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Stuck in the Middle: What You Need to Know About Caregiving

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(StatePoint) As the population ages, more people (particularly women) will be “sandwiched” in between taking care of their parents or other family members in need, and their children.

Take telenurse and nurse educator Kathie Wells, RN, BSN, CCM. At age 55, she is juggling full-time work, while raising school-age kids and caring for her husband Robert, 64, who was diagnosed with Parkinson’s disease (PD) in 2002.

As a nurse, Wells understood the onset and progression of PD, which often includes motor symptoms such as tremor, rigidity and balance issues. But her husband’s disease progressed in a surprising way when he began to see and believe things that weren’t real.

PD is a neurodegenerative brain disorder often involving both motor and non-motor

symptoms, including hallucinations and delusions. When those symptoms appear, it may be Parkinson’s disease psychosis (PDP) and it occurs in more than half the people with Parkinson’s during the course of their disease. Yet, only 10 to 20 percent of patients will proactively report their hallucinations and delusions to their doctor.

When Wells’ husband began to experience delusions, she found his behavior frustrating and alarming. For example, Robert would spend hours in the yard digging up garden stones, convinced he’d found valuable “treasure.” Neighbors remarked on Robert’s behavior and his children wouldn’t invite friends over to avoid them seeing their dad relentlessly digging. Robert’s delusions combined with his other PD motor symptoms were hard for Wells to manage. She struggled to get enough sleep caring for Robert, and their children were hesitant to go out in public with their father because he shared his treasure hunting stories with strangers all the time.

While there’s currently no cure for PD, there are different treatment options to address both motor and non-motor symptoms. Wells says it was a relief when her husband’s neurologist suggested an FDA-approved medication indicated for the treatment of hallucinations and delusions associated with PDP.

Wells recommends the following to caregivers of people with Parkinson’s.

• Consider talking to a professional, as caregivers are more likely to experience relationships or social life suffering and emotional stress than non-caregivers. Likewise, caregiving can take a toll on physical health. Take time to sleep, de-stress, eat well and exercise.

• Seek logistical and emotional help from family, friends, support groups and advocacy groups, who often have free resources available. For example, the Parkinson’s Foundation has advice for caregivers and a helpline staffed by nurses, social workers and therapists.

• Even if you understand your loved one’s condition, report new symptoms or concerns to a healthcare provider as they arise. “I now know that delusions along with hallucinations are telltale signs of Parkinson’s disease psychosis, however, I didn’t recognize those symptoms immediately,” says Wells.

For more information visit www.moretoparkinsons.com.

Remember that you’re not alone. Support exists to help you manage the struggles associated with caring for loved ones.

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