The Need: Caring for a person with Parkinson's disease (PD)

The Need:

Caring for a person with Parkinson's disease (PD) can be immensely rewarding, but challenging responsibility and journey. While providing support and assistance to someone with PD, caregivers often neglect their own well-being. The need to recognize the importance of self-care is crucial for caregivers to sustain their physical and mental health and to provide them with a network of support. The chronic nature of Parkinson's requires long-term care, and the demands are multifaceted: providing physical, emotional, and often medical support, navigating through the complexities of healthcare, and the daily demands of caregiving. Caregivers may feel isolation and loneliness, guilt and frustration, overworked, experience increased physical exhaustion, stress, fatigue, emotional strain, anxiety, depression, and financial strain. Witnessing the progressive nature of PD and changes in their loved one’s abilities and lifestyle may lead to anticipatory feelings of fear, grief, and loss.

Engaging in regular self-care practices, such as taking breaks, building a support system, setting realistic expectations, accessing resources, education, and training, creating respite care, and prioritizing personal health, can help caregivers maintain the resilience needed to navigate the complexities of their role, as they approach their responsibilities with renewed energy and patience.

Adequate self-care reduces the risk of burnout. Some common indicators of caregiver burn out are: physical exhaustion, emotional exhaustion, changes in sleep patterns, health issues (headaches, digestive issues, weakened immune system), difficulty concentrating, neglecting personal needs (neglecting their own health, skipping meals, not exercising, foregoing doctor appointments), loss of interest in activities that were once pleasurable, feelings  of helplessness or hopelessness, increased use of alcohol or drugs (used in an attempt to cope), resentment or anger, neglecting personal relationships.

By acknowledging and addressing their own needs, caregivers are better equipped to provide effective and compassionate care; fostering a healthier relationship between the caregiver and the person with PD, ensuring a more sustainable journey for both parties involved.

The importance of and need for this support cannot be overstated. It is apparent that the strength and effectiveness of the caregiving relationship hinge on the existence of a supportive network as their lifeline. It is crucial to unravel the layers of support caregivers require and to advocate for initiatives that recognize and honor the dedication of these silent heroes. It is not just about providing care for those with PD, but also nurturing the well-being of those who care for them. This dual approach ensures a more holistic and effective support system for the entire PD community.

CFMC recognizes the immense challenges faced not only by people living with Parkinson’s, but also by their caregivers. CFMC’s Caregiver’s program was created to protect and improve their physical and emotional well being.

1. Educational Workshops:

• CFMC hosts luncheons with free workshops to educate caregivers about PD, its progression, and common symptoms, effective caregiving strategies, medication management, and communication skills.
• Sessions led by healthcare professionals.

1. Emotional Support and Counseling:

Focus of CFMC’s Support Groups are to provide a positive, uplifting, supportive, healing environment, rather than a depressing, negative one. Caregivers  share their experiences, challenges, coping mechanism, gain support and guidance and make new friends.

1. Skills Training:

• Offer practical skills training sessions covering topics such as mobility assistance, fall prevention, activities of daily living (ADL’s).

1. Technology Integration:

• Technology solutions: mobile apps online platforms that provide resources, tracking tools for medication schedules, virtual support networks

1. Legal and Financial Guidance Workshop:

• Know Your Network of Professionals- receive legal guidance to be sure you are legally prepared and protected.

1. Community Engagement:

• Facilitate community-building activities, organize social outings, wellness activities, and events

1. Regular Check-ins and Assessments:

• Implement a system of regular check-ins and assessments to monitor caregivers' well-being and identify any signs of burnout.

1. Collaboration with Healthcare Providers:

• Foster collaboration with healthcare providers to ensure seamless communication and coordination of care

1. Resource Hub and Library:

• Centralized resource hub and library with easily accessible information, guides, and tools to assist caregivers. Special needs and requests are handled by CFMC’s social worker.

1. Specialized Exercise Classes:

Free In Person group exercise classes, held while PwP is exercising in their appropriate class. promote recognition, support, and community.

Online recorded video exercise classes conveniently accessible and available at home 24/7 ANYTIME ANYWHERE

By incorporating these elements into a comprehensive program, caregivers of people living with Parkinson’s can receive the support they need to navigate their caregiving journey effectively while prioritizing their own well-being.

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