Being a caregiver for people with neurologic conditions can be challenging. Depending on the severity or progression of their condition, they can be independent, or require round-the-clock help with eating, bathing, dressing and caring for their home. Beyond physical impairments, neurologic patients can also have cognitive impairments that affect their emotions and decision-making skills.
For those who are completely new to the experience, it can be overwhelming. How are you supposed to give your loved ones the care they need to stay healthy and safe, while still taking care of your own needs?
Melinda McGuire, MSW, LSW, a social worker at the Dempsey Family Education and Resource Center in OhioHealth Riverside Methodist Hospital’s Neuroscience Center, shared four recommendations she often gives to new caregivers finding their way.
1. Establish a support system and grow it.
Caregivers need a support system that combines formal and informal resources. Your closest connections may be with family members, and that’s where many people start, but think outside of the box – friends, neighbors, current and former co-workers, and church members may also be willing to help. Some communities are also creating a village concept where neighbors can sign up to care for other neighbors in need.
On the formal side, I recommend that caregivers contact their local Agency on Aging (they can go by different names depending on the county), which acts as a front door to resources in the area. They can link you to services such as case management, social services, respite programs, transportation, adult daycare and personal care, and medical and mental health support.
If the person you’re caring for served in the military, there may also be veterans benefits you can access.
2. Join a support group.
I recommend this both for caregivers and people with neurologic conditions. It can be therapeutic and relieving to share experiences with people who know and understand what you’re going through, who have faced the same challenges, and may have ideas or solutions for what you’re dealing with. OhioHealth has a lot of support groups for caregivers and people with different conditions.
It’s amazing when you’re sitting in a group and another person says out loud what you’re thinking. You may not be able to go to every session, but knowing that it’s there when you need it is very helpful.
3. Make time for self-care.
Studies have shown that many caregivers neglect their own health. They can forgo doctor and dentist appointments, forget to refill prescriptions, and experience a lot of mental and emotional strain. It’s a tired cliché, but caring for another person is like putting on an oxygen mask in an airplane: you have to make sure you help yourself first if you’re responsible for others.
It takes a lot of mental, emotional and physical energy to care for another person, so you have to find moments to restore yourself. That’s where your support system can step in and hopefully give you a day off, or even an afternoon break. Go see a movie or get a massage. Understand that taking that time for yourself is not selfish.
If finding large chunks of time away isn’t possible, find little moments where you can. Take time to watch the sun rise. Call a friend or listen to some music while the person you’re caring for is taking a nap. Watch a favorite show. Even taking 30 seconds to enjoy a nice piece of chocolate can give you a boost.
4. Educate yourself on the condition of the person you’re caring for.
The more you understand the neurologic conditions of the people you’re caring for, the better prepared and equipped you will be to support them and engage in their therapy. Websites like the Alzheimer’s Association, the Parkinson’s Foundation and the National Multiple Sclerosis Society have tons of educational support materials, and can link you to local resources and support groups. OhioHealth’s Delay the Disease program is also an excellent resource for people living Parkinson’s and their caregivers. And the Central Ohio Area Aging on Agency has a caregiver toolbox that can give you strategies for providing care at home and helping loved ones navigate their healthcare experience.