5 Tips to Care for Your Dying Loved One

Like birth, death is a natural human process that our bodies are innately capable of doing. No two birth experiences are exactly the same – and no two deaths are either – but at the same time, there’s a lot of common ground. We tend to follow a predictable pattern that varies a bit from one person to the next.

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That said, there are things we can do to support the process – especially when we know what to expect.

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TIP #1 - Learn to accept changes in their appetite. A gradual reduction in appetite is part of the dying process. Watching your loved one’s decreasing appetite can be sad, but the body knows best as it prepares to transition to death. Learn more about what happens, and support yourself as you lose your loved one.

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Our bodies know how to die – humans have been doing it forever. One natural part of the dying process is the gradual reduction of thirst and appetite.

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This gradual appetite loss is not a flaw in the system. A dying body rejects food when it can no longer process it. Many hospice doctors and nurses believe that when we force a body to deal with food it can no longer handle – whether by pumping it in through tubes or coercing it through guilt – we can cause discomfort or complications like stomachaches, indigestion, nausea, choking, or pneumonia.

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What Happens When a Dying Loved One Refuses to Eat

Death has been medicalized in our culture over the last century or so, but collectively we’re starting to remember that death isn’t a failure. It’s part of the plan, and is the only thing we’re guaranteed from the moment we were born.

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It can be painful to watch someone stop eating, especially when they are close to death. However, it is common enough that there are some expected stages that a loved one may experience.

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Typical stages of appetite loss:

1. A few months or so before death, we stop craving meat.
2. Veggies and fruits lose appeal.
3. Soft foods become too much to handle.
4. In the last few days or so, they barely sip liquids.
5. Finally, they stop drinking altogether.

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Still, it’s so hard to watch a dying loved one stop eating. Food equals life, and for most of us, food equals love. How are we supposed to handle watching them slip away? As painful as it may be to lose someone we love, we can best support them – best show them our love – by recognizing what they need and being there for them.

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Keep Your Loved One Comfortable

Watching a loved one die can provoke feelings of utter powerlessness, but there are things you can do to support them. Even if their appetites start to decrease over time, it doesn’t mean that their ability to choose has waned. Try to keep some normalcy during this time by providing things like favorite drinks and foods, and being attentive to how much they wish to eat or drink.

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Here are some things to keep in mind:

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• Let your loved one choose when, what, and how much they eat and drink.
• Offer food but never force them, guilt them into eating, or put food or drink in their mouth if they aren’t awake and responsive.
• Watch for constipation, and take measures to prevent and treat it when needed. Constipation can cause nausea and affect appetite.
• Offer small amounts of food frequently. Small, protein-rich snacks can be more manageable than meals.
• Focus on their favorite foods. Foods with sweet, pleasant, or strong flavors are often most appreciated at this point.
• Assist them to eat if they want you to.
• Don’t rush them. Allow/assist them to eat slowly, taking small bites and sips at their own pace.

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Activities of daily living such as eating and drinking also keep people hydrated. When someone is in the process of dying, they may not only have appetite loss but also show visible signs of hydration issues. They may suffer from dry mouth, have issues salivating, or can have dry lips. Some things you can do to keep their mouth moistened are the following:

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• Offer ice chips or small sips of juice or water frequently as long as they’re conscious.
• Help them brush their teeth or swish with mouthwash frequently.
• Use glycerin swabs or oral care sponges to moisten your loved one’s mouth if they prefer it to a toothbrush or are unconscious.
• Use lip balm for dry or chapped lips.

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How to Support Yourself When Supporting a Dying Loved One

If you are an active caregiver helping your loved one transition from life to death, their changes can be quite stark to experience. Though dying is common, watching a loved one go through the process is not easy, especially when you have provided care for them in the past.

You may want to ask yourself some questions to stay in tune with your emotions, as it is important to check in with oneself during big moments.

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Pay attention to how watching your loved one eat less affects you

For example, you may want to ask yourself: what are your unconscious beliefs regarding eating? Are you afraid that their appetite loss is hastening their death? Are you struggling to know how to express your love if you can’t feed them?

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As a caregiver and a loved one, you may have some complicated feelings about their appetite loss. A lot of cultures show family affection through food, and not knowing other ways can leave you feeling like you are not doing your best. However, by asking yourself these questions, you can start processing your feelings and also figure out other ways to help your loved one.

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Talking with the hospice team can also be a boon, and give you some tips on how to handle grief. They can:

• Look at your loved one’s specific nutritional needs.
• Educate and reassure you about the dying process.
• Help you develop a plan to make the most out of what appetite and time remain.
• Guide you through examining your feelings about your loss.
• Provide resources for the anticipatory grief you may be feeling as you prepare to lose your loved one.
• Suggest other ways you can connect and express your love without relying on food.

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When Your Loved One is Dealing With Appetite Loss

As the body progresses through the process of dying, the appetite wanes as it begins to need – and can handle – increasing less food and fluid. Food becomes less about sustenance and more about comfort.

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As your loved one goes through this transition, it’s hard but vital to realize that your loved one isn’t dying because they aren’t eating. They’re not eating because they’re dying.

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You can support them best when you can meet them where they are in the process and respect their body’s infinite wisdom. However, it’s easier said than done. To do so, you’ll need to take measures to support yourself as you start grieving your loss even before your loved one is gone, in many cases.

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TIP #2 - Consider their safety – and yours. We’re much more prone to injuries when our bodies grow weaker, and when we’re giving care to those who are. Physically assisting a loved one can endanger your safety, but learning the basics and taking precautions can go a long way toward keeping you both safe and sound.

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As our bodies grow weaker, we’re more likely to fall. Aging adults may not recognize the changes their bodies undergo, making it a bit difficult to access that top shelf in a kitchen cabinet. It’s frustrating to admit that your body no longer works the way it used to, but staying safe can make all the difference. And for all caregivers, safety is a top concern.

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Caregivers can take stock of any obvious safety concerns, and also take on a home safety evaluation to address any other lingering issues. By reviewing the home–in particular the bedroom, bathroom, and kitchen–you can prolong your loved one’s life and ability to live comfortably at home as they age.

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Make Their Environment Safer

Simple changes to the room can reduce your loved one’s risk of falling. You may want to install supportive equipment throughout the bedroom and bathroom. Specific kinds of equipment can include items transfer poles, bed rails, or toilet safety frames. You can also do things like rearrange furniture for easier passage or shorter trips to the restroom. Talk to your loved one’s hospice team or healthcare provider about which supports would be appropriate and helpful for your loved one.

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Before adding new things to a house or a room, you may want to assess the current status of your home. You may want to watch out for specific items to remove, as they can cause tripping and slipping hazards on the floor. Some items include the following:

• Area rugs or mats
• Water
• Powder
• Papers or clutter
• Cords
• Blankets
• Other objects

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Consider Medical Equipment

In addition to temporary supports such as transfer poles, toilet safety frames, or bed rails, there are many other types of equipment that can help keep your loved one safe. These upgrades can decrease safety concerns while providing valuable comfort.

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When searching online or speaking with a healthcare professional about new equipment, make sure to take note of any learning curves you may encounter. A blueprint of the house with measurements of each room makes the process of adding medical equipment easier as well.

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Some useful medical equipment includes:

• Adjustable bed
• Walker
• Wheelchair
• Bedside commode, urinal, or bedpan
• Transfer or gait belt
• Tools to make transfers safer and easier, such as slide boards or pivot discs

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Learn the Basics of Transfer Safety

It’s very easy to hurt yourself or your loved one when assisting with transfers and mobility, especially if their abilities are inconsistent, or if they aren’t cooperating due to confusion. Encourage patience when assisting a loved one with any mobility issues, as both you and your loved one may be struggling to get used to this new normal.

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Before starting, you may want to speak with a hospice team member about any essential tips, as doing a transfer from a bed to a bathroom can go awry quite quickly. If you have the time and space, consider practicing with other loved ones before engaging officially.

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Transfer Safety Basics

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1. Communicate clearly and simply what you’re doing or what you need them to do.

• Share only one step at a time.
• Coordinate actions by counting to three.

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2. Set up for safety.

• Check that the area is free of slipping or tripping hazards.
• Lock the brakes on wheelchairs or beds.
• Wear supportive non-slip footwear (both you and your loved one).
• Use a transfer (or gait) belt – a soft, strong belt that’s placed around your loved one’s waist to provide handholds and better leverage.

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3. Use good body mechanic awareness.

• Keep feet shoulder-width apart.
• Align your back, head, and neck.
• Bend with your knees and lift with your legs. Don’t twist or bend your back.
• Keep your loved one’s body as close to you as possible.
• Keep movements smooth and slow. Don’t rush or jerk.

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4. Talk to your hospice team or health care provider if you feel unsafe at any point.

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Making Safety a Priority for Your Loved One

It’s hard enough to support a loved one through the process of dying without adding additional complications, trauma, or challenges from falls or injuries. Take the time to put precautions into place to ensure a safer, smoother experience for both you and your loved one.

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TIP #3 - Assist with incontinence and toileting. Helping a loved one with toileting and incontinence can feel uncomfortable. Facing this particular task with a direct, respectful approach can help the awkwardness to fade. Assisting with such an intimate need can give you and your loved one a deeper understanding of the ups and downs of the end-of-life process.

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As death approaches and our bodies grow weaker, getting to the bathroom becomes harder, and the chance of having an accident increases.

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There are many reasons why your loved one may have incontinence issues or accidents at the end of life. Medications or medical conditions can create urgency. For some aging adults, it may take longer to physically get up and move. Similarly, it can take more strength or energy than they have available. And when people are tired or have less energy, they can be sleepier or more prone to ignoring any urgent body signals.

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If this is your first time helping a loved one with toileting and incontinence, plan ahead. You may want to speak with a member of your loved one’s care team for proper procedures and recommended supplies. Doing some research can simplify the task for both you and your loved one.

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Reduce Incontinence When Possible

When possible, minimize incontinence accidents by anticipating the need to use the toilet or making it easier to get there.

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You can set up a personalized toileting schedule – assist your loved one to the bathroom routinely based on the times they usually have accidents or need to go. If they are still able to eat meals, you may want to check in with them about an hour after eating.

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Consider a bedside commode, bedpan, or urinal if getting to the toilet is too tiring or difficult. Having a commode or bedpan nearby can also be useful if your loved one is suffering from incontinence side effects due to medications.

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Conserve Energy Where You Can

At the end of life your loved one’s energy is finite and precious – and so is yours. It’s obvious why you should do what you can to conserve it, but it may not be as clear how to do so.

• Use waterproof mattress pads, washable bed pads, or disposable bed pads to protect the bed or furniture from unnecessary linen changes.
• Reduce clean-up time for bedpans or commodes by placing a small amount of water, cooking oil spray, or toilet paper in the bottom before use.
• Sprinkle a bedpan with body powder to help it slide into place more easily.

• Note: don’t use powder if they have open sores.

• Use a toilet safety frame or raised seat with handles to make it easier for your loved one to get on or off the toilet.

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Offer incontinence products

Reduce the possibility of accidents or anxiety about getting to the toilet in time with some additional supplies like disposable underpants.

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For example, pull-up style disposable underpants may be easier for your loved one to manage if they’re still getting up to the toilet. Diaper-style wraparound briefs can be easier for a caregiver to change in bed. Reusable absorbent underpants or disposable adhesive pads can help with occasional leaks. However, you will need to make sure to immediately clean up any feces. Use wet wipes and cleansing lotion, foam, or another product designed for peri-care (cleaning the privates) to clean up sticky feces more easily.

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You can look for “night briefs” or other incontinence products designed for extended use. Some of these specially-designed products wick urine away from the skin to keep it dry overnight, preserving sleep and reducing discomfort and disruption.

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Though it may sound tiring, you may want to continue repositioning them every two hours (or as directed by your hospice team or healthcare provider). It’s quicker, easier, and less disruptive than a full brief change.

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Take Good Care of Your Loved One’s Skin

Reduce your loved one’s risk for skin issues like breakdown or rashes, as well as urinary tract infections by helping them stay clean and dry. With products designed to minimize the physical act of getting up to use the toilet, you may need to stay on alert for other related tasks. Some include the following:

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• Change wet pads as soon as you can, at least every two hours.
• Clean up feces immediately.
• Use a barrier skin ointment to protect from wetness.
• Report redness, rashes, or broken skin to the hospice team or their health care provider. They can recommend products to help.
• Clean the perineal (private) area well after each episode of incontinence.

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Assisting your loved one with toileting can also include hygiene and repeated cleansing. Following these steps and making sure to clean after every incident can help avoid any infections or potential rashes.

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Perineal Hygiene for Males

(If uncircumcised): If possible, ask him to pull back the foreskin. If he can’t, gently do it for him. Use a warm cloth to cleanse the area, then pull the foreskin back to its natural position.

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Use a warm cloth or wipe and clean in this order:

1. The tip of the penis
2. The shaft
3. The scrotum (balls)
4. Surrounding groin area
5. Anal area

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Perineal Hygiene for Females

Use a fresh warm cloth or wipe for each step, or each time the wipe comes back soiled.

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Wash in this order:

1. Groin and pubic hair area
2. Between folds of the labia
3. Anal area

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Helping a Loved One with Toileting and Incontinence at the End of Life

When signing on to be a caregiver for a loved one, there can be quite a few thankless tasks to manage. Toileting and incontinence is one of those tasks that can cause some frustration for both the caregiver and patient.

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However, you can minimize stress for both of you by implementing some valuable changes to the daily task. Getting some additional supplies and supporting equipment can give your loved one some more agency and help you come up with a game plan.

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TIP #4 - Protect their skin. When our bodies are dying they’re very prone to skin breakdown. As a caregiver, it is important to be aware, and prevent this from happening as best as possible.

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When nearing death, our bodies’ protective functions either slow down or stop working. That includes cell regeneration for our largest organ, our skin. As we near death our skin becomes very fragile and prone to breakdown and injury. Protecting your loved one’s skin becomes a priority, often requiring a great deal of attention and care to prevent painful problems.

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Understand the Basics of Pressure Injuries and Skin Breakdown

In general, with your loved one’s skin health deteriorating, you will want to handle it very carefully. It doesn’t take much to tear or bruise fragile skin. Skin protection also includes moisturizing with gentle lotion.

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Watch for redness, rashes, bruises, or skin tears, and report them to your hospice team or healthcare provider for directions. This also includes keeping their skin clean and dry, especially after episodes of incontinence.

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Learn about the basics of pressure injuries and take measures to minimize them. Pressure injuries (sometimes called bedsores, pressure sores, or pressure ulcers) can be very painful and distressing, so it’s important to do your best to prevent or minimize them to whatever extent possible.

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Skin can break down incredibly quickly – the process starts in just two hours. So you will want to help your loved one adjust their position every two hours (if they can’t do it themselves), unless advised otherwise by your hospice team or healthcare provider.

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The Process of Skin Breakdown

You may not be sure what to look for when someone’s skin starts to break down at the end of life. Here are some of the stages that your loved one can go through and what you can do to help alleviate any pain or discomfort.

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1. Discoloration. Lighter skin appears red and darker skin may look purple or blue.  

• When this happens, reposition your loved one to relieve the pressure.
• If their skin doesn’t return to its natural color after a few hours, notify your hospice team or healthcare provider.

2. Broken skin with a pink or red moist-looking wound. Blisters may or may not be present.

• Notify your hospice team or healthcare provider right away.

3. The next stages of breakdown start eating into the flesh and underlying tissue. It can be extremely uncomfortable and difficult (or impossible for a dying person) to heal.

• Notify your hospice team or healthcare provider right away.

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Minimize Risk Factors

Malnutrition is a big contributor to skin breakdown. Typically at the end of life, people may also suffer from loss of appetite. Appetite loss is a difficult symptom to manage, as this is also a natural part of the dying process. That said, there are other things you can do to minimize any additional risks when providing care for your loved one.

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Wetness and incontinence

Keep your loved one clean and dry as best as you can, as incontinence is especially hard on the skin. Helping a loved one with any incontinence and toileting is also a valuable part of  skincare. Consider using a barrier ointment to protect skin from incontinence.

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Friction and shear

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If you elevate the head of the bed, you will also want to elevate the feet to prevent sliding downward. The slide creates a force called shear, which can be damaging to the skin.

• When moving your loved one up toward the head of the bed, take measures to ensure you’re not letting them drag against the bed at all.

• Get help from a second person and use a folded sheet or strong bed pad to lift your loved one just millimeters off the mattress. Hold on as close to their body as possible to reduce your risk of injury.
• Ask your loved one to help lift their hips off the bed, if able, by placing their feet on the mattress, or holding onto a bed trapeze.
• Consider friction-reducing sheets created for this purpose.

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Immobility and pressure

Assist your loved one to reposition frequently (at least every two hours) so parts of their body aren’t subject to extended contact with chairs, armrests, beds, or other surfaces. Even a small adjustment can make all the difference, as long as the pressure is relieved. You may also want to order wheelchair cushions or bed mattress overlays specifically designed to reduce pressure.

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Check Skin Frequently

Keep a close eye on bony areas of the body, especially those that come in contact with the bed, chair, or other surfaces for prolonged periods.

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Common areas for skin breakdown include:

• Tailbone
• Heels
• Spine
• Hips
• Knees
• Elbows
• Ankles
• Shoulder blades
• Ears

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Recognizing the Limits of Caring for a Dying Loved One’s Skin

There is a lot you can and should do to minimize pressure injuries for your loved one – do your best to do so. But don’t beat yourself up if your loved one ends up with one despite your best efforts.

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Pressure injuries can sometimes be a sign someone is receiving poor care, but that’s not always the case, especially in end-of-life care. Pressure injuries occur frequently in hospice patients and are often considered unavoidable.

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TIP #5 - Ease end-of-life discomfort. There’s no doubt about it. Dying is uncomfortable, and sometimes it can be worse for others. Learn what you can do to support your loved one as they struggle with fevers, chills, restlessness, breathing, or pain.

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Our bodies are like machines–they need maintenance and sometimes they will just wear down over time. They can make sudden changes that leave us in confusion, and without recourse to change back. Especially as we prepare to die, our bodies may lose access to daily functions like temperature regulation, appetite loss, ease of breathing, among others.

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If this is your first time as a caregiver, your loved one’s body might be changing at a rapid rate that leaves your head spinning. It can help to expect these changes, and while you may not be able to prevent them, you can respond in ways that reduce their intensity.

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Changes in Body Temperature

As our bodies go through the dying process, we lose our ability to regulate body temperature. As you care for your loved one you may notice that sometimes they feel very cold, while other times they’re feverish and sweaty.

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These changes can be hard to anticipate, so you will want to keep an eye on any unusual behavior. Look for signs that they may be uncomfortable if they can’t tell you.

• Pulling at clothing or blankets might be a sign they’re too hot.
• Hunching or holding their shoulders or arms could be a sign of feeling chilly.
• Help them get more comfortable when possible.

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When dealing with chills, try to keep a number of articles of clothing and blankets at the ready. Additionally, you may want to do the following:

• Cover up with an extra blanket, cozy socks, or warm clothing.
• Increase the temperature in the room if needed.
• Don’t use electric blankets or heating pads.

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Should your loved one develop a fever, you may need to be at the ready to keep them comfortable. No matter how old you are, fevers are just plain uncomfortable.

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• Help your loved one dress in a light cotton T-shirt, nightgown, or hospital gown, or cover up with just a sheet.
• Use a cool washcloth on their forehead, neck, or underarms.
• Use ice packs only with caution because they can damage skin! Never put an ice pack directly against the skin – wrap it in a towel, check it frequently, and remove it after no more than fifteen minutes.
• Change linens if they become damp with sweat.
• Talk to your loved one’s hospice team or healthcare provider about whether fever-reducing medication can help.  

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Notice changes in skin color and temperature

You may notice your loved one’s lips, nose, fingers, or toes feel cold and look gray or blue in color. This is a normal part of the dying process. As their circulatory system slows down, blood will not be able to reach their extremities. Cold skin blue in color can also creep up as death draws nearer, with cold blotchy discoloration rising up from the toes into the legs and feet. Though it may look unsettling, remember that there’s nothing you need to do about it.

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Breathing Changes

As we die, frequent changes in breathing can be expected. It becomes harder for one’s body to keep every system running, so your loved one could be breathing in any number of ways. These can all vary depending on the time, and how close they may be to death.

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Common types of breathing you might notice in your loved one:

• Rapid breathing - over 24 times per minute
• Noisy breathing
• Shallow breathing
• Coughing
• Irregular breathing - alternating between very fast breathing, slow breathing, and periods of not breathing at all (apnea). As death draws closer the periods of apnea may last up to a minute or more.
• The “death rattle” - occurs when the body can’t cough or swallow saliva and other secretions well enough so they build up in the airway and lungs. It’s not generally uncomfortable for the dying person, but it can be very distressing to those around them.

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With all these types of breathing patterns at play, you might be unsure how to help. If you sense that your loved one is in distress, reach out to the hospice team or a healthcare provider to let them know. They may suggest medications or other interventions specific to your loved one’s needs. After speaking with them, you may choose to make other adjustments as well. Consider some of the following:

• Elevate your loved one’s head and shoulders with an adjustable bed or special wedge pillow created for this purpose.
• Clean out your loved one’s mouth with oral care swabs if secretions are building up in their mouth.
• Try a cool-mist humidifier, a gentle fan, or an open window

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Pain

Dying can be more painful for some than others. Your loved one may have painful health conditions, or just be achy and sore from lying in bed all day. (Try lying completely still for just an hour or two to experience a taste of this discomfort.)

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Pain can cause anxiety, increase shortness of breath, affect concentration, and worsen one’s mood. It can get in the way of connecting with those who are important to us at a time when we really need to do so.

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Discuss any observations with your hospice team or healthcare provider, and address any new type of pain or discomfort. Your loved one may be unable to speak up, so try to ask for guidance on when medication should be given to control pain. Additionally, there may be some suggestions for non-drug ways to mitigate their pain.

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As your loved one approaches death – or if they experience communication or cognitive challenges – they may not be able to communicate their pain to you verbally.

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Stay alert for any of these non-verbal signs of pain:

• Moaning, groaning, or whimpering
• Yelling or calling out
• Crying
• Frowning, grimacing, or furrowed brow
• Stiff, tense, or rigid muscles
• Fidgeting, restlessness, pacing, or writhing around in bed
• Knees pulled close to the body
• Clenching fists
• Pushing away, striking, or kicking
• Holding or guarding a part of the body

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If giving them pain medication is out of the question, try some other options.

• Help your loved one adjust their position.
• Cover them in a warm blanket from the dryer.
• Offer a gentle massage (don’t push harder than you would to rub lotion into their skin unless you have the okay from their healthcare team).

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Restlessness

Many of us become very restless as we die. It can be quite severe in some cases, and often there’s no clear cause. Sometimes physical discomfort can cause agitation and restlessness. Think of any of the following times you have experienced the following, and you may understand your loved one:

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• Pain
• Constipation
• A full bladder
• Side effects from medications
• Medical conditions

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Talk with your hospice team about ways to handle your loved one’s restlessness if they're distressed or unsafe. Before speaking with them, take note of the frequency of bowel movements and urination. Not only does it help you stay aware if they haven’t gone in a while, any changes to their schedule may be serious enough to warrant intervention from a healthcare provider. As mentioned earlier, keep an eye out for non-verbal signs of pain, such as grimacing, a furrowed brow, or stiff muscles.

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Though all of these physical symptoms can and do cause restlessness, there is no doubt that going through the end-of-life process is mentally challenging. Psychological, emotional, and spiritual factors can also cause restlessness. They may be experiencing any of the following issues:

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• Fear
• Anxiety
• Regret
• Frustration

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Additionally, they can be concerned over what will happen after death, either to them or to those they’re leaving behind. Death causes other emotions to surface, including any unresolved emotional wounds or trauma from the past. Talking with your loved one can help. If you are in a position to do so, tell them you forgive them. Reassure them that the people, pets or things they’re worried about will be cared for. Give them your blessing to go when they’re ready.

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You can also enlist the help of the hospice chaplain or grief counselor to give your loved one some valuable methods of handling this stress.

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If they are not up to talking, try some or all of these things and take note of which seem to be helpful.

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• Favorite or calming music
• Fresh air
• Change of scenery, when possible
• Calming scents, aromatherapy
• Prayer or guided meditation
• Hold hands, comb hair, or massage feet or back
• Reduce noise and activity in the room, keep lighting soft lighting

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Discomfort During the End of Life

Nurturing your loved one as they transition from life to death can be a gift for both you and them. You are able to spend time with them, and share the love you have for them while being at their side. Though this time is valuable, it is impossible to ignore the pain that they may experience as their body prepares for death.

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By keeping an eye out on them and their comfort, you can make these last few moments all the richer for them. Alleviating their pain can give them the space to enjoy the things they love most.