Changes to Expect as Your Loved One Starts Hospice

By Laura Herman, Dementia and Eldercare Professional

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Death is a process that usually begins several months before the final breath is drawn.

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No two deaths are the same. There are enough commonalities however to describe a predictable sequence. Most people follow their own path through the process, experiencing symptoms to different extents. Your loved one may find certain stages to be intensely challenging, and others barely noticeable. Again, each person experiences this very differently.

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Having a general idea about what to anticipate can prepare you to cope with almost anything that happens. It can also empower you to comfort your loved one throughout the process.

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How Long is Left?

Although it’s natural to want to know how long your loved one has left, nobody can say for sure.

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If they are starting hospice, their health care provider has estimated that they have less than six months to live. However, it is crucial to remember that not everyone who starts hospice ultimately dies in that time frame. The average length of stay in hospice can vary widely, with some people staying as little as three weeks.

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If your loved one reaches the six-month mark and still needs hospice support, they can continue receiving it. There is also the possibility that your loved one’s condition can change. If it no longer looks like six months is a reasonable timeframe, they’ll “graduate” from hospice in a more comfortable, stable condition than when they started.

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The time frames presented here are generalities. Your loved one’s journey will unfold on their own.

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The Months Leading Up to Death

In the several months before death, people start preparing to die. A range of emotions is common as we near the end of life.

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Life Review

As we prepare to die, we tend to start reviewing our lives. It’s time to face unresolved issues and reflect on our faith and beliefs. We relive old memories, take stock of experiences, process dormant emotions and come to terms with our regrets.  

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Consider this checklist of actions to help support your loved one:

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• Keep the environment calm to reduce feelings of anxiety.
• Hold space for a range of emotions, including anger, anxiety, sadness, regret, fear, peace, acceptance, and feelings of closure.
• Among other things, they may feel angry with a higher being or with themselves. They may be afraid of dying, worried about what will happen to the ones they leave behind, or sad about what they’ll be missing after they’re gone.
• Listen to them without judgment.
• Sit quietly together, or hold their hand.
• Reassure them that you or others will miss them, but you'll be okay.
• Tell your loved one what you’ve valued most about your relationship and what you’ll cherish about their memory.
• Ask open-ended questions about their faith, fears, thoughts, or emotions.
• Read meaningful passages, listen to special music, or share religious rituals or traditions, if it feels right.
• Support your loved one to say the five things we all need to say before we die: I love you, I forgive you, Will you forgive me?, Thank you, Goodbye

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Withdrawal from the World

Your loved one may start to withdraw from the world around them and lose interest in activities they once felt were important. They may not want to visit with others or may want to interact only with particular people. It is common, as they may be too tired to entertain questions or conversations with others. Or they may just not be feeling up to it at all. Respect your loved one’s wishes about what they want to do and who they wish to see.

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Appetite Declines

People gradually eat less and less as we get closer to death. Food and fluid lose their appeal as the body loses its ability to digest or process food. Forcing it down can cause discomfort. Make sure to listen to their wishes about what, when, and how much they’d like to eat.

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Energy Declines

Your loved one will probably become more easily fatigued and spend more time sleeping. Expect your loved one to be more tired and weak. Follow their lead as far as what they’re up for.

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Transitioning – the Last Week or Weeks

At a certain point, changes start to happen faster and more noticeably. It may feel as though there’s a perceptible shift, as though your loved one has actually started on their final journey. This stage is often called “transitioning.”

Confusion and Mental Changes

Our body chemistry begins to change as we near death. This can affect your loved one's mood and mental state. Your loved one may experience confusion at the end of life, anxiety, euphoria, or any number of other emotions.

Agitation and Restlessness

Some people become very agitated and restless during this time, which can result from a number of reasons. As mentioned above, they may become anxious, and also have other forms of discomfort. Our emotional and physical pains do not exist in vacuums, and when a person is dying, these things can all be overwhelming.

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Remember, if your loved one is distressed or unsafe consult their hospice team for guidance.

Physical Weakness

Expect your loved one to become very weak physically. They’ll likely be confined to bed. They may be too weak to eat, so they’ll need to be fed whatever small bites or sips they take in. If they want to get out of bed, they’ll probably need help.

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• If you need to help your loved one get out of bed, first learn about how to do so safely.

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They may also suffer from issues related to incontinence, have dry mouth, difficulty swallowing, sleep for longer during the day, and issues with regulating temperature.

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Active Dying – the Final Days or Hours

During the last stage of dying – known as “active dying” – your loved one’s body will do its final work. It is not entirely dissimilar to the activities mentioned above, but they may take on more pronounced acts or become more intense.

Restlessness

Some people have very persistent restlessness, often called “terminal agitation.” This can put them at risk, for example, if they keep trying to get up but are too weak to stand.

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Others can use their arms to pick or grab at things in the air that aren’t there, and may be confused before death. This may seem odd but it isn’t usually a concern.

Burst of Energy

After weeks or months of decline, your loved one might display a sudden burst of energy and clarity of mind. They may want to get up, talk, or even eat something. This short moment of clarity before death doesn’t usually last long – maybe minutes to hours. Afterward, your loved one will probably return to a state of weakness and withdrawal, continuing toward their final breath. Be present and enjoy this sacred time with your loved one, but don’t mistake it as a sign they’re “getting better.”

Unresponsive

In the days or moments leading to their death,  people are often primarily unresponsive – unable to wake – but it’s widely believed they can still feel your touch and hear your voice. Don’t hesitate to hold your loved one’s hand and talk to them.

Breathing Changes and the “Death Rattle”

Near the end, breathing will become even more irregular, with longer periods between breaths (called apnea). The body can no longer clear saliva or other fluids from the lungs and airway, which can cause a loud rattling, gurgling, or choking noise – often called the death rattle – that accompanies the breath. The death rattle can be very disturbing to others in the room, although it doesn’t seem to be uncomfortable for the dying person.

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Another telltale sign that death is imminent is called Cheyne-Stokes breathing – rapid breaths alternating with 15-60 second periods of breathlessness.

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The Moment of Death

In the minutes before death, your loved one’s breathing may change again, becoming extremely shallow or barely puffing out over the lips. There may be very long pauses between each breath, and it may sound like they’re gasping a little bit.

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In simple terms, your loved one dies when their heart stops beating and breathing has completely stopped for a minute or more.

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Many people release any contents of their bladder and bowel shortly after they die, which may require a gentle bed bath. The hospice team can take care of this, or you may want to do so. You may want to use special oils or water or dress them in something meaningful afterward, depending on your cultural traditions or practices.

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Consider whether there is anything you’d like to do to honor your loved one at, or just after, the moment of their death. For example, you could light a candle, say a prayer, perform a ritual or hold a moment of silence. Don’t be afraid to touch your loved one or kiss them on the forehead if it feels right. Additionally, don’t be surprised if their skin feels cool, waxy, or unnatural.

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Adapting to Changes As Your Loved One Starts Hospice

As we approach death we go through several changes: physically, mentally, emotionally, and spiritually. A hospice team can support you as you encounter these changes in your loved one. Consider them as your number one resource to go to for any questions.

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Having an idea of what to expect enables you to prepare and respond appropriately and deliberately, making the best of this potentially sacred time for both you and your loved one.

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Sources

1. “End of Life: Caring for Someone Who is Dying.” Mayo Clinic, 04 April 2020, www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/cancer/art-20047600.
2. “Days and Hours Before Death – Signs and Symptoms.” Kaiser Permanente Northern California Hospice, March 2017, hospice-ncal.kaiserpermanente.org/wp-content/uploads/2017/03/KP-NCAL-Hospice_Days-and-Hours-Before-Death.pdf.
3. Cavenaugh, Beth. “End-of-Life Signs.” Beth Cavenaugh, www.bethcavenaugh.com/blog/end-of-life-signs-how-to-tell-when-a-hospice-patient-is-close-to-the-moment-of-death.  
4. Morrow, Angela. “How to Recognize When Your Loved One Is Dying.” Very Well Health, 07 October 2021, www.verywellhealth.com/the-journey-towards-death-1132504.