Providing care for a person with ALS can be challenging, especially as the disease progresses. The responsibility often falls to one or two primary caregivers, who struggle to find enough time in the day to care for their loved ones and juggle the demands of daily life, which may even include a full-time job.
Finding additional help, such as respite care, may be necessary for your long-term care plan. No matter how much love a caregiver has to offer, he or she can burn out and feel resentful.
Below are some options for providing care. The right balance and solution will look different for each family.
Home Health Services
Your neurologist may prescribe skilled nursing services or physical, occupational, or speech-language therapy. These intermittent and short-term services—if deemed medically necessary—should be covered by Medicare, Medicaid, and private insurance.
Home Care (non-medical)
Providing personal home care of a non-medical nature (assistance with dressing, eating, bathing, and other daily tasks) is often a big challenge for just one or two family caregivers. We suggest ways to organize additional help from family and friends and provide suggestions for hiring professional caregivers.
Respite care provides a much-needed break for family caregivers. It can be provided by family, friends, or paid caregivers. Respite care gives caregivers time to take care of themselves and recharge.
A small percentage of ALS patients move into living facilities or skilled facilities that provide 24/7 hospital-like care. This option is expensive, though it may be covered by Medicaid’s long-term care program or long-term care policies purchased prior to diagnosis.
Palliative care provides specialized medical care for anyone diagnosed with a serious illness. It focuses on pain management, comfort, and quality of life. Palliative care can begin at any time after diagnosis and is usually covered by insurance.
Hospice is a service that provides compassionate care and comfort for terminally ill patients at the end of life. Hospice provides a medical care team, individualized care plan, and pain management. Most people receive hospice care at home, which is fully covered by insurance.
Long-term Care Policies
If you purchased a long-term care policy prior to your symptoms and diagnosis—and have been paying your premiums—you should receive financial assistance to help pay for non-medical long-term care.
If you have a long-term care provision or rider through your life insurance policy, you should also receive financial assistance with long-term care.