f you have ALS or are caring for a loved one with ALS, there are many reasons to consider hiring in-‐home help. For example, a change in condition could necessitate a higher level of skilled care, or it may be helpful to have assistance with personal care or some of the routine tasks associated with managing the household. One route is to find and hire help on your own, but a home health care agency can provide a wide range of care and support services while also handling day-‐to-‐day administrative tasks, such as managing personnel and payroll. If you’re thinking about hiring help through a home health care agency, here’s an approach for finding an agency that is a good match.
Medicare is a federally funded insurance plan that provides health insurance to people 65 years and older, as well as to younger people with certain disabilities and conditions (including ALS). Because of your ALS diagnosis, you are automatically enrolled in the Medicare program as soon as you begin to receive disability benefits from Social Security (or, if you were a railroad worker, the Railroad Retirement Board).
When you are considering home health care services, it can be helpful to know the lingo. Here is a glossary of commonly used terms in home health care.
Hiring in-‐home assistance can help you cope effectively with the everyday challenges of living with ALS, as well as relieve some of the pressure on family caregivers. But sometimes, it can be difficult to make the decision to bring on additional support. Here are some guidelines that can help you with the decision process.
People with ALS often lose their ability to speak. For some, this change happens quickly; for others, this change may be more gradual. In any case, it’s important for people with ALS to consider voice banking and/or message banking as soon as possible after diagnosis, while they still have their strongest voice possible.
ALS varies greatly from person to person and symptoms related to your breathing can start early or much later. Weakness in the muscles of respiration (breathing) can lead to a variety of symptoms.
Dressing and undressing are often challenging task among people with limited mobility. While buttons and zippers are frustrating for some folks, others may find reaching arms through armholes of putting legs through leg holes tedious chores. Besides the obstacles people face for dressing independently, it is not always easy for their assistants. Wearing accessible clothes and selecting attire to meet individual needs will make dressing easier, sparing unnecessary aggravation and fatigue.
Driving an automobile is an economic, social, and recreational necessity for most Americans. A privilege most teens seek, driving soon occupies a central role in the lives of most adults. For people with medical problems, such as ALS, conflicts may arise in balancing self-reliant driving privileges and society's need to protect public safety.
Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans with ALS, emergencies such as fires, floods and acts of nature present a real challenge. It is important that people with ALS and their family members make plans to protect themselves in the event of a disaster. This needs to be addressed not only at home, but also when away from home, such as at work or on vacation.
People with ALS are already at increased risk for respiratory problems associated with viral and bacterial infection, and the flu can deliver a harsh blow. The flu season in just around the corner and can start as early as October, the most beautiful month of the year. The flu can cause decreased appetite and a severe cough, both of which are significant problems for people with ALS. Importantly, about 90% of the deaths due to the flu occur in persons older than 65 years, the same age group of many of our ALS patients. So "yes," you need a flu shot.