If you are caring for a loved one with Parkinson's disease, you are probably familiar with two of the hallmark physical symptoms: tremors and impaired gait.
However, another issue that can be disruptive is the disease frequently affects a person's ability to communicate. The disease can often weaken muscles in the mouth, lips, tongue and diaphragm, causing difficulty in communication between caregivers and your loved one with Parkinson's.
Communication is important to emotional and physical intimacy.
Another manifestation of the disease is lack of facial expression. This can make it appear as though a person is not listening or engaged. People with Parkinson's also may have softer voices that sound hoarse or blurred. Some people with the disease begin to speak rapidly and may stutter.
For those experiencing communication challenges, enlisting the assistance of a speech language pathologist can be quite helpful. By teaching strategies that make communication easier, an SLP can assist in maintaining and regaining communication skills lost to muscle weakness.
While your approach to communication will need to change as the disease progresses, there are ways to help maintain a relationship with your loved one:
Time it: Medications used to treat the disease can cause "on" and "off" times for patients. Take advantage of your loved one's "on" times to talk and let them know how much he or she is valued. Be proactive and speak to medical providers about dosages and the times of the day medications are taken.
Focus: When talking with a person who has Parkinson's, try to maintain eye contact. Sit down if necessary to be at eye level. Parkinson's can make it difficult for someone with the disease to talk while doing something else (such as walking), so conversations may require a concentrated effort from both parties. Group communication may be overwhelming for someone who requires a bit more time to form a response. One-on-one conversations are more manageable.
Keep it simple: Ask "yes" or "no" questions and avoid complicated sentences. If you are talking about other people, use names instead of pronouns to help clarify the conversation. Make it clear when you change subjects.
Be patient: Avoid finishing the other person's sentences. Finding the words can be difficult for a person with Parkinson's, but interjecting can add to his or her frustration. Be understanding and cognizant that communication challenges can have an impact on one's mood and social participation.
Use new tools: Parkinson's can take a toll on handwriting, so written communication may be difficult. Amplification systems are available that use a small, wearable microphone to make a person's voice louder (this can be especially helpful if you as a caregiver have hearing loss). Some systems include a receiver that the caregiver can wear, making it easier to communicate from separate rooms. Video-calling services, such as Facetime or Skype, can help caregivers who aren't close-by maintain the relationship and monitor their loved one's overall condition.
Don't go it alone: Communication challenges can make both caregivers and their loved ones with Parkinson's feel very isolated. Reach out to medical providers and other professionals to help you get educated and manage the responsibilities of care.
Remember, your voice counts. As you work to hear your loved one with Parkinson's, make sure your voice is heard.
Caregiving is stressful. Be sure to discuss your needs, feelings and fears with family, a trusted friend or a mental health counselor. Ask questions about the disease and take advantage of information provided by medical professionals.
As with many aspects of caregiving, the more you know, the better you can handle challenges. Be proactive and support those living with Parkinson's by helping them live every day to their fullest ability.
Judson Haims is the owner of Visiting Angels Home Care in Aspen, Basalt and Carbondale. He can be reached at http://www.visitingangels.com/comtns or 970-328-5526.
https://www.aspentimes.com/opinion/judson-haims-how-best-to-communicate-with-your-loved-one-who-has-parkinsons/
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