When a parent or spouse has been diagnosed with Parkinson's, it can be difficult to know how best to help. You may feel unsure about when to step in and when to back off. What follows are some practical steps to provide the support your loved one during this difficult time.
1. Be there for the first few medical visits
If logistics allow, go with your loved one 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 loved one may be too distressed or overwhelmed to absorb everything. Being there will help both of you understand the challenges ahead.
Sherry Cirilo, a spokeswoman for the American Parkinson Disease Association (APDA), recommends that both patients and their family caregivers schedule regular appointments with a neurologist specializing in Parkinson’s disease as well as a movement disorder specialist.
2. Be an advocate for your loved one
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. Having a family caregiver or other loved one who’s aware of the different types of treatment available can be a big help.
“I'm an advocate for trying to get your hands on as much relevant information as you can,” says Maura Horton, who cared for her late husband, career college football coach Don Horton, after he was diagnosed with Parkinson’s at 48 years old. “These diseases are changing rapidly with new medications -- so just staying on top of that helps you be an advocate when you're in a doctor’s appointment and you’re able to open the floor for more discussion.”
In addition to staying informed about Parkinson’s treatment options, you or other family members can help gauge the effects of treatment by watching for changes in your loved one 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, a medication prescribed to ease stiffness and rigidity so that your loved one’s facial expressiveness returns to normal or so that they 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 loved one is experiencing dyskinesia side effects -- uncontrolled writhing movements -- their drug dosage may need another kind of adjustment.
3. 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. Depending on your loved one’s personality, it could be overwhelming for them 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 their 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 loved one if they occur.
Cirilo advises caregivers to get educated on the disease using online resources such as the ADPA website, or via support groups for Parkinson’s caregivers.
4. 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.
5. Listen to your loved one, and strive for honesty
After your loved one’s diagnosis, try to open an ongoing conversation with them about what their top priorities are. Which daily activities do they 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 your loved one doesn't care about cooking their own meals, you could sign them up for a Meals on Wheels-type service or periodically stock their freezer with frozen entrées or her fridge with food that's ready to eat.
Also ask whether your loved one is experiencing any non-motor symptoms from Parkinson's disease. Mood changes, sleep, fatigue or problems urinating or defecating can be less obvious than the classic motor symptoms associated with the illness, yet these non-motor difficulties are often even more problematic.
And remember that as you discuss your loved one’s symptoms and care plans, a little honesty can go a long way. Horton says that being honest and transparent with one another about how they were feeling helped she and her husband deal with his Parkinson’s diagnosis.
“I think the most important part is honesty, and its OK to say you’re afraid or acknowledge what your future fears may be,” she says.
6. Resist the urge to take over
Before jumping in with endless amounts of advice, get your loved one’s permission first: ask how much help they want. Is it OK for you to give him or her little reminders about speaking more loudly because Parkinson's disease has weakened their voice? Or about sitting up straight because the condition makes them tilt to one side? If you explain that you're not intending to nag but want to offer useful cues that their own neural system lacks because of the illness, your loved one will probably welcome the input.
At the same time, for the sake of your loved one's self-esteem and independence, it's important to encourage them to do as much for herself as possible, even if you feel you could accomplish a task faster for her. Let your loved one get dressed, feed themselves, or fold the laundry at their own pace, and lend a hand only if they truly needs it.
This approach was one Horton’s family stuck to up until the later stages of her husband’s illness, when balance became an issue.
“We tried to expect nothing different from him -- he wasn't living in a glass bubble all of a sudden. He was always part of the dialogue of work that needed to be done or ways to pitch in,” she says. “It may’ve taken him a while to get the trash out or rake leaves, but at the end of the day they still want to be contributing members of their family and society.”
Likewise, if your loved one speaks slowly, try to avoid leaping in to finish their sentences. Encourage them to speak clearly by asking that they repeat themselves or indicating with a nod to let them know you understand what they’re saying.
7. How to help from a distance
Sometimes, particularly when adult children don't live in the same town as a parent with Parkinson's does, they'll email a flood of suggestions about, say, herbal supplements, assistive gadgets, or research news they've discovered online. But too much of this advice can be overwhelming, experts say. Again, the best thing is to first ask your loved one 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.
8. Get help planning your loved one's care
No Parkinson’s caregiver can do everything alone, especially as their loved one’s disease progresses and more assistance and care is needed.
“A caregiver would benefit from participating in a caregiver support group so they connect with others who have more years of experience coping with a loved one who has PD,” says Cirilo. “Also, there are other family members who are nearby, then it would be a good idea to include them in the care so that one person is not doing it all alone.”
Another potential godsend for Parkinson’s caregivers, especially if you live far from your loved one? Geriatric care managers. These experts are usually nurses, social workers or counselors who are savvy about medical care facilities, a hhome 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 using the Caring.com directory.
Horton notes that having expert guidance can be crucial in the early days following a Parkinson’s diagnosis.
“You’re already raw and emotional, so you really want to make educated and rational decisions,” she says.