Being a caregiver for a loved one who has Parkinson’s disease can be very stressful. It’s difficult to watch someone close to you suffer and you want to be able to do your best for them, but it’s important to remember that you also have to take care of yourself.
We’ve compiled a list of practical tips for caregivers of patients with Parkinson’s disease to hopefully make their lives easier and to help ease the stress. We’ve based our advice on information from the Michael J Fox Foundation and Partners in Parkinson’s.
1. Be organized: Keep all of your loved one’s medical notes, insurance, records, appointments, telephone numbers of clinics and doctors, and medication details in a folder that can be easily accessed at any time. Take this folder with you to all appointments so you always have everything on hand.
2. Look after yourself: In order to be able to look after your loved one, you need to be physically and emotionally well. Take time off–it’s important to unwind and de-stress. Ask other family members and friends to help out or look into hiring professional care. Spend some time doing something you enjoy and take your mind off things for a few hours.
3. Understand the medical insurance: Make sure you fully understand your loved one’s medical insurance policy — what it does and doesn’t cover and how to apply for reimbursements of medical costs.
4. Join a support group: Find out if there are any active support groups in your local area. If not, then look online for a support group for caregivers of Parkinson’s disease patients. This will give you both practical and emotional support, and you will be able to ask advice and share your experience with others who are going through the same thing.
5. Educate yourself about Parkinson’s disease: Keep up to date with all the latest news about the condition, read up about symptoms and talk to your loved one’s doctor about what to expect with the progression of the disease.
6. Expect changes in the relationship: Mood swings and depression are common in Parkinson’s disease and your loved one may even become resentful. It’s difficult to deal with these changes in the relationship, so open and honest communication is critical. You will both need time to adjust to your new roles in the relationship.
7. Observe symptoms and report any changes: As your loved one’s carer, you will probably be the first person to notice any changes in behavior or worsening of symptoms. Report these to your loved one’s doctors as they occur so they can be addressed as soon as possible.
8. Encourage independence: Try not to do too much for your loved one, they will want to hold onto their independence for as long as possible. Ask if they need help and respect their answer.
9. Know your rights: Familiarize yourself with both caregivers’ rights and disability rights. Find out if you are entitled to any disability or carer’s benefits.
10. Talk about the future: Although this is a difficult topic to broach, it’s important that you understand what your loved one wants further down the line. You need to discuss wills, treatment options and end-of-life decisions.
Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.