In Home Parkinson's Care

It goes without saying that you want to do your best to help your loved one with Parkinson’s disease. But what does that mean in a practical sense?

For most of us who aren’t natural-born caretakers, we need some time to learn the best ways to help a spouse or partner deal with a challenging diagnosis. Here are tips on how to be a better caregiver from experts at the Johns Hopkins Parkinson’s Disease and Movement Disorders Center.

A trap some caregiver-patient partners can get into is one person becoming the “nurse” while the other is demoted to helpless patient. That’s not productive and can end up being harmful if, for example, the caregiver takes on responsibilities that the person with Parkinson’s is perfectly capable of doing.

As a caregiver, try to start an open dialogue for tough (but important) conversations with your loved one where you come to an agreement about when the loved one truly needs help.

Investigate educational materials that can help you understand the disease and its likely progression. You can start with nonprofits, like the National Parkinson Foundation. If your loved one is receiving care at a center of excellence for Parkinson’s disease (such as Johns Hopkins), and even in many other cases, you’ll have access to a library of literature you can use.

It’s very important to get accurate information because Parkinson’s is a complex disease, and what works for one person may not work for the next. All of the national groups are great resources.

Even if, at the beginning, your loved one is capable of getting him or herself to appointments, go along to ask questions, take notes, and share your unique perspective on symptoms or other issues that your loved one may not bring up, such as sleeping problems or mood disorders. Keep a running list of questions to bring with you.

It’s also helpful to have a calendar (paper or digital, whatever works!) to keep track of physician and therapy appointments. You can also use a calendar to track medications and keep notes about any side effects.

If you were always the one who handled questions of insurance coverage, great — but if not, you may want to familiarize yourself with the terms of your health insurance. You’ll need to know details about if and to what extent your plan covers prescriptions, therapy sessions and other unexpected items.

Watch for changes in symptoms, abilities and moods. You should also carefully note your loved one’s changing abilities, especially after changes in medication or therapy. A person with Parkinson’s may be able to do plenty that he or she did before, such as working, doing things around the house, going out with you or with friends, and undertaking normal activities.

But that can change in subtle ways that the person may not always realize — for example, that he or she shouldn’t drive anymore, or that there’s a risk of falling or getting hurt. It can be tough to remind your loved one of things he or she can’t safely do. An expert tip from the Johns Hopkins Parkinson’s team: “Consider asking a social worker or therapist for advice on how to approach the loved one.”

Your loved one’s symptoms may vary over time and even from day to day. Be patient and flexible if, say, you had plans to do something that are now being derailed by a bad day. Try to give your loved one the best possible chance to do certain tasks independently before stepping in to assist out of frustration.

Also, think about the feasibility and timing of removing some tasks from either your own or your loved one’s plate. For example, should you take over bill paying (if this task was the patient’s responsibility)? Or hire someone to do yard work? Talk to each other, too, to avoid miscommunication and resentment over changes you may propose.

This is crucial: If your loved one is forgetting his or her medicine, he or she may not be functioning as well as possible.

To avoid making mistakes or having to bug or nag your loved one, develop a tool you both agree works, such as a smartphone reminder or a hard-to-miss wall calendar. Being consistent with medication can make a difference in both of your lives and lifestyles.