In my work with patients who are diagnosed with amyotrophic lateral sclerosis (ALS), I find that even though one person has the condition, it affects their whole circle of friends and family, too.
If you’re the one who is going to take care of someone with ALS, there’s a heavy burden to not only learn about the disease itself, but also to understand how you can best help your friend or family member. It’s definitely a full-time job.
A diagnosis of ALS — also called Lou Gehrig’s disease — is extremely overwhelming. And then the more outward physical changes start to take place. It’s a lot to take in.
Why being a caregiver is so important
As time goes by, patients and families juggle confusing emotions, changes in the way they live their lives every day, and in the respective roles they play within their family and social circle. This is why we built our program around families, not just patients. We believe caregiver support is an essential component of patient care.
Just to clarify, an ALS caregiver is a person who helps someone with ALS take care of the things they can’t take care of themselves. As a caregiver, you may help the patient with:
- Completing daily living tasks
- Taking them to appointments
- Keeping them company
- Assisting them in making decisions that impact their care
You may also be the support they go to on bad days, and good days.
Caregiving can often be rewarding, but over time, it can take a physical and emotional toll. To prepare yourself to be an ALS caregiver, try to learn all you can about the condition, and talk to your friends or family about the role you’d like to play in their care. More importantly, don’t lose focus on yourself!
Get to know the basics of ALS
ALS is what we call a “progressive” condition that affects the nerve cells in the brain and spinal cord. These nerve cells, called motor neurons, control movement in your muscles. As your motor neurons become damaged, your muscles start to wither and deteriorate. This leads to many symptoms that worsen over time, including:
- Weakness in the arms and legs
- Stumbling or difficulty walking
- Difficulty speaking, or slurred speech
- Problems with chewing or eating
- Muscle twitches and cramps
ALS symptoms can differ from person to person, but as the disease progresses, people experience:
- Muscle paralysis
- Difficulty breathing
- Other problems that can be life-threatening
Although life expectancy after diagnosis is usually about 2 to 5 years, some people with ALS can live for many more years, especially those who have a good support system.