Caregiving can be a rewarding but also exhausting journey, especially for those who are taking care of loved ones with rare diseases. One of the most common challenges caregivers face is asking for help. As you juggle the daily responsibilities of caregiving, you may find yourself thinking, “If only I had some help.” Yet, ironically, it’s often the caregivers themselves who hesitate to seek or accept support.

So why is it so difficult to ask for help as a caregiver?

How can you move past this resistance, ensuring that both you and your loved ones receive the care you need?

To gain insight, we consulted two experts: Mark Yaffe, MD, an associate professor of family medicine at Montreal’s McGill University, and Barry Jacobs, PsyD, director of behavioral sciences for the Crozer-Keystone Family Practice Residency Program in Springfield, Pennsylvania.

Common Struggles for Caregivers

Barriers to Asking for Help

Many caregivers feel embarrassed about asking for help. Dr. Yaffe affirms, “Congratulations, you’re normal.” He emphasizes that most family caregivers share this feeling, which is a valid emotional response to the pressures of caregiving. Studies indicate that only about one-third of caregivers accept help when it is offered. This hesitation can be rooted in feelings of shame, or fear of judgment from others, especially in tight-knit family structures where the expectation is to “do it all yourself.”

Dr. Jacobs echoes these thoughts, highlighting that cultural and religious beliefs often reinforce the notion that seeking help equates to weakness. Statements like, “Our family doesn’t take handouts,” or “No one can care for my loved one as well as I do,” are common. Caregivers may also feel that asking for help is admitting failure. However, not seeking support can lead to serious consequences, including caregiver burnout, emotional exhaustion, and even physical health problems.

The Impact of Caregiver Burnout

Caregiver burnout is a very real risk for those who try to “do it all” without asking for help. Family caregivers, particularly for individuals with rare diseases, often experience chronic stress due to the continuous demands of caregiving. As Dr. Yaffe points out, “Caregivers don’t realize they are slowly being worn down by their circumstances.”

Prolonged exposure to caregiving responsibilities without respite increases the chances of burnout, which can manifest in physical symptoms like fatigue, sleep issues, and even increased risk of premature mortality. Caregivers are more likely to face health issues themselves, particularly if they ignore the cumulative stress of caregiving crises.

Dr. Jacobs likens caregiving to a marathon: “You must replenish yourself along the way. Helping yourself allows you to continue helping your loved one.” Without addressing burnout through proper respite care for caregivers or professional caregiving assistance, the caregiver may find themselves unable to continue, which jeopardizes the care of their loved one.

Practical Steps to Seek Help

Opening Up the Dialogue

One of the biggest hurdles caregivers face is starting the conversation with their loved ones about needing help. Many care recipients may resist the idea of anyone else providing care. Dr. Yaffe encourages caregivers to have an open dialogue, explaining how caregiving responsibilities are affecting them. “It’s OK to tell your loved one that they don’t have the right to take over your life,” says Dr. Yaffe. Being honest about your emotional state and the need for assistance can create a stronger, more balanced caregiving relationship.

Dr. Jacobs adds that loved ones need to understand they can support their caregiver by accepting help from others. “Sometimes, providing loving care means bringing someone else into the home,” he notes. This might include professional caregiving assistance or home health agency support. Introducing external help doesn’t diminish the care you provide but can allow you to focus on the most important aspects of caregiving—spending quality time with your loved one.

Accepting Respite Care and Professional Help

Respite care for caregivers is a vital tool for avoiding burnout. By taking short breaks and utilizing services such as community-based respite programs or hiring a professional caregiver, you can restore your energy and maintain your health. Many communities offer family caregiver support groups and resources to connect you with services like home health agencies, which specialize in providing part-time or full-time caregiving assistance.

If you feel overwhelmed, you may benefit from exploring professional caregiving assistance. While it can be difficult to let someone else care for your loved one, Dr. Yaffe reassures caregivers that, “Finding the right match takes time, but when you do, it can make all the difference.” Professional help allows caregivers to delegate certain responsibilities and focus on providing emotional support and quality time for their loved one.

Building a Support Network

When looking for support, start with family, friends, and neighbors. Often, these individuals are eager to help but may not know how. Don’t hesitate to reach out for assistance with tasks like grocery shopping, meal preparation, or transportation. Another valuable resource is connecting with other caregivers through online forums or support groups. Sharing experiences with others who are going through similar challenges can provide emotional support for caregivers.

Additionally, consider turning to your local faith community. Congregational members may be willing to assist during difficult times and may even offer long-term help. Finally, community resources like professional caregiving agencies can be a long-term solution for ongoing assistance.

Caregiver help is essential for your well-being and that of your loved one. Overcoming the initial reluctance to seek assistance can open the door to respite care, professional caregiving assistance, and emotional support. By embracing a support system and understanding that asking for help is a sign of strength, not weakness, you can continue to provide the best care for your loved one without sacrificing your own health.