Understanding Protein-Calorie Malnutrition: A Guide for Families

Published on January 15, 2024

Updated on January 15, 2024

Having a loved one diagnosed with terminal Protein-Calorie Malnutrition () can be overwhelming and emotionally challenging. As an experienced with extensive experience, I'm here to help you understand what to expect during this difficult journey. This article aims to provide compassionate and informative guidance to families caring for a terminally ill individual with Protein-Calorie Malnutrition, from the onset of the disease until the end of life.

What is Protein-Calorie Malnutrition?

Characteristics For Severe Malnutrition
Source 5 Things Practitioners Need to Know About Malnutrition

Protein-Calorie Malnutrition (PCM) is a condition where the body does not receive enough protein and calories to maintain proper health and functioning. It is common among terminally ill patients due to numerous factors such as reduced appetite, difficulty eating, and a weakened immune system. As the body loses its ability to absorb nutrients, the patient becomes more vulnerable to and other complications.

Protein-Calorie Malnutrition (PCM) can be an admitted terminal diagnosis for hospice; and like many disease processes can stand by itself or be a part of a mixture of diseases as to why a loved one becomes extremely sick.

Recognizing the Symptoms

As the disease progresses, your loved one may experience various symptoms. Being aware of these changes will help you provide the best possible care and comfort:

  1. Weight Loss: You may notice that your loved one is losing weight without trying. They may look thinner and weaker than before. Their clothes may become loose, and their bones may stick out. This is because their body is using up its own fat and muscle for energy.
  2. Fatigue and Weakness: You may notice that your loved one is more tired and less active than before. They may have trouble doing things that they used to enjoy, such as playing, working, or studying. They may also have difficulty walking, standing, or lifting things. This is because their body does not have enough energy to function properly.
  3. Changes in Appetite: You may notice that your loved one is eating less than before. They may not feel hungry, or they may feel full after eating a small amount. They may also have trouble swallowing, chewing, or tasting food. They may lose interest in food or have cravings for certain foods. This is because their body is not getting enough nutrients from the food they eat.
  4. Muscle Wasting: You may notice that your loved one's muscles are getting smaller and weaker. They may have trouble moving their arms, legs, or other parts of their body. They may also have pain or cramps in their muscles. This is because their body is breaking down its own muscle tissue for energy and protein.
  5. Edema: You may notice that your loved one's legs, ankles, or feet are swollen and puffy. They may also have swelling in their face, hands, or abdomen. This is because their body is holding on to too much fluid. This can happen when their body does not have enough protein to keep the fluid in the blood vessels.
  6. Mood Changes: You may notice that your loved one is more irritable, sad, or depressed than before. They may have trouble sleeping, concentrating, or remembering things. They may also lose interest in things that they used to like or have mood swings. This is because their body is affected by the lack of nutrients and hormones that regulate their emotions.
  7. Increased Susceptibility to : You may notice that your loved one gets sick more often than before. They may have fever, cough, diarrhea, or other signs of infection. They may also take longer to heal from wounds, cuts, or bruises. This is because their immune system, which fights off germs, is weakened by the lack of protein and calories.

Caring for Your Loved One: Practical Tips

During this challenging time, your support and care can make a significant difference in your loved one's quality of life. Here are some practical tips to provide the best possible care:

  1. Nutrition and Hydration: Food and water are especially important for your loved one's health. They need to eat and drink enough to get the protein and calories they need. You can help them by offering them small meals and snacks that have a lot of nutrients, such as eggs, cheese, yogurt, nuts, peanut butter, or smoothies. You can also make the food softer or pureed if they have trouble swallowing or chewing. You can help them drink more water by giving them small sips throughout the day. You can also offer them other fluids they like, such as juice, milk, tea, or soup. Avoid giving them alcohol, caffeine, or sugary drinks, as they can make them dehydrated or lose their appetite. Please remember there's a difference between encouraging someone to eat and drink, and forcing them to eat and drink. Always respect any statement or body language indicating the patient is not hungry.
  2. Comfort and Dignity: Your loved one may feel pain, , or distress because of their condition. You can help them by making sure they are comfortable and have access to pain medicine as needed. You can also help them by keeping them clean and dry, changing their clothes and bedding regularly, and helping them with their personal hygiene, such as brushing their teeth, washing their face, or combing their hair. You can also respect their dignity and preferences by asking them what they want or need and letting them make their own choices as much as possible. For example, you can ask them what they want to wear, what they want to eat, or how they want to spend their time.
  3. Emotional Support: Your loved one may feel sad, scared, angry, or lonely because of their condition. You can help them by being there for them emotionally. You can offer them a listening ear and let them express their feelings without judging them. You can also provide them with reassurance and comfort by telling them that you love them, that you are proud of them, and that you are here for them. You can also hug them, hold their hand, or touch them gently if they like. You can also help them cope by encouraging them to do things that make them happy, such as reading, watching TV, playing games, or talking to friends or family.
  4. Assist with Mobility: Your loved one may have trouble moving around because of their weakness or fatigue. You can help them by assisting them with their mobility, whether it's transferring from a bed to a chair, using a walker or wheelchair, or taking short walks if possible. You can also help them by making sure their environment is safe and accessible, such as removing any clutter, rugs, or cords that may cause them to trip or fall. You can also help them by providing them with devices or equipment that can make their movement easier, such as a cane, a lift, or a rail.
  5. Create a Calm Environment: Your loved one may feel more relaxed and peaceful if their environment is calm and comforting. You can help them by adjusting the lighting, temperature, and noise level to their liking. You can also help them by playing soothing music, reading to them, or praying with them if they wish. You can also help them by displaying items that are meaningful or sentimental to them, such as photos, cards, or gifts. You can also help them by keeping their room clean and organized, and making sure they have everything they need within reach, such as a phone, a remote, or a glass of water.
  6. Coordinate with the Hospice Team: Your loved one may benefit from the care and support of the hospice team, which includes the and other professionals, such as a doctor, a , a , or a . You can help them by working closely with the hospice team and communicating with them regularly. You can also help them by following their instructions and recommendations and asking them any questions or concerns you may have. You can also help them by letting them know about any changes in your loved one's condition, symptoms, or needs. You can also help them by accepting their help and support and taking care of yourself as well.

Understanding End-of-Life Signs

As Protein-Calorie Malnutrition reaches its final stages, your loved one may exhibit certain end-of-life signs. These signs indicate that the body is gradually shutting down. Some common signs include:

  1. Reduced Responsiveness: As your loved one gets closer to death, they may become less aware of their surroundings and less interested in talking or interacting with others. They may also sleep more, and it will be harder to wake up. This is because their brain is getting less blood and oxygen, and their body is shutting down. You can still talk to them, hold their hand, or play their favorite music, as they may still hear you and feel your presence.
  2. Changes in Breathing: You may notice that your loved one's breathing changes as they approach death. They may breathe faster or slower, deeper or shallower, or have pauses between breaths. They may also make noises when they breathe, such as gurgling, rattling, or wheezing. This is called the “” and it happens when saliva or mucus builds up in their throat or chest. This is not painful or distressing for them, but it may be upsetting for you to hear. You can help them by raising their head, turning them on their side, or gently wiping their mouth with a moist cloth. You can also ask the hospice team for medications or devices that can make their breathing easier.
  3. Cooling of Extremities: You may notice that your loved one's hands and feet feel cold to the touch, even if the rest of their body is warm. Their skin may also look pale, bluish, or mottled (with purple or red patches). This is because their heart is pumping less blood to their limbs and more to their vital organs, such as the brain, heart, and lungs. This is a normal part of the dying process, and it does not mean that they are cold or uncomfortable. You can keep them warm with blankets, socks, or gloves, but do not use electric blankets or heating pads, as they may burn their skin.
  4. Decreased Urine Output: You may notice that your loved one urinates less often or not at all as they near death. Their urine may also be darker or more concentrated. This is because their kidneys are not working as well, and their body is trying to conserve water and energy. This is not harmful or painful for them, but it may increase the risk of infection or bladder problems. You can help them by keeping them clean and dry, changing their diapers or pads regularly, and applying cream or powder to prevent rashes or sores. You can also ask the hospice team for catheters or other devices that can drain their urine.
  5. Changes in Skin Color: You may notice that your loved one's skin color changes as they approach death. Their skin may look pale, gray, yellow, or ashen, depending on their ethnicity, health condition, and medication use. This is because their blood pressure drops and their blood flow decreases, resulting in less oxygen and nutrients reaching their skin. This is not a sign of pain or suffering, but it may indicate that death is near. You can still touch them, massage them, or apply lotion to their skin, as they may still enjoy your touch and care.

Embracing the End-of-Life Journey

When someone you love is dying of Protein-Calorie Malnutrition, it can be extremely hard and sad. You may feel many different emotions, such as anger, fear, guilt, or grief. You may also have many questions, such as why this is happening, what will happen next, or how you can help. These are normal feelings and thoughts, and you are not alone.

One of the best things you can do for your loved one is to be there for them and support them. This means that you show them that you care and that you are with them until the end. You can do this by:

  • Surrounding them with love and compassion: You can show your love and compassion by spending time with them, talking to them, listening to them, or just being silent with them. You can also hug them, hold their hand, or touch them gently if they like. You can also tell them that you love them, that you are proud of them, and that you are thankful for them. You can also share memories, stories, or jokes that make them happy or laugh.
  • Honoring their wishes: You can honor their wishes by respecting their choices and decisions about their care and their death. You can also help them fulfill their goals or dreams, such as seeing a special place, person, or thing, or doing something they enjoy. You can also help them say goodbye to their friends and family or make peace with anyone they have problems with. You can also help them with their spiritual or religious needs, such as praying, meditating, or reading sacred texts.
  • Ensuring a peaceful and meaningful transition: You can ensure a peaceful and meaningful transition by making sure they are comfortable and pain-free. You can also make their environment calm and soothing by adjusting the lighting, temperature, and noise level. You can also play their favorite music, read to them, or sing to them if they wish. You can also display items that are important or sentimental to them, such as photos, cards, or gifts. You can also help them create a legacy, such as writing a letter, making a video, or donating to a cause.

By doing these things, you can help your loved one have a , which means that they die with dignity, comfort, and peace. You can also help yourself and your family cope with the loss and heal from the grief. Remember that you are not alone, and that you can get help and support from the hospice team, other professionals, or support groups.

Conclusion

Protein-Calorie Malnutrition is a serious condition that affects many terminally ill patients. It can cause various physical and emotional symptoms that can reduce the quality of life of your loved one. As a family caregiver, you can provide the best possible care and comfort by being aware of these symptoms and following some practical tips. These include ensuring adequate nutrition and hydration, managing pain and , providing emotional support, and seeking professional help when needed. Remember that you are not alone in this journey. There are many resources and services available to help you and your loved one cope with this challenging condition. By working together with your loved one, your health care team, and other supportive people, you can make the most of the time you have left with your loved one.

Resources

Protein calorie malnutrition, nutritional intervention and personalized cancer care

Understanding Protein Calorie Malnutrition

5 Things Practitioners Need to Know About Malnutrition

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

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The Art of Dying

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Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

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