​Needing Caregiving Help Can Be Frustrating, and It's Okay to Admit It

Posted by Lauren Presutti in Life After Paralysis on September 20, 2021 # Caregiving

Woman in her wheelchair with caregiver outsideMany caregivers have impacted my life – including professionally paid staff, family members, best friends, volunteers, neighbors, part-time employees, paraprofessionals, student nurses, college classmates, and more. Born with a neuromuscular disease, I grew up needing physical help with my basic living needs every day. Knowing firsthand how frustrating this can be, I hold deep empathy for those recovering from spinal cord injuries who find themselves needing physical care assistance for the first time in their lives. While many people with paralysis are able to regain their full independence, today, I want to address the common emotions among those who are not. Particularly for those living with quadriplegia needing caregiving help, I recognize how frustrating this part of your life might be.

It might be difficult to accept the need for help. It may be disappointing when a caregiver is unreliable. You may feel unhappy with the way your care is provided. Or you may feel awkward at times in your interactions with a caregiver. All of these feelings are valid. I want you to know that it's okay to feel frustrated, sad, angry, annoyed, or generally upset about needing caregiving assistance. Sometimes we feel that way because we are grieving the loss of ability. Sometimes we feel as though life would be so much easier if we were able to care for our bodies on our own. Other times we might feel upset that we have to find and train new caregivers due to a change in circumstances. Or there may be times that we feel jealous of other people who do not need as much assistance. It's okay to express that. We don't have to pretend like we are always perfectly happy or complacent, needing caregiving help.

Further, sometimes we may have mixed emotions. For example, we might feel immensely grateful for the people who are helping us with our daily living needs and simultaneously feel frustrated that we need caregiving help in the first place. It's okay to experience both of those feelings (gratitude and frustration) at the same time. Most people in life, regardless of their circumstances, experience mixed emotions throughout much of life. Sometimes the logical part of our brains might make us think, "This doesn't make sense; how can we feel opposing emotions at the same time? Happy and angry don't go together." It may feel confusing, but having mixed emotions like this is quite normal and expected.

Try to normalize however you feel. Practice telling yourself that it's okay to feel a variety of emotions at once. Acknowledge whatever you notice occurring in your mind. Gaining clarity on how we feel often requires the willingness to slow down, pause for reflection, and be honest with ourselves about what thoughts and feelings are coming to the surface. If you are having a hard time with your caregiving situation, it's important to have safe people in your life who you can talk to about your struggles. Building a support system is critical. Connecting with peers who have likely felt similar emotions regarding their caregiving experiences can also be transformative for healthy processing and adjustment. Check out the Reeve Peer Support Group Program for opportunities to talk with others who will understand your challenges.

Another strategy for managing caregiving-related frustrations is to ask yourself if there are any changes that you would like to make regarding your preferences for care. This is your body. This is your life. You should be in charge. When your caregivers are being trained, they should be taking direction from you. It may be necessary to have other people in the room demonstrate how your care should be done, but that doesn't mean they should be voicing everything about your care. Your voice must be heard. Don't be afraid to speak up about your expectations and preferences. It's also important that the caregiver in training feels like they can ask questions to clarify any points of confusion, so be sure to encourage them to ask you if they are unsure of anything.

Maintaining your individuality is also critical to your independence as a person. Sometimes we may find ourselves being highly agreeable to our caregivers because it might be easier to smile and nod rather than state our differences. Sometimes it feels easier to go along with whatever our caregivers think or say about things, whether related to interests, hobbies, politics, media, entertainment, values, beliefs, or anything else. It may feel easier because we want to be likable or want the caregiver to enjoy working with us. But the problem with being passive is that it may lead you to feel like you are merely an extension of the caregiver rather than your own, unique individual. While I certainly do not advise being argumentative by any means, it's okay to state a difference of opinion. You want to maintain your individuality and remember that your identity matters. Don't let others make you feel invisible.

Most importantly, please remember that you are never a burden for needing caregiving help. You should never apologize for what you need help with. Your need for caregiving assistance is nobody's fault. Living with paralysis is not something you wanted or signed up for. You don't need to feel like your needs are ever a problem. With quality caregivers who truly respect you and want to help you, your relationships with your caregivers can be strong, fulfilling, meaningful, and enjoyable. Some of my caregivers have become my best friends. That would not have occurred if I held onto ideas about me being an inconvenience to them. I want everyone needing caregiving assistance to remember that you deserve to have the best quality of care provided, you are never a burden, and your life truly matters as much as anyone else. Free yourself from any thoughts that might be holding you back from living your best life.

For caregivers, check back for my next blog that will focus on caregiver burnout and how YOU can maintain your mental health while helping others.

If you have questions or if I can be a resource for you, please don't hesitate to reach out. Your mental health matters.

To learn about River Oaks Psychology, visit www.riveroakspsychology.com and follow River Oaks Psychology on Facebook, Instagram, Twitter, YouTube, and LinkedIn.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.