Parkinson’s impacts the whole family, especially those most involved in the day-to-day care. As a Parkinson’s care partner, it can be easy to lose sight of your own health and well-being as you care for your loved one living with Parkinson’s. However, taking the time to prioritize your own physical and emotional health will benefit both you and your loved one with Parkinson’s.
In this post, we help you identify important questions to ask regarding your role as a care partner and provide strategies to care for yourself as you care for your loved one.
A care partner is an essential, active participant with the person with Parkinson’s in their care. While most care partners are spouses, children, siblings, parents and even friends can all be considered care partners. As your loved one living with Parkinson’s becomes less independent and more reliant on your care, your role as a care partner transitions to caregiver.
As a care partner, you are an essential member of the care team supporting the person in your life living with Parkinson’s. Your role as a care partner will evolve over the years and asking questions will help you and your loved one have an ongoing conversation about how to best partner in care to encourage you both to live well.
Here are some important discussion topics to have with your loved one:
- Communicate often with your loved one to help them understand and accept your concerns and desire to help and support them. Talk about how much you expect or wish to be involved in care. Care partners typically have the most frequent and ongoing involvement in the lives of people with Parkinson’s. This brings both benefits and challenges as you will often notice effects of Parkinson’s that your loved one may not be aware of. You may find yourself feeling frustrated as you encourage your loved one with Parkinson’s to do activities to help them live well that they may not necessarily want to do, such as exercising, speaking louder or attending an appointment with a healthcare professional.
- Talk about how much you expect or wish to be involved in care. Transitioning from spouse, child, parent or even friend to care partner can change your relationship with your loved one with Parkinson’s. It’s important to have discussions with your loved one with Parkinson’s and the rest of the care team about everyone’s expectations about your involvement in your loved one’s care and your relationship outside of serving as a care partner.
- Set up rules or even agree on a “catch phrase” that your loved one with Parkinson’s can use to let you know when they feel that your guidance and encouragement may be feeling like nagging or too much pressure.
- Speak up during medical appointments. You are both significantly impacted by Parkinson’s and very familiar with the effects it has on your everyday lives. If your typical medical appointments focus only on the person with Parkinson’s, let the Parkinson’s healthcare provider know that you are an active member of the care team and will be contributing during the appointments as well. Writing down the three most important things that you would like your partner’s medical provider to address is another practical step to ensuring your concerns are heard by healthcare providers.
Even though you love the person you’re caring for, caring for someone with Parkinson’s brings real physical, emotional and financial challenges.
Care partners can experience more fatigue, depression and sadness than those without the same responsibilities. The increased stress and strain can make regular self-care harder, which can, in turn, cause your physical and emotional health to suffer. Strain can lead to burnout, which occurs when the care partner is at the point of exhaustion.
Overall, care partners are more likely to experience:
- Symptoms of depression or anxiety
- Chronic medical problems, such as heart disease, obesity, cancer, diabetes or arthritis
- Higher levels of strain hormones and/or a weaker immune response
- A higher risk for memory problems
As a care partner, you can be proactive about your own wellness, just like you are encouraging your loved one with Parkinson’s to be. Begin by learning more about the stress and strain that can come with being a care partner and take steps to limit or avoid factors that lead to burnout. Continually encourage your partner to take an active role in their own care, as research has shown that when people with Parkinson’s have a greater sense of control over their own life with Parkinson’s, the strain on care partners can lessen and everyone’s well-being improves. Develop your own community of trusted friends, relatives and other care partners who can provide practical as well as emotional support.
You can also consider seeing a social worker or counselor. Social workers and counselors have the expertise and knowledge about community resources to help you address the stress and strain that can come with being a care partner.
Your journey of living well as a care partner involves many of the same themes as your loved one who is living with Parkinson’s: taking action, staying connected and being involved. Just as Parkinson’s affects everyone differently, your role as a care partner will affect you in unique ways. It’s important to stay in touch not only with your loved one as you both learn to live well, but with yourself as things change and evolve over time.
Begin by learning more about the stress and strain that can come with being a care partner and take steps to limit or avoid factors that lead to burnout. The American Medical Association provides a caregiver health self-assessment questionnaire with helpful recommendations for starting conversations with healthcare professionals about the impact caring for your loved one may have on your personal health.
Educate yourself about the spectrum of Parkinson’s symptoms and learn which are the most challenging for you and your loved one. Read websites, books and articles as well as watch educational videos, attend support groups and educational events and have conversations with healthcare professionals like your neurologist, nurse or social worker.
Recognizing the importance of maintaining the identity, health and well-being of your loved one with Parkinson’s as well as yourself will bring a better quality of life for you both.
Every Victory Counts® manual for living well with Parkinson’s
How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner
Rewriting the Rulebook for Parkinson’s Care Partners
The Parkinson’s Care Partner’s Digital Toolbox
How to be the Parkinson’s Care Partner Your Partner Needs
Advice for Parkinson’s Care Partners with Connie Carpenter Phinney
get the every victory counts manual for care partners
Do you have the Every Victory Counts Manual for Care Partners! Released in 2021, this resource is available at no cost in print and digital versions. To learn more and request your copy, click here.