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Make Time for Difficult Discussions
Once everyday communication feels more manageable, you can turn toward harder discussions— those that can be scary, uncertain or emotional. In Parkinson’ s, these topics often include memory and thinking changes( whether current or potential), driving, getting care outside of the home and end-oflife planning.
It’ s understandable to want to avoid talking about these things. But not talking about difficult topics now doesn’ t make them go away; it may even create challenges or regret down the line. Try to begin discussions long before you feel the need. Here are some tips for discussing tougher topics:
+ Normalize challenging conversations.“ I don’ t like talking about this either, but I want to make sure I’ m doing the best for you in every way I can …”
+ Share your own feelings.“ I also worry about later life. That’ s why I wrote down what care I do or don’ t want toward the end of life and who can make those decisions for me. It’ s not fun, but it’ s necessary, and I feel better having taken care of it.”
+ Pull from others’ experiences.“ Grandma chose hospice, and what I liked( or didn’ t like) about that was …”
Before starting a difficult conversation, make sure your loved one feels up for it. Consider having these discussions during“ on” times, when medication is working well: your loved one may have fewer symptoms, like fatigue or fogginess, that can affect conversation.
Your communication will likely never be perfect. But working on it means you care and are making progress. You aren’ t in it alone: There are always people who can help, especially with the more challenging conversations, such as your loved one’ s doctor, a social worker, a mental health therapist or a palliative care team.
When Communication Becomes Challenging
Over time, Parkinson’ s may increasingly impact a person’ s ability to communicate. If speech, cognitive or other changes interfere with communication, consider these tips to optimize your connection:
+ Give your loved one plenty of time to speak. Don’ t guess what they are saying or finish their sentences, unless they ask you to. In group settings, make sure everyone holds space for your loved one, or opt for one-on-one chats if groups are too much.
+ Consider yes / no, rather than open-ended questions. Ask,“ Do you want to sit on the patio?” instead of,“ What do you want to do this afternoon?”
+ Use tools to enhance communication. A speech or occupational therapist( or other care partners) can recommend technology and devices to strengthen speech or communicate without spoken words.
+ Find nonverbal ways to connect. Can you listen to music, look at old photos or watch a favorite program together rather than talk? Get creative: Where and how can you connect beyond words?
Our communication reflects our internal state. When someone is living with chronic illness or pain, their words often carry the weight of that struggle. I’ ve learned to stay grounded and meet my father’ s words with patience, understanding and compassion. If I stay calm, that energy carries over to him.
Josip Markus
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