Answering the Top Care Partner Questions About Mental Health

“Mental health includes our emotional, psychological and social well-being. It affects how we think, feel, and act,” according to the Centers of Disease Control. When it comes to living with Parkinson’s disease (PD) ― in any stage ― or caring for a loved one with Parkinson’s, it can become difficult to manage and maintain your optimal mental health.

CPS“Your Questions: Mental Health” was a popular session held during the Parkinson’s Foundation 2020 Care Partner Summit | Cumbre Para Cuidadores, where care partners from all over the world asked their mental health questions, answered below.

Panelists included: Linda Pituch, Helpline Senior PD Information Specialist; Travis Turner, PhD, Assistant professor and Director of the Neuropsychology Division, Medical University of South Carolina; Caryn Balaban, MPH, Care Partner, former Parkinson’s Foundation People with Parkinson’s Council member.

What kinds of mental health issues are part of Parkinson’s?

People with PD have problems managing the dopamine levels in the brain, which can also be responsible for changes in mood. Common mood changes in PD are depression, apathy  and anxiety. Anger and irritability are also common, whether as symptoms, side effects of medication or simply frustration that arises from feeling a loss of control.  

Mood swings are a common symptom of Parkinson’s and “it’s important to know where the swing is to and from,” said Dr. Turner. This can help the care partner better understand what is causing their loved one’s change in mood, and how they can help their loved one pivot.

Active listening skills can be effective in de-escalating frustrations and mood changes because your loved one will feel understood. Examples of active listening include asking questions such as, “I think (this) is what you’re saying.” If your loved one with PD is struggling with mental health changes ask yourself: have they been sleeping well? Have they been socializing?

What are some ways to alleviate mental health struggles in PD?

exerciseExercise: Exercise is the best way to combat Parkinson’s symptoms. This is no different with mental health! Maintain an exercise schedule and make it fun. Rock Steady Boxing classes, virtual exercise classes or planning a weekly socially distanced walk with a friend can keep exercise in the routine while being fun.

Socialize: Spending time with friends and family is a great way to help alleviate depression, apathy and other mood changes. Get involved with a PD support group, volunteer, meet others through in your place of worship or an exercise group. There are even singing groups designated for people with PD. If you have a specific interest, consider starting your own group.

What are some coping skills to help manage care partner mental health?

Being a care partner is a full-time job and it is important to take care of your own mental health, too. Linda reminds care partners to “give yourself a pep talk that not every day can be a good day. Not every hour can be a good hour — but you have gotten this far and you will do what is needed,” she said.

“We conduct regular maintenance on our cars — why don’t we regularly check up on ourselves?” Seek help professionally or from a trusted friend if you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.

What are ways to combat apathy in my loved one with PD?

It can be difficult to work up the drive to exercise when we feel good, much less when apathy strikes. However, exercise can help. Exercise groups are great resources for community, accountability and it helps with symptom management.

Understandably, in the time of COVID-19 it can be more difficult to exercise and socialize. Maximize Zoom media and virtual meeting apps, texting, calling friends and family in the comfort of your own home. Motivating your loved one with Parkinson’s can be especially difficult when they are apathetic. Linda advises that you ask yourself: “what caught their interest before the diagnosis? What was it that always used to perk them up?” and use that answer to help them feel engaged in something.

How can I encourage my loved one to be more social?

When Caryn’s husband was diagnosed, he compared his social experiences to the flu. He disliked that he had to wear his disease rather than hold it inside — and that every person could see his disease. A tactic suggested by the panelists is to embrace the fact that your loved one might look and/or act differently than they used to, but people are less concerned with us than we are with ourselves. Oftentimes, friends and family quickly adapt to changes in your loved one’s communication or abilities.

Dr. Travis points out that psychotherapy or counseling is an effective way to help people process change. Affordability can be an obstacle, but some Medicare plans cover some individual psychotherapy sessions per year. A type of therapy, Cognitive Behavioral Therapy can help you see things differently so that you create new behaviors and patterns.

Staying Social During A Pandemic

As COVID-19 continues to keep us social distancing at home, we know that staying social can be difficult and feel like a low priority. Try our virtual resources for care partners and people with Parkinson’s until you find the one that works best for you:

1. PD Conversations: Ask questions or share your tips with others in our community through our Caregiving, Newly Diagnosed and Symptoms discussion groups.

2. PD Health @ Home: Join us for new weekly online events designed for you.

3. Expert Briefings: These educational webinars are led by an expert and dive into critical PD topics. Register for upcoming webinars and participate in the live broadcasts.

4. Follow us on social media: We love hearing from you on Facebook, Instagram and Twitter.

5. Volunteer: Complete our quick Volunteer Interest Form and find new online volunteer opportunities.

Watch the full recording of this session and all 2020 Care Partner Summit | Cumbre Para Cuidadores sessions now.

Learn More

Learn more about Parkinson’s and mental health in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

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Caregiver Corner
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