Hospice: Caring for Your Loved One

You have a loved one who's receiving care at the end of life. You've been helping to make your loved one comfortable. As they move into the final stages, this sheet can help you find ways to help your loved one die with dignity.

How you can help

In the weeks and days before death, a person goes through changes in both body and mind. Your loved one may sleep more and breathe differently. They may get weak and lose interest in food or fluids. Their skin may become drier. Their mind may wander in and out of awareness. These are natural processes. Stay close to your loved one during this time. You can help make this transition time more comfortable for them. Follow the tips below. And keep in touch with the hospice team.

• Put the person’s bed in a central place. This way, they can still be part of the family during the transition.

• Make sure pain is controlled. Your loved one shouldn't be in pain. As death nears, you don't need to worry about your loved one being dependent on pain medicine. Be sure that pain medicine is given on schedule. Let the hospice team know if your loved one is still in pain. If your loved one can’t speak, look for signs. A worried, restless, or pained look may mean that they're in pain.

• Give medicines as advised. Your loved one may be prescribed medicines to ease breathing, nausea, anxiety, or other symptoms. Be sure that they get these medicines on time. And let the hospice team know if there are symptoms that aren't controlled. Ask for help if the medicine schedule seems confusing.

• Help keep your loved one clean. As death nears, loss of bladder or bowel control is common. Use absorbent pads on the bed. Change these as often as needed. Ask the hospice nurse how to position your loved one for bathing and skin care.

• Gently adjust your loved one’s position. This can help reduce the risk of pressure sores. It can also help lessen breathing discomfort. Try a slight sitting-up position or try a slight side position. Use pillows to help position your loved one. Also, put pillows underneath bony joints and between knees to reduce discomfort and prevent sores. Change your loved one's position often, about every 2 hours.

• Help keep the mouth clean and moist. Use mouth swabs to clean the edges and inside of your loved one's mouth. Ask the hospice team for these special swabs. Or gently wipe a damp washcloth around your loved one’s mouth to ease dryness. Apply balm to their lips to keep them moist. If your loved one can swallow, offer ice chips or tiny sips of water.

• Offer pleasure feeding. If your loved one wants certain foods, and they can swallow, you may be able to give tiny amounts of those foods. Don’t try to feed more than your loved one can handle.

• Keep skin moist. Apply lotion to your loved one’s skin and gently massage.

• Adjust the bed covers for temperature. The body’s thermostat doesn't work well at the end of life. Your loved one may become too hot or too cold. If they're cold, cover them with a soft blanket. If they're warm, switch to a light sheet.

• Let your loved one rest. Let sleep happen. If your loved one is asleep, keep noise levels low. Don’t try to wake them. Let them sleep and wake on their own.

• Talk to your loved one. Your loved one can likely hear you, even if they look to be asleep. They may be able to hear you up until the moment of death. Speak calmly and softly and ask visitors to do the same. Know that your loved one may not respond. If your loved one is agitated or upset, speak reassuringly. Contact the hospice nurse if the agitation gets worse and becomes concerning to family members.

• Let your loved one talk. Even if it doesn’t make sense, let them speak. You may want to write down what your loved one says. Things that they say now may not make sense to you. But later these words may give you comfort.

• Touch your loved one. Hold their hand. If it doesn't agitate them, gently stroke their arm or head. This lets your loved one know you're there giving your comfort and love.

• Help your loved one have closure. Now is the time that a person may ask for or offer forgiveness. They may want to be “allowed to leave.” This is also a time for giving appreciation and thanks. Express your feelings. When you're ready, give your loved one permission to go.

As the body nears death

Death happens differently for each person. Some are awake and talking until the very end. Others may not be awake or aware. Or they may shift between levels of awareness. As death nears, the body goes through some common signs. These are normal and expected. They include:

• Changes in skin color (blue, gray, yellow, or blotchy)

• Rattling or gurgling sounds when breathing

• Very slow or irregular breathing

• Feeling cool or hot to the touch

• Change in bowel or bladder function

• A sudden burst of energy

• Restlessness

• Anger

• Confusion

• Loss of interest in people and the world around them

• Talking about leaving or taking a trip or journey

• Seeing and talking to people not in the room

As you let go

Being with a dying person can be deeply moving. At the same time, you’re likely to feel conflicting emotions. Feelings of grief, shock, fear, guilt, anger, and even relief can surface. They may take you by surprise. During this time, don’t be afraid of your feelings. And be open with your tears and grief. These are normal parts of witnessing death. Your sorrow won’t make things harder for the person who’s dying. If you need support, the hospice team is there to help.