Written by Megan Smith, PT
In the first of Rehabmart's series of articles about caregiving for loved ones with ALS, we discussed how ALS is diagnosed, why it is sometimes mistaken for other conditions, and countered some widespread myths about the condition.
ALS is a condition that ultimately affects almost every aspect of a person’s functioning, and creates different needs at each stage of its progression. What begins with the need for a walker could end up with the need for a respirator.
In this article, we won’t attempt to give you a comprehensive guide to caretaking - others have done that well.
Instead, we’d like to offer you some of the tips, tricks, and devices we consider most useful when caring for a loved one with ALS - and caring for yourself in the process.
First, we’ll present ways to help address the various symptoms of ALS. Then, we’ll talk about ways to care for yourself, the Caregiver!
Early signs of ALS may appear even before a diagnosis has been made. Once a group of symptoms shows itself, it will gradually progress, and your loved one will need more and more assistance in the affected areas.
One of the first signs of ALS is usually difficulty chewing and swallowing. Obviously, this puts someone at greater risk for choking.
A person with early ALS may need food cut into smaller pieces, or the consistency of their food may need to be altered.
It may seem counterintuitive, but a thicker liquid or consistency of food is easier for someone to swallow than a thinner food! Thinner liquids tend to slip down the throat too easily, and can cause coughing or choking.
Food thickeners are available that can change the consistency of a favorite beverage so it can be enjoyed safely.
The ideal consistency for your loved one will depend on their swallowing needs, so it’s best to consult a doctor before you choose. Three consistencies are generally available:
In the early stages of ALS, you may notice unusual shortness of breath. Difficulty breathing means lower oxygen intake, and fatigue usually accompanies this early sign of ALS. Devices like this one can help your loved one exert less energy while accomplishing routine daily movements.
A doctor may prescribe non-invasive ventilation in the form of a portable oxygen delivery system. Nose inserts, or cannulas, are a common way to deliver oxygen in these instances.
In the early stages of ALS, this type of portable device can help your loved one remain active and independent, so they can continue to participate in activities with family and friends.
As the diaphragm and other breathing muscles become weaker, breathing becomes a conscious and energy-consuming activity. The inability to cough can lead to dangerous mucus buildup. A doctor may prescribe an assistive breathing device to induce deep breathing and coughing.
A hallmark sign of ALS is muscle cramping, along with either stiffened or weakened leg muscles. Foot drop, or the inability to lift the feet while walking, makes a person with early ALS start to drag their feet.
A lightweight ankle orthosis can keep the foot from dropping. It’s best worn with a supportive shoe and can be easily concealed under normal socks.
Eventually, your loved one may need a walker to keep moving around independently. There are many options, so consult a doctor or therapist for help in making a choice.
Your loved one’s balance will become increasingly compromised as ALS progresses. Handrails in certain risk-prone parts of the house, such as the bathroom, will help keep your loved one from injury.
ALS does not only affect the lower body. Weakness of the hands and arms can be an early sign of ALS. In particular, muscle tone may decrease between the thumb and forefinger, so gripping and holding small items becomes difficult.
Here are a few handy ways to help a loved one continue to use their arms and hands, even as ALS progresses:
As your loved one begins to lose their speaking ability, some of the first things you may notice are a raspy or nasal voice and slurred words. Their voice may become fainter as the vocal muscles lose their power.
Therapists often recommend being proactive when it comes to this loss of communication, which is unfortunately inevitable.
Many people record themselves singing, laughing, and saying everyday things to their loved ones, preparing for the day when they can no longer speak. These recordings can become part of an assisted communication system, so that a loved one’s voice and unique style of speaking is not lost forever.
It can be difficult to talk with someone who is losing their speaking ability. As they become frustrated, you may become frustrated in turn, and then feel guilty about your reactions.
Here are a few tips to maintain good communication:
It’s important not to finish a person’s sentences for them, unless they ask you to. Remember, the person with ALS has a right to communicate on their own for as long as they can.
Working with a speech therapist in the early stages of ALS will help you and your loved one plan for the time when augmentative or assistive communication devices are the only way they can communicate.
Conditions like ALS are of course difficult and frightening for those who have them. But they also affect friends, family, and loved ones. Caregiving can be taxing, emotionally and physically. You might feel like you’re really working a second job, and no longer have time to do things for other members of your family or yourself.
As your loved one’s disease progresses and they lose more and more function, you have to do more and more for them.
Even if you’re lucky enough to have professional help, you’ll soon realize that you are almost never alone in your home. This loss of privacy can be frustrating.
It’s crucial that you consciously become aware that your life has permanently changed. Your energy level, free time, ability to maintain a work schedule … every aspect of your life will be altered by ALS.
Cynthia Knoche, director of Chapter Care Services for the ALS Association, offers five tips for caregivers of those with ALS.
By following these five guidelines, you’ll stand a much better chance of avoiding Caregiver burnout.
Some common causes of Caregiver burnout are:
You’ll know you’re headed for burnout when you always feel angry, guilty, or anxious. Maybe you’re always exhausted, or overreact with emotional outbursts or hostility.
Burnout can result in serious problems, such as constant illness, poor performance at your job, depression, or substance abuse.
The ALS Association’s Care Connection program can be the key to preventing caregiver burnout.
Daily tasks such as laundry, cooking, child care, and house care often fall by the wayside when a person with ALS needs care. The Care Connection reduces stress for the caregiver and their family by providing compassionate support.
A Care Coordinator is selected by the family to manage a team of volunteers who provide help according to the family’s most pressing needs. It might be mowing a lawn, shopping, fixing a window, arranging playdates for the kids, or other things that Caregivers are likely to need some help with.
The Care Connection can provide much-needed relief for a family, so they can focus on spending time with each other.
A diagnosis of ALS can feel like a massive shock wave for both patients and their families. As a Caregiver, you help your loved one through these life-altering changes and provide the love and support they need. And by remembering to take care of yourself and ask for help when you need it, you can help your loved one (and yourself) be at your best!
The medical and Caregiver community is full of professionals and people just like you, who are asking questions about physical health and well-being. Rehabmart is here to help you every step of the way, from providing lifestyle assistive equipment to compiling authoritative resources to guide you through every medical hurdle.
Keep reading about the importance of maintaining emotional health with our article How to Avoid Burnout If You're Caring for a Loved One Full-Time!
Megan has been a part of Rehabmart since its inception nearly 20 years ago. For the past several years she has been enjoying her role as HR Director while maintaining her Physical Therapy license. When she isn't working on her next in-service or working to find a new team member, she enjoys her five children, helping those who have PT type ailments, baking, practicing yoga, and working out.
