Decades of research on the neurotransmitter glutamate have produced promising results that could lead to treatment for Amyotrophic Lateral Sclerosis (ALS). Scientists believe excessive exposure to glutamate may be one of the reasons that nerve cells (motor neurons) die in ALS. Preventing the rise of glutamate levels could be the key to protecting motor neurons and impeding the progress of the disease.
Hospice is a model of care that focuses on providing physical and emotional comfort to people who are dying, and on supporting their families, during the end-of-life period.
Respite is a service that provides family caregivers with time away from their caregiving responsibilities. Everyone needs “me” time to relax and reboot - this is especially true for family caregivers, who are often stretched thin emotionally as well as physically by the increased demands illness places on the family. Respite gives the caregiver a chance to meet his or her own needs, which benefits both the caregiver and the care recipient.
It can be difficult to plan for the future when you are focusing on living in the present. But giving thought to what lies ahead can help you live your best life now and provide you, and your family members, with peace of mind going forward.
When you hire in-home help, either through an agency or on your own, you automatically become an employer and a supervisor. These may be roles you are comfortable with, but for many people, managing the relationship with in-home service providers is unfamiliar territory. The people who assist you are integral members of your health care team, so you want to do everything you can to ensure that they are able to do their jobs effectively. You already took the first step to achieving a good long-‐term working relationship when you took care to hire the agency or person you felt was right for the job.
Adapting your living environment to meet your changing needs will become a necessity as the ALS progresses. Environmental modifications can help you to stay safe and retain your independence for as long as possible. They can also lower your caregiver’s risk for injury, by making tasks such as assisting with transferring and repositioning less physically taxing.
At some point during your journey with ALS, in-home help will most likely become a necessity. Many families choose to use a home health agency or a non-‐medical home care (companion) agency to match them up with suitable employees and coordinate the delivery of services. Other families opt to hire help independently, using personal referrals or an employment (registry) agency. The difference between an employment agency and the other types of agencies is that an employment agency simply matches clients with qualified providers - it does not handle any of the responsibilities of an employer, such as coordinating and overseeing the delivery of services, managing payroll and taxes, or providing ongoing training for employees.
As you live your life with ALS, you will most likely be supported by many different home care workers, each responsible for providing specific types of care and services to you. Here’s a review of the various types of workers who could be on your home support team.
For most families living with ALS, in-‐home care becomes a necessity at some point. The expenses associated with in-‐home help can add up quickly. Public insurance plans (such as original Medicare and Medicaid) and private insurance plans (such as Medicare Advantage, an employer’s health insurance plan, or long-‐term care insurance) may help to cover some of the costs associated with in-‐home help, but most of the financial burden is usually borne by the family.