The Journey

If you’re reading this guide, it’s probably because someone you care about deeply has ALS.

This guide will help you to help your loved one through the progression of the disease. It also will help you with your own journey as an ALS caregiver.

Being a caregiver for a person with ALS is emotionally and physically strenuous, but also deeply rewarding in highly personal ways. It’s different from caring for a person with any other disease, and may be far more emotionally and physically demanding than other caregiving journeys. ALS caregivers have called the experience life-changing and found that it strengthens character, deepens compassion and brings relationships to new levels of love and trust.

And it’s really hard work. It involves learning about new tasks and equipment, while going through the emotions that arise when a loved one has a progressive, debilitating illness. These pages contain practical and emotional strategies for being an effective caregiver. The MDA ALS Caregiver’s Guide is meant to give guidance, assistance and advice in many aspects of caring for a person you love who has ALS.

It’s full of references to other websites, publications, articles or organizations where you can go to find out more about a specific topic or product. And it’s laced with quotations from other caregivers and people with ALS, meant to show you that others have dealt with everything you’re facing, and they’ve felt the same fears, despair, exhaustion and hope that you’ll be experiencing in this part of your life. You’ll read many comments from people about the happiness and satisfaction they’ve found while living with ALS.

Resourceful caregivers have come up with ingenious solutions to their challenges. Not every suggestion works for every caregiver; sometimes you’ll find a better idea than those mentioned here. Because caregiving is an ongoing, organic, creative process that’s a little bit different for everyone engaged in it, this book can’t include every possible idea. But we hope it provides a platform from which you can think creatively as well as information to get you started and many places in which to look for more solutions.

The primary family caregiver is the care coordinator for the loved one with ALS, the manager of the loved one's medical, social, financial and cultural life. The issue you'll face as primary caregiver will challenge you and your family in ways you've probably never before encountered. You'll make many personal decisions that will affect all of those close to you and your loved one. Along the way, you’ll interact with health care professionals, agencies, insurance companies and many other entities.

A good way to start your journey might be to hold a family meeting (including the person with ALS) and discuss who can cover which caregiving tasks, and how care for your loved one with ALS will be coordinated. One person — usually the spouse, but sometimes a parent or an adult child, sibling or other loved one — becomes the primary caregiver. Other caregivers should treat this person as the leader, the one who coordinates and keeps track of the loved one’s many needs.

Those needs will change, sometimes rapidly, so more tasks will need to be assigned and your list of caregivers and helpers will grow. From the beginning, think of caregiving as a group endeavor, not something to be done by a single person — otherwise, burnout and collapse are more likely.

No doubt you’ve heard it said you must “care for the caregiver.” This isn’t an empty phrase. You must find a balance that allows you to give quality care to your loved one and still maintain your emotional and physical strength. This means that in the course of your journey, you’ll need to find other people to help.

This guide offers strategies for maintaining your strength and finding help.

It frequently refers to MDA’s Everyday Life with ALS: A Practical Guide. Everyone with ALS who’s registered with MDA is entitled to a free copy of Everyday Life from their local MDA office. These two books are meant to be used together. Everyday Life focuses on practical strategies and equipment, and is written for the person with ALS, though of course its information is invaluable for caregivers as well. Everyday Life covers: equipment for daily living, saving energy, home modification, equipment for mobility, speech and respiratory issues, transfers and exercise.

In the MDA ALS Caregiver’s Guide, the approach is a little different. This book is geared to what caregivers need to know, including how to know when some aspect of your loved one’s condition has reached a crisis stage, and provides answers to what caregivers can do at various points for their loved ones with ALS.

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A brief outline

Chapter 1: The ALS Caregiver — What is ALS, and what is the ALS caregiver’s role?

Chapter 2: Daily Care of Your Loved One with ALS — A glossary or brief encyclopedia of some 60 terms and topics that are likely to come up in the course of ALS. It provides very practical tips on subjects ranging from bathing to socializing, with extensive references.

Chapter 3: Respiratory Issues — What are the signs that ALS is affecting breathing? What can be done to improve respiratory function in the early and later stages of ALS? The chapter covers handling coughing, emergencies, assisted ventilation and more.

Chapter 4: Communication Issues — How does losing the ability to talk affect self-concept and relationships with family? There are solutions ranging from paper and pencil to role adjustments and dedicated computers.

Chapter 5: Nutrition Issues — Maintaining good nutrition is important in any condition of health. Here’s information on nutrition, choking, feeding tubes, etc.

Chapter 6: Emotions — Everyone in the household and the community of someone with ALS is affected by the disease. This chapter advises on coping with your loved one’s emotions, your emotions, the family’s emotions, children, extended family and friends, and finding support systems.

Chapter 7: Financial, Legal and Medical Issues — Here are tips and references on finding funds, government assistance programs, insurance, low-cost equipment, power of attorney and more.

Chapter 8: Finding Caregiving Help — Help is available from agencies, friends, families and other sources. What should you ask for, and how can the caregiver find some respite? When do you consider a nursing home or hospice?

Chapter 9: End-of-Life Issues — Read this only when you’re ready to face the final stages of your loved one’s ALS, not before. As ALS progresses, some medical questions will affect survival. The chapter also looks at planning for the last days, funerals and memorials, and handling grief.

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MDA’s fight against ALS

Always remember that your primary resource on the ALS journey is MDA’s ALS Division. The staff at your local MDA office, your MDA clinic or MDA/ALS center can give you sound guidance. The families you meet at clinic and support groups are living this experience with you. Lean on them, learn from others, call them when you need to talk or need help; you’ll find others leaning on and learning from you, too.

The Muscular Dystrophy Association’s involvement with ALS began in the early 1950s when Eleanor Gehrig, widow of beloved Yankees first baseman Lou Gehrig, was searching for a way to fight the disease that had taken her husband’s life. Mrs. Gehrig served more than a decade as MDA national campaign chairman. As of July 2012, MDA has dedicated more than $307 million to ALS research, services and information programs.

MDA maintains a nationwide network of medical clinics, providing specialized medical services for people affected by any of the more than 40 neuromuscular diseases under MDA’s umbrella, including ALS. In addition, a number of clinics are designated as MDA/ALS centers.

MDA clinics and MDA/ALS centers are staffed by multidisciplinary teams of health professionals skilled in the diagnosis and medical management of ALS, including symptom control, medical interventions and therapies to help maintain the highest possible quality of life. MDA/ALS center teams may include neurologists, physiatrists, therapists (physical, occupational, speech, respiratory), nutritionists, social workers, pulmonologists, gastroenterologists and medical equipment specialists.

NOTE: For information about the nearest MDA medical services, call (800) 572-1717 or visit the Help Through Services page.

MDA’s ALS Division also offers:

• a worldwide program of ALS research that includes basic, translational and clinical research programs;
• the MDA website, which contains up-to-date information about ALS research, services, clinics, clinical trials and publications; the site also cna be used to find the nearest MDA office, clinic or MDA/ALS center, and tells how to participate in local MDA activities;
• an online ALS disease center with current, understandable information about ALS causes, symptoms, medical management, research and more;
• assistance with the cost of repairs and/or modifications to all types of durable medical equipment they require due to ALS, including wheelchairs, leg braces, communication devices and more;
• a national equipment program that assists individuals with obtaining durable medical equipment, such as hospital beds, lifts, wheelchairs, walkers, shower benches, transfer boards and communication devices; MDA gratefully accepts donations of gently used equipment;
• support and education through support groups, seminars, home visits, community outreach and advocacy, “phone friends” support and Internet chats;
• a partnership with the ALS Therapy Development Institute (forged through MDA's Augie's Quest initiative), which is undertaking the largest ALS drug development project in history; and
• publications and videos (some in Spanish), available at local MDA offices and on this website, including:
  • MDA/ALS Newsmagazine
  • Quest (magazine)
  • Facts About ALS (booklet)
  • Everyday Life with ALS: A Practical Guide (book)
  • MDA ALS Division (brochure)
  • Milestones in ALS Research (booklet)
  • “With Hope and Courage: Your Guide to Living with ALS,” video for people with new ALS diagnoses and their families

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