JUNE 14, 2013 | by Darcy Blake | Now that you have Parkinson’s Disease, thoughts of the quality of your care arise as you become less independent. You hear a patient’s stream of complaints that triggers a caregiver’s reaction delivered between clenched teeth and you shutter, “I hope I don’t become like that!” Understandably, both parties have reasons for their behaviour.
Of course, if you have a spouse, your caretaker is legally signed up and selected, unless they are more feeble or crankier than you. If you are single, you have to seek outside volunteers such as willing children, loving friends or good paid help. Any way you look at it, the fact is some people seem to do a better job of caring than others. We all know people who are the super-talented giving types. They give their time to others without showing a sign of resentment, exasperation, or fatigue the way most of us might do.
I am thinking specifically of my sister who after homeschooling her four kids, has spent years of her life attentatively caring for our mom, now 84, who has had Parkinson’s for 25 years. My sister patiently visits my mom, now in a wheelchair in a skilled nursing home, and organizes regular outings for her to give her a quality of life she otherwise would not have. This means loading mom and the wheelchair into the car, unloading her at the destination, and reloading her for the return trip. Not a bad chore if you are a weight lifter. And all the while, carrying on a cheerful monologue, since mom can’t carry on a conversation at a decible loud enough to hear. My sister breezes through this without a moment’s hesitation. For Sis, life is full and nothing is going to slow down her zest for living. After spending half a day with mom, she might host a baby shower, or volunteer to cook dinner for a womens’ shelter. This is her nature.
She is just the sort of caretaker that Kaitlyn Roland describes in her blog titled, “Self-care Strategies for Caregivers.” Roland who describes herself as a yogini with a Phd and a passion to help people live well with Parkinson’s Disease, recently blogged about a workshop that she gave for caregivers in Canada on the topic of caregiving. Her characteristics for good caregiving are right on target. The qualities that she lists such as adaptability, optimism, feeling in control of one’s life are so necessary, not only for caregivers, but for all of us trying live life fully and joyously.
For those of us who are PD patients, the very least we can do for our super-human caregivers is be thankful, courteous and try to maintain a sense of humor with those who find themselves caring for us. Kindness and appreciation go a long way to helping a trying situation, and if you can laugh at yourself, that is even better.