Caring for someone with Parkinson's disease is a big job. You'll have to help your loved one with things like transportation, doctor visits, managing medications, and more.
Parkinson's is a progressive disease. Because its symptoms get worse over time, your role will eventually change. You'll likely have to take on more responsibilities as time passes.
Being a caregiver has many challenges. Trying to handle the needs of your loved one and still manage your life can be difficult. It can also be a gratifying role that gives back as much as you put into it.
Here are some tips to help you care for your loved one with Parkinson's disease.
Learn about Parkinson's
Read everything you can about the disease. Find out about its symptoms, treatments, and what side effects Parkinson's medications can cause. The more you know about the disease, the better you'll be able to help your loved one.
For information and resources, turn to organizations like the Parkinson's Foundation and the Michael J. Fox Foundation. Or, ask a neurologist for advice.
Communicate
Communication is key to caring for someone with Parkinson's. Speech issues may make it hard for your loved one to explain what they need, and you may not always know the right thing to say.
In every conversation, try to be open and sympathetic. Make sure you listen as much as you talk. Express your concern and love for the person, but also be honest about any frustrations you have.
Get organized
Day-to-day Parkinson's care requires a lot of coordination and organization. Depending on the stage of your loved one's disease, you may need to help:
- set up medical appointments and therapy sessions
- drive to appointments
- order medications
- manage prescriptions
- dispense medications at certain times of the day
It can be helpful for you to sit in on doctor's appointments to find out how your loved one is doing, and how you can help manage their care. You can also offer the doctor insight into any changes in symptoms or behaviors your loved one may not have noticed.
Keep detailed medical records in a binder or notebook. Include the following information:
- names, addresses, and phone numbers of every doctor your loved one sees
- updated list of medications they take, including dosages and times taken
- list of past doctor visits and notes from each visit
- a schedule of upcoming appointments
Try these tips to streamline time management and organization:
- Prioritize tasks. Write up a daily and weekly to-do list. Do the most important jobs first.
- Delegate. Hand off nonessential tasks to friends, family members, or hired help.
- Divide and conquer. Break big jobs into smaller ones that you can tackle a little at a time.
- Set routines. Follow a schedule for eating, medication dosing, bathing, and other daily tasks.
Stay positive
Living with a chronic condition like Parkinson's can trigger a range of emotions, from anger to depression.
Encourage your loved one to focus on the positives. Try to engage them in activities they used to enjoy, like going to a museum or having dinner with friends. Distraction can also be a helpful tool. Watch a funny movie together or listen to music.
Try not to dwell too much on Parkinson's disease when you talk to the person. Remember, they are not their disease.
Caregiver support
Taking care of someone else's needs can become overwhelming. Don't neglect your own needs in the process. If you don't take care of yourself, you could become exhausted and overwhelmed, a condition known as caregiver burnout.
Give yourself time each day to do the things you enjoy. Ask a friend or family member to give you a break so you can go out to dinner, take an exercise class, or see a movie.
Take care of yourself. To be a good caregiver, you'll need rest and energy. Eat a balanced diet, exercise, and sleep a full seven to nine hours each night.
When you feel stressed, practice relaxation techniques such as deep breathing and meditation. If you get to the point where you're overwhelmed, see a therapist or other mental health provider for advice.
Also, seek out a Parkinson's caregiver support group. These groups will introduce you to other caregivers who can identify with some of the issues you've faced, and offer advice.
To find a support group in your area, ask the doctor who treats your loved one. Or, visit the Parkinson's Foundation website.
Takeaway
Caring for someone with Parkinson's disease can be challenging, but also rewarding. Don't try to do it all yourself. Ask other friends and family members to help out and give you a break.
Take time for yourself whenever possible. Remember to care for yourself just as well as you do for your loved one with Parkinson's.