Carole Briggs has been the Facilitator of the Jackson Support Group since its early days in 2005. A proud graduate of the University of Michigan's School of Nursing, Carole is still active in her field as the Respite Care Coordinator at disability Connection in Jackson. Her husband, John, passed away in 2009. Carole presented the following at the Jackson Support Group's annual Parkinson's Awareness Month special program.

My husband had advanced Parkinson's Disease and I was his caregiver and advocate. We faced this challenge together for more than 15 years. With this mixed blessing came many demands on my time and energy. We continued to grow spiritually, emotionally and in knowledge and came to respect this progressive disease. It is my hope that every individual afflicted with Parkinson's will have a caregiver and/or advocate who will be available to them throughout this often bumpy journey - a journey that is different for everyone in length and severity.

When an individual suffers from Parkinson's disease, it is not just a personal matter but actually affects all members of the family and others close to them. Recent research (Wallhagen and Brod, 1997) suggests that both the patient's and caregiver's sense of well-being is elevated if they perceive that they have the ability to control day to day symptoms. The belief that we as caregivers can make a difference in the day-to-day management of the disease can help reduce our sense of helplessness and depression.

Carole's Helpful Hints for the Caregiver and Person with PD:

  1. Hook up with a good doctor, preferably a neurologist, who can monitor symptoms, recommend current helpful medications and be supportive to the patient and family.

  2. Be flexible and willing to adapt to changing circumstances...prevent complications, such as falls, constipation, contractures, etc.

  3. Identify problems and write them down. Seek help and/or take them to your doctor.

  4. Reach out for help and support from family members and professionals. There are many sources of help: respite services, speech, physical and occupational therapy, home health services, social workers, legal assistance for wills, financial planning.

  5. Seek effective education and knowledge regarding the disease process, prognosis and symptom management. Read everything you can. Go to the library and book stores. Join a support group.

  6. Practice stress management. Plan special time for your self and your person with PD individually - maybe shopping, taking a bike ride, going out for lunch or a movie or a concert.

  7. Be optimistic - keep a sense of humor. Try to avoid negativity and pessimism to lessen depression and isolation. Laugh a lot.

  8. Stay physically active: exercise every day, as tolerated - and I'm speaking to both the person with PD and care partner. Set aside a regular time of day in your normal routine.

  9. Most of all - be patient, and allow the person with PD extra time for all activities and responses - physically and verbally.

  10. Visit community rehab centers (in Jackson - disAbility Connections) to check out adaptive equipment as care needs change. Much is available to rent or try for a short or long term basis. This can help prevent falls and complications - think SAFETY.

At the end of a busy and often tiring day as a 24/7 caregiver, I often prayed this prayer which gave me comfort and strength:

Hear my prayer, oh Lord. Thank you for giving me the privilege of caring for others. Help me to be always kind and loving, and most of all, help me to be more patient. Grace me with the experience of your forgiveness and love so that I can bring it to others. Amen.

 

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