The 7 Needs of Caregivers
1. Education about Parkinson’s disease
• Understand the symptoms and learn about available treatments.
• Consider the impact of Parkinson’s and your role in caregiving on everyday life.
2. Time management
• Make daily and weekly lists of things to do, keep it manageable and realistic
• Prioritize: do the important or difficult things first.
• Save up errands to do more of them at one time.
• Try to accomplish a small task when you know you will have to wait.
• Delegate what can be delegated and determine and avoid unnecessary tasks.
• Take breaks and protect yourself from doing too much
• Break large tasks into smaller, more manageable parts
• Establish and stick to routines.
• Acknowledge that some time will be spent on things beyond your control.
3. Self-care, health and respite
• Build in quality time for yourself (1–1½ hours a day, if possible) and protect it.
• Keep up with your own needs, hobbies, and regular activities.
• Exercise: it leads to better sleep, decreased tension and depression and increased energy.
• Eat a balanced, nutritious diet and drink water.
• Recognize stress in yourself, get enough rest, and take time to relax.
• Maintain a sense of humor.
• Get regular check-ups and keep your own medical appointments.
• Think about your future, goals you hope to achieve and how can you achieve them?
• Set limits and stick to them.
• Bring in outside help (family or paid worker) so that you can take a break.
4. A support team
• Share the care. Get assistance and support as needed (physical and emotional).
o Develop your coping skills. Caregivers experience a wide variety of emotions and it is OK to feel sad or frustrated at times. It’s okay to grieve the losses that you and your loved one may experience.
o Take time to enjoy life and focus on the present, the needs, and rewards of the day. Give yourself credit, not criticism and guilt, and try to forgive any mistakes.
o Use positive self-talk: for example, tell yourself, “I am doing a good job.”
o Writing – in a journal or other format – can help you work through your feelings and emotions (What causes sadness for you? Or joy?)
• Develop your emotional and spiritual support networks.
o Include your health care team (physician, nurse, social worker, etc.), family, friends, neighbors, support group and individual support group members, clergy, volunteers, and online support
o Seek comfort from your faith, faith community, and spiritual practices.
o Adjust your expectations: Life and you are not perfect. Accept changes as they occur.
• Be aware of the core symptoms of depression:
o Loss of appetite
o Difficulty concentrating
o Feeling slowed down or restless inside
o No interest in once-pleasurable activities
o Thoughts of death or suicide
o Feelings of hopelessness and worthlessness
If you think you may be depressed, talk to a doctor or mental health professional about your symptoms.
o Get help if necessary. Remember, it is strength not a weakness, to ask for help, including emotional help or counseling. Depression is different in each person.
o Acknowledge any symptoms you experience that could signal depression; you should not feel embarrassed or ashamed.
• Find a supportive professional that you trust and with whom you feel comfortable. In most cases, depression is effectively treated with psychotherapy, antidepressant medications, or a combination of both.
• Activities such as regular exercise, spirituality, supportive social interactions, and meditation are also very beneficial.
5. Your relationship with the person with Parkinson’s
• Maintain open communication.
• When conversing, remove or turn off loud and distracting noises.
• Express love and appreciation as well as concerns and feelings of frustration. Don’t let those feelings transform into resentments.
• Share special time together apart from caregiving tasks.
6. Medical, financial and care decisions
• Define and clarify issues, including family participation in caregiving, advance directives, long-term care options or other topics.
• Devise steps for carrying out these plans.
• When making decisions about hands-on care, ask if your decision promotes your loved one’s independence: Do not confuse “caring” with “doing.”
7. Community resources
• Take advantage of physical and practical assistance and products.
• See what resources local associations have to offer.
• Seek education materials from Parkinson’s disease organizations
• Get legal documents (e.g., power of attorney for health care) in order.
• Explore resources for financial assistance, e.g., disability.
• Reach out to a variety of professionals, such as specialist physicians, nurses, therapists, socialworkers and clergy.
Adapted from publication Caring and Coping by National Parkinson Foundation