With ALS Awareness Month upon us, we thought it relevant to explore how hospice benefits ALS patients in San Francisco and beyond. Throughout the month of May, efforts are being made to raise awareness of and foster research for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS, a progressive, fatal, neurodegenerative disorder, affects the upper and lower motor neurons, according to the CDC. There is no known cause and no cure at this time.
A Bit About ALS
First, let’s talk a bit about what ALS is. This disease was actually first discovered in 1869 by French neurologist Jean-Martin Charcot. But it took decades for the disease to reach the public eye. In 1939, Lou Gehrig brought national and international attention to the disease, ending his successful career as a beloved baseball player, according to the ALS Association. This progressive neurodegenerative disease affects nerve cells in the brain and the spinal cord. It’s this degeneration of the motor neurons that eventually causes death. That’s because when motor neurons die, the brain can’t initiate and control muscle movement. With no voluntary muscle action, patients in the final stages of the disease usually become paralyzed. As a result, they can no longer take care of themselves and may have to enter hospice for their remaining weeks and months.
When to Enter Hospice
Only a doctor, such as the patient’s neurologist or physician, can make the determination when an ALS patient is ready for hospice. However, general signs that show your loved one may be ready for hospice include:
- The patient is wheelchair- or bed-bound
- Speech is barely intelligible or completely unintelligible
- The patient needs total assistance with eating, dressing, and grooming, becoming totally dependent on others
- The patient prefers not to have feeding tubes for nutrition and hydration
- The patient prefers not to be placed on a ventilator or wants to discontinue mechanical ventilation altogether
Generally, regular hospice team meetings take place to review and develop patient treatment plans and to coordinate patient care, typically led by the patient’s ALS providers, says Mass General.
What Hospice Does for Patients with ALS
The hospice care team will stay apprised of the patient’s status and update the plan of care as those symptoms change — which can sometimes even happen daily. Hospice is designed to relieve physical and emotional distress so that patients can keep their dignity and be comfortable throughout this time. Your loved one in hospice will receive:
- Pain control: Muscle spasms, stiff joints and immobility are all common in ALS patients. Therefore, pain management is an integral part of the hospice process.
- Symptom control: The hospice care team will help your loved one suffering from difficulty breathing, swallowing, eating and drinking, as well as difficulty with communication. They can also manage symptoms related to ulcers, dementia, anxiety, and depression.
- Convenient care: The goal of hospice is to make the patient as comfortable as possible. This includes providing services wherever they want, either in the home, in a long-term care facility or in an assisted living community.
- Coordinated care: A plan of care is created between all physicians, nurses, social workers, and even clergy members should the patient request their presence. The team will also coordinate and provide all medications, supplies and medical equipment necessary to ensure patients are comfortable.
- Emotional and spiritual assistance: Hospice provides varied resources such as support groups, counseling, workshops and more for both the family and the patient.
What Hospice Does for the Family Members
Because it’s common for families to be faced with many difficult healthcare and financial decisions, it can be an extremely overwhelming and emotional time for the caregivers as well.
Hospice offers comprehensive services for families of patients with ALS:
- Caregiver education and training: Caregivers are an important part of the hospice process. As the patient gets weaker and symptoms worsen, hospice care teams can address and alleviate families’ concerns through education on how to properly provide care.
- Assist with difficult decisions: Tough choices will have to be made that impact the condition and comfort of the patient. The hospice care team can help families navigate those decisions and provide advice on how best to proceed.
- Emotional and spiritual assistance: Once the patient has passed, hospice care continues to meet the needs of surviving loved ones with resources such as bereavement support, support groups, counseling, workshops and more.
- Respite care: It can be exhausting, overwhelming and stressful to care for a loved one with ALS. Caregivers can take over when the family members need a well-deserved break for their physical and mental health.
Contact Pathways Home Health and Hospice
Pathways Home Health and Hospice has a dedicated team of caring hospice professionals in San Francisco who can help guide you through this difficult time. Contact us today at 888-755-7855 to learn more about how we can help your loved one suffering from ALS to become more comfortable.
