has occurred?

The final stages of the dying process can be incredibly emotionally draining, and it may be difficult in that moment to tell if your loved one has passed. Defer to your hospice or health care team, who will be able to tell you when death has occurred and will note the day and time. You can usually expect some final gasping breaths and eyes and mouth to remain open at the time of death. Careful planning beforehand for things like religious or spiritual rituals you want to take place, music to play, or items or mementos that should be present at the moment of death can help bring some emotional readiness to both the dying and those present.  

Conclusion

Experiencing the death of a loved one can be an emotionally taxing and traumatic experience, but it can also be a cathartic and peaceful one. Knowing the signs of the end of life can help you feel better prepared to assist with the dying process as both a caregiver and a loving family member.