Hi once again, remember me? Annette, daughter and live-in caregiver to my father, Lloyd, a Parkinson’s fighter since June of 2018. It has been a month, so I thought I’d once again write down a few thoughts and resources for caregivers of PD.
Today was an inspirational day to write something since I spent an hour this morning with five caregivers comparing daily life, offering and receiving support, as well as bemoaning bathroom habits of those with PD. One caregiver queried whether it was disrespectful to “complain” since we all have many blessings as well. But we all concurred, if not to each other, then to whom do we unload.
Everyone one of us had read, because caregivers are an educated bunch when it comes to PD and its iterations, that people with PD often suffer from depression. And understandably so. Their brain is not working like it should, their lives are forever changed, daily life can be frustrating. But caregivers should never forget, they are no less affected by these changes. In fact, they might be affected to an even greater extent since they now have the additional task of caregiving. PLUS, they feel they should “care-give” with a smile on their face and without complaint. Who can do that?
A community of caregivers is enormously therapeutic, perhaps even restorative, for each of us. It is too easy, and often a default response, to believe we are all alone in the life we find as our new normal.
An interesting tool is the book, Everything You Need to Know About Caregiving for Parkinson’s Disease, written by Lianne Marie. This guide book talks about everything from “How to Prevent Burnout” to “Handy Aids that Make Caregiving Easier.” Ms. Marie provides data from the 2015 report by AARP on caregiving:
1. Nearly 44 million adults in the US are caregivers for family;
2. Six in ten caregivers are female;
3. More than 15 million caregivers care for someone with dementia;
4. A third of family caregivers say they do it alone, receiving no help;
5. 50% of caregivers feel they had no choice about their caregiver’s role.
As caregivers, we need to stay connected to the world and to each other. Ms. Marie makes the following suggestions:
1. Be kind to yourself. And boy, is this hard.
2. Give yourself permission to live your own life. You are still the person you always were.
3. Slow down, be present. Breath. DO NOT feel guilty just because you take the afternoon to nap, or read a book, or watch a Hallmark movie.
4. Celebrate the time you do have with your loved one.
5. Get help when you need it! As the saying goes, “It takes a village to care-for a person with PD”! (Isn’t that how the saying goes?)
As Maya Angelou wrote, “Try to be a rainbow in someone else’s cloud.” So, go, be that rainbow for your PD warrior, but never put yourself last to do it. And remember, your village is close if you but ask.