8 Ways to Help Your Parent Cope With Parkinson's Disease
When your parent has been diagnosed with Parkinson's, it helps to know when to step in and when to back off. Here are several practical tips for providing the support that your parent needs.
Be there at the first few medical visits.
If logistics allow, go with your parent to the initial meetings with the Parkinson's disease specialist, physical therapist, or occupational therapist. Your presence means an extra set of ears are listening to the same information, which can be valuable because your parent may be too distressed to absorb everything. Being there will help both of you understand the challenges ahead.
Give feedback to your parent's Parkinson's disease clinicians.
The first year of medical visits is a steep learning curve for Parkinson's patients in understanding what kinds of changes to look for in their illness and in mastering how to take their medicines -- and get the most from them. You or other family members can help gauge the effects of treatment by watching for changes in your parent and sending word back to the doctor or nurse.
For instance, let's say the doctor's goal is to adjust the dose of levodopa medicine to ease stiffness and rigidity so that your parent's facial expressiveness returns to normal or so that she can button a shirt without trouble. Family members are often better at noticing these responses than the patient is. Likewise, if you observe that your parent is experiencing dyskinesia side effects -- uncontrolled writhing movements -- her drug dose might need another kind of adjustment.
Know how much to know.
Knowledge is power for patients, but because Parkinson's disease symptoms vary so hugely in different people, too much information may be unnecessarily terrifying, says Julie Carter, associate director of the Parkinson Center of Oregon in Portland. Depending on your parent's personality, it could be overwhelming for her to read about all the possible problems that might eventually develop when she may never experience many of them.
It's more important for the patient to focus on learning about and coping with whatever symptoms are at hand, Carter says. You or her primary caregiver, however, should make sure to get a general overview of the motor and nonmotor Parkinson's symptoms that may arise. That way, you'll recognize them in your parent if they occur.
Adjust your expectations.
Families tend to underestimate the toll of Parkinson's disease, experts say. Typically, the patient grows stiffer and slower and her facial expressions become less animated, which others may interpret as depression or a lack of interest. It's important to realize that the same person you've known and loved is still inside there; it's the disease, not the patient, that's causing these changes in behavior. So, all family members should try to recognize and accommodate this new reality.
Doing so can help save you from feeling frustrated if it takes your parent 20 minutes to get ready to go out to dinner instead of 10 minutes like it used to. And if she doesn't jump up out of the chair when you say that it's time to go, it's not because of stubbornness. Parkinson's disease impairs the brain's automatic motor processes that normally let you move and perform actions without a second thought. For a Parkinson's patient, getting out of the chair may require conscious effort, and multitasking becomes harder. If that's the case for your parent, you need to give her more time to finish whatever she's doing before distracting her with another question or task.