Caring for a Loved One with ALS or MS

mother and daughter smiling
June 4th, 2014

Multiple sclerosis (MS) is a multifaceted neurological condition affecting the central nervous system. As the central nervous system controls all bodily functions, symptoms such as muscular weakness and atrophy, sensory changes, imbalance, and pain can be present. Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, affects the motor neurons in the brain and spinal cord that control the voluntary muscles throughout the body. This deprivation of nerve impulses to the muscles causes them to atrophy, and eventually the person affected becomes incapable of making or controlling voluntary muscle movements. As both of these diseases progress, they can severely affect a person’s mobility.

There is currently no cure for MS or ALS, and most people with these diseases will eventually require both emotional and physical support from family and friends. As each of the conditions varies in complexity from person to person, so too does the care required. As a caregiver, you may be required to carry out tasks that the person you care for was previously able to do on his own, such as food preparation, feeding, and assistance with hygiene and mobility.

Although providing emotional and physical care for someone with MS or ALS can be a profound experience, it can also be challenging. The pressure of managing caregiving with other responsibilities can initiate very powerful feelings of guilt, depression, or anger. To be a successful caregiver, you must take care of yourself in addition to your loved one.

Manage Your Stress
Many caregivers may not get adequate personal time, which can decrease your coping and stress management abilities. It is important to take care of yourself both physically and emotionally. Low-impact exercise, creative activities, humor, and social or family events are great ways to help alleviate stress and stay healthy.

Create a Support Network

Caregivers do amazing work in caring for their loved ones. Recognize your importance and the value of the job you’re doing. Create networks and support systems with other caregivers, family members, and friends to gain and share answers to questions about common caregiving experiences.

Educate Yourself
Knowledge is your most powerful weapon as a caregiver. Get as much information as possible about ALS, MS, and the art of caregiving. The more you know, the more equipped you will be in giving care and support.

Get Mobility Assistance

You may need to help with providing mobility assistance such as walking, transporting, and getting up from a chair. Recognize the limits of your own strength and endurance, and enlist the help of assistive devices. Assistive devices such as wheelchairs, walkers, and transfer vests are designed to help you safely move your loved one with less strain on your body.

Invest in a Medical Alert System

Getting your loved one a medical alert system will help you feel assured that she is safe even when you can’t be there in person. Access to help will always be just the push of a button away, and some medical alert systems will even call for help automatically if they detect a fall.

It can be physically and emotionally challenging to care for a loved one with MS or ALS, but by taking care of yourself and knowing all you can about your loved one’s condition, you can help him stay as healthy as possible.