A quick starter guide for families and caregivers.
Your loved one has just been diagnosed with Parkinson’s disease. Finally, you have an explanation for the tremors, trouble sleeping, stiffness, dizziness, or other mysterious symptoms. Now what do you do?
The first thing is to stay calm. Take some time to feel, to think, and to plan. It’s important to imagine your future—and to pace yourself. For most families, a Parkinson’s diagnosis is a marathon not a sprint. The better prepared you are to go the distance with your loved one, the easier the journey will be for everyone.
According to the National Parkinson Foundation (NPF), there are 7 needs every Parkinson’s caregiver should focus on after the initial diagnosis to be fully prepared for what lies ahead.
1. Learn about Parkinson’s disease.
• Understand all the symptoms.
• Educate yourself on available treatments.
• Understand the impact of Parkinson’s on everyday life.
• Access helpful resources, both local and national.
• Explore your role as a caregiver.
2. Practice smart time management.
• Make daily and weekly to-do lists. Be realistic and make your lists manageable.
• Prioritize tasks. Do the most important or difficult things first. Check off what’s been done to enjoy the feeling of satisfaction and to clear it from your mind.
• Combine your errands. If you know you’ll be waiting someplace, bring a small task to do while you wait.
• Learn to delegate. And delegate what you can.
• Edit less important tasks. If it isn’t necessary, forget about it.
• Take short breaks. Give yourself a reward—or a rest when the pressure is too much.
• Don’t spread yourself too thin. If you put too much effort into one area, then you may not be effective in another.
• Break large tasks into smaller more doable parts.
• Establish good routines—and stick to them.
• Recognize that some of your time will be spent on things beyond your control.
3. Make your self-care and health a priority.
• Build in quality time for yourself. Keep doing the things you love with people you enjoy.
• Exercise regularly. You’ll not only sleep better, you’ll relieve stress, avoid depression, and increase your energy.
• Eat a balanced, healthy diet and drink plenty of water.
• Recognize when you are stressed. (And take a relaxing break.)
• Get enough rest. Sleep is when our brains flush out unnecessary information, refresh, and reset for the next day.
• Take time—or make time—to relax.
• Keep your sense of humor.
• See your doctor. Get regular checkups and don’t miss your own medical appointments.
• Think about your future and goals. What do you hope to achieve? How can you achieve them? Can your loved one help you achieve them?
• Set limits and stick to them. Bring in outside help (family or professional caregivers) so you can take a break. You deserve it.
4. Build a reliable support team.
• Share the care. You’re going to need help. Accepting and embracing that simple fact will make your life easier. Explore ways to get the help and support you need— for both physical and emotional health.
• Develop your coping skills. Parkinson’s caregivers experience a wide range of emotions. Give yourself permission to feel sad or frustrated at times—but also take time to enjoy life and to find joy in the present. Be kind to yourself.
• Strengthen your emotional and spiritual support networks.
• Be aware of the core symptoms of depression. (Sleeplessness, loss of appetite, difficulty concentrating, feelings of hopelessness or worthlessness, no interest in favorite activities, thoughts of death or suicide.) If you think you may be depressed, talk to a doctor or mental health professional about your symptoms and seek support and fellowship from others.
5. Nurture your relationship with the person who has Parkinson’s.
• Keep your communication open and relaxed.
• Make communication easier. When talking, turn off loud and distracting noises or move to a more quiet spot.
• Express love and appreciation as well as concerns and frustration.
• Share your feelings of frustration and worry at the right time to the right person. If you don’t express those feelings, resentment will build.
• Share quality time together apart from caregiving tasks.
6. Face your medical, financial, and care decisions early.
• Define and clarify the issues. Focus on clarifying family participation in the caregiving, care recipient wants and desires, advanced directives, and long-term care options.
• Devise steps for carrying out your plans.
• Make your loved one’s independence the top priority. When making decisions about hands-on care, don’t confuse “caring for” with “doing for.”
7. Tap into community resources.
• Take advantage of physical and practical assistance and products.
• See what resources local associations can offer.
• Find current educational materials. Many organizations like the NPF provide these for free.
• Get your legal documents in order.
• Explore resources for financial assistance, such as state and federal disability insurance.
• Reach out to the professionals you need on your team. (Physician specialists, nurses, therapists, social workers, and clergy.)
Source: National Parkinson Foundation
Every person with Parkinson’s is unique—and so is every caregiver. With the right preparation, planning, and support, you can do this! You may even find a deep sense of purpose and new meaning in your life as a caregiver. When you need a break, Honor is here to help. Questions about Parkinson’s care or other support? Give us a call anytime at (877) 777-5116. For more Parkinson’s caregiver tips on managing your stress, head here to be inspired.
To learn more about Parkinson’s disease or to find resources near you, visit www.parkinson.org.