To anyone who has been touched by Alzheimer’s, I stand with you. I know there are millions of us, but I have never felt so lonely as I did in those first few months – years, really – as I navigated what needed to be done for my mom, when, and by whom. Alzheimer’s is a tricky disease that plays out differently in every individual. No one could really tell us what to expect, except vaguely; there is no timeline or schedule; there are limited medicines and no cure.
Let me take a minute to tell you a bit about this woman, my mom, so you can fully understand what Alzheimer’s has stolen. There was nothing my mom could not do, from basic plumbing to planning large parties or family trips to hosting and cooking Thanksgiving dinner for 20 to 30 people. She was a fantastic gardener and cook and loved listening to music and singing. She loved to play tennis and to travel; she was very involved in our schools and community, especially with the Philadelphia Parks Alliance. She attained her Bachelor’s degree while raising 3 young children (cue major guilt feelings for the snarky, bored expression on my face in her graduation pictures). Our family hosted French and German exchange students during many summers, and most became part of the family and returned many times. She was a committed friend.
Above all else, she was the most devoted mother – as my brother once said, “Mom was my biggest fan”. Our birthday parties were simple but special – the birthday cake was always homemade, she planned treasure hunts in the woods near our home, or pin the tail on the donkey in the backyard. At Christmas she baked cookies of at least 6 varieties and then plated them up and gave them as gifts to all of our neighbors. She made us homemade Cabbage Patch Kids and Pound Puppies for Christmas when they were all the rage and couldn’t be found in stores. She made our Halloween costumes. As we got older, she was truly just a phone call away, so reliable, always available to listen. And she just couldn’t wait to be a grandmother.
It’s weird to write a eulogy for someone who is still alive, but that’s what Alzheimer’s does. The person stays but who they were goes.
I could write multiple articles, probably fill a whole website, about the nitty gritty details of what it takes to face one’s suspicions and have a conversation about the possibility of Alzheimer’s with your beloved parent. About reading the book When Things Fall Apart by Pema Chodron and wanting to hurl it against the wall after about page 13 – I wanted to fix it, not accept or sit with it. About wanting to preserve my mom’s pride and independence, but also being responsible for her safety. About delicately extracting personal information – Medicare number, financial information, etc. – from a private, independent woman where it had previously not been my place to interfere. About the painful reality that I would hire a babysitter not to go out with my husband or see friends but to take my mom to a doctor’s appointment or to attend an Alzheimer’s Association meeting or a support group. About the countless hours I spent trying to figure out what needed to be done – visiting assisted living facilities; making doctor’s appointments; calling care managers, banks, lawyers, the Alzheimer’s Association hotline, care agencies; worrying about my own memory and fate. About triaging surgery decisions with an orthopedic surgeon while standing in the middle of a grocery store aisle and later while watching my kids at the playground discussing with the neurologist the potential impact on my mom’s brain of her going under general anesthesia. About how I spent way more time on the logistics of my mom’s life than I could ever spend with her.
Oh, my goodness, the agonizing, sleepless nights, the constant dull ache in my stomach, the heaviness in my heart. The grief and responsibility weighed on me constantly; I had trouble eating; my RA kept flaring up, which meant I was in terrible physical pain; and I never laughed – life was overshadowed by such a dark and heavy cloud, how could I?
Do you see why I needed an oxygen mask?
It may be helpful for anyone who is dealing with Alzheimer’s in some capacity to hear our story in more detail and some day I will write more. But, for now, I want to simply share the message of hope I take from this painful journey: this disease, this diagnosis, tore at the bonds of my family to the point that I thought it would break us. The grief and responsibility ripped up my heart and broke me down until I was just a shell of my former self. Eventually I learned to face into the fire and to not shrink back. And from the ashes of my soul, rose a stronger, more connected, more grounded, happier and much healthier me.
I look at the Alzheimer’s diagnosis as a shot across the bow, a message from the universe to PAY ATTENTION. My mom was always going to predecease me if life played out in the regular order of things. So instead of taking her for granted, I really paid attention. I visited and called more often when she was still able to communicate, and now I visit her as often as I can just to be with her. My brothers and I talk more often. My mom’s friends/our hometown community, have stayed in touch all these years, with me and with her, supporting us both through the diagnosis and truly honoring the friend and the person she was by giving her the highest quality of life possible.
As for me, I have a deep and wonderful support system from my husband’s quiet, constant and loyal love to friends who I can feel almost literally propping me up at times. I try to live in the moment, to seize the day, to be present with my kids even when, admittedly, there are moments I’d rather check out!
I try not to dwell in the land of wishful thinking anymore and to play the cards I’ve been dealt. To be awoken to the fact that all of this messiness and pain and love and friendship IS life, is a gift. As John Kulish wrote in Bobcats Before Breakfast, “I grieve in the same measure I have loved”. And that’s all there is to say about that. My mom was my biggest fan, and I am also hers.