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.