In his farewell speech to his fans, famous baseball player, Lou Gehrig called himself “the luckiest man on the face of the Earth.” He mentioned his love for baseball, his coaches, his colleagues, the fans, and his family and friends.
His speech was a public admission that though he had ALS disease, he was grateful for the life he’d had. More importantly, he recognized that although his body was physically failing him, he still had a lot to live for and he planned to make the most of whatever his life held as the stages of ALS disease progressed.
Lou Gehrig died at the age of 37, which is uncharacteristically young in comparison with the average age of those afflicted with ALS. Nonetheless, Lou sent a strong message to caregivers of people who live with ALS disease. Their bodies are noticeably and progressively failing, but many parts of their bodies are still working.
ALS patients want and need to continue living the best quality of life that they can, for whatever period of time that is.
Caregivers of ALS patients can offer the best care when they better understand ALS disease and the special needs of those they care for.
- What is ALS?
- Symptoms of ALS
- Stages of ALS
- Beginning Stage
- Middle Stage
- End Stage
- ALS Disease: Who Is at Risk?
- Caregiving for Elderly Patients with ALS
- Eating and Swallowing
- Psychological Impact
- Some Final Words About Caring for Elderly Patients with ALS
What is ALS
The medical term for ALS disease is amyotrophic lateral sclerosis, but most people recognize it by the name ALS or Lou Gehrig’s disease. Researchers have learned much about ALS, but there is currently no cure for it.
ALS is a neurodegenerative disease of the spinal cord and brain. In patients with ALS, their brains don’t send messages to the muscle fibers to tell them to work. Motor neurons start to deteriorating, causing muscle weakness.
ALS is a progressive disease that starts with mild mobility issues and usually ends with total paralysis.
Because ALS is degenerative and terminal, it has a great psychological impact on those who live with the diagnosis. While ALS disease impacts muscle strength, many other parts of the body continue to work.
People with ALS retain their senses including sight, smell, touch, hearing, and taste. Caregivers can help their patients by tuning into their senses and taking steps to let them be as independent as they can for as long as they can.
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Symptoms of ALS
Symptoms of ALS disease usually start out slowly. In the beginning, most patients don’t feel pain, but they will feel a gradual progression of muscle weakness. Other early symptoms look a lot like clumsiness. People with ALS may have slurred speech. They may trip or drop things. They may also have muscle cramps, twitches and abnormal fatigue in the arms or legs.
- muscle weakness
- problems with coordination
- stiff muscles
- vocal cord spasm
- and others
Stages of ALS
ALS has four distinct stages. Caregivers who educate themselves about each stage will be better prepared to adjust their caregiving when they understand the stages and know what to expect.
In the early stages of ALS, the disease may be isolated to a single group of muscles, but it can also affect more than one region of the body. The muscles may twitch and feel spastic. Often, muscles also appear softer and weaker.
Elderly people will feel more tired than usual in the beginning stage making it hard to walk, get their balance and grab things.
The middle stage is characterized by muscles that stiffen and become paralyzed. As the person loses some muscular ability, other muscles contract, which causes a lot of pain. Muscle weakness also causes joints to become rigid and deformed. Dry mouth is common during the middle stage and the person may have trouble swallowing. Some patients experience emotional dysregulation and will burst out in tears or laughter for no reason.
During the late stage of ALS disease, nearly all the muscles become paralyzed, including the muscles in the lungs, which makes breathing difficult. People in the late stage of ALS will need full-time care. Patients will also have more pain during this stage including headaches and dizziness. They may lose their ability to speak, and they may need to be fed intravenously.
The end stage of ALS is preparing for death. One of the bodily systems will fail. Usually, it’s the respiratory system, cardiac system, or swelling of passageways that cause choking. [ii]
ALS Disease: Who Is at Risk?
According to the ALS Association, the average age of people who get ALS is 55, with symptoms typically appearing between the ages of 40-70 years of age. Most people live from 2-5 years after being diagnosed with ALS, although about 10% of ALS patients live for 10 years or longer. [iii]
Our military veterans are twice as likely to contract ALS, though we don’t know the reason for it. [iv]
Studies have shown that elderly people with ALS don’t survive as long as younger people with ALS. [iv]
Caregiving for Elderly Patients with ALS
Elderly patients with ALS can live a high quality of life when caregivers understand the various ways that ALS affects their patients. It helps to recognize that the intensity of caregiving increases as the disease progresses. It also helps to know that ALS affects mobility, breathing, eating and swallowing, and has a psychological impact.
The greatest impact of ALS disease affects the elderly patient’s mobility. For this reason, most patients will want to be as independent as they can during the earlier stages of ALS.
Assistive devices can be of great help to the elderly patient and to the caregiver. Consider implementing assistive devices such as canes, walkers, wheelchairs, and lifts for helping elderly patients get around without falling.
Many patients find it easier for them to bathe themselves longer when they have shower chairs and handheld shower heads. You can also add grab bars to hallways and bathrooms for stability.
One of the most frustrating things for people with ALS is not being able to communicate. Technology has made it possible to help elderly patients communicate with assistive devices for speaking and communicating.
Our bodies use muscles to help us breathe. As ALS causes those muscles to degenerate, elderly patients with ALS have extreme difficulty breathing. Breathing masks and ventilators can help them feel more comfortable and less afraid.
Eating and Swallowing
The muscles in the throat begin to degenerate during the later stages of ALS making eating or swallowing difficult or impossible. The doctor may recommend alternative ways of feeding an elderly patient with ALS disease.
The psychological impact of ALS disease is often an overlooked area of caregiving. A caregiver for an elderly patient with ALS disease is part of a team of caregivers that includes family, nurses, doctors, therapists, and social workers.
Elderly patients with ALS may not be able to respond to you, but they still experience feelings and emotions. Caregivers need to do their best to be as in tune with their patients as possible so that they can assess the care needs and pain levels of their patients. Because elderly patients retain their senses, it helps for caregivers to stimulate their senses using music, fragrances, and other sensory activities.
During the final stages of ALS, hospice teams are typically called in. A caregiver for elderly patients is a vital part of this team that helps the patient and their families to make this stage meaningful.
Some Final Words About Caring for Elderly Patients with ALS
A diagnosis of ALS is difficult for everyone in the beginning. As the patients, their caregivers, and those that care about them better understand the progression of ALS disease, they can all better prepare to go through every stage with dignity and quality of life.