Caring for a loved one who has a chronic neurological condition

Older woman in wheelchair hugging daughter.

Being a caregiver is no small undertaking. As you attempt to balance your loved one's needs with your own, it can take a toll on your mental, physical and emotional well-being.

If you're a caregiver for a loved one with a chronic neurological condition, not only do you need to navigate the typical demands of caregiving, but you may need to manage severe symptoms for a long period of time.

A neurological condition is one that impacts the brain, spinal cord and nerves throughout the body. If it lasts for more than a year or requires regular medical attention and/or limits daily activities, it's considered chronic. Examples of chronic neurological conditions include Alzheimer's disease, Parkinson's disease, ALS (Lou Gehrig's disease), Huntington's disease and multiple sclerosis.

"Neurological conditions can be extremely demanding for the caregiver. Your loved one may have trouble moving, speaking, eating, learning or breathing," says Michael Theriault, MD, a neurologist at Main Line Health. "They may also experience symptoms such as muscle weakness, pain, seizures, loss of sensation, confusion and paralysis. As a result, providing ongoing care can be challenging. What's more, it can be emotionally difficult to watch them struggle with their condition and, in some cases, get worse."

Here are 3 tips on supporting you and your loved one if they have a chronic neurological disease.

1. Learn about your loved one's neurological condition.

Whether your loved one was diagnosed yesterday or five years ago, make sure you fully understand their neurological condition. Learn about what symptoms they may experience, what limitations they might have, what needs they'll have each day and what complications can occur—both now and in the future.

"For instance, someone with Alzheimer's disease can experience changes in thinking, reasoning and remembering. As a result, they may benefit from consistency, such as where and when they eat. It can also help to explain what you're doing as you're doing it to help them know what to expect," say Dr. Theriault.

To learn about your loved one's condition, start with their healthcare provider. Be clear about what questions and concerns you have. It can be helpful to keep an ongoing list in a notebook or a note on your phone. That way, you'll remember what you wanted to ask at each appointment.

Don't forget to use other resources, including credible websites. Look for condition-specific associations, like the ALS Association if your loved one has ALS, to ensure the information is accurate and up-to-date.

The more you know about your loved one's neurological condition, the more confident you'll feel about your ability to care for them.

2. Ask for (or hire) help.

Being a caregiver is demanding, and with a chronic neurological condition, you may feel spread very thin. From medications and medical appointments to navigating daily activities, it's a lot to ask one person to do it all.

Remember: it's okay to ask for help from others, including family and close friends. While not everyone will be able to help, give everyone the opportunity to chip in. When asking for assistance, be specific. For instance, you might ask someone to pick up a prescription at the pharmacy or grab a few items at the grocery store.

You may also want to consider hiring in-home care depending on your loved one's needs and your own. Neurological conditions can be complex, and having support in your home can go a long way toward everyone's well-being. Talk to your loved one's healthcare provider about options for in-home care.

3. Make time for yourself.

The idea of downtime might feel like a dream as a caregiver. However, in order to take care of your loved one, it's important to take care of yourself. That requires giving yourself a break every once in a while.

Make time for activities you love, such as reading, gardening or watching your favorite sports team. Find ways to relax, like taking a long bath or making time to read a book. And be sure to maintain your friendships, which will help give you energy and stay positive.

Make sure you take care of your own health, too. Exercise, eat healthy, go to your medical appointments and get enough sleep. If you aren't healthy, you can't help your loved one with their needs.

Neurological conditions can be demanding, both physically and emotionally. By taking the time to step away every so often, you can recharge and allow yourself to be fully present when you're caregiving.

Caregiving takes a village

Being a caregiver is an important responsibility, but it can also feel isolating. You might feel like you never leave the house or you don't have time for yourself. That's why it's important to reach out to others for help when you need it.

Take advantage of your village, including other loved ones and your loved one's medical team. You may also want to attend a support group for caregivers, where others will know what you're going through and be able to provide practical advice.

Caring for a loved one with a neurological condition is challenging, but it's also rewarding. It allows you to spend time with your loved one and grow your relationship in a new way. However, you don't have to go at it alone. Make sure to accept help from those other people—so you can be there for your loved one.

Next steps:

Make an appointment with Michael Theriault, MD 
Learn more about neurology care at Main Line Health
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