As the Parkinson’s Disease Awareness Month advances among the usual calendar of activities, the progressiveness of the disease will bring up new and important challenges. Whether new to Parkinson’s Disease (PD) or a long-time caregiver, it is key for you to ascertain and invest in a hardcore support network. This will warrant the wellbeing for both you and the person with the unfolding disease. It has become abundantly evident that the type of care that needs to be brought to the table is two-fold or two-way, as the intricate universe of the PD diagnostics group addresses caregiver mental and physical health. So, care for others needs to be intimately intertwined with care for one self. Remember that a number of Parkinson’s awareness organizations, including those cited in the Sources below, already have a program and content in place in the form of summits (Caregiver Summits are a reality!), tips lists, conferences, and a range of helpful literature, past and current available through online tools.

Top Tip Tally

To contribute, albeit a drop of water in the ocean, here is out list of top tips for all caregivers out there. Finding a balance and rhythm between the caregiver and the sick person, reducing stress factors, avoiding common mistakes, achieving calendar and lifestyle consistency… all are worthwhile goals.

1. Educate Yourself About Parkinson’s Disease: Parkinson’s is a complex disease. Get your info sourced from the best possible provenance. Keep abreast of the latest news, read up on symptomatology and educational materials, talk to your loved one’s doctor about setting expectations concerning disease progression, etc. This is key to beginning the achievement of the sought-after balance. Places to start gathering resources are, of course, the main nonprofits (National Parkinson Foundation or the Michael J Fox Foundation) and/or the care centers of excellence, such as Johns Hopkins hospital.
2. Look After Yourself: This is common sense 101. If you want to offer the best possible looking after to your loved one, YOU need to address your physical, mental and emotionally wellbeing seriously. Time to unwind and de-stress is key. Spend time doing things you enjoy to recharge your batteries. Other family members and friends should chip in or looking for alternative or part-time professional help might be a necessary solution.
3. Be Honest With Each Other: The Nurse Trap needs to be understood and addressed. If you become the nurse of your loved one, chances are you will “demote” them to helpless patient. It’s ineffective, not productive and, chances are, it will develop into a harmful dynamic with, for example, the nurse picking up chores that the Parkinson’s patient is perfectly capable of fulfilling. Openness and a caring but very honest approach are key when conversing and organizing the new relationship that begins or unfolds.
4. Understand Medical Insurance: Understanding your loved one’s medical insurance policy, its coverages, medical cost reimbursement scheme, terminology, and included plan prescriptions and therapies is a good way to stay on top of the insurance company —unfortunately, we all know that has become a staple in our society— and bring on much needed peace of mind to the relationship.
5. Expect (And Welcome) Relationship Changes: Don’t kid yourself, don’t hurt yourself or others. Cause they’re gonna happen. Mood swings, incipient resentment and onset depression are common Parkinson’s byproducts. Difficult to deal with, honest communication is key. Adjustment to new realities and roles is so important. Get to it ASAP.

Sources:

https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/the-parkinsons-caregiver-7-ways-to-help-your-loved-one

https://parkinsonsnewstoday.com/2017/10/19/tips-parkinsons-disease-caregivers/

https://www.parkinson.org/Living-with-Parkinsons/For-Caregivers