Care partners take on many responsibilities, from accompanying a loved one to doctor appointments to managing more household responsibilities. For the most part, care partners do not need special medical training. What’s important is establishing a partnership — a mutual understanding of what kind of help with daily tasks and emotional support the person with Parkinson’s wants and needs as the disease impacts your routines and lives.

It’s essential, too, for care partners to take care of themselves. Parkinson’s progresses slowly, and the role of the care partner can last for decades. Care partners need to take time out to renew their energy and stay healthy.

1. Try to be patient. You may feel overwhelmed, anxious and overwhelmed with new information and incredible uncertainty. Give yourself and your loved one with Parkinson’s extra time, space and compassion.

2. Get or stay active. Whether on your own or with your loved one, exercise is one of the best things you can do for your body and mind.

3. Get support. Make an effort to stay well-connected with family and friends who can offer emotional support. If helpful, consider seeing a therapist or joining an online support group. Also ask for help where useful – perhaps another member of your family could pick up groceries or help with errands.

4. Take care of you. Taking care of yourself is one of the most important (and sometimes most difficult!) things you can do as a care partner. Consider scheduling regular breaks, social time (coffee chats or book clubs, for example) and exercise.

5. Find a “pet” project. Some people and their care partners find it fun and helpful to take on a project together – anything from selecting a recipe and making dinner together, doing a jigsaw puzzle, playing cards, board game or gardening to name a few.

A spouse, adult child or other family members can play a significant role in helping a person with Parkinson’s disease stay organised and receive the best care possible.

• Find a movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinson’s disease. This specialised doctor is generally on the cutting edge of Parkinson’s disease care and can help your loved one build a plan that works best for them.

• Attend doctor’s appointments with your loved one. Doctor’s appointments can be overwhelming, and it’s helpful to have another person along to listen and take notes. A partner may also have a better sense of whether mood symptoms like depression and apathy are a concern. Take a list of questions with you to help guide the appointment and ensure you get all the information you need.

• Stay organised with a calendar that you can take to doctor visits. Note doctor and therapy appointments, the start and stop dates of medicines, and any side effects you may notice.

• Keep a list of all doctors’ phone numbers and addresses in case of an emergency. Also keep a separate and updated list of all prescription medications, their dosages and instructions and the prescribing provider. Note allergies or medication intolerances as well.

• Familiarise yourself with the terms of your loved one’s medical insurance. Know what services, including prescription medication coverage and therapy session benefits, are included. Talk with your physician about the long-term needs of your loved one, and make sure his or her current medical plan will meet those needs. Engage the services of a social worker if you need help navigating these issues.

• Understand the disease. You do not need special medical training to help at most stages of the disease, apart from the most advanced stages. Most caregivers are primarily called on to aid with daily tasks that may become difficult or impossible for someone with Parkinson’s and to provide ongoing emotional support.

• Exercise together. Besides medication, exercise is one of the most beneficial ways to help Parkinson’s disease symptoms. Your loved one may be more likely to stick with a plan if you find an exercise you enjoy together.

Parkinson’s disease can place stress on a marriage or relationship. The fatigue and motor difficulties of the disease can cause changes in a person’s appearance and affect household roles. Cognitive and mood changes may make it hard to initiate and follow through on everyday tasks, which can be frustrating for both of you. Try to be flexible as you establish new routines — assuming responsibility for yard work or paying bills, for example.

As you adjust to these changes in your relationship, communication is important. Be aware of the ways that Parkinson’s affects your loved one’s ability to communicate. Symptoms like slowness or a “masked” face that doesn’t convey emotions can lead to frustration or misunderstanding for both parties.

Care partners may react to a Parkinson’s diagnosis with denial, fear or anger. Seeing your loved one change, particularly if mood or behavior are altered, can be hard to not take personally. Talking openly about what you are experiencing, clearly communicating on a day-to-day basis, and exercising patience are critical for both the person with PD and the care partner.

If your loved one chooses not to tell others about his or her diagnosis right away, you may feel uncomfortable being less than truthful in response to questions from friends and family. There is no simple answer for how best to support your partner in this situation. Discuss your concerns with your partner but also listen to their reasoning. Consider the implications of sharing a diagnosis on your social interactions and your loved one’s career.

If you feel comfortable doing so, visit a counselor or therapist together or individually to work through the many changes and emotions you are experiencing and to learn how you can have a healthy and supportive relationship.

Caring For Yourself

Taking care of yourself will help you to be a better care partner.

• Put together a list of friends and family members whom you can call upon to relieve you for a few hours or in case of an emergency.
• Don’t forget your own interests. Schedule regular social activities and time for yourself. Go out with friends, enjoy a physical activity independently or take classes that interest you.
• If your loved one with Parkinson’s requires constant care, look for local programs that will provided temporary help (sometimes called “respite care”).
• Consider seeking outside, professional help for in-home assistance if you can afford it.
• Take care of your own health. Stay up to date with your own medical appointments and health care needs. Remember to eat well and to get enough sleep.

Support groups offer the opportunity to share experiences and information with empathetic ears. There are groups for people with Parkinson’s and their loved ones to attend together and separate groups just for care partners. Keep in mind that each group has a different character and you may have to try several before finding a right fit. If there are no support groups in your area that you like, consider starting your own. Online forums can also be a source of support.

Information sourced from The Michael J. Fox Foundation for Parkinson’s Research.

Your role in your loved one’s care may also change as the disease progresses. It’s important to know what to expect from the disease and to make plans around eventual disease progression.

• Prepare for later-stage symptoms. Parkinson’s disease is different for everyone, but it’s helpful to familiarise yourself with potential later-stage symptoms of the disease. Some people with Parkinson’s disease experience cognitive impairment, which can range from mild impairment – difficulty with planning and organising activities – to more serious dementia. Parkinson’s disease affects movement, and some people with the disease require a wheelchair later in life. The severity of these symptoms depends on the person’s age at disease onset and overall health.

• Discuss long-term preferences when your loved one is first diagnosed. Discuss the possibility and feasibility of full-time care, assisted living and hospice care. Make sure your loved one has his or her will in order.

• Consider changes that can make your home safer for your loved one. Start with small changes, like clearing the floor of potential obstacles such as throw rugs and extension cords. Add more lights around the house, especially touch lights and lights that respond to sound. If it’s in your budget, consider installing railings along walls and hallways. Some families choose to downgrade to a smaller home or one-story home after a Parkinson’s disease diagnosis. You can also consider building ramps, stairlifts and wider doorways if your budget allows. Medicare covers different types of portable medical equipment, but not permanent installations.