Caring for a terminally ill loved one can be challenging and emotional. As an experienced hospice nurse case manager, you understand the importance of providing compassionate care and support to loved ones and their families. In this educational article, we will explore the common journey that terminally ill loved ones and their caregivers face as they approach the end of life. We will summarize this journey's various aspects, offering guidance and separating fact from fiction.
Anticipatory Grief
What is Anticipatory Grief?
Anticipatory grief is a common emotional response among caregivers who are facing the impending loss of a loved one. It occurs before the actual death and can bring feelings of sadness, anger, guilt, anxiety, and loneliness. Anticipatory grief can also affect the person who is dying, as they may worry about leaving their loved ones behind or fear the unknown.
Understanding Anticipatory Grief
Anticipatory grief is a natural response to impending loss. Caregivers need to recognize and acknowledge their feelings during this period. Seeking support from hospice providers and support groups can be immensely helpful. Hospice providers can offer medical, emotional, and spiritual care to the dying person and their family. Support groups can provide a safe space for caregivers to share their experiences and feelings with others who understand. Some tips for coping with anticipatory grief are:
Be honest and direct with your loved one about their condition and prognosis. Use simple and clear words to explain what is happening and what to expect. Avoid euphemisms or vague language that may confuse or mislead them.
Spend quality time with your loved one and create meaningful memories. Express your love and gratitude, and listen to their wishes and concerns. Help them fulfill their goals or dreams, such as visiting a particular place or reconnecting with someone.
Take care of yourself and your own needs. Anticipatory grief can be physically and emotionally exhausting, so it's essential to maintain your health and well-being. Eat well, get enough sleep, exercise regularly, and seek professional help. Find healthy ways to cope with stress, such as meditation, journaling, or hobbies.
Allow yourself to feel and grieve. Anticipatory grief is not a sign of weakness or giving up. It's a normal and valid reaction to a problematic situation. Don't suppress or deny your emotions; embrace and express them. Cry, laugh, scream, or do whatever helps you release your feelings. Remember that grief is not linear or predictable; everyone experiences it differently. There is no right or wrong way to grieve.
Common Thoughts About End of Life
There are many myths and misconceptions about the end of life. It is important to separate fact from fiction to understand what to expect better. Some common thoughts about end of life include:
Death is painful: While some people may experience pain, it is not always the case. Pain can be managed with medication and other therapies. Sometimes, pain can even decrease as the body shuts down. Hospice care can help people who are dying and their families cope with pain and other symptoms.
Dying people lose their mental faculties. While some people may experience confusion or disorientation, this is not always true. Many people remain mentally alert until the end of their lives. Confusion can be caused by medication, infection, dehydration, or other factors that can be treated. Sometimes, dying people may see or talk to people who are not there, but this does not mean they are crazy. They may be having spiritual or emotional experiences that are meaningful to them.
Dying people want to be left alone: While some may prefer solitude, many want to be surrounded by loved ones. They may need physical, emotional, and spiritual support as they face the end of their life. They may also want to say goodbye, express their feelings, and share their memories. Being present, listening, and showing compassion can make a big difference for dying people and their families.
Slow Withdrawal
The Terminally Ill and Withdrawal
Loved ones near the end of life may slowly withdraw from their surroundings and loved ones. This withdrawal is often a natural part of the dying process. It may mean the loved one is preparing for the final transition and needs more rest and quiet. It may also mean that the loved one is experiencing physical changes that affect their senses, such as hearing, vision, or taste.
Providing Comfort During This Time
Caregivers should focus on providing comfort and emotional support during this time. Understanding that withdrawal is a part of the journey can help offer patient-centered care. Some ways to provide comfort are:
Respect the loved one's wishes and preferences. Give them space and privacy if the loved one wants to be alone. If the loved one wants company, stay with them and talk or read to them.
Maintain physical contact. Hold the loved one's hand, stroke their hair, or give them a gentle massage. This can help them feel loved and connected.
Set a soothing mood. Use soft lighting, play relaxing music, or diffuse pleasant aromas. This can help the loved one feel calm and peaceful.
Involve the loved one in decision-making. Ask the loved one what they need and want. Respect their choices and honor their dignity.
Changes in Eating
When someone is getting close to dying, their body starts to slow down and needs less food and water. They may not feel hungry or thirsty anymore, and they may also have trouble swallowing or chewing. This is normal and part of the dying process.
Sometimes, family members or caregivers may worry that the person is starving or dehydrated. They may want to feed them more or give them fluids through a tube or a needle. However, this may not help the person feel better or live longer. It may make them feel worse or cause problems like infections or bleeding.
The best way to care for someone who is dying is to follow their wishes and comfort them. Here are some tips to help them with eating and drinking:
Ask the person what they want to eat or drink. Respect their choices and don't force them to eat or drink more than they want to.
Offer small amounts of their favorite foods or drinks. They may like foods that are soft, moist, or easy to swallow. They may also enjoy drinks that are thickened to prevent choking. You can use special thickeners or natural foods like applesauce or yogurt to thicken drinks.
Help the person with feeding if they want to and can. Use a spoon, a syringe, or a dropper to give them small bites or sips. Be gentle and patient. Watch for signs that they are full or tired.
Keep the person's mouth clean and moist. Use a soft toothbrush, a wet sponge, or a cotton swab to clean their teeth, gums, and tongue. Give them ice chips, water, or mouthwash to moisten their mouth. Apply lip balm to prevent dryness or cracking.
Make mealtime pleasant and peaceful. Set a soothing mood with soft lighting, music, or aromas. Sit with the person and talk to them or read to them. Show them your love and support.
Changes in Toileting
When someone is getting close to dying, their body may not work as well as before. They may not be able to control when they go to the bathroom. They may have accidents or leak urine or poop. This is called incontinence. Incontinence is normal and part of the dying process.
Incontinence can make the person feel embarrassed, uncomfortable, or dirty. It can also cause skin problems or infections. That's why it's important to provide proper hygiene and care to the person. This means keeping them clean and dry and using products that can absorb the urine or poop. This can help the person feel more comfortable and dignified.
Here are some tips to help you care for someone who has incontinence:
Wear disposable gloves when you are helping the person to clean up. Wash the person's skin afterward with warm water and gentle soap. Pat dry and apply a barrier cream sparingly to prevent irritation. Wash your hands thoroughly with soap and water afterward, even if you wore gloves.
Use adult diapers, pads, shields, or bed pads to catch the urine or poop. Change them as soon as they are wet or dirty. Dispose of them in a sealed plastic bag. Wash any clothes or linens that are stained with hot water and detergent.
Help the person with toileting if they want to and can. Ask them how often they need to go, and gently remind them. If they can walk, assist them to the toilet or a commode chair. Use a bedpan or a urinal if they can't get out of bed. Be patient and respectful.
Encourage the person to drink plenty of fluids and eat foods that are easy to digest. This can help prevent dehydration, constipation, or diarrhea. Avoid foods or drinks that irritate the bladder or bowel, such as coffee, alcohol, or spicy foods.
Make toileting time pleasant and peaceful. Use soft lighting, music, or aromas to create a soothing mood. Sit with the person and talk to them or read to them. Show them your love and support.
Changes in Body Temperature and Complexion
Temperature and Complexion Changes
When someone is getting close to dying, their body may not be able to control its temperature well. They may feel very cold or very hot at different times. They may also have changes in their skin color, such as becoming darker, paler, or yellowish. These changes are signs that their blood circulation is slowing down.
Understanding the Signs
Caregivers need to notice these changes and help the person feel more comfortable. Here are some tips to do that:
Check the person's temperature regularly with a thermometer. If they have a fever, give them medication to lower it. If they are cold, cover them with blankets or a heating pad. If they are hot, use a fan or a cool cloth to cool them down.
Look at the person's skin color and feel their hands and feet. If they are cold and bluish, it means their blood is not reaching their limbs well. Try to massage their hands and feet gently to improve blood flow. Their liver or kidneys are not working well if they are pale or yellowish. Talk to their doctor about what to do.
Ensure the person's room is comfortable—not too hot or cold. You can check the room temperature using a thermostat or a thermometer. You can also open or close the windows or curtains to adjust the temperature.
Be gentle and respectful with the person. Ask them how they feel and what they need. Listen to their wishes and preferences. Show them your love and support.
Emotional Changes
Confusion and Disorientation
When someone is getting close to dying, their mind may not work as well as before. They may not remember things, know where they are, or recognize people they love. This can make them feel scared, angry, or sad. This can also make their family and friends feel sad, frustrated, or helpless. This is called confusion and disorientation, and it is common near the end of life.
Providing Reassurance
Being kind and patient is the best way to help someone who is confused and disoriented. Caregivers should offer reassurance and a calming presence. They should speak calmly and gently and use simple and clear words. They should avoid using medical terms that the person may not understand. They should also do these things:
Tell the person who they are and what their relationship is. For example, say, “Hi Dad, it's me, your son John.”
Remind the person where they are and what time it is. For example, say, “You are at home, in your bedroom. It's Monday morning.”
Show the person pictures of familiar people or places. For example, show them a photo album of their family or a painting of their favorite place.
Play the person's favorite music or read them their favorite book. This can help them feel relaxed and happy.
Hold the person's hand, hug them, or touch them gently. This can help them feel loved and safe.
Restlessness, Anxiety, and the Rally
Restlessness and Anxiety
When someone is getting close to dying, they may feel very nervous or uneasy. They may move around a lot or act differently than usual. This is called restlessness and anxiety, and it is normal near the end of life.
Restlessness and anxiety can occur when a person is in pain or has trouble breathing. They can also occur when a person is scared or worried about what will happen to them or their loved ones. Sometimes, the person may see or hear things that are not real, like people or places from their past. This can make them more confused or upset.
Sometimes, a person who is dying may seem to get better for a short time. They may talk, eat, or ask for something they like. They may also remember things or recognize people they had forgotten. This is called the “rally” phenomenon, and it can be a surprise for the caregivers.
The rally phenomenon can happen because the person's body or mind is trying to fight the illness, wants to say goodbye, or wants to finish something important. The rally phenomenon can be a gift for the person and their loved ones, but it can also be hard to understand. It does not mean that the person is cured or will live longer. It is just a brief moment of clarity before the final stage of dying.
Some tips for caregivers to cope with restlessness, anxiety, and the rally phenomenon are:
Stay calm and supportive. Talk to the person in a gentle and soothing voice. Tell them who you are and where they are. Remind them that they are safe and loved.
Try to find out what is causing the restlessness or anxiety. Ask the person if they are in pain or need anything. Check their medication and symptoms. Call their doctor or hospice team if needed.
Keep the environment peaceful and comfortable. Use soft lighting, music, or aromas. Avoid loud noises or too many visitors. Make sure the person has enough blankets or pillows.
Be present and attentive. Listen to what the person has to say. Hold their hand or touch them gently. Respect their wishes and preferences.
Don't argue or correct the person. Don't try to change their mind if they say something false or makes sense. Just go along with them or change the subject. Try to understand what they are feeling or trying to say.
Don't get your hopes up or feel guilty. If the person rallies, enjoy the time with them and be grateful. But don't expect them to stay that way or get better. Remember that it is not your fault or theirs that they are dying. It is just part of the natural process.
Saying Goodbye
When someone you love is dying, you may want to say goodbye to them. Saying goodbye can help you and the person feel more at peace. It can also help you express your love, gratitude, and forgiveness. Saying goodbye can be hard, but it is a beautiful and meaningful moment.
Some tips for saying goodbye to someone who is dying are:
Choose the right time and place. Ask the person if they are ready to talk and want anyone else to be there. Find a quiet and comfortable place where you won't be interrupted.
Be honest and direct. Tell the person that you are there to say goodbye and that you love them. Use simple and clear words that they can understand. Avoid using euphemisms or vague language that may confuse or mislead them.
Share your memories and feelings. Tell the person what they mean to you and how they have touched your life. Remind them of your good times and what you learned from them. Thank them for being a part of your life and everything they have done for you.
Listen and support. Let the person share their memories and feelings with you. Listen with empathy and compassion. Don't interrupt or correct them. Validate their emotions and acknowledge their fears. Reassure them that they are not alone and that you are there for them.
Say the four things that matter most. According to Dr. Ira Byock, author of The Four Things That Matter Most, dying people typically want to hear and say four things: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.” These words can help heal wounds or regrets and express the heart's deepest feelings.
Say goodbye and let go. When you feel ready, tell the person you will leave and see them again. Please give them a hug, a kiss, or a gentle touch. Tell them that you love them and that you will miss them. Let them know that it is okay for them to go when they are ready. Then, leave gracefully and respectfully.
Transitioning and Actively Dying
When someone is getting close to dying, their body may start to shut down. This means that their organs and systems stop working well. They may have changes in their breathing, heart rate, and consciousness. This is called transitioning and actively dying, and it is the final stage of life.
Some signs that someone is transitioning and actively dying are:
Their breathing becomes irregular, shallow, or noisy. They may have periods of no breathing or very fast breathing. They may also make sounds like moaning or gurgling. This is because their lungs are filling with fluid or their throat muscles are relaxing.
Their heart rate becomes slow, fast, or irregular. They may have a weak pulse or no pulse at all. This is because their heart is not pumping blood well or their blood pressure is dropping.
Their skin becomes cold, clammy, or mottled. Their lips, nails, hands, and feet may be bluish or grayish. This is because their blood is not reaching their skin well or their body temperature changes.
Their eyes become glassy, half-open, or closed. They may not blink or move their eyes. They may also have tears or discharge from their eyes. This is because their eyes are drying out or their brain is not controlling their eye movements.
Their awareness becomes reduced, altered, or lost. They may not respond to sounds, touch, or words. They may also have visions, dreams, or hallucinations. This is because their brain is not getting enough oxygen or blood, or they are having spiritual or emotional experiences.
It is important to provide comfort and support to someone who is transitioning and actively dying. They may still hear and feel what is happening, even if they can't show it. They may also need physical, emotional, and spiritual care to ease their pain and suffering.
Some ways to provide comfort and support are :
Stay with the person and let them know you are there. Talk to them softly and gently. Tell them you love them and that you will miss them. Let them know that it is okay for them to go when they are ready.
Keep the person's mouth and lips moist. Use a wet sponge, a cotton swab, or a spray bottle to moisten their mouth. Apply lip balm or petroleum jelly to prevent dryness or cracking. Avoid giving them fluids by mouth if they can't swallow or cough.
Help the person breathe easier. Raise their head with pillows or a wedge. Turn them on their side or back. Open a window or use a fan to circulate fresh air. Give them oxygen or medication if prescribed by their doctor or hospice team.
Keep the person warm or cool as needed. Use blankets or a heating pad to warm them up. Use a fan or a cool cloth to cool them down. Check their temperature with a thermometer or by feeling their forehead.
Play soothing music or read to the person. This can help them relax and lessen pain. Choose music or books that they like or that have meaning for them. You can also sing to them or pray with them if they are religious or spiritual.
Respect the person's wishes and preferences. Ask them what they need and want. Follow their advance directives or living will if they have one. Honor their dignity and privacy. Involve their family and friends if they want to.
When Death is Very Close
When someone is dying, they may stop breathing, and their heart may stop beating. This is called death, and it is the end of life. Death can happen quickly or slowly, but it is not something to be afraid of. Death can be a peaceful and dignified process for the person and their loved ones.
Providing comfort and support to someone dying and their loved ones is important. They may need physical, emotional, and spiritual care to ease their pain and suffering. They may also need to say goodbye and let go.
Some ways to provide comfort and support are:
Stay with the person and let them know you are there. Talk to them softly and gently. Tell them you love them and that you will miss them. Let them know that it is okay for them to go when they are ready.
Keep the person's mouth and lips moist. Use a wet sponge, a cotton swab, or a spray bottle to moisten their mouth. Apply lip balm or petroleum jelly to prevent dryness or cracking. Avoid giving them fluids by mouth if they can't swallow or cough.
Help the person breathe easier. Raise their head with pillows or a wedge. Turn them on their side or back. Open a window or use a fan to circulate fresh air. Give them oxygen or medication if prescribed by their doctor or hospice team.
Keep the person warm or cool as needed. Use blankets or a heating pad to warm them up. Use a fan or a cool cloth to cool them down. Check their temperature with a thermometer or by feeling their forehead.
Play soothing music or read to the person. This can help them relax and lessen pain. Choose music or books that they like or have meaning for them. You can also sing to them or pray with them if they are religious or spiritual.
Respect the person's wishes and preferences. Ask them what they need and want. Follow their advance directives or living will if they have one. Honor their dignity and privacy. Involve their family and friends if they want to.
Say goodbye and let go. When you feel ready, tell the person you will leave and see them again. Please give them a hug, a kiss, or a gentle touch. Tell them that you love them and that you will miss them. Let them know that it is okay for them to go when they are ready. Then, leave gracefully and respectfully.
Care for the Caregiver
Being a caregiver can be very rewarding, but it can also be very stressful. You may have to do many things for the person you care for, such as helping them with daily activities, managing their medications, or making decisions. You may also have to balance your caregiving role with other responsibilities, such as work, family, or personal life. This can make you feel tired, overwhelmed, or lonely.
It is important to take care of yourself as a caregiver. This can help you stay healthy and happy and provide better care and support to the person you care for. Taking care of yourself means doing things that make you feel good and help you cope with stress. Some ways to take care of yourself are:
Ask for help when you need it. You don't have to do everything by yourself. You can ask other family members, friends, neighbors, or volunteers to help you grocery shop, cook, clean, or drive. You can also use respite care services, which provide temporary care for the person you care for so you can have some time off.
Eat healthy foods. Eating well can give you more energy and prevent illness. Eat a balanced diet that includes fruits, vegetables, whole grains, lean protein, and low-fat dairy. Drink plenty of water and limit caffeine, alcohol, and sugar. Avoid skipping meals or eating junk food.
Join a caregiver support group. A support group is a place to meet other people going through similar experiences. You can share your feelings, get advice, learn new information, or have someone listen. You can find support groups online, by phone, or in person. If you need more help, you can also talk to a counselor, therapist, or clergy member.
Take breaks each day. Taking breaks can help you relax and recharge. You can do something you enjoy, such as reading, listening to music, gardening, or meditating. You can also do something that makes you laugh, such as watching a funny show, telling jokes, or playing with a pet. Laughter can reduce stress and boost your mood.
Spend time with friends. Friends can provide emotional support, companionship, and fun. They can also help you cope with stress and loneliness. Stay in touch with your friends by calling, texting, emailing, or visiting them. You can also make new friends by joining a club, taking a class, or volunteering for a cause you care about.
Keep up with your hobbies and interests. Hobbies and interests can keep you engaged and happy. They can also help you express yourself and use your skills and talents. You can do something creative, such as painting, writing, or knitting. You can also do something physical like hiking, biking, or swimming. You can also do something educational, such as learning a new language, playing an instrument, or taking a course.
Get exercise as often as you can. Exercise can improve your physical and mental health. It can help you lose weight, lower your blood pressure, strengthen your muscles and bones, and prevent diseases. It can also help you reduce stress, improve mood, and sleep better. Aim for at least 30 minutes of moderate exercise most days of the week. You can do activities that you like, such as walking, dancing, yoga, or tennis. You can also do exercises at home, such as stretching, lifting weights, or using a fitness app.
Get rest. Getting enough sleep can help you feel more alert and energetic. It can also help you cope with stress, improve memory, and boost your immune system. Try to get at least seven to eight hours of sleep every night. To sleep better, you can follow a regular bedtime routine, avoid caffeine and alcohol before bed, make your bedroom dark and quiet, and use relaxation techniques, such as deep breathing or listening to soothing sounds.
The Grieving Process
When someone you love dies, you may feel very sad and lonely. You may also feel angry, scared, or guilty. These feelings are normal and part of the grieving process. Grieving is how you heal from your loss and learn to live without the person who died.
The grieving process can start before the person dies. This is called pre-grief, and it happens when you know that the person is going to die soon. You may start to prepare yourself for the loss and say goodbye to the person. You may also feel numb or in denial as if the person is not dying.
The grieving process can continue after the person dies. This is called post-grief, which happens when you face the reality of the loss and adjust to the changes in your life. You may go through different stages of grief, such as shock, anger, bargaining, depression, and acceptance. These stages are not in order, and you may have to go back and forth between them. There is no right or wrong way to grieve; everyone grieves differently.
The grieving process can take a long time. It can last for months or years, depending on how close you were to the person who died and how they died. You may have good and bad days, and your feelings may change. You may never stop missing the person, but you can learn to live with the loss and find new meaning and happiness.
When grieving, seeking support from friends, family, and professionals is important. They can listen to you, comfort you, and help you cope with your loss. You can also join a grief support group to meet other people going through the same thing. You can share your stories, feelings, and tips. You can also read books or watch videos about grief and loss, which can help you understand what you are going through and how to heal.
In conclusion, caring for a terminally ill person can be a difficult and emotional process. It is important to understand the common journey that all face on their way towards death and to provide comfort and support to the person and their loved ones. Remember to take care of yourself and seek support when needed. You are not alone, and you can get through this. You can honor the memory of the deceased person and celebrate their life. You can also find hope and joy in your own life. You can survive and thrive after a loss.
Conclusion
When someone we love is dying, we may feel many different emotions, such as sadness, anger, fear, or guilt. We may also have to do many things for them, such as helping them with their daily needs, making decisions, or saying goodbye to them. This can be very hard and stressful, but it can also be very rewarding and meaningful.
Understanding what happens when someone dies and how we can help them and ourselves is important. We can learn about the common signs and stages of dying and how to provide comfort and support to the person and their loved ones. We can also learn how to cope with our feelings and needs and seek help when needed.
We are not alone in this journey. Many people and organizations can help us, such as doctors, nurses, hospice workers, counselors, clergy, friends, family, or support groups. They can give us information, advice, care, or comfort. They can also share their experiences, stories, and tips with us.
We can honor the memory of the person who died and celebrate their life. We can also find hope and joy in our own life. We can survive and thrive after a loss.
