“‘Dad, you were always there for me,’” I read. “Except when you weren’t,” I add out loud.
It was hard enough to watch my grandmother slowly lose her memory and, eventually, sense of self. But now, I’m not even 30, and I'm to watching it happen to my own mom.
I have to admit that I never truly realized just how cruel Alzheimer’s is until these past two years. My mom is only in her sixties, which is young to have the disease, and to me, she's still young, period.
She still needs to take care of me, to keep my life in order when I can’t. Now I'm dealing with the fact that she will probably never know my children or be able to help me plan my wedding, and it's been the hardest thing I’ve had to deal with in my adult life.
Besides the predicable feelings I have (sadness, helplessness, regret), I’m shocked by other emotions that have weighed on me as a result of her illness. These include anger, panic and even jealousy (which I’ll explain later).
As a family, we both talk about it, and don’t talk about it. I avoid discussing what’s happening to her if I can help it because I sometimes feel that if we ignore it than it will go away. Even before she was diagnosed, I was in denial that something was wrong. She knew -- she wanted to go get tests done and I told her everything was fine and she was overreacting, even as I noticed a transformation happening.
There had been the usual, forgetful mom things -- I noticed her telling the same stories to me twice in a row. But then I noticed her forgetting her own daughter’s name. I noticed how she seemed to need my dad more than she used to.
I wasn’t ready to admit that it could be anything more than gradual aging though, because I knew that a formal diagnosis meant that I’d have to accept that my mom wasn’t going to be in my life the way I wanted (and needed) her to be.
Regardless, she went to the doctor and got a brain scan. Multiple other physical and psychological tests confirmed our suspicions. They put her on a medicated patch that's meant to slow the disease's progression, and she began to go to a support group. It had happened to my grandmother, and unbelievably, it was happening, formally, for real, to my mom.
Since then, you might think that I would have come to accept the fact that she was sick. But no matter how I try I can’t find any sort of peace with it.
For a while I blamed myself (which I realize is completely ridiculous and self-centered). I thought that all the crap I put my parents through when I was a teenager gave my mom so much stress that it had physically hurt her. This killed me for months until friends and family convinced me that I was out of my mind.
Then I blamed God, which doesn’t do any good, of course. I blamed the doctors for not catching it earlier, when in reality, they caught it early. I’m well aware that we are hardly the only family in America dealing with this, but unfortunately that doesn't comfort me in the least.
I try to stay as positive as I can, but it's been difficult. It's especially hard to deal with the irrational jealousy I have for my older siblings, who got more time with the mom we all know and love, who had her at their weddings. She’s gotten to know their kids and help raise them.
I came along a lot later than my brothers and sister, who are all about 13 years older than me. They got more of my mom than I got to have, and as childish as that sounds, I don’t care. It’s not fair.
Am I ready for kids? Hell no. But that doesn’t stop me from panicking every now and then and thinking that I need to make it all happen now, this year, just so that she can be a part of it. This happens repeatedly and, luckily for me, every time I eventually realize that having kids when I’m not ready just so my mom can know them is not smart or responsible thinking.
What I try to do, and I think it’s all I can do, is appreciate the time I have now with my mom. I’m trying to suck up every little bit of knowledge and advice she can offer me and store that information in a safe box in the back of my mind where I’ll never forget it.
I see her as often as I can and talk to her daily about my life and hers. I ask her things like, “If I were getting married this year, what kind of flowers do you think would be nice for a summer wedding?” and I try to find out what her childhood was like.
I talk to my mom every day. As I'm writing this, I've realized that if my mom were well, I might not be finding the time to. Does that mean this illness is a blessing? No, not at all. But it does keep me grounded in the every day, in finding that time, and carving it out, and making compulsory time for the people you love a daily habit.
I’m learning fast that to keep my sanity I have to stay in the present, because that’s all she and I have.