It was a simple story from my childhood. Mom was telling it – again – but that was not unusual. Mom LOVES her stories. It was Christmas 2007 and my aunt and cousins were over for dinner. In this particular tale, I was 18 months old and found something in the yard I decided to eat. As she was telling it, she paused, looked at me, and said, “What was it that you ate again?” My heart stopped for just a second. I asked if she was joking. She wasn’t. I said, “It was a slug mom. I ate a slug.” Then I excused myself and went to the bathroom, and sobbed. The fact that she could not remember was confirmation to me that something was drastically wrong with my mom. Earlier in the year I had noticed, as had one of my sisters, that she was repeating herself a lot. Often, she would say something, then 30 seconds later repeat it the exact same way. I was convinced she had a brain tumor. I spoke to her and to my dad and expressed how concerned I was that something was wrong. She spoke to her doctor, but of course, since she was only 57 at the time, concerns were dismissed as stress, a sinus infection, and just plain aging. Never have I wanted to be wrong about something more, but I knew I wasn’t. Others started noticing and commenting. That is when the testing began.
At first, they thought it could be the result of her thyroid condition not being under control. Thank God! We were all so relieved – until her symptoms didn’t change. Then the doctors thought her dementia was related to sleep apnea. Thank God! We were all so relieved – until her symptoms still didn’t change.
It was September 30, 2008 as I was receiving news of my nephew’s birth and anticipating my own first child’s arrival when my parents called with the latest results. Mom had been diagnosed with early onset dementia. She was then 58. We were all devastated, but I thought she would just get forgetful. I had no idea. Then, in November of 2009, after more and more testing, she was officially diagnosed with early onset Alzheimer’s disease. I cried for two weeks straight. My mom was on the phone comforting me! That is how she is – loving, patient, full of grace and unwavering faith. I have often heard the saying that you cannot control your circumstances, but you can control how you respond to them. My parents are a living example of how extraordinarily you can walk through something as awful as this. My dad is retired and he is her rock. He says it is a privilege to hold her hand and journey through this with her. Mom’s biggest concern is for all of us and what we’ll have to face, which again, is so typically her.
She is 62 now and is slipping away from us little by little. I am so thankful for what we have left. I can still talk to her about my two little boys and what we’re going through, and she is still able to offer me little nuggets of parenting or marital wisdom. I’m cherishing these moments. I know they are fleeting, and I don’t know when it will stop. I just know it will stop. We’re losing her in pieces, in painful gradual pieces. She is often confused, she can’t see well, and she hallucinates regularly. It is scary and heartbreaking to see my beautiful young mother this way. She loves her grandkids, but she can’t be the grandma she has always dreamed of being. We’re all being robbed of that. This disease is so cruel.
I’m terrified of what comes next. There is no hope with Alzheimer’s. She can’t “beat it”. I’m dreading the day, and I know it is coming, when she no longer knows who I am, or who any of us are.
We have no family history of this disease. It was never even on my radar as a possibility for one of my parents, especially so young! We need funding, we need research, and we need a cure! My sisters and I look at each other and wonder…will that be us? Are we headed toward that same fate? I never want anyone to have to go through what our family is enduring, and I don’t want my sisters, or myself, to be next.