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

For most of us who aren’t natural-born caregivers, we need some time to learn the best ways to help a spouse or partner deal with a challenging diagnosis. Here are eleven tips that might help. 

1. Be honest with each other

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 – for example if 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 with your loved one where you come to an agreement about when and how they truly need help.

2. Educate yourself

Investigate educational materials that can help you understand the disease and its likely progression. You can start with the Parkinson’s NSW InfoLine (phone 1800 644 189) to ask our Specialist Parkinson’s Nurses questions and to request educational materials. 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 another. 

3. Prepare for and attend medical appointments

Even if 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 they may not bring up – such as sleeping problems or mood disorders. Keep a running list of questions to take with you. It’s also helpful to have a calendar to keep track of doctor and therapy appointments. You can also use a calendar to track medications and keep notes about any side effects.

4. Stay on top of insurance

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

5. Be observant

Watch for changes in symptoms, abilities, and moods. You should 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 realise – for example, that he or she shouldn’t drive anymore, or that there’s a risk of falling or getting hurt.  

6. Help them feel normalcy

A disease like Parkinson’s can interfere with the normalcy of someone’s life. Because people may focus so much on the disease and its symptoms, your loved one may start to lose their sense of self. When you talk with your loved one, don’t constantly remind them that they have a chronic disease. Talk about other things like their favourite new movie or book. 

7. Be flexible 

Your loved one’s symptoms may vary over time and even from day to day. Be patient and flexible – if, for example, 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 or hire someone to help with the garden? Also remember to talk to one another to avoid miscommunication and resentment over changes you may propose. 

8. Listen

It can be intensely upsetting and frustrating to live with a condition that’s both degenerative and unpredictable. Anxiety and depression are common in people with Parkinson’s disease. Sometimes just offering a shoulder to cry on or a friendly ear can be a tremendous gift. Encourage your loved one to talk about their emotions and let them know you’re listening. 

9. Be sure medications are taken on time, every time

This is crucial: If your loved one is forgetting his or her medicine, they 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, a medication alarm, or a hard-to-miss wall calendar. Being consistent with medication can make a difference in both of your lives and lifestyles.

10. Get active together

Exercise is important for everyone, but it’s especially helpful for people with Parkinson’s disease. Research has found that exercise helps the brain use dopamine – a chemical involved in movement – more efficiently. Fitness improves strength, balance, memory, and quality of life in people living with Parkinson’s. If your friend or loved one isn’t staying active, encourage them to get moving by taking a walk together every day. Or sign up for a dance or yoga class together. Both of these exercise programs are helpful for improving coordination. 

11. Get out of the house

A chronic disease like Parkinson’s can be very isolating and lonely. If your friend or family member doesn’t get out much, take them out. Go to dinner or a movie. Be prepared to make some accommodations, such as choosing a restaurant or theatre that has a ramp or elevator. And be ready to adjust your plans if the person doesn’t feel well enough to go out. 

Sources:
Johns Hopkins Parkinson’s Disease and Movement Disorders Center
Healthline: Medical information and health advice you can trust