by Edna Ball, Care Partner and Co-founder, Team Parkinson
When I was 11 years old my mother was diagnosed with Parkinson’s disease (PD) at the age of 48, and so began what was to become my life long journey as a care partner. My mother lived with PD for 37 years. I also married a man who after our 10 year anniversary was diagnosed with the same disease. My husband now has had PD for over 40 years.
When this journey first began the term for me, and thousands of others, was caregiver. In recent years the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.
Over all these years I have learned some valuable lessons. The most important is that open and honest communication is vital. None of us are mind readers, and it is crucial for both the care partner and the person with PD, to have the freedom to express themselves without fear of hurt feelings. Walking on eggshells all the time in fear of stressing the other out is even more stressful than getting feelings off one’s chest and then dealing with the issues at hand. And stress is bad for all concerned. Honesty, mixed with kindness and compassion, is key.
It is also extremely important to take care of your own physical, mental and emotional health so that you can be fully present in the care of your loved one. Sometimes that means taking a break from the day-to-day grind. And that in turn might mean asking for help. Asking for help when you need it, without guilt, is one of the smartest things you can do. Surround yourself with family and friends who can chip in when needed.
Educate yourself about the disease, participate in support groups but don’t go overboard and don’t let PD become an obsession that robs you of all the good things you can and should still enjoy. Read about the latest research up to a point, accompany your loved one on doctor’s visits, and keep a current list of medications with you. Do whatever is necessary to stay on top of things, to be prepared and thereby to reduce your own level of stress on a daily basis.
But always remember that not everything in the health of your loved one is about Parkinson’s. There is the normal aging process that visits all of us, care partners included, and it’s good to remember that and not get bogged down thinking everything is the fault of PD. And remind your loved one of that too as you work together on this mutual path to a better and easier existence.
If you practice mutual respect and maintain a sense of humor, life with Parkinson’s disease will be easier. Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.
You can learn more about Edna Ball’s journey as a caregiver and her work with Team Parkinson, via Team Parkinson’s website team-parkinson.org.