Death comes differently for every person, and your loved ones death will be unique. However, there are changes that are commonly part of this final phase of life. You may see these in your loved one. This handout explains some of these changes and gives ideas about what you can do to provide care and comfort. This information may help you anticipate the changes you may see in your loved one and to go forward with more peace and confidence.

Changes you may see, things you can do

This section describes physical and behavioural changes that are commonly seen in the dying process. You may not see all of these changes, or at least not at the same time. But it may help you to know a little about what you’re seeing, what your loved one may be experiencing, and what you may want to do.

Appetite, ability to eat and drink

Your loved one may not need or want much food or liquid. This is a sign of the body’s gradual process of shutting down. Right now, eating and drinking aren’t helpful. Let your loved one choose when and what to eat or drink. Don’t insist that they take food or fluids. Give ice chips or offer small sips of fluid that can be sucked from a sponge or a moist washcloth. To ease dryness, gently wipe your loved ones lips with a cool moist washcloth. Use an oral moisturizer on the teeth and gums. If your loved one is on oxygen therapy, you can use a water-based product (like K-Y jelly) on dry lips and nostrils otherwise, you can apply small amounts of Chap Stick or Vaseline to ease dryness.

Sleep

Over time, your loved one will sleep more and more. The sleep may seem deeper. It may be difficult to wake them. This change signals a slowing of the body’s metabolism. Notice if there are times of the day when your loved one is more alert and has more energy. Try to plan visits and activities for these times. Realize that your presence matters and is a comfort. Even if your loved one is asleep or can’t carry on a conversation, they know you are near. Talk or read. Play music or sing quietly. Your loved one may hear your voice and find it soothing. Reach out. Hold your loved ones hand. Stroke their hair or rub lotion on their hands. As your loved one withdraws, remember that this is simply part of the dying process, not a rejection. Your caring touch can comfort your loved one and express your connection.

Body temperature, skin changes

Your loved ones hands, feet, and limbs may become cool to the touch. You may also notice that the skin is splotchy and very pale grey or dusky purple. It may be darker on the underside of the body. These changes are signs that your loved ones circulation is slowing down. Use blankets, socks, and slippers to prevent your loved one from feeling cold. Don t use an electric blanket or heating pad. The heat may be too intense for your loved ones skin. Keep in mind that even though the skin feels cool, your loved one may feel hot and want to kick off the blankets. In this case, don’t insist on blankets. Do whatever seems comfortable to your loved one.

Bladder and bowel changes

You may notice that your loved one has fewer bowel movements and doesn’t need to urinate as often. The urine will have a darker colour and a stronger smell. This is normal as your loved one takes in less fluid and food, there’s less waste. Also, the kidneys may be shutting down. During this time, it’s also common for a person to begin to lose bladder and bowel control. If necessary, use disposable diapers and bed pads. Consider asking the care team about the bladder and bowel changes. They can determine, for example, if a catheter or medication would be helpful.

Awareness and mood

Your loved one may become increasingly confused about time, place, and people. Some people even have trouble recognizing close friends and family members. At times, your loved one may also seem restless or upset picking at the sheets, changing positions a lot, seeing things that aren’t there, and so on. These behaviours are caused by changes in the body during the dying process, such as less oxygen to the brain, less fluid in the body, and lower kidney function. Medications can also be a factor. As often as needed and as long as it seems comforting, remind your loved one of the day, time, and surroundings. Speak in a gentle, reassuring tone. Don’t insist on correcting your loved one. Don’t argue or try to reason with them. Sit next to the bed and hold hands with your loved one. Your close presence can help orient and soothe your loved one.

As time becomes very short

In your loved ones final hours, you may notice that the changes described above are even more pronounced. For example, your loved one will likely sleep more, become colder to the touch, be more agitated, and so on. Continue the comfort measures that feel right to you. As your loved one’s breathing becomes more laboured, you may want to raise your loved one’s head and body with pillows. Turning the person partly to the side may help to manage secretions.

As your loved one draws very close to death, you may see additional changes:

• Louder breathing. Your loved ones breathing may become louder, more ragged or gurgling. It may sound like snoring. This happens because saliva is more dry and thick now, the throat muscles more relaxed. It’s not distressing or painful to the dying person.
• Pale, bluish lips and nail beds. This is a further sign of slowing circulation.
• Half-open eyes and mouth. Near death, some people’s eyes remain partly open and look glassy. Their mouths may fall open.
• Stop-and-start breathing. Your loved ones breathing pattern may change, and there may be long periods between breaths. This interrupted and irregular breathing is very common in the final hours of life.

Care and comfort for both of you

You may already know many of the things you can do to comfort your loved one. They may be things you have always done sitting close, listening to music or a video, talking, touching. Familiar things may be especially comforting now.

Your role at the bedside may come naturally to you, but taking care of yourself might not. You can easily become exhausted. This can make it harder for you to care for your loved one in the ways you want to.

What can you do? Conserve your emotional and physical resources with a few small actions:

• Schedule breaks away from the bedside. Have someone take your place there if you’re reluctant to leave your loved one alone.
• Get outside every day, if only for a brief walk. A few minutes of fresh air can soothe and center you.
• Get enough sleep and rest. You may need to leave the hospital or home for a few hours.
• Eat regularly and focus on healthy foods. You need good fuel during this stressful time.
• Find a time and place to cry, complain, shout to express the intense feelings you may be holding inside. An understanding listener can help.
• Be gentle with yourself. The end of life will come in its own time, in its own way. You’re not in control, but you can honour and comfort your loved one by caring for yourself.

Material sourced with permission from The Comfort Care Basket Program, Seven Oaks Long Term Care Centre, Toronto, ON