Being a care partner 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.
PFP has compiled a list of practical tips for care partners of individuals living with Parkinson’s Disease to make their lives easier and to help ease the stress.
- 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.
- Take time for 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. Make sure you have time to relax. If necessary, enlist the help of other family members or even hire someone to assist you in providing care. Continue to meet with friends, participate in hobbies or groups, and maintain a schedule as normal as possible. You will not only feel more energized, but you will also be less likely to feel resentful.
- 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.
- Join a support group: By joining a support group, you will be able to ask advice and share your experience with others who are going through the same thing. You are there to listen to and support your loved one, but you also need a support person. Understanding that you are not alone and that someone else is in a similar situation helps you to feel nurtured. Learn more about PFP’s Care Partners Support Group
- 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. That way you’ll understand what changes to expect in your loved one’s behavior or symptoms and how you can best help when those changes occur.
- 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.
- Observe symptoms and report any changes: By caring for your partner on a daily basis, 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.
- 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. Don’t try to do everything for your loved one. Allow them the time to complete daily activities on their own, such as dressing.
- Know your rights: Familiarize yourself with both care partners’ rights and disability rights. Find out if you are entitled to any disability or care partner’s benefits.
- 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.