As stages advance with Parkinson's, you may find yourself fully involved with assisting the person with Parkinson's with many activities of daily living and medical tasks, as well as maintaining a household; shopping and preparing meals; organizing records, papers, and appointments; transporting your loved one to healthcare visits; keeping up with social and family relationships and many other tasks. At the same time, you may be working, raising children or grandchildren, or coping with your own health or personal issues.
Research from the National Alliance for Caregiving shows the top four care partner concerns are:
· Keeping your loved one safe
· Managing your own stress
· Finding activities to do with your loved one
· Taking time for yourself
Research also reveals that when care partners are asked what they want, the majority respond that they want information about coping with being a care partner. This information takes several forms, including knowledge about the condition impacting your loved one, comfort with the care partner role, and managing stress.
The Parkinson's Foundation produced a flyer that includes some tools for practicing self-compassion to help you maintain your physical and emotional health. These tips, include:
Identify Stress Triggers: A first step in self-care is identifying and acknowledging what causes your stress. Irritability, for example, may be triggered by certain situations, like having three things to do at once or having trouble getting your loved one out the door on time.
Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt, and depression. Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.
Determine your limits: What is your comfort level providing care? Some people determine they can provide care at home if others in the family can manage the disruptions. Everyone has limits. What are yours?
Build in regular breaks from caregiving and make them a priority. You cannot be a good caregiver to someone else if you do not take care of yourself.
Delegate. You may feel that you don't want to burden others, but in fact most people are willing to help if asked - they just need direction. Families, friends, and support groups provide a network of people who can help. Often, in the rush of errands and medication schedules, quality time gets pushed to the bottom of the to-do list. Try prioritizing your list of caring responsibilities. Take on the most important ones yourself and try to find someone else - paid or unpaid - to help with the less important ones.
Focus on the Positive: This may sound unrealistic during a difficult situation. However, we all harbor some degree of optimism and there are proven techniques for nurturing it.
Seek out joy in your relationships with the person with Parkinson's. Your hands-on duties, such as bathing and dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
Develop a habit of participating in activities together outside of care tasks. Shared time as husband and wife, mother-daughter, siblings, or other relationships - rather than as care partner and care recipient - allows you to enjoy each other and build happy memories.
Treating yourself with care is not a luxury, but 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.