The rewards that come with caregiving are real and varied. At the same time, caregiver stress is, unfortunately, a part of life when caring for someone with a chronic illness such as PD – especially over an extended period of time. To address caregiver fatigue, you and the people in your support network must be able to recognize the warning signs:
- An ongoing tendency to ignore or postpone taking care of your own health needs
- Growing feelings of isolation, expressed by, “Nobody knows or understands what is really going on with us.”
- Feelings of A feeling of nervousness, worried thoughts and physical distress. and uncertainty about the future
- Feelings of anger at the care recipient or situation, often followed by guilt
- Feelings of profound tiredness and exhaustion not relieved by sleep
- Emotional strain/stress, often manifesting as varying physical symptoms
- An inability to concentrate or make decisions
- Bitterness toward friends or relatives who “should help more”
- Tendency to use alcohol or drugs to try to lessen stress levels
- Depression, despair, feelings of hopelessness
This last bullet is especially important. Forty to 70 percent of caregivers (in general) are significantly stressed, and about half of these seriously stressed caregivers meet the diagnostic criteria for clinical depression. Depression interferes with your ability to do normal day-to-day activities, so both you and the person with Parkinson’s you care for will suffer from your emotional distress. Assess your mental and emotional status and get help coping. Depression is not a weakness; it is an illness, and there are therapies that can help.
What Can I Do to Feel Better?
We have all heard the advice on an airplane, “Put on your own oxygen mask first.” The same holds true for caregivers. By placing your own physical, medical and emotional needs on equal par with the person with Parkinson’s, you may help prevent excessive stress, caregiver burnout and depression.
First and foremost, you must recognize your own feelings. Be honest with yourself and others about your needs and what you think might help.
Feelings of isolation can be alleviated by meeting with people who are in your situation and can understand your experiences. The Parkinson’s Foundation has Chapters throughout the country. Your local Area Agency on Aging can also recommend groups that may be helpful. If you think that friends have stopped coming to visit or that family members are not supportive in the ways you need, speak up. They may not realize how you feel.
Harboring resentment when you need more help can increase stress and lead to burnout. Make a short list of specific tasks that would help you take better care of the person with Parkinson’s and get some much-needed respite. For example, “Could you come every other Tuesday to take Frank to the barber and out to lunch?” If you do not feel comfortable asking directly for help, you will have the list ready when friends and family members ask what they can do. Be honest if lack of funds is a constant worry. Someone in your circle might be able to help with medication costs for one month, or pick up groceries for you once a week.
Manage your stress.
Identify stress triggers along with ways to help control your emotions and release anger in a safe way. Try writing in a journal or going for a walk when tension reaches a breaking point. Physical outlets (e.g., hitting a pillow or screaming in a secluded room) are ways to vent frustration. If the stress triggers are unavoidable, you need reliable ways to reduce and manage them. No method is too silly if it works! Make a coping skills checklist. For example:
- Take 10 deep breaths
- Call a friend
- Get a massage
- Watch your favorite TV show
- Tend the garden
Add as many tools as you like or need, and keep the list handy so you can turn to it whenever the tension starts to build.
Get professional help if you need it.
Do not feel embarrassed to seek professional help or counseling. A social worker, psychologist or psychiatrist can help you pinpoint the causes of your distress and provide constructive ways to cope with the situation. Community health clinics might have these professionals on staff. Your local religious leader can also provide emotional solace.
Be open with family and friends.
Call a meeting with key family members and friends to candidly discuss what’s happening with you and the person with Parkinson’s. If geography is an obstacle, use technology to bridge distances. Try free video conferencing services to hold family meetings at times that work for everyone, or create an online community to share updates and explore options for support. It is important for you to share your feelings and for family and friends to understand the situation from your point of view.
Caregiver Stress Inventory
Complete this self-assessment to evaluate the level of stress and isolation in your current caregiving situation and identify simple steps to begin taking better care of you.
- The most stressful thing about caring for someone with a chronic illness like PD is:
- The single most irritating thing is:
- The most rewarding thing is:
Answer the following questions “yes” or “no”:
- Do I get six hours of uninterrupted sleep most nights?
- Do I have a period of time alone every day?
- Is there someone I could/would phone if a problem arose any time day or night?
- Is there someone in my circle of family or friends who would give or loan me money in case of financial hardship?
- Does at least one other person fully understand the day-to-day trials I experience?
- Do I take regular planned breaks and mini-holidays away from caregiving responsibilities?
(The answer to all the questions above should be “yes.” If you answered “no” to any questions, try to find extra support.)
Your Caregiving Action Plan
One small change I can make today that is just for me:
Two steps I will take in the next month to simplify my schedule or add joy to my life:
In 2016, the Parkinson’s Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinson’s. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.