First, I would like to thank Gwinnett Citizen for allowing me to use this platform to share some of my encounters with caregivers that I hope will reach other caregivers going through the same feelings and alleviate some of the guilt caregivers often feel.
I have had my share of exposure to many caregiver situations since I opened SarahCare of Snellville in 2010. Learning about the amount of stress caregivers suffer from being in these situations, inspired us to get trained and offer a class called Powerful Tools for Caregivers. Our center RN, Susan Munroe and I began teaching these classes in the fall of 2014. In our very first class, I heard something that has stuck with me ever since.
Thank you for giving me permission to take a nap.
In May of 2015, I had the pleasure of meeting a couple that shared an exceptional kind of love. Oh how she doted on him before she left the center almost not wanting to leave him and like clockwork, the early afternoon would bring him sadness shown though his tears of just how much he missed her. This couple would prefer to stay unknown, so I will just call them Romeo and Juliet. A fitting pair to compare this kind of love to.
They met in college and soon moved to Georgia to begin their life together. She smiles saying, “this was just a God connection.” They both enjoyed people, being close to family, went to the same church even before they were married, loved hiking and dancing. Actually they had a special dance just for them, like the ‘shag.’ When I asked her what she loved about him? Without hesitation she says, “His warm smile, level of integrity, his concern for other people and a KING size heart!”
Romeo and Juliet have created some memories that keep her smiling just when she thinks about them, sharing graduations and weddings of their son and daughter, having to let them go but being able to do this together. And their last big trip in 2014 to Seattle with children and grandchildren, creating what may be their last precious memories together. Memories are created for reflection. Reflection even when times are not as they used to be.
Juliet begins seeing changes in Romeo from some forgetfulness and tremors in one hand but not until a friend that had experienced Parkinson’s with her father witnessing his behavior did this become so serious and life changing. Her friend called her after the visit to say, “we cried all the way home because they saw the signs.” After receiving the diagnosis, a feeling of relief came over Juliet but she was also in denial about how much help she was going to need due to the diagnosis.
As caregivers, the thought process is all too often that they have to do it all because the care will not be the same. Well, Juliet of course felt that same way so she took it all on. They had a good support system but she wanted to save the requested help from others until she would really need it. Until one day she got angry for having so much to do. Juliet’s tip from that experience – Anger is a red flag that you need help. It will take you down a road that you can’t get out.
She began seeking help, first at a Parkinson’s Support Group, talking to friends about her struggles, then came the decision of adult day care. But the decision of adult day care brought on yet another feeling of guilt, “I can’t be out enjoying friends while he is sitting in a corner” she says. Well she quickly found out that at SarahCare, he would not be sitting in a corner, and not only would he be well taken care of but we encouraged her to take some time for herself. She is thankful the program requires 2 days a week to create a routine for both of them. She does wish it was not called adult day care and frankly so do I.
Soon after, Juliet took the Powerful Tools for Caregivers class that she calls the light from God. This is where some feelings of guilt were able to be dealt with and where she learned that it was okay to take a nap.
Some advice from Juliet for other caregivers – Don’t sit in isolation, have someone hold you accountable for staying in touch with friends, find a place that will care and give your loved one dignity, and don’t focus on the loss. Recognize the loss but ask the Lord to give you the eyes to see what you have because it is all precious.
Final quote from Juliet, “I am living and thinking for two people, but I have life, so I am living for the both of us.”
Aysha Cooper is the owner of SarahCare of Snellville. She has a bachelor’s degree in Public Health and an MBA from UGA. She stays connected to her community as an Alumni of GNLI and currently serving on the board of Friends of Gwinnett County Senior Services.