This quick starter guide for families and caregivers is from Honor. Every person with Parkinson’s disease (PD) is unique — and so is every caregiver. With the right preparation, planning and support, you can do this!
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.
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.
2. Practice smart time management.
- Make daily and weekly to-do lists. Be realistic and make your lists manageable.
- 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.
- Take short breaks. Give yourself a reward — or a rest when the pressure is too much.
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 and increase your energy.
- Eat a balanced, healthy diet and drink plenty of water.
- See your doctor. Get regular checkups and don’t miss your own medical appointments.
4. Build a reliable support team.
- Share the care. You’re going to need help.
- Develop your coping skills. Parkinson’s caregivers experience a wide range of emotions.
- Build or strengthen your emotional and spiritual support networks.
- Be aware of the core symptoms of depression.
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.
- 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.
6. Face your medical, financial, and care decisions early.
- Define and clarify the issues. Focus on clarifying family participation in the caregiving.
- Devise steps for carrying out your plans.
- Make your loved one’s independence the top priority.
7. Tap into community resources.
- Take advantage of physical and practical assistance and products.
- 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, home care professionals, social workers, and clergy.)
Honor is a home care agency providing service in California and northern Texas. Honor utilizes the Parkinson's Foundation proprietary care guidance to bring personalized care to the homes of people living with Parkinson’s. If you need more guidance or would like to talk to a PD specialist, you can also call the Parkinson's Foundation Helpline at 1-800-473-4636.