Caring for someone with ALS?
Supporting someone with a rare disease, like ALS, by providing care is a selfless act of love, strength, kindness, and courage. It can be both rewarding and physically and emotionally challenging. While many caregivers find ways to help their loved one based on daily experience, others find that by connecting with people like themselves, they can be prepared for what a person living with ALS might need to live their life as freely and comfortably as possible. Either way, some guidance can go a long way.
Learning about changing needs
When caring for someone with ALS, it’s important to keep in mind that needs can often change. Since ALS is a progressive condition, symptoms of weakness worsen over time. One day the person you’re caring for may be completely capable of preparing his or her own meals and eating whatever he or she likes, but the next day may be a completely different story. Being flexible and staying in tune with the individual you’re caring for is one of the keys to support.
Swallowing difficulties, also known as dysphagia (pronounced “dis-FAY-ja”) impact most people living with ALS. At some point, many people will find it hard to swallow dry, crumbly foods or certain thin liquids. It’s very important to be aware of this issue, since it can change the way the person you’re caring for takes medicines to treat their condition. It also has a major impact on the intake of foods and fluids, which can lead to different dietary needs.
Maintaining nutrition through diet
Just because swallowing is affected by ALS doesn’t mean that the person you’re caring for should lead a bland life. There are many cookbooks that contain delicious and nutritious recipes designed just for people with ALS who may have swallowing problems. Turning to these cookbooks can satisfy the desire for certain flavors, while also filling the need for a range of essential nutrients, which can help maintain a healthy body weight and prevent malnutrition.
You can also try:
- Smaller, more frequent meals
- Blending high-calorie/high-protein foods, such as peanut butter, into shakes and spreads
- Adding sauces to foods to make them easier to swallow
- Planning more snacks
- Adding more flavorings to foods to increase appeal
Muscle weakness in ALS impacts the ability to move around as usual and complete daily tasks. The person you’re caring for may experience a range of issues that can change their mobility, including stiffness, cramps, loss of control of muscles, and weakness. It’s important to be proactive and figure out how to deal with these changes before they progress. There are many assistive devices designed to help caregivers move their loved ones more easily.
Here is some equipment that can help maintain some independence and range of movement:
- Transport wheelchair
- Manual wheelchair
- Power wheelchair
Moderate aerobic exercise and strength training have also been shown to help people with ALS reduce functional decline. Before starting any new exercise regimen, it’s important to talk to your healthcare provider.
Connecting to other caregivers
Being a caregiver requires an immeasurable level of love and strength. Many caregivers find even greater strength and support by connecting with others who are in the same position. You can find many sources of support online and in person
- Visit ALS forums and chat
- An open support community for people affected by ALS/MND (motor neurone disease)
- Find a local ALS chapter in your community
Caring for yourself
Being a caregiver doesn’t mean that you should neglect your own needs. As a matter of fact, it’s critical that you don’t lose sight of how to keep yourself healthy under pressure
- Eat properly
- Exercise routinely
- Get adequate rest
- Ask a friend or family member for some help with your responsibilities
Others may be able to give you a much-needed break so that you can feel refreshed and renewed. Taking a walk, getting a breath of fresh air, reading a book, or watching a movie can help you regain energy and maintain a healthy attitude. And that’s something that’s good for you and your loved ones.
The Care Connection is a program consisting of community volunteers who help give caregivers a break from their daily routine. Visit their site to learn more about how they can help you.
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