Here, There, Wherever You Are...

Dear Mom,

I’m writing you in the hope that if, sometime, you are able to have your own thoughts again, you might know what happened while you were in your Alzheimer’s slumber.  Some of this you may remember, like Sara, McKenzie and my college graduations, and the road trips to Wyoming and Texas and around the Nebraska countryside you love so much, and the funerals of your aunts and uncles and beloved sister, and the nights we sit outside and watch the full moon and stars and occasional fireworks, and the countless afternoons we walk around the neighborhood and wind up with chocolate shakes in Styrofoam cups that Dad finds nearly empty in the freezer and that makes you laugh.  You are with me when I get the offer for my first full-time job, and you ride around with Sara when she buys her first new car, and you clap proudly when McKenzie graduates from your Alma mater with high marks, and you get very excited to throw Dad a surprise party when he turns 60.  Mom, you should be so proud of the man you married.  He does everything he can to help, even when he has no idea what is going on.  He learned to brush your hair and separate the laundry and dress you in your favorite clothes and cut up your dinner when you forget how to use silverware.  He takes you to watch sunsets and eat ice cream.  He worries that he is not doing enough to help you, even though the disease constantly consumes our lives and mental and physical resources.  Please, please know that we do not blame you for getting sick.

… McKenzie moves home after college and is your caregiver most weekdays while Dad goes to the office.  Then the disease sticks a dagger in you, and a week before you turn 60 we move you to a care home for memory patients.  You hobble around the facility and stop speaking, but you seem to like having more people around.  Because you are there, you do not get to see Dad walk Sara down the aisle and marry your first son-in-law, or congratulate McKenzie on her new full-time job, or understand that I took a trip to another continent, or give Dad grief and good wishes on his 65^th birthday. 

Your body starts convulsing in grand mal seizures every few months.  They knock you out for a few days, but you recover, albeit a little slower each time.  You are placed on hospice, and along with a medication adjustment, you get a closet full of new swabs, briefs, floor mats and protective bed cushions.  One night, you stroll around the facility with more energy than you’ve had in months, and Dad goes around with you and smiles about how great you are doing.  The next day, a seizure cripples your legs and you stop walking altogether. 

Hospice provides a slick, reclining wheelchair.  You smile when we use it to free you from your lonely room and park you in the commons area where you can people-watch.  The August weather is unseasonably cool, so we roll you around the courtyard until evening shadows claim every inch of the sidewalk. 

Your appetite wanes, but you hold on and help Dad celebrate your 35^th wedding anniversary.  And then you forget how to swallow.  Your arms and torso extend and contract about every fifteen seconds until medication kicks in; sometimes this takes hours. Your body turns into a skeleton and the wheelchair goes into storage.  The hospice nurse tells us to watch for signs that your body is shutting down.  We visit you every day, and with each new bedside vigil, we check to see if your legs are turning blue, and then sigh with some relief when they are still warm. 

You stop opening your eyes, and one of the nurses comments that your knees are turning gray (your knees!).  They feel like ice cubes, and Dad tries to rub them warm every time he checks them. 

The hospice nurse says that your organs are failing, but you have a young heart, and it beats with strength for another one, two, three, four, five, six, seven days.  Dad tunes to the season-opening Husker football game on the radio so you can hear how the new coach is doing, and I sit with you late into the night as commentators discuss the team’s loss and outlook for the program. 

You are given morphine more and more frequently, and your heart keeps beating.  We play your favorite movies on my laptop.  Sara reads you articles from recent issues of Nebraska Life.  She also tells you, quite confidentially, that you are going to be a grandmother.  You get to relish this news at least a month before she shares the news with Dad and the rest of the family (just your style). 

You transition from present to past tense late on a Thursday afternoon.  Sara, McKenzie, and I were reminiscing about our childhood and Dad was laughing about the college football games you attended before you were married.  We were holding your hands when your pulse stopped and your spirit was finally free. 

… For the past several years, my emotions have largely been equal parts grief and anxiety.  I was indescribably upset that we were losing you--even though you were still physically present—and constantly worried about what would happen to you next or how painful your death would be.  Please do not be disappointed, but your passing brought the feeling of relief.  We felt some comfort in knowing that your body was no longer tormented by the horrible disease.  At your funeral, we celebrated your life without feeling guilty that we were giving up on you.  In fact, memories I had unknowingly suppressed because they were painful reminders of how you “used to be” before the disease began coming back.  For a little while, I felt almost as if you were going to come back, too.  I waited for the air to feel differently (better) now that you weren’t tied down by a mortal disease, or for you to visit my dreams and let me know you were finally at peace.  

But this hasn’t happened.  The recovered memories are fading again because they hurt.  Now that the anxiety is gone, grief and denial fill the void.  Because you were at the Memory Unit for so long, I often catch myself thinking that you are still there and I can go visit you whenever I am in town.  Every moment you were still breathing there was the hope that some miracle might bring you back.  And, yes, at the end I whispered in your ear that when your soul was ready, you should go and not look back… but I only half meant it. 

Recently, I read that death should not be seen as life interrupted, but rather as a life completed.  Maybe this is helpful, but I just cannot fathom that the lively woman of my memories no longer exists. Your laugh, energetic and strong, echoes through my mind and I wonder, where are you?

… You might remember, before you left, I told you that the next time we meet face-to-face I would greet you as an old woman filled with stories about a life well-lived.  I will tell you I tried to keep my promise that your grandchildren would know you.  And I will confess that through the eventual wisdom of age and experiences, I realized we did not miss out on a miracle because you died.  You were the miracle, and the world is a better place because you were part of it.

So, wherever you are, know that we love you, no matter what.

-Heather