Carepartner Respite and Self-care During the COVID-19 Pandemic

The COVID-19 pandemic has introduced a number of challenging new realities in our society. For many, it has caused major disruptions in daily schedules, heightened feelings of stress and anxiety, and made it more difficult to access necessary resources. For caregivers, these impacts may hit especially hard as they navigate the pandemic alongside existing responsibilities of caring for their loved one(s). With many businesses closed and physical distancing guidelines in place, caregivers may not have the same opportunities as they did before to enjoy leisure time, social outings, or time away from their caregiver role. The pandemic has left carepartners especially prone to losing sight of their own needs and forgetting to prioritize self-care. Like their loved ones, it is essential for caregivers to ensure they are receiving the support they need to live a healthy, happy life.

Respite Resources

Respite includes any form of short-term relief from care duties, allowing carepartners to take a break from their role and enjoy some downtime. There are several different types of respite, one being informal arrangements with family and friends. Close family members and friends may be willing to help by doing some household chores for you, such as grocery shopping or cleaning, or they may be able to take your loved one on an outing or care for them for a period of time, allowing you some time for yourself.

Formal services such as in-home assistance can offer a similar option, where professional nursing or care staff will come to your home to assist with medical requirements or perform care duties for your loved one. Adult day programs are community-based recreational programs offered to people who need extra care or support. These half-day or day-long programs may focus on supporting your loved one with exercise, toileting, and eating and mobility issues, while providing time away for you. If you experience injury or illness, short-term residential care (less than 3 months) is another respite option where your loved one can receive temporary assistance.

Taking advantage of respite care and professional support can help facilitate independence and healthy boundaries between you and your loved one with Parkinson’s disease. They can help you manage your time, stay positive and energetic, and support your ability to continue providing excellent care.

Mental Health and Self-care

During these unprecedented times, it may be difficult to access support services due to long waits, limited capacity, and strict safety protocols. It can also be challenging to arrange for informal support from family and friends while practicing social distancing. As a result, many carepartners are now facing the additional stress of managing the majority of their loved one’s care on their own, with limited access to respite. To help you better manage your caregiving duties, it is important to first manage your mental health, and establish a self-care routine and healthy coping strategies.

Acknowledge Change

As a caregiver during this time, start by acknowledging new challenges and taking time to process them. While difficult, being open to change can help you stay positive and find joy in the things you are still able to do with your loved one. Reach out to friends or family who may be able to listen or lend a helping hand. Try to be kind and non-judgemental, and speak to yourself like you would speak to a friend – your job can be both challenging and profoundly rewarding.

The Parkinson’s journey is made up of many incremental losses that must be grieved. These can include things like future plans, independence, physical abilities, or hobbies and interests. Carepartners need to be prepared to acknowledge and accept these losses, and support their loved one in adapting to the changes in their life caused by Parkinson’s. During this pandemic, you may also be faced with temporary losses, like being disconnected from your friends or support group; any loss, no matter how big or small, should be acknowledged and accepted as part of a healthy coping strategy.

Acceptance can be a painful process. Many approach difficult life changes by focusing on how to move forward, without taking the time to work through their emotions. If these emotions are left to build over time, they can have a significant impact on one’s mental health. Mindfulness can be a good tool for carepartners looking to work on acceptance. All you need to practice mindfulness is to bring your attention to the present moment, and view it objectively, without judgement. This includes allowing negative or painful thoughts to cross your mind, and simply acknowledging and accepting them.

Prioritize Your Needs

Things like sleep and good nutrition are vital to maintaining your physical and mental health. While it is easy to become focused on the medical needs of your loved one, it is also important that you are keeping up to date with your own health and medical appointments (yearly physicals, vaccinations, mammograms, etc.). Another way to avoid feeling overwhelmed with responsibility is to make daily to-do lists, prioritize and break down tasks, take breaks, and reward yourself when the job is done. Fulfilling these basic needs and organizing your schedule ensures you stay healthy and positive.

It is also valuable to carve out and schedule time during the day to do things you enjoy. Even if you feel guilty about taking this time out for yourself, understand that it is a crucial aspect of reducing your stress levels and maintaining a life outside your role as a caregiver. Taking time to relax, decompress, and have fun will give you more energy and enthusiasm to continue providing the best possible support to your loved one.

Activities like meditation and breathing exercises can help decrease heart rate and blood pressure, alleviate stress, and increase optimism and compassion. Using a journal or sketchbook may help you express your experiences in a creative way and facilitate therapeutic release of anxiety. Exercising is a great way to maintain your physical health while releasing endorphins that will have a positive effect on your mind and body. Finally, don’t forget to laugh! Though it sounds simple, taking time to laugh at your favourite sitcom or comedian has been shown to soothe tension, improve your immune system, and increase personal satisfaction (Mayo Clinic, 2019).

Socialize and Communicate your Experience

Socialization is another key aspect of good health and wellbeing. You may have heard that humans are naturally social beings – the encouragement and comfort we find in social interaction makes us resilient and strong (Cohut, 2018). Find someone you trust to talk openly and honestly about your experiences with. During COVID-19, this may look like a Zoom meeting, a phone call, or joining Parkinson Society BC’s PDLink Program. If you feel comfortable, get outside for a physically-distanced walk with a friend. Consider joining an online caregiver support group to spend time with peers facing similar circumstances. Support groups can be an opportunity to ask questions, discuss concerns, find more resources, and connect with others. These groups are a great reminder that you are not alone in your journey.

Sources

Cohut, M. (2018). Socialization: How does it benefit mental and physical health? Retrieved from https://bit.ly/32WjIEA

Mayo Clinic (2019). Stress relief from laughter? It’s no joke. Retrieved from https://mayocl.in/35X33mi 

This content was published in the Fall 2020 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.