How to Live in Comfort and Care if You Have ALS

Private duty home care plays an important role in keeping people with ALS safe in the comfort of home. Since ALS (amyotrophic lateral sclerosis)—or Lou Gehrig’s Disease—is a progressive disease, those with it often need additional care and support as their needs change over time. Being able to stay at home, surrounded by loved ones, helps bring comfort to those with this devastating disease and their families.

How can private duty home care help?

The most common home health care services for people with ALS are nursing and assistive care (personal care); however, other services such as therapy and hospice are available as well.

Nursing care services are provided by registered nurses and licensed practical nurses who specialize in home health care. They are highly experienced and knowledgeable professionals who can help you with all your care needs, ranging from management of ALS symptoms to tracheostomy and ventilator care.

Home health care nurses usually provide:

• Management of a tracheostomy, ventilator, and suctioning care
• Nutrition via a feeding tube
• Assistance with communication devices such as a tablet
• Management of bowel programs
• Assistance with mobility while managing energy reserves
• Administration of medications and treatments, including IV

Assistive (personal) care is non-medical assistance with activities of daily living when the disease has made it difficult to manage everyday tasks on your own. This type of care can be provided by specially trained home health aides, certified nursing assistants, homemakers, and companions. Many people with ALS benefit from assistive care throughout their diagnosis as their disease progresses.

Care services typically include help with:

• Communication devices, such as a tablet
• Dressing and grooming with the use of adaptive equipment, such as button hooks or zipper pulls
• Bathing and toileting
• Safe walking, repositioning, and transferring
• Meal preparation, eating, and nutrition
• Light housekeeping, such as vacuuming, dusting, washing and folding laundry, and trash removal
• Shopping for groceries and other minor errands
• Medication and appointment reminders (varies by state and practice)

Therapeutic care includes physical therapy, occupational therapy, speech language pathology, and respiratory therapy, all of which can help you manage your condition safely at home, increasing independence and comfort.

Physical therapists can provide:

• Prescriptions for a broad range of ambulatory devices such as walkers, wheelchairs, and power wheelchairs depending on the point in progression of the disease
• Range-of-motion and stretching exercises to prevent and manage pain and improve function
• Assistance with transfers using a Hoyer Lift or other equipment

Occupational therapists can provide:

• Assistance with activities of daily life by teaching and practicing new strategies for completing tasks, training on the use of adaptive devices, and providing training, evaluating the home for potential modifications
• Therapeutic interventions to help maximize functional independence

Speech language pathologists can provide:

• Assistance with communication using augmentative communication devices
• Assessment and treatment of swallowing disorders
• Recommendations to reduce the risk of aspiration

Hospice can provide a loving, respectful, and peaceful end to an otherwise difficult experience with ALS. Services include medical care and symptom and pain management as well as emotional and spiritual support to both you and your loved ones. A hospice care team usually includes nurses, physicians, therapists, social workers, and home health aides who specialize in comfort and end-of-life care.

Hospice services include:

• Nursing and physician care
• Social work and counseling
• Spiritual care based on your own values
• Bereavement support
• Respite care and companionship
• Therapies
• Palliative care

Hospice also provides medication and medical equipment and supplies related to the primary hospice diagnosis and related conditions.

Need help managing symptoms of ALS? Contact us for specialized, compassionate care.