Back to Basics: Managing Stress While Caregiving
Being a care partner for a loved one with Parkinson’s disease can have many rewards and many moments of stress. With the focus on medical appointments being mainly on the person with Parkinson’s, it can be easy for the medical team to forget that the care partner is having an emotional experience that can include concern, fear, and anxiety. From diagnosis through the progression of the disease, it’s important to learn strategies to help cope with caregiver stress. When I work with individuals in my therapy practice who are care partners, I tend to start with the basics: self-care, skills, communication, and community.
Being a care partner, which can include accompanying your loved one to appointments, tending to household tasks, taking on increasing responsibilities in household management, and eventually physically caregiving all require one to put their needs on the back burner. Being a care partner is a truly selfless act, one which I believe deserves lots of credit and acknowledgement. The danger with any selfless act is that there can be a temptation or natural occurrence to put one’s own needs last. This can get tricky. If you’ve ever been flying, you may recall the time during pre-departure when the flight attendant reviews putting on your oxygen mask. Who recalls how he states it? If you remember him reminding the parents to put their oxygen masks on first, you would be correct. This same message applies to caregiving. If you’re not remembering to care for yourself, you will not have any “oxygen” left to give to your partner. Acts of self-care can range from remembering to eat regularly, attend medical appointments, sleep according to a schedule, all the way to brief moments of repeating a mantra such as “One Day at a Time” or a brief phone call with a friend or receiving support from a psychotherapist. I share with client that self-care is not a luxury but rather a necessity.
It’s unlikely you feel prepared to be a care partner. Maybe you had a parent with Parkinson’s who you took care of so you actually have been through this before, but most people enter into care partnership inexperienced. Whenever a new experience enters our lives and brings with it more stress and anxiety it typically calls for us to grow and expand our set of skills to cope. When dealing with anxiety, there can be a useful skill that can help relax both the body and the mind called Progressive Muscle Relaxation. This involves tensing and releasing muscle groups throughout the body in a liner fashion. It takes care and is meant to be gentle so do not believe you need to tense and release muscle groups too hard. It can be as simple as holding and releasing muscle group for 10-20 seconds and repeating certain muscle groups if you notice additional stress in certain parts of the body. There are excellent guided progressive muscle relaxation meditations available on YouTube or an app called Insight Timer if you’re looking for a place to start.
Living with a loved one with Parkinson’s means your relationship will change. You may need to ask for more verbal clarification to cope with the symptom of masked face to understand how your partner or parent is doing. You will likely also need to communicate with the medical system more frequently. Both of these changes require one to develop effective communication skills. This can take some practice but usually becomes easier with time. I encourage clients to utilize “I feel” statements when sharing emotional content as well as writing down ahead of medical appointments questions they have to prevent forgetting in the moment or losing one’s nerve.
Humans are social creatures and one way we survive is through relying on one another for compassion and support. If you’re not in a support group and believe it could be helpful, consider joining one either in person or on-line. Online communities like this one help decrease isolation. Reach out to friends and family as needed and challenge any inner judgements that tell you you need to do this all alone.
There’s no one or right way to cope with the challenges that arise being a care partner. What can sometimes help is sticking to the basics and returning to them when you notice you’ve fallen away. How did these resonate with you? Do you have any back to basics strategies that you would add?
Do you think there is enough awareness of Parkinson's disease?