By Julie Carter, R.N., M.S., A.N.P.
A diagnosis of Parkinson's disease (PD) is a lifechanging experience not only for the person with PD, but also for the spouse, child, parent or friend who becomes the person's primary care partner.
Care partners take on many different responsibilities. Some of these may seem matter-of-course - for example, accompanying a loved one on visits to doctors, or doing the grocery shopping. Others, such as providing physical care, are more demanding. Whatever may be the nature of the task, the work of the care partner is essential to the well-being of a person with PD. Because PD progresses slowly, the care partner's role can last for decades. This journey can certainly bring rewards, but it can also bring difficult times. It is important for every care partner to remember that taking care of oneself is not the same as being selfish. By renewing your own energy and staying healthy, you can better support your loved one who lives with PD.
Health of the Care Partner
As a care partner, you are likely focused on your loved one. Yet research shows that care partners — in general, not just those who care for loved ones with PD — face risks to their own physical and emotional health. This elevated risk can show up in a higher-than-average incidence of heart disease, high blood pressure and visits to the emergency room. Care partners have been shown to experience decreased immunity and sleep deprivation. Lack of sleep can lead to irritability and frustration. In addition, care partners experience higher-than-average rates of depression, anxiety and grief.
Practicing the Art of Self-Compassion
In spite of all that care partners do for their loved ones, it is still easy to be self critical and to feel guilty for not doing more. I encourage you to be forgiving, and to treat yourself with the same kindness you would extend to a friend who had a concern or problem. Selfcompassion is not an act of self-pity or self-indulgence, and research backs this up. It will prevent burnout and will allow you to move forward with the things you need to do every day.
A Toolbox for Self-Care
Here are some tools for practicing self-compassion so you can maintain your physical and emotional health.
Identify Stress Triggers: A first step in self-care is identifying and acknowledging the sources of one's stress. A PD care partner once told me that she always felt irritable, and she felt bad about this. But when she kept a diary to record her emotions throughout the day, she was surprised to find that her irritability was not continuous throughout the day. Instead, it seemed to be triggered by certain specific situations - for example, having three things to do at once, or trying to get out the door and finding her spouse was not keeping pace, or when she was sleep deprived. Recognizing these triggers helped her find solutions to reduce stress.
Build Support Networks: You may feel that you do not want to burden others, but in fact most people are willing to help if asked; they just need help in knowing what to do. Families, friends and caregiver support groups provide a network of people who can help. If you cannot think of a specific task at the time when a person offers help, write down his or her name and ask if you can tell him or her later when a need arises.
In addition, consider talking with a counselor or therapist. Support groups also can be useful. Beyond being a place where people can express their emotions, support groups are a forum for exchanging resources.
If it fits your budget, hiring paid help can free up your time, so you can spend it meaningfully with your loved one. Often, in the rush of errands and medication schedules, quality time gets pushed to the bottom of the to-do list. One tip: make a priority list of caring responsibilities, then: (i) take on the most important ones yourself, and (ii) try to find someone else — paid or unpaid — to help out with the less important ones.
Finding paid help also can allow you to schedule guilt-free respite time. This should be a priority. Personal time promotes emotional health and rejuvenates energy to do the work of caregiving. I know one spouse caregiver who brings in someone to stay with his wife three days a week for two hours, to provide him the time he needs to exercise.
While finding paid help is ideal, it is easier said than done for families who are already under financial strain due to Parkinson's. In such situations, consider consulting a social worker or the state's Area Agency on Aging to learn about assistance that may be available.
Communicate: The first step in being able to communicate effectively - with a loved one, with a support network or in other social situations — is finding a way to understand and express emotions. Being a care partner can stir many, often conflicting feelings, such as guilt or frustration — as well as pride. Talk to a counselor, to members of a support group, or to trusted friends. Try writing in a journal or making art — both of which can be therapeutic ways to express emotions. An outlet of this kind can ease communication with a loved one, making it less charged and more meaningful.
Next, remember that communication changes when someone lives with PD. Because of the disease itself, people with PD often have difficulty showing facial expressions, and their voices can become more monotone. They may respond more slowly than they used to, and gesture less often. It is important to really look at the person with PD when speaking and ask, if unsure, what he or she is feeling and thinking. It may also help your partner to talk about his or her own feelings.
Another important area of communication is with the health care providers of your loved one. By being observant and well organized, and by making a habit of writing down questions, you will get more information and support from health care providers.
Focus on the Positive: This may sound unrealistic in the midst of a difficult situation. However, we all harbor some degree of optimism, and there are proven techniques for nurturing it.
Be Flexible: Especially when we are busy, it is easy to fall back on routines — even ones that no longer work. If this happens, the smart move is to step back, to identify the problem, to think up alternative solutions ... and then to try them out. Being a creative problem solver is a key to decreasing stress.
Treat Yourself With Care
Treating yourself with care is simply not a luxury; it is a necessity. It helps us rediscover the purpose and meaning in our lives. Doing the things that bring us pleasure - whether they are small rituals like enjoying a morning cup of coffee, following an exercise routine, practicing meditation, or simply spending time with positive friends — replenishes reserves of love, improves our health and adds depth to our experience of caring for a loved one.
Ms. Carter is Professor of Neurology at Oregon Health & Science University.