Caregiving for someone with ALS

Caregiving for someone with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) can be demanding, and it often becomes more demanding over time.

ALS is a progressive nervous system disease that causes loss of muscle control. In the early stages, this can result in symptoms like slurred speech, muscle twitching, and weakness in limbs. Over time, ALS can make it difficult for a person to speak, eat, move, and breathe normally.

The term “caregiver” can refer to loved ones who are assuming caregiving responsibilities as well as professional caregivers (such as home healthcare workers). Here, we will be focusing on loved ones who are caring for a family member who has ALS, who are sometimes called “family caregivers.”

The responsibilities of a caregiver

When people hear the word “caregiving,” they often think of the practical aspects of caregiving. The practical aspects of caregiving for someone with ALS may include taking the person to healthcare appointments, running errands, preparing meals, managing paperwork, and walking or feeding pets.

In addition to these tasks, caregivers often provide emotional support and companionship during a time when a person is coping with all the challenges of living with a diagnosis of a serious and progressive disease. In some circumstances, a caregiver may help make decisions about a family member’s treatment and care.

Because ALS is a progressive illness, the role of a caregiver will involve different responsibilities at different times.

Caregivers need to take care of themselves, too

When you are taking care of another person, it can become increasingly difficult to attend to your own needs. Many caregivers experience what is called “caregiver burnout.” A person experiencing burnout will feel exhausted—physically, mentally, emotionally. They may begin to have negative thoughts and feelings about their role as a caregiver.

Every caregiver should take steps to avoid burnout. Here are some strategies that may help:

• Stay organized. From medication to healthcare appointments to physical therapy, there can be a lot of important details to manage. It’s a good idea to have a calendar with all your appointments and responsibilities in one place. This can help you find time for yourself, too.
• Set aside time that isn’t about ALS. Find time when you can do something enjoyable with your loved one, such as sharing a meal or watching a movie. This will be good for both of you.
• Connect with others. Consider joining a support group for other caregivers. Other caregivers can provide you with tips and support, and can also help you cope with stress, difficult emotions, and challenges of caregiving.
• Don’t discount your own stress. Stress will be something you experience as a caregiver, and it’s important to find ways to manage and counteract stress. These may be as simple as taking time to do something you enjoy or spending time with friends. Exercising, eating well, and getting enough sleep are also essential.
• Consider working with a mental health professional. Many caregivers experience symptoms of depression and anxiety. Working with a counselor or therapist can help you identify and address difficult moods, emotions, and thoughts. They can also help you cope with the complicated emotions that occur when a person you love has a serious illness.
• Ask for help. Caregiving is often too much for one person to do alone. Ask friends and family for help. Even having help with small errands or tasks can make a difference. If you do not have a support network, ask your loved one’s healthcare providers about local volunteers, or check with organizations like the ALS Association, who may be able to put you in contact with someone who can help.

Many caregivers feel guilty about taking time for themselves. Remember that caring for yourself allows you to be a better caregiver—and helps you be the best version of yourself at a time when a loved one needs your help.