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.
“I will forever treasure the time I was able to spend with my mom during her illness. I learned so much about strength, courage and grace from her. There were tough times (mostly due to my impatience!) but the good times were extraordinary!”
“I was worried about everything that people worry about in this situation. How would I take care of my husband? How would I keep my job? How does this disease unfold? How will I know what to do? How will this affect our son? Will my insurance be enough? Will we become destitute? Will I be strong enough to support him through this? Will I be physically strong enough to even move him? Will we be able to plan for the future? All the questions that people lose sleep over were the questions that plagued me day and night.”
“It’s been nine years since Glenn was first diagnosed. I have changed. I discovered that I have faith in myself. I can trust my instincts, and I believe in my basic selfworth. I understand better who I am and what I’m doing with my life, and that is what really matters.” — Caregiver’s Reprieve, by Avrene Brandt, Impact Publishers, 1998
“As caregivers, we have the potential to burn out both emotionally and physically. My biggest piece of advice is: Don’t! I wore myself out, and that caused my husband more anguish.”
“I’m probably the most fortunate man in the world to have such a wonderful, wonderful wife who’s given her life in raising our family and in helping other people so much. Now I have an opportunity to return to her all the kindnesses that she’s done for our family in taking care of her.”
“I’m not “saving” anything; we use our good china and crystal for every special event such as losing a pound, getting the sink unstopped or the first amaryllis blossom.”
“To be able to care for someone or to be needed is a pretty good high. There were good times and a few bad times — usually 3 a.m. and no matter how I placed the pillows he wasn’t comfortable. The bad times were few and far between. We caregivers are the lucky ones: You will never be a burden, let us have the good feeling by taking care of you. Besides, maybe we will find the cure soon. Every day is one day closer to the cure.”
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.
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.
“You, our dearest loved ones with ALS, you are the Teacher. You are teaching us lessons of life. To Live. To take each day and be strong. Never ever feel you are a burden. You are giving a meaning, a purpose to all of us, your families, to understand what it is to truly care, to love and to embrace your gentle beings and to understand. I thank you.”
“Suddenly your lives are turned upside down and there is more unknown than known.”
“I’ve been ill this week and not being able to give 110 percent really really scares me. If I won the lottery I’d make a place for all of the caregivers to go to, a warm, dark quiet comfortable spa where we could all go just to rest!”
“Long-term ALS survivors have somebody they love and who loves them. Survivors know they have great value to another person. They feel it’s their responsibility to do what it takes to continue to live because someone needs them.”
“Caregivers are our angels on earth. My wife, bless her, has been my sole caregiver for almost 18 years now.”
“My wife. I can’t even imagine what my life would be like right now without her. She lights up my life in ways she can’t even see.”
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.