Caregiver’s Corner is meant to be a resource and safe space for those caring for people with Parkinson’s. All our contributors have loved ones of their own with PD, and are sharing what they have learned along the way to benefit the rest of our community. This column will post the 4th Tuesday of every month.
Strategies for Caregiver Self-care
In Post One of this three-post series, I argued that we caregivers are worthy of self-care, not just so that we can better care for our loved one, but because our own quality of life matters. Feeling worthy of self-care, and committing to it, is the essential first step in achieving the best possible quality of life for ourselves, and we hope—incidentally and consequently— for our loved ones with Parkinson’s Disease.
The author, Kathy, with her husband, Dave.
No one fully understands what your caregiving situation is like for you. No one. Not even other Parkinson’s caregivers; and ironically but maybe especially, not even the person you are caring for. Just as no two Parkinson’s “cases” are alike, no two caregivers, caregiving relationships, or caregiving situations are alike. Some caregivers need a break away from home for a few weeks a year. Some need a break for one hour a day. Some don’t need to get away but need friends or family to visit or help more often. Some caregivers need to work and some need not to work. Some need yoga, some need prayer, and some need a raunchy movie. Some need to garden, some need to bowl, some need to read. Some need to cook, some need to order out. Some need more time alone, some need a gathering. Some need a routine, some need flexibility or spontaneity. Only you know what it’s like for you, and even so, your situation fluctuates… within a day, across a week, and over the course of the disease. Once you think you have a sense of what you need, your day or your life gets turned upside down (again!).
You have multiple types of self-care needs—social, emotional, physical, financial, and spiritual—and these needs often jockey for attention and sometimes compete with or complicate each other. For example, perhaps you really need to spend time away with friends but to do so you have to use precious resources to hire professional help and you worry the whole time you are away that things aren’t going well at home. In such a scenario, your need for social self-care is in conflict with financial and emotional self-care.
Furthermore, sometimes your self-care needs are in conflict with the needs or preferences of your loved one. Early in my husband’s Parkinson’s years, I was fretting to my sister about something I wanted to do for myself and worrying about how it would be received by him. My sister said, “You know, sometimes he is just going to have to be angry with you or disappointed in you. You mustn’t let that stop you from also taking care of yourself.” That conversation empowered me to sit down with my husband and say, “I am going to try to take care of you and myself at the same time. I’m sorry that sometimes you will be disappointed or angry with me but I know you want me to be well, too.” This has allowed me to openly and matter-of-factly self-care, without apology or defensiveness. It has also allowed us to negotiate care decisions (big and small) more frankly and less emotionally.
So, since your caregiving relationship, situation, and needs are unique, how can I possibly offer strategies for your personal self-care? The first strategy is simply committing to self-care. The second is to communicate with your loved one and with other friends and family about your intention to self-care. And the third is actually a set of universal strategies: focus on and nourish the healthiest of your social supports (family, friends, colleagues); monitor and treat your emotional health (seek counseling or support groups); attend to your physical health (keep up with your exams and doctor’s visits, eat well, and exercise); monitor and seek advice about your individual financial resources; cultivate your spiritual life in whatever form that takes; and find ways to ask for help and accept help (get familiar with available support services and get smart about assistive devices that can reduce the load on you).
Beyond these universals, the remaining, particular strategies are up to you. Because your needs and situation are unique, your self-care approach will look different from everyone else’s. You’ll use trial and error to learn what works to maintain your best possible quality of life. Successful self-care is a matter of finding what matters most to you, testing the feasibility and consequences for all involved, and achieving that sweet, ongoing balance between your needs and preferences and those of your loved one.
In my final post of this series (Tuesday, July 27), we’ll reflect on practicing in-the-moment self-care as a means to reducing stress and enhancing daily life.