Dear Mom,

About two years ago Dad took the boys and I out to dinner and broke the news.  “I don’t have a formal diagnosis yet,”  he said, “But I recognize the symptoms because your grandmother and great-grandmother had it;  Mom has Alzheimer’s.”  It did not come as a shock.  There were so many signs I had dismissed over the years or attributed to old age but deep down I knew.  We all knew.  It was just easier to pretend until we couldn’t anymore.  At first things seemed to progress… “normally.” If there is such a thing with this monstrous disease.  You were anxious all the time about everything. You took to calling me Kayla and I didn’t correct you.  You never knew what day, time, season, or year it was but it was still you. I still had a mother.

Then came June.  Much like a patient with MS you lost all sense of balance. You’d be walking along, happy as a clam, and then BOOM!  You’d hit the pavement like a sack of bricks, having lost all sensation in your legs.  Dad got you a cane, which you named Irene (I lean on Irene, get it?)  But as one doctor after another assured us the problem was likely to get worse before it got better, Dad had no choice but to sell your beloved Ocean City condominium with the two sets of steep stairs and purchase a larger, ground floor unit across town.  The first couple of weeks after you moved in were nothing short of a torment. 100 times a day you begged whoever was there to take you home, and by home I don’t mean your condo on 55th,  I mean Medford Lakes. The situation has improved but you still ask me from time to time.  I’ll catch you looking out the window and you’ll say, “It’s such a beautiful day. We should walk down to the water and wait for the birds.  Will you put Patrick in the stroller?”  My brother Patrick is 42.  “Of course mom!” I respond as cheerily as possible.  “I’ll have him ready in a second!”  Then I dash out of the room as if I’m an exuberant 7 year old aching to get outside. I go to the kitchen, count to thirty, (that’s usually all it takes) and when I return you’ve forgotten the entire conversation.  Only I don’t.  I spend the rest of the day remembering that beautiful, almost Spring morning when you woke us up to say the snow had melted, the sun was shining, and all the birds were on their way back from Florida.  “Get the bread!”  you cried.  “They’re all headed to the beach and they’re going to be hungry after such a long trip!”  and off we went.  With one brother dozing in a stroller and another hunting for frogs, we’d wait by the waters edge waiting for the birds, our toes skimming the chilly water, your hand laced in mine.  Today, remembering the feeling of your thumb gently rubbing my knuckles as we sat together, I think waiting for them to return was far more precious than the day they all finally came back.

Fast forward to September.  Dad woke up at about 3 AM to discover you missing and the front door wide open.  He jumped in the car, drove to the end of the condo complex, and found you shivering by the Bay, scanning the water’s edge.  “Virginia,” he whispered gently.  “Virginia it’s so cold please let me bring you home.”  “Shhhh,”  you replied.  “Be quiet or they’ll fly away.”  “Who?” he asked.   You smiled and pointed out towards the dark and lifeless water.   “Over there,” you said.  “The birds. I told you they’d come back.” 

We hired a locksmith company.  But the day before they were due to arrive, when Dad was confident you were asleep, he took a shower and emerged to find you missing.  Thankfully you only made it about a block from the condo, but the moment you realized Dad was chasing after, you latched on to some poor stranger out walking her dog and screamed, “Call the police!  Please, that man is trying to kidnap me!”  When they arrived the police tried their best but you refused to go home.  “I’m not going anywhere with that man,” you told them. “He’s trying to kill me.  Please call my daughter,” so they did.  Over the next two weeks I got lots of calls, and I missed lots of work, because you were terrified of Dad. Nothing we said could convince you he wasn’t a monster.

We saw more doctors, new medication was prescribed, and though your trust in Dad returned, he decided it was time to hire a home health aide.  She was WONDERFUL:  kind, patient, thoughtful, and unrelenting in her efforts to get you up and walking.  Although he never asked, she completed countless household chores while Dad tried to enjoy a little time off.  Still, you cried from the moment he left until the moment he returned.  You told the sweet lady to leave countless times, and called every member of our family at least once saying, “I need Denis to come home.  I’m all alone.  Can you come? I don’t want to be all alone.”  

By the end of the month, when the sweet home health aide lady told Dad she’d secured a different position that offered full time hours, I told him not to replace her.  I talked to my boss, submitted my application for FMLA, and have been your unpaid, extremely disgruntled home health aide ever since.

You don’t remember but I used to write a blog, The Kevin Chronicles. You called it, “That page where Rachel airs her dirty laundry.”  It was about parent abuse, a VERY taboo subject, but for a long time I thought I was helping people by being so honest.  That being said, I haven’t written a word in over 2 years.  I haven’t wanted to.  Thankfully Kevin has evolved from that demon child sent from the depths of hell to destroy us.  Don’t get me wrong he can still be a DICK sometimes, but gone are the days of bruised arms, chipped teeth, and broken hope.  I stopped writing because I no longer felt the need and frankly, I just wanted to put it all behind me. But then you got sick, and I made the decision to see you through to the end of this.  I’ve also decided to write as I go, because otherwise, my heart may not survive.  

Yesterday nearly destroyed me. I have no recollection of you talking about the Alzheimers when you were still lucid, but in the imaginary world you now inhabit, you tell me quite often, usually through bitter tears I can’t wipe away fast enough.  Yesterday I sat in your lap for almost an hour, the way I did when I was little with my legs wrapped around your torso and my arms around your neck.  Only this time I was the one doing the rocking.  Back and forth, back and forth, assuring you over and over again that I loved you and everything was going to be OK.  

I hate lying to you.  I also hate bathing you, it’s weird.

So, in closing, I don’t know how I’m going to get through this but I console myself with the knowledge that I’ve been through worse.  I’ve decided to approach this storm the way buffalo do, by running right into it at full speed.  You reach the sunshine faster that way.  And when you have forgotten who I am, I will endure by remembering who you were.  

You collected chickens, made the best apple pie I’ve ever tasted, and made up the most ridiculous words I’ve ever heard.  Running errands was called “going foota foota”, the spatula was a “flippa flippa”, and all alcoholic beverages were referred to as “hoobie doobie juice”.  Your farts were really loud but never smelled bad, your nails always looked perfect, and you loved sparkly jewelry.  You also loved gazing at the sky in Spring, patiently waiting for the birds to come back.

It’s going to be a long winter, but when the frost is off the ground I will bundle you up, set you in your wheelchair, and walk you down to the edge of the bay.  I’ll take off your shoes, allow your toes to dangle in the frigid water, and hold your hand, rubbing my thumb gently against your knuckles as I do.  And even if they haven’t returned I’ll point out towards the sparkling water breathless with anticipation and say,   “Look Mom, over there, can you see them? It’s the birds.  They came back.”