Joyce R. - Sweet Cora
So I'm supposed to share my story as a caregiver for my wonderful mother, Cora Matthews. There are no words to express this story, but I will try to share some of our experiences to give you a birdseye view. My mother was the absolute sweetest woman. God blessed us and kept her that way to the end. However, I had to learn early on how to manage my mother to bring out the best in her. I had no experience and felt like a sinking stone in the lake with no way to get out. That wasn't a choice. I had to learn how for she depended on me and I had made the promise after she had begged to never institutionalize her. So......she remained with me until the end.
Along with my mother came my younger sister who is special needs. She has Down syndrome. She was the most wonderful caregiver for my mother. My mother had never gone anywhere without Lisa and Lisa remained by mother's side to the end as well. She loved my mother so much that even though it might two hours to feed her, she had the very same patience my mother had modeled for her as she raised her. All that she did for my mother, she did with love which made my mother feel so good about her care. She knew we loved her so much and we did it all out of love. It was our chance to give back to a mother who had 6 kids and sacrificed everything for us.
Sleep.....what is sleep when you are a caregiver? I would say I averaged between 2-4 hours of sleep each night for the almost 3 years I cared for my mom. Somehow, your body learns to adjust and you just do it. It wasn't like I got two hours straight. That sleep, whatever I got each night was always interrupted by her wanting to get up in the night to do various things....go out there and sit in the living room or get dressed at 1am for the next day or pick out her earrings for the next day or most often, go to the bathroom.
Her decline just broke my heart. I'm so glad she did not end up in the bed as a vegetable waiting to die. She left here after such a valient fight. I've never seen anyone with so much determination to go on and stay here. Some of that was driven by Lisa, her special daughter. Some of that was just her sheer determination to beat the disease. How can 78 pounds have so much strength? I don't know but being a former athlete and coach, I understand motivation. I would do anything to keep her here in good shape and engaged every day, all day. We took walks daily, sometimes, several times. We played board games. We watched birds and flowers. We stayed engaged and that helped her stay with us that much longer.
I was exhausted when she left us. It took me about two weeks to overcome the fatigue. I needed help. I needed some relief but there was no money nor did the $500 Alzheimer's grant go very far. It is a sad state of the circumstances of the caregiver. One feels so alone, so helpless, so needy but never willing to succumb. I needed help, some respite but I would never just allow my mother to be cared for by a medicaid facility. We must change this situation so that caregivers do not quickly become the patient themselves. Our nation needs to do so much more to find a remedy for this horrendous disease. I will do whatever is needed to continue my mother's journey and fight for help. Please help.