My mom was always a very musically inclined person–not only she was a gifted musician who played several instruments (the guitar, the French horn, and the flute, to name a few), but she also just loved listening to a variety of different bands and musicians across genres. My mom passed on her love for Cat Stevens, Simon and Garfunkel, Queen, and “oldies” to me. So many of my memories of her and my childhood are infused with the sounds of her and my dad’s music blaring the speakers in the living room or the old Pontiac Bonneville.
And music continues to be one of the strongest threads that connect us to who my mother was before the illness started to take over. The minute you turn on the Solid Gold Oldies station, she is singing, clapping, snapping, and stomping. And her clarity seems to improve almost instantly. She is more engaged, more happy, more alive than she was just minutes prior.
This morning I spent a few hours with her before my grandmom came to pick her up. We listened to oldies and I sang along (loudly and badly) while she whistled and snapped along (in proper rhythm, I might add). The highlight was when “The Lion Sleeps Tonight” started playing. Not only was she really into it, but she was also making it very obvious that she found my falsetto questionable (a fair observation).
It was nice to share a laugh with her and realize that you can still find happiness and normalcy in situations that, on the surface, seem like they leave no room for such luxuries.
A few nights ago, my brother, his wife, me, and D all sat around their kitchen table, eating dinner together and shooting the shit. It was my brother’s 42nd birthday, and so we were spending the day together, relaxing and hanging out. It also happened to be the day of my cousin’s funeral. Continue reading →
I like to think I’ve been getting better about writing more regularly, but I just realized I haven’t been posting as consistently as I thought. I blame this in part to the fact that we are somehow barreling through March at a breakneck pace (seriously, I’m pretty sure it took twice as long for us to get through February and it’s 3 days shorter!), but it could also have something to do with the fact I’ve been busy. I am taking comfort in the fact that this is partially due to the fact I’ve been writing other things for other sites. That counts for something, right? Continue reading →
Well, I can’t post much right now because I need to start my work day soon, but I wanted to share some exciting news for those of you who might not already know: xojane.com published one of my articles yesterday!! I am so beyond excited and thrilled for the opportunity and am completely blown away by the response I’ve received so far, both from people close to me and from people I’ve never met. It’s been so awesome to read all the responses and get so much feedback, although admittedly it’s a bit bittersweet (it sucks to know so many other people understand the pains of Alzheimer’s firsthand…).
But the experience has definitely reenergized me and I’m even more focused than before to get my writing out there and to keep finding avenues where I can promote my work. And I really hope I get the opportunity to work with xoJane.com again–what an awesome publication to write for! (The same day my article premiered, they posted a piece by one of my favorite comediennes, Lisa Lampanelli!!)
So… I’m stoked, and humbled, and grateful, and overwhelmed, and excited. 2013 is my year, damnit, and this is just the beginning.
Today the Holiday Music Bracket officially started at my work. My friend Dave and I put it together, using suggestions from our co-workers. For the first round, we had a little fun with the match-ups, pitting songs against each other that created some kind of theme. We had one battle royale of “A Very Motown Christmas,” which had Otis Redding vs The Drifter’s version of “White Christmas.”
A part of me is almost embarressed at how long it’s been since I’ve written a proper blog, especially since one of the last blogs I wrote was resolving to write in this blog every week, but as I sit here with more than half of 2012 already behind me, I think it would be nearly impossible for me to put into words most of this year, especially while it was happening.
In fact, that was exactly how I felt most of the time I attempted to even think about posting about whatever random things happened. There just hadn’t been enough time to really process the event, or the subsequent emotion that event brought on, before something else equally as impressionable happened. I think what made these events particularly difficult to write about were that there was no real clear line between whether they were “good” or “bad,” and it took a considerable amount of time and additional living to figure out what they meant for me overall. Continue reading →
When I was in second grade, I was enrolled in CCD at our church. The point was to instill me with a more fundamental knowledge of our faith — to help me realize more fully what it meant to believe in God, and what it meant to be Catholic. There was a textbook, with pastel paintings of Jesus and his disciples, helping the sick and feeding the poor. There were tests — memorizing the Commandments and reciting the Our Father. I needed to learn these things to make my first Holy Communion, to advance in my faith. The weight of the spiritual world was essentially resting on my shoulders, being this was the first rite of Christian passage that I actively was participating in.
But none of that mattered. The fear and anxiety of the tests and the practicing and the ultimatums (“If you don’t learn this, you won’t be able to get Communion,” which loosely translated into “You won’t be able to wear a pretty white dress and have your own special party”) completely paled in comparison to my true source of anxiety every Sunday: the open staircase that led to our classroom. Continue reading →
On September 10, I will be walking in the Philadelphia Memory Walk in honor of my mother, who was diagnosed with early onset Alzheimer’s in 2005 at age 54.
Please help support me, and my team, Team Nay Nay, in finding a cure for this debilitating disease.
In my profession, I have worked directly/indirectly with pharmaceutical companies for about 4 years. This has been a bit of a moral struggle for me, between the animal testing and my feelings about profiting off other people’s pain. I try to remain positive about it–to think that there is a “greater good” to this industry–that these corporations are trying to legitimately help people and aren’t just a larger network of charlatans, peddling snake oil and potions to will cure everything and nothing.
But last night I inexplicably became awash with rage as I watched my mother diligently take her handful of pills one by one as we sat at the kitchen table. This has become as routine as eating or sleeping, going to the bathroom, or putting on her shoes. In fact, the other night when I was helping her get ready for bed, she instinctively held out her hand after we finished brushing her teeth, anticipating that I would hand her meds and glass of water. I think about long she’s been taking these medications and how much her condition has worsened in the past year, and beyond that, the past 5 years since her official diagnosis, and I wonder how much good any of it’s actually doing her.
I know there is no cure–I know all the treatments are essentially a crap shoot, and frankly the only thing we can do at this point is cling to the hope these pills bring–not hope for a cure, at least not for my mother, but a hope that it will keep what we have left of her with us a little longer. Beyond that, I have to let go of my cynicism and conspiracies enough to believe that the companies making/manufacturing/selling these drugs have my mother’s–and their other patients’–best intentions in mind.
There is no reason to be sad today: I got into work without a hitch after my doctor’s appointment this a.m. In honor of the beautiful weather, we decided to have a cookout at work. Vince and I were successful in our search for Shiner Bock nearby so I could introduce me and D’s beloved beer to my beloved co-workers. There have been plenty of laughs during today. It’s been a good day.
But that is always when it seems to hit–when I least expect it. I got listening to some music and there was an Elvis cover, and it made me want to listen to “Can’t Help Falling in Love,” the song my mother used to sing to me when I was a baby.
The past few months have been hard. My mom’s decline has been more noticeable. Going out requires a constant watchful eye, and general one of us has to walk with her/guide her along. Bathroom breaks need to be assisted. Changing clothes is a 2-person job. With every day that passes, I feel another piece of my mother slips away.
I have done my best to make peace with this situation, with this disease. There’s really nothing else that can be done: there is no cure for Alzheimer’s, and at this point, even if there was, the disease progressed considerably in my mother. I have to realize that saying “it is too late,” is being realistic, not being hopeless. And I have to remind myself I don’t need to be hopeless to be realistic.
There are still good moments–my mother is still often in good spirits. She still can crack jokes, still manages to find her comedic timing. But while sometimes those glimmers of normalcy bring happiness and hope that we might have more time than we think, it often makes me realize how much of her we have lost in the last 6 years.
We’re currently staying at my parents’ house after our apartment plans fell through rather unexpectedly and abruptly, and for the most part, this arrangement works out well: We’re able to live rent-free temporarily and pay down some debts/figure out our “what’s next” without having the issue of being locked down in a lease. My dad has been a very gracious host to us and being more than understanding about our situation. This also allows us more time to spend with Nay Nay, and an opportunity to help out my dad now that the season is picking up again on the farm.
The experience of living back in the home I grew up in again is odd at times. Sure, I’ve been visiting there consistently since I first moved to college at 18 and then officially moved on my own after I graduated at age 21, but now I’m actually there. All the time. I find myself retracing my old steps, re-remembering the way I used to move through that house when I considered it my own, noting the things that are the same, the things that have changed as I have.
I keep finding myself saving, “If only my mom could see this…” or, “Oh man… what would my mom say about X?” What would she say about her violets? She always managed to keep them in bloom.
If only my mom could see how much expired stuff was in the fridge! She would have lost it…
I find myself making the same evaluations when I look at my mom– her once perfectly manicured nails (hours of my childhood spent tortured, waiting for her fill to be done at Nails by Diane), now uneven , barely ever painted. Her roots, always colored before her secret could show, now revealing their true colors (or lack thereof). Her beloved coach purses filled with strange collections of napkins, yarn, assorted fruit, and any other odds and ends she might have picked up and stashed along the way. I find myself wondering, why would she say if she knew? If she could see this other person?
It’s hard to explain this idea of viewing my mom as 2 different people: my mom and Nay Nay. I love them both unconditionally, but they are different people to me. I live between two worlds, two mothers–the one I have now and the one I had, the one whose memories linger in the rooms of my childhood home, in the smell of her perfume, in between the pages of old photo albums, her handwritten notes and lists, yellowing, aging, begging, “Remember me.”
