EMOTIONAL WELLNESS

10 Helpful Tips for CIDP Caregivers

Caring for someone with CIDP (chronic inflammatory demyelinating polyneuropathy) can feel overwhelming and may leave you with little to no time and energy to care for yourself. As a caregiver, developing strong self-care habits can be beneficial to finding a healthy balance. By doing so, not only may you feel more at ease, you may also develop an even greater capacity to help your loved one. Whether you’re a spouse, partner, friend, or family member, here are some helpful tips that may help you better take care of yourself as you take care of someone with CIDP.

01. Acknowledge your feelings are valid

One of the first and most important things to recognize is that CIDP doesn’t only affect the person who has it. It also affects those who care about that person, particularly those who care for that person on a regular basis.

Some people with CIDP have bouts of symptoms that may progress and worsen over time, followed by partial improvement between relapses. As they navigate symptoms, what were once their responsibilities may now become yours. When added to your own responsibilities, these new duties can be hard to keep up with. Some days, you might feel overwhelmed or exasperated. Take a moment to own and accept these feelings. Your struggle, like that of your loved one, is real. But your emotions, and those of your loved one, are valid and can be an area to try and improve.

02. Make time to do things you enjoy

It’s important to give yourself time to get away from all the demands of your life and just do something for you—something you really enjoy. Maybe it’s playing an instrument, watching a favorite show, or taking a painting class. Even short, pleasurable breaks may go a long way in lifting your spirits and giving you more energy.

03. Communicate openly and compassionately with your loved one

Give each other room to express your feelings. But understand that many people with CIDP may already feel guilty about how their condition has affected you and others. Consider being as kind as possible, and do your best to avoid hurting one another. Some people with CIDP have even found that the condition has brought them closer to their loved ones.

04. Develop a better bedtime routine

Generally, a good night’s sleep can be restorative, helping you reduce stress. Tips that may help improve your quality of sleep include avoiding having large late-night meals and refraining from watching TV or looking at your smartphone right before bed. Typically, at least 7 hours of sleep per night is considered adequate for healthy adults. To improve your sleep, another tip is to try winding down and getting into bed around the same time every night.

05. Reach out to friends and family for help

When responsibilities start piling up, don’t be afraid to ask others for help. More people than you realize may want to lend a hand, but they might not know how unless you ask them. Perhaps a friend or family member may help support you and can drive your loved one to the infusion center. Or maybe a neighbor can mow your lawn when you don’t have the time. There’s satisfaction to be found in supporting others, so it never hurts to ask for help.

06. Redefine roles and responsibilities

While your partner or loved one with CIDP may not be capable of doing everything they used to, they likely still want to contribute. Together, reevaluate daily responsibilities and rethink who does what. Your loved one could take on tasks that require less physical energy or are easier for them to complete. This may help free you up to do the chores that your partner can’t handle physically. When your loved one can no longer do a chore or activity, try to be supportive, understanding it’s likely not by choice.

07. Seek counseling and support

Therapy and support groups can provide safe spaces for you to vent and explore your emotions. Sharing feelings with other caregivers can be especially helpful because they likely share similar experiences and challenges, and you can learn from one another. Support groups like these may be inexpensive or even free to join. Check out the GBS | CIDP Foundation International or the Well Spouse Association for caregiver resources, and consult with your primary care provider to find licensed mental health professionals.

08. Don’t sweat the small stuff

It’s impossible to do everything, let alone do everything well. Separate your to-do list into “must-dos” and “can-waits,” and reduce stress by easing up on your standards a little and giving yourself grace. Choose your battles. Does it really matter that you pick up groceries for the week for yourself or your loved one? Yes. Is it the end of the world that you didn’t spend as much time cleaning the bathroom as you wanted to? Probably not. Figure out your limits of what needs to be done and prioritize accordingly. It’s different for each of us.

09. Take advantage of time-savers

There are only 24 hours in a day, and that doesn’t change when caring for someone with CIDP. If it’s financially feasible for you, take shortcuts to make your life easier and give you back valuable time. From meal delivery to laundry services to apps that allow you to hire others to do errands for you, consider using these modern conveniences to free up some of your time.

10. Exercise tips for stress

Whether it’s taking a walk, going to the gym, or doing some gardening, regular exercise can be helpful to reducing stress. Find something you enjoy that keeps you moving and try to make it part of your daily routine. It can also be a shared activity that you do together with family and friends.

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Keep up the good work

As a caregiver, you’re already doing so much to help someone in your life who has CIDP. On top of everything else on your plate, self-care may feel like another chore. But remember, even brief periods of time for yourself may give you more energy, focus, and peace. Not only could these small changes make a positive difference in your own life, but they could also benefit the person you’re caring for as a result.

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