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.
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Listen to your parent.
As your parent's Parkinson's disease progresses, try to open a continuing conversation with her about what her top priorities are. Which daily activities does she really want to be able to keep up? The answers may not necessarily be what you'd assume, and they can guide you as you try to provide support. If it turns out that she doesn't care about cooking her own meals, you could sign her up for a Meals on Wheels-type service or periodically stock her freezer with frozen entrées or her fridge with food that's ready to eat.
Also ask whether your parent is experiencing any nonmotor symptoms from Parkinson's disease. Mood changes, sleep, fatigue, or problems urinating or defecating can be less obvious than the classic motor symptoms of the illness, yet these nonmotor difficulties are often even more problematic.
Resist the urge to take over.
Before jumping in with endless amounts of advice, get your parent's permission first: Ask how much help she wants. Is it OK for you to give her little reminders about speaking more loudly because Parkinson's disease has weakened her voice? Or about sitting up straight because the condition makes her tilt to one side? If you explain that you're not intending to nag but want to offer useful cues that her own neural system lacks because of the illness, your parent will probably welcome the input.
At the same time, for the sake of your parent's self-esteem and independence, it's important to encourage her to do as much for herself as possible, even if you feel you could accomplish a task faster for her. Let your parent get dressed, feed herself, or fold the laundry at her own pace, and lend a hand only if she truly needs it. Likewise, if she speaks slowly, try to avoid leaping in to finish her sentences. Encourage her to speak clearly by asking that she repeat herself or indicating with a nod to let her know you understand her.
How to help from a distance.
Sometimes, particularly when adult children don't live in the same town as their parent with Parkinson's does, they'll e-mail a flood of suggestions about, say, herbal supplements, assistive gadgets, or research news they've discovered on the Internet. But too much of such advice can be overwhelming, experts say. Again, the best thing is to first ask your parent and the primary family caregiver how much help and information they want and need.
One way you can give support from a distance is by simply setting a regular time and day when you'll phone home each week. Consider sending the primary family caregiver a surprise flower bouquet or care package each month, with treats such as a soothing music CD or a gift certificate for a massage or movie. And once or twice a year, try to visit with your parent for three to five days to give the main caregiver a break. If that isn't possible, you might offer to pay for your parent with Parkinson's to take a respite stay in a local extended care facility.
Get help planning your parent's care.
Geriatric care managers can be a godsend in coordinating a tailored plan of care for your parent, especially if you live far away. These experts are usually nurses and social workers who are savvy about medical care facilities, home care agencies, and other resources in the local community. They can help you and your family think through medical, insurance, legal, and financial matters. You can search for a care manager in your parent's neighborhood at the website of the National Association of Professional Geriatric Care Managers.