Memories are a tricky thing. Most simply take it for granted, the seemingly simply act of being able to recall a special moment at will - your first kiss, making a game winning shot, the birth of a child, or an important life lesson, maybe. This ability, to recall past occurrences, to reminisce, is part of what makes us unique as individuals. The thought of losing this ability is terrifying in and of itself. There are so many incredible things that I hope to always remember about my grandmother, Ruby Fern Roberts - Maw-Maw, as she was called. I pray that I never lose them. They are now one of the deepest parts of the person I’ve become.
I lost my Maw-Maw, my grandmother Ruby, on December 5, 2015. She suffered from Alzheimer's Disease, Congestive Heart Failure, and other ailments as well. Even now, it's still difficult for me to think about her for too long without breaking down. Even writing this statement has required several pauses and silent reassurances that I need to be strong. It's an understatement to say that so much of what she went through, what we went through as a family, was a nightmare. Despite so much of it being a tragedy, I continue to thank God for allowing me to serve as her caregiver. Being a caregiver to someone you love as they slowly say goodbye is indescribable. I shared caregiver responsibilities with my Aunt Nellie and regardless how hard caregiving can be, I know we both will forever cherish those final memories we made with her and simply being so close to her for so long in her final years.
I first started noticing things change with my grandmother in 2012. I was living in Wisconsin and working to recall Governor Scott Walker and a few other state senators. I remember that our phone calls were never as long as they used to be and that she seemed to simply not engage with me like she had before. She would get sad at the thought of me being far away, many times to the point of crying. This made me question whether it was even good for me to call her because she would often leave the phone upset or asking me to take time off and come back home. Always followed by, “Just come home. You don’t need to be working that hard for those people. Come home and I can help you with bills and everything.” And she would’ve too. She always, and I mean always, put me and our family first. She had very little money, was on a limited income and yet there were many times that I had to sneak the $20 she forced upon me back into her purse when she wasn’t looking. I knew she couldn’t afford it. She knew she couldn’t. But her giant heart, being so full of love and compassion, always cared for others first. Even in the final months of her life, when she was down on her luck and in the hospital, she always complimented the doctors and nurses, offered to make them dinner or let them stay with us.
I continued to call her but the conversations got shorter and more sad. I knew that something was wrong. This is the woman who practically raised me. She lifted me up during some of the most trying years of my life. I was heartbroken.
My aunt Nellie visited her daily. I remember the first time Nellie and I talked about what was going on. It was later in 2012 and at this point I was working on a congressional race outside Pittsburgh, Pennsylvania, having badly lost in the recall effort in Wisconsin. Nellie is one of the best people you could ever know and she always tried to make sure I didn’t worry more than I had to. I never told her but it was at that point that I knew I wanted to finish what I was doing and come home. I struggled to finish that campaign and found myself being stressed, exhausted, and very sick a lot, forging ahead nonetheless.
I left Pennsylvania as quickly as I could. I was needed until the week following election day. By mid-November 2012, I was home. I was home and back in the arms of the sweetest lady I’ve ever met. When I concentrate hard and ignore the sadness that followed in the next years, I can almost feel how happy we were once again. She was really forgetting things a lot and we knew what was wrong but she was happy. I was happy. Sometimes I wonder if that kind of happiness will ever come to me again. I guess only time will tell.
It wasn’t until around this time that I began to think once more about Alzheimer’s and Dementia and their echoing impact on our world. As a freshmen in college I was assigned my first psychology paper on Alzheimer's and Dementia. I arrogantly pieced together some thinly researched facts and never thought much about it again. I think back about that young and ignorant 18 year old, the one that submitted that psychology paper. I think about him often actually. I wish I could manipulate time and speak with that kid. I wish I could beg him to do so many things different. I wish I could scream at him. I wish I could give him advice and warn him. Most the time, I try to simply put it out of my head and focus on what I can do today to help those that are suffering and to keep this horrible disease from becoming an even bigger and more catastrophic epidemic.
I remember the last real and complete moment that my Maw-Maw and I had a conversation. We talked all the time, of course, but I mean a conversation in which I knew she had complete control of all of her senses and was fully aware of what was happening. It was the last time I ever saw her snap back and understand what was going on. Sometimes, looking back, I think part of that made my family a bit lucky. She always got to live in the moment and never knew of or acknowledged having any problems. The family all noticed it. It became some of the toughest things many of us will ever experience. But I don’t think she really noticed it much after that night.
It had been a really bad night. We had some family drama and were up late. After everyone ate and went on to bed it was just my Maw-Maw and I in the living room. She told me, “David, I know what is happening to me.” I gave her a puzzling look and asked what she was talking about.
“I know that there’s something wrong with me," she said, "I can’t hardly remember anything. I don't have much longer left here, David”
She paused for a brief second and started to speak again. I sensed the sadness and vulnerability, on her face and in her voice. I tried butting in to interject some reassurances and words of comfort but she was determined to set the words free before she lost the ability again.
“I’m so happy you’re here with me,” she told me. “You’re like one of my own kids. I love you so much. I’m scared and I may need you to help me some now, little David. I don’t want to be put in no home."
"Can you please stay here with me. I’ll pay you. You won’t have to worry about anything," she said, pausing for a moment but quickly continuing on.
I started to talk again. She continued to speak over me but this time I could see her pain and helplessness so I continued on.
“I am not going to leave you, Maw-Maw. You've always been like a mom to me. And don't you worry, I will watch over and take care of you. I'll be here and will help Nellie with whatever yall need. We won’t let anything bad ever happen to you. You won’t ever have to leave your home and if the time comes when you need us to take complete care of you - we will do it. You will have a happy, good and long life with people who love you at your side.”
We were both crying. I hugged her and she grasp onto me like I had never seen her do. She held me as if to find letting go meant her going back to that place again. That place where she was confused, scared, and couldn’t remember things.
“I love you,” she told me.
“I love you too, Maw-Maw,” I said. She continued to hold on to me. Both of us crying.
“I’m sorry Maw-Maw. I wish I could change things. We’re going to find a way to make you better. You’re going to live a long life I promise you.”
She pulled away and looked directly into my eyes.
“Promise me that you won’t leave me, little David,” she said. “Promise me that you will stay here and take care of me. Don’t let anyone put me anywhere, please.”
“I promise you,” I told her. She hugged me again and sat back down. I laid on the couch in the living room with her. She fell asleep before I did. She looked so peaceful that night. If just for that moment, on that night, she slept as if the burden of the world had been lifted from her shoulders. I watched tv and waited until she was an hour or two into her sleep, silently excusing myself to the bathroom - to cry, to think, and to pray.
I was blessed by all she did for me - voluntarily and with disregard to personal sacrifice, she raised me into a man that knew right from wrong and had the qualities necessary to contribute to this world. Although she never achieved large amounts of monetary wealth or was known around the world, she didn’t need to be for me to be proud of her. I can't even imagine finding another person in this world for which I have so much love and admiration. She was, and will always be, my hero. I hope I'm able to spend what's left of my life doing things that I know will make her proud. Although it will continue to take some time before I finish piecing myself together from the trauma of losing her, she taught me to be strong, and one day I will be again.
I proudly stand today as an advocate for those who struggle with Alzheimer's Disease and other dementias. In the U.S., one-third of Americans over 85 are already affected by Alzheimer's. Globally, nearly 50 million people are living with dementia, most of which is caused by Alzheimer's, and absent effective drugs or other interventions, that number is expected to double every 20 years. There is no cure and with no treatments, caring for them often falls to their loved ones or assisted-living facilities.
To solve this crisis and find a cure we must work together to spread awareness and educate each other. We must urge our leaders to provide the funding that is necessary to find a cure and save countless families the agony and sadness of watching their loved one's suffer and pass away.
The end of Alzheimer's disease starts with you. Please make a donation to help the Alzheimer's Association advance research into methods of treatment, prevention and, ultimately, a cure.
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