Adjusting to a New Family Dynamic

For many families, Thanksgiving is an important time to get together and strengthen emotional bonds with loved ones. However, it can also be a stressful time when you’re living with Parkinson’s disease (PD) or are a carepartner. As PD progresses, it can have an effect on family dynamics, and impact the ways people with the disease are able to spend time with others year after year. Parkinson’s can influence how you eat, the activities you can participate in, and how you are able to communicate with others. It is important to be as open and honest with your family and friends as possible, so you may work together to make adjustments to ensure that your holiday plans are inclusive, accessible, and fun for everyone.

Adjusting to a New Dynamic

Accepting a Parkinson’s diagnosis can often take time. Just as people with PD may need time to process and adjust to changes that the disease introduces, their loved ones also need time to adapt to a future that may look different from what they had planned. There can be a sense of ongoing grief or loss associated with Parkinson’s as symptoms progress and affect daily life, and there must be a focus on leaving time to process these feelings. While the progressive nature of the disease can be intimidating, one of the best ways to cope is by learning about the disease, treatments, and resources available, and leaning on a solid network of friends, family, and healthcare professionals.

Another change that may alter family dynamics is when loved ones transition into caring roles, which can be both rewarding and challenging. It is important to recognize that care needs may shift from day to day, even hour to hour. People with PD should be open and specific with their carepartners about what kinds of support they need, while respecting their capacity for care.

Remaining as independent as possible can also help with maintaining healthy boundaries in relationships (Parkinson’s Victoria, 2020). Alone time may help create space to prioritize self-care and mental health. Taking opportunities to reverse the caring role can be another way to show love and support to those around you (Parkinson’s Victoria, 2020). This may look like offering to make a cup of tea for your carepartner, or watching the children while your spouse takes some time out. Simple ways of showing care will facilitate healthy, reciprocal family relationships. Finding new activities you can all do together is also a great way to strengthen relationships.

Communication is Key

While humans are naturally attracted to connect with one another, it can often be challenging to communicate our feelings in a way that others understand, especially when confronted by a complex disease like Parkinson’s. While difficult, talking through hard topics in a productive way with family is crucial to good health and well-being, as family is often where our strongest emotional memories are formed (Segal, 2019).

First of all, it is important to ensure you are truly listening to each other. Absorb what others express and make sure you are not just waiting your turn to speak. Secondly, exercise emotional choice — express anger in measured tones instead of with a temper, avoid using absolutes like ‘always’ and ‘never’, and use ‘I’ instead of ‘you’ to express concerns (Schwartz, 2006). Thirdly, try to be aware of each person’s unique needs and be generous in expressing love (Schwartz, 2006). Simple reassurances like loving words or gestures can mean a lot to someone and nurture emotional trust within the family. If communication is becoming more challenging and emotional needs are not being met you may want to consider seeking professional support through counselling.

Alongside emotional communication, Parkinson’s may affect your physical ability to communicate. To strengthen your voice, speech, and communication abilities, try the following self-help strategies:

• Get your listener’s attention before speaking, and maintain eye contact with them.
• Avoid speaking in the presence of distracting background noise.
• Swallow before speaking to clear any pooled saliva.
• Speak slower and louder than you are used to, ensuring every word is clear.
• Clarify topics with a phrase such as “I would like to talk about…”
• Try to plan important conversations for when you are feeling your best (medication “on” time).

Speech-language pathologists can provide more strategies to improve communication problems for people with PD. Evidence-based programs like the Lee Silverman Voice Treatment (LSVT® LOUD) can also be effective speech treatment.

Children and Parkinson's

Children’s reactions to learning about a PD diagnosis may vary; some may become sad and need time to process these feelings, while others may act as though nothing has changed. Trying to shield children from a PD diagnosis can do more harm than good, so be open and honest. You may wish to explain it to them as something that will present challenges, but also something from which one can learn and grow. For younger children, explain the diagnosis in simple terms, and be prepared to answer basic questions around fatality and contagiousness.

For teens, consider using the internet together to identify reliable sources they can turn to for information. Maintaining as much consistency as possible around parenting, discipline, and boundaries is beneficial for facilitating a sense of comfort and routine for children. Activities like regular family meetings, fun outings, and getting involved in the PD community together can help unite your family and foster supportive relationships. Be sure to let children know that they can ask any questions or concerns that may arise for them.

Sources

Parkinson's Foundation (2020). Talking to Children About Parkinson's. https://bit.ly/2Gev2mB

Parkinson’s Victoria (2020). Relationships and Family Life. https://bit.ly/2SmVqO9

Schwartz, A. (2006). Stuffing It: The Culture of Not Speaking. https://bit.ly/3jdF85X

Segal, J. (2019). Improving Family Relationships with Emotional Intelligence. https://bit.ly/2S6wuKq 

This content was published in the October 2020 edition of our monthly support group newsletter, GroupLink. The content was accurate as of this publication date.