Understanding Amyotrophic Lateral Sclerosis (ALS) and What to Expect: A Guide for Families

Published on December 11, 2023

Updated on December 10, 2023

Caring for a family member with Amyotrophic Lateral Sclerosis (ALS) can be a challenging and emotional journey. Understanding the symptoms, managing pain and , and providing emotional support are crucial aspects of caregiving for individuals with ALS. This aims to provide families with valuable insights into the progression of ALS and the essential strategies to support their loved ones through this difficult time. By addressing the physical and emotional needs of both the patient and the caregiver, we hope to empower families with the knowledge and resources necessary to navigate the complexities of ALS with empathy and .

What is ALS?

Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease, is a rare and devastating condition that affects the nerves in the brain and spinal cord. It gradually leads to the loss of muscle control, affecting movement, speaking, swallowing, and breathing.

The Course of ALS

ALS typically follows a pattern of progression, which may vary from person to person. Here are the main stages:

  1. Early Stage: At the onset of the disease, your loved one may experience muscle weakness, cramps, or twitching. Tasks that once seemed easy might become more challenging, but they can still walk and perform daily activities independently.
  2. Middle Stage: As ALS progresses, muscle weakness intensifies, making mobility and self-care tasks difficult. Your loved one might need assistive devices, such as a walker or wheelchair, to move around safely. Speech and swallowing may also be affected, necessitating communication aids and dietary modifications.
  3. Advanced Stage: In the later stages, your loved one's muscles may continue to weaken, affecting their ability to move, speak, or breathe effectively. At this point, they will require significant assistance with all aspects of daily living.

Changes in Your Loved One

As ALS advances, your loved one may experience various physical and emotional changes. Here are some of the common changes you might observe:

  1. Muscle Weakness: One of the changes that ALS causes is muscle weakness. Your loved one may have trouble moving their arms, legs, and other parts of their body. This can make it hard for them to do daily activities like dressing, bathing, eating, and using the bathroom. They may also need a wheelchair, walker, or other devices to get around. You can help your loved one by providing physical assistance and support when needed, making sure they are comfortable and safe, encouraging them to do as much as they can by themselves, and respecting their choices and preferences.
  2. Speech and Swallowing Difficulties: Another change that ALS causes is speech and swallowing difficulties. Your loved one may have slurred speech, low voice, or trouble finding words. They may also have difficulty eating and drinking and may choke or cough. This can affect their nutrition, hydration, and communication. You can help your loved one by using simple and clear words when talking to them, asking yes or no questions or using gestures or writing if they can't speak, being patient and attentive when listening to them, giving them soft, moist, and easy-to-swallow foods and drinks, and helping them use a feeding tube if needed.
  3. Breathing Issues: A third change that ALS causes is breathing issues. Your loved one may have , trouble sleeping, or fatigue. They may also need a machine to help them breathe, called a ventilator. This can affect their quality of life and comfort. You can help your loved one by monitoring their breathing and oxygen levels, helping them use a ventilator or other breathing devices if needed, keeping their head and chest elevated when lying down, making sure they are comfortable and relaxed, and talking to their doctor about their wishes and goals for end-of-life care.
  4. Fatigue: A fourth change that ALS causes is fatigue. Your loved one may feel very tired and weak. They may not have the energy to do the things they used to enjoy. They may also have trouble sleeping or staying awake. This can affect their mood and well-being. You can help your loved one by helping them plan their day and prioritize their activities, encouraging them to rest when they need to, providing them with entertainment and stimulation, supporting them in their hobbies and interests, and helping them stay connected with their friends and family.
  5. Emotional Changes: A fifth change that ALS causes is emotional changes. Your loved one may feel sad, angry, scared, or hopeless. They may also have changes in their personality, memory, or thinking. This can affect their relationships and mental health. You can help your loved one by being there for them and listening to their feelings, showing them love, care, and respect, helping them find meaning and purpose in their life, seeking professional help if they have signs of depression or , and joining a support group or counseling for yourself and your loved one.

How to Best Care for Your Loved One

Caring for someone with ALS requires , patience, and a strong support system. Here are some practical tips to provide the best care for your loved one:

Create a Safe Environment

You want your loved one to be safe and comfortable at home. You can make some changes to your home to make it easier for them to move around and do things. For example, you can remove things that they can trip over, like rugs, cords, or clutter. You can also put handrails or grab bars in the bathroom, bedroom, and stairs. You can use a ramp or a lift if they have trouble with steps. You can make sure there is enough light in every room. You can also use a bed that can be raised or lowered.

You can also use some devices that can help your loved one with their daily activities. These devices are called assistive devices.

Assistive Devices

Assistive devices are things that can help your loved one do things by themselves or with less help. They can also make them safer and more comfortable. Some examples of assistive devices are:

  • A wheelchair, walker, or cane to help them move around.
  • A lift or a sling to help them get in and out of bed or a chair.
  • A shower chair, a bath bench, or a handheld shower to help them bathe.
  • A raised toilet seat, a toilet frame, or a commode to help them use the bathroom.
  • A headrest, a neck brace, or a pillow to support their head and neck.
  • Special utensils, cups, or plates to help them eat and drink.
  • A feeding tube to give them food and water if they can't swallow.
  • A breathing machine, a mask, or a tube to help them breathe.

You can work with your loved one's healthcare team to find out what assistive devices they need and how to get them. The healthcare team includes doctors, nurses, therapists, and social workers who can help you and your loved one with ALS.

Communication

Communication is very important for your loved one and for you. You want to talk to your loved one and understand how they feel and what they want. You also want to share your feelings and thoughts with them. But ALS can make it hard for your loved one to speak or write. They may have trouble making sounds, saying words, or moving their mouth. They may also have trouble holding a pen, a phone, or a keyboard.

But there are some tools that can help your loved one communicate with you and others. These tools are called communication devices. Some examples of communication devices are:

  • A writing board, a letter board, or a picture board that they can point to or look at to spell words or show what they want.
  • An eye-gaze system that can track their eye movements and let them choose words or pictures on a screen.
  • A speech-generating device that can turn their words or symbols into speech or text.
  • A computer, a tablet, or a smartphone that they can use with a mouse, a keyboard, a switch, or a voice.

You can encourage your loved one to communicate with you and others by using simple and clear words or questions that they can answer with yes or no. You can also be patient and attentive when they are trying to say something. You can give them time to finish their sentences or thoughts. You can check if you understood them correctly and repeat what they said. You can also use gestures, facial expressions, or body language to help them understand you.

Nutrition and Hydration

Nutrition and hydration are very important for your loved one's health and well-being. They need to eat and drink enough to get the energy and nutrients they need. But ALS can make it hard for your loved one to eat and drink. They may have trouble chewing, swallowing, or keeping food or water in their mouth. They may also cough, choke, or spit up when they eat or drink. This can make them lose weight, get dehydrated, or get sick.

But there are some things you can do to help your loved one eat and drink better. For example, you can work with a dietitian to make a meal plan that has the right amount and type of food and water for your loved one. You can also give them soft, moist, and easy-to-swallow foods and drinks that they like and can tolerate. You can also cut their food into small pieces or blend it into a puree or a liquid. You can also use a straw, a spoon, or a syringe to help them drink or take medicine. You can also help them sit upright and tilt their chin down when they eat or drink. You can also check their mouth for any food or water left after they eat or drink. You can also help them clean their teeth and mouth after they eat or drink.

If your loved one can't eat or drink enough by mouth, they may need a feeding tube. A feeding tube is a small tube that goes through their nose or stomach and gives them food and water. You can work with your loved one's healthcare team to decide if they need a feeding tube and how to use it.

Pain and Symptom Management

Pain and other symptoms are common for people with ALS. They can make your loved one feel uncomfortable and unhappy. Some of the pain and symptoms that your loved one may have are:

  • Muscle pain, stiffness, cramps, or spasms.
  • Joint pain, swelling, or stiffness.
  • Headache, neck pain, or back pain.
  • Skin problems, like dryness, itching, or pressure sores.
  • Breathing problems, like , coughing, or snoring.
  • Sleeping problems, like trouble falling asleep, staying asleep, or waking up.
  • Mood problems, like sadness, anger, fear, or hopelessness.

You can work with your loved one's healthcare team to manage their pain and symptoms. They can give your loved one medicines, treatments, or therapies to help them feel better. They can also teach you how to help your loved one with their pain and symptoms at home. For example, you can massage their muscles or joints gently to ease their pain or stiffness. You can also use heat or cold packs, pillows, or blankets to make them more comfortable. You can also adjust their position or move them around regularly to prevent pressure sores or stiffness. You can also use fans, humidifiers, or air conditioners to improve their breathing and comfort. You can also make their room dark, quiet, and cool to help them sleep better. You can also play music, read books, or watch movies to help them relax and have fun. You can also talk to them, hug them, or hold their hand to show them you care and support them.

Emotional Support

Emotional support is very important for your loved one and for you. You and your loved one may have many feelings and thoughts about ALS and what it means for your life. You may feel sad, angry, scared, or hopeless. You may also feel guilty, lonely, or stressed. These feelings are normal and understandable. But they can also affect your mental health and well-being.

But there are some things you can do to help your loved one and yourself cope with your emotions. For example, you can talk to your loved one and share your feelings and thoughts with them. You can also listen to your loved one and let them share their feelings and thoughts with you. You can also show your love, care, and respect to your loved one and yourself. You can also help your loved one find meaning and purpose in their life and celebrate their achievements. You can also seek professional help if you or your loved one have signs of depression or , like losing interest in things, feeling hopeless, or having trouble sleeping. You can also join a support group or counseling for yourself and your loved one to connect with others who understand what you are going through.

is a type of care that gives you a break from caring for your loved one. Caring for someone with ALS can be very hard and tiring. You may feel exhausted, overwhelmed, or burned out. You may also have less time or energy for yourself, your family, or your friends. This can affect your health and happiness.

But respite care can help you take some time off from your caregiving duties and do something for yourself. You can use respite care to rest, relax, have fun, or take care of other things. Respite care can be for a few hours, a few days, or longer. You can get respite care from family members or friends who can look after your loved one for a while. You can also get respite care from volunteers or paid caregivers who can come to your home and help you with your loved one. You can also get respite care from agencies or organizations that can provide home care, adult day care, or residential care for your loved one.

If your loved one is on hospice, respite care is a benefit that you can receive every single period. Hospice is a type of care that helps people who are in the last stage of their life. Hospice can provide medical care, emotional support, and spiritual guidance to your loved one and your family. You can work with your loved one's healthcare team to decide if they need hospice and how to get it.

Conclusion

Caring for a loved one with Amyotrophic Lateral Sclerosis (ALS) is a challenging journey that requires compassion, patience, and a strong support system. Understanding the stages and changes associated with ALS, creating a safe environment, utilizing assistive devices, facilitating communication, ensuring proper nutrition and hydration, managing pain and symptoms, providing emotional support, and considering respite care are essential aspects of caregiving for individuals with ALS.As a , I encourage you to approach this journey with empathy and understanding, respecting your loved one's choices and preferences while seeking professional help when needed. Remember, you are not alone in this journey. Seeking support from healthcare professionals, joining support groups, and considering respite care can help you navigate the challenges of caring for your loved one with ALS. Your dedication and care play a crucial role in providing comfort and support throughout this journey.

Resources

ALS Association

National Institute of Neurological Disorders and Stroke – ALS Information Page

ALS (Lou Gehrig's Disease) – Symptoms and Causes

What Is Amyotrophic Lateral Sclerosis (ALS)? A progressive neurological disorder also called Lou Gehrig's disease

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

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

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Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

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