By: Dr. Kathleen Rieke, CentraCare
The last two articles in this series focused on epilepsy self-management. They encompassed topics such as managing medications, maximizing communication with providers, and taking an active role in seizure management. This final topic focuses on an often overlooked but profoundly important element to the health and well-being of those living with epilepsy, their caregivers.
Why focus on caregivers? Epilepsy is an individual journey which is rarely traveled alone. Caregivers, the friends and family who care for people with epilepsy, are integral to the success of those living with seizures. Often unpaid, caregivers provide support in countless ways on a daily basis. While this can be fulfilling, it can also be overwhelming and challenging. As a result, caregiver stress, also known as caregiver burnout, is a frequent occurrence.
Caregiver stress has many faces, not all of which are easily recognized. It builds over time, slowly eroding quality of life. Identifying and managing this stress is essential for long-term caregiving.
Recognize signs of caregiver stress
- Constant worry
- Feeling overwhelmed
- Feeling excessively tired or not refreshed when you wake up
- Loss of interest in activities you previously enjoyed
- Becoming easily irritated
- Worsening of your own medical problems
- Using alcohol or drugs to manage the above symptoms
Once you have recognized the signs of stress, what can you do? Be intentional about self-care. Prioritizing your own physical and mental wellbeing is necessary to be a fully effective caregiver. Most aspects of self-care seem obvious but are much easier said than done. Start by making one small change, then another.
Tips for Caregivers
- Accept help. No one can do this alone. When other people want to help, take them up on the offer. Small acts of support like picking up a prescription, doing yard work, cleaning, or cooking a meal can take a lot off your plate. It can also reduce feelings of isolation.
- Take physical care of yourself. Eating a balanced diet and exercise are easy concepts. However, putting them into practice in a busy life can be difficult. Start small and work your way up. Focus on having at least one healthy meal a day or getting vegetables at every meal. These small victories lay down the foundation for greater success in the future.
- Take care of yourself mentally. It is not selfish or wrong to set limits, take breaks, and care for yourself. Taking short breaks for yourself can go a long way in relieving stress. Short walks, brief meditation or prayer or sitting quietly alone will do wonders for your mental health.
- Stay connected. Isolation is a common problem for caregivers. The more time spent caregiving translates into less time with family and friends. Actively work to maintain relationships.
- Give yourself the same grace you would give others. People often treat themselves more harshly than they treat others. Caregiving can be frustrating and difficult at times. If you are feeling guilty, discouraged, or angry, please be kind to yourself. Negative self-talk is neither good nor helpful for you.
- Use technology to your advantage. Book appointments online and use patient portals to communicate with providers. Keep notes on key topics to discuss with your healthcare providers on your phone or tablet. Start a Caring Bridge to get support and share information. There are many phone apps which can help track seizures and their triggers.
- Get support from other caregivers. There is no reason to reinvent the wheel. Connect with others who are on the same journey. There are many support groups online and in your community.
- Talk to your doctor. Caregivers need care too! Talk with your doctor about how you are feeling. They may be aware of resources that can help. Sometimes medication can be helpful to even out the anxiety and depression that can occur with caregiving.
I’ve compiled a list of resources focusing on self-care and connecting with other caregivers.
Connect Groups – Epilepsy Foundation of Minnesota (epilepsyfoundationmn.org)
Individual and Family Services | Epilepsy Foundation
How to Find Epilepsy Support Groups | Epilepsy Blog (epsyhealth.com)
Epilepsy Caregiver Support Guide – My Epilepsy Story
Caring for the Caregiver: 25 Ways to Care for Yourself | CaringBridge
It is important to remember this is a journey. Every day presents unique opportunities and challenges. In order to face them, both patients and their caregivers need support.