Caring for someone with ALS typically requires a collaborative effort among several types of caregivers, including family members, nurses, physicians, and therapists. Fortunately there are many ways that home caregivers can help deal with the debilitating nature of ALS. Although the intensity of care will increase with the progression of the disease, a high quality of life isn’t out of reach for those with the right assistance.
What is ALS?
Also referred to as Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease of the spinal cord and brain. The progressive degeneration of ALS causes motor neurons to be destroyed, preventing muscle fibers from receiving instructions from the brain. Typically, the early stages of ALS are only moderately debilitating. Gradually, the disease becomes more debilitating, ultimately culminating in total paralysis.
Over 6,000 people are diagnosed with ALS every year in the United States alone, with symptoms usually appearing between the ages of 45-65. According to the ALS Association, the average duration of survival after diagnosis is between two and five years, with as many as 10% surviving a decade or longer.
Caregivers and ALS
Nobody wants to be made powerless, but that’s precisely what those who suffer from ALS face on a daily basis. The terminal and degenerative nature of ALS can have a powerful psychological impact, which is why home caregivers work not only to maintain the health of a patient, but to create a high quality of life and sense of independence for those who need it most.
Unfortunately, it’s difficult to anticipate the kind of day-to-day care that will be needed by someone suffering from ALS, because that care will depend on how the patient’s symptoms progress. The far reaching nature of this disease means that virtually every aspect of life can be affected. As a consequence, ALS home care is often comprehensive in scale, including assistance with the kind of everyday activities that gradually make life more difficult, like bathing, dressing, driving, exercising, and socializing.
In the early stages of ALS, caregivers can help patients maintain their independence with mobility devices, like canes, wheelchairs, and lifts, enabling your loved one to remain connected with the rest of the world. As the disease continues to progress, the ability to speak can be lost; but that doesn’t necessarily mean losing the capability to communicate. Caregivers can provide numerous assistive devices that can help facilitate communication in even the final stages of ALS.
Top to Bottom Care
When the muscles that control respiration are progressively weakened, breathing becomes difficult. ALS patients may find they’re unable to sleep and wake up fatigued or with a headache. As moderate and severe symptoms like this begin to manifest, health care professionals can help alleviate these symptoms by offering breathing masks and ventilators. Similarly, as it becomes difficult to swallow food, caregivers can provide processed food to aid digestion.
As for day to day life, caregivers are able to intervene and assist with the daily activities as they become more difficult. For example, a loved one with ALS may have an easier time with bathing by installing handrails, shower chairs, and mobile showerheads in a home bathroom. And as more care is needed, caregivers can take on oversight of maintaining personal hygiene, including everything from tooth brushing to shaving.
It’s hard to overstate how obstructive ALS can be to the activities of daily life, but with the right help, seniors with ALS care can continue to live rich and full lives.
How have you helped your loved one work around their ALS? Share your tips with us in the comments below.
For more information, please review our Amyotrophic Lateral Sclerosis (ALS) Resources.