It started off with forgetting where the car keys were—not that out of the ordinary. It then progressed to forgetting to take his medicine. Then there was cold food like yogurt and milk being left in the cabinet instead of the fridge.
I was a new mom, and I was overwhelmed with everything that came along with that. I was tired, and I was having my own forgetful mommy moments. Maybe that’s why it took so long for me to see it. Or, maybe I just didn’t want to see it.
When my dad was given the diagnosis of Alzheimer’s, it didn’t surprise me. The signs were there. But it didn’t punch me in the stomach and take my breath away. That didn’t happen until later.
My sister and I tried for so long to be his caregiver. We were driving the 20 minutes each way, back and forth between our homes and his, every single day, with one baby in tow. And then later, two babies tagging along. We were grocery shopping for him all the time. He would make food in the microwave and forget about it. He would eat nonstop, because he kept forgetting he had already eaten and his stomach wasn’t telling him he was full. He would forget he took his medicine. So he would either take it twice or not take it at all.
It started getting to the point where he could no longer live alone. It was becoming a dangerous situation, and we knew he needed round-the-clock care. So we reluctantly put him in a nursing home. I knew he was safe. I knew it was for the best.
But there it was: that punch, right in the gut. Every time we would go visit him, he was angry. He felt abandoned.
He would say hurtful things. I knew it was the disease; I knew it wasn’t him. But with every comment, every look, every lost memory, I was wounded. My heart was being ripped apart. No amount of kind words coming from other people, who were only trying to help, were going to make me feel better. My dad was physically there, but he was gone. Talk about taking my breath away.
My once tall, strong father is now a frail reflection of his former self, at least physically. His humor, wit and sarcasm still comes through on the “good” days. He sees his grandkids, but he doesn’t know them. He doesn’t know that Sebastian refuses to try new food. He won’t be able to see the twins and know that Silas looks exactly like him and see that Simon has his eye color.
My kids don’t know my father, the man I had the privilege of growing up with. They only know their grandpa: the fragile man who can’t pick them up or play with them. It is not the same. They won’t be held in his once strong embrace or hear him strum the guitar that he taught himself to play. They won’t hear the way his accent made everything sound so much more interesting. They won’t hear his laugh or listen to his beautiful voice sing. This disease stole everything he was and everything he could have been. My kids were robbed.
The scary thing about all of this: Alzheimer’s is genetic. My dad comes from a long line of people who have suffered with it. I am terrified I am next.
I am petrified I will slowly start forgetting. I have days where I can’t remember the simple name of something that I am staring at. Yes, I am a mom, and yes, I am stressed beyond belief. Forgetfulness is pretty much synonymous with being a mother, I am quite aware. But I am talking about bigger things, scarier moments. All too often, for example, I am talking about something and I am trying to describe what I am talking about, and my mind can’t put my finger on what it’s called, simple things that I should know. Then, while I wrestle with my brain, cursing it and feeling betrayed, it will come to me. Cup, Dana. That thing right there, that you are staring at and getting angry at because what the hell is it called? It’s a cup.
I look at my children and can’t imagine a life not remembering who they are, indulging in their silly little mannerisms or their annoying habits that I wish they would quit (but I giggle at when they aren’t around). Those are my memories. Those are the things that I cling to when the world gets cold and I feel like I am drowning in a pool of sadness and anxiety. What would I do without them?
I look at my husband and imagine growing old with him: going on vacations, holding hands, reminiscing about the beautiful life we created, becoming grandparents and spoiling them in a way that only grandparents can. But what if I grow old and I forget that he is the father of my children? I am frightened of putting the burden of being my caregiver on him, even though I know he would never make me feel that way. He would love and protect me. He would remember for me. The same way I do for my dad.
I know I can’t live my life being scared of the what ifs. I can’t agonize over a life that I may never have to experience. But I am only human. When you see someone you love more than anything slowly wither away and become a shell of his former self, I think it’s only natural to be scared that you will suffer the same way.
I can’t stop Alzheimer’s. I can’t make it go away. There isn’t a cure. If it happens, it happens. When I go visit my dad, I study every wrinkle on his hands. I try to burn the image of his face in my mind. I do the same with my kids. I stare at them when they don’t know I’m looking. I listen to their laughs, giggles, even their yelling. I file it away in my mind for the days when I need to believe there is good in the world and to remind myself that my life is amazing.
The one thing that never goes away with someone with Alzheimer’s is the love. My dad knows I love him. And I can feel his love, even when he doesn’t say a word. I make sure every day of my life that my husband and children know they are my everything. They will never have to wonder. But if there ever comes a day when I can’t put it into words and my mind is no longer my own, they will have the memories. They will have these words: I love you more than you could ever know. You are my life, and you make my world beautiful. Every day spent with you was a gift. I love you, I love you, I love you.