Embracing a little stillness everyday has become important for my peace of mind as the world has not been the same since my mom’s diagnosis of end stage Alzheimer’s. It’s difficult to set eyes on her bedridden frame with me being so unsure of what her life must feel like imprisoned by a dying brain.
It began to unravel quickly when we noticed her mental slippage in everyday things such as forgetting her computer password constantly which then turned into forgetting to turn off the stove burner catching her sleeve on fire one day. Then there was the trip to the emergency room due to her passing out from what we would learn was low sodium. During the course of her hospital stay it was suggested that a brain scan be done to rule out other things that could be contributing to her mounting confusion. The results showed evidence of mild strokes, or, TMI’s. With more consultation the doctor suggested that we take mom to a specialist. It was two weeks later that I found myself seated in a small room with my dad listening to the Neurologist’s thick Spanish accent beautifully roll out the official diagnosis. It’s no secret that I have questioned that diagnosis ever since we found a stroke had occurred. Mom has never entered many of the symptoms associated with the slow moving effects of Alzheimer’s, instead, her declines have been immediate and life altering. I’m inclined to believe that it has been these small strokes she keeps having, but, can’t lament upon an argument that will never have its day in court since once the diagnosis has landed in a medical chart it takes an act of congress and energy that I don’t have to get it removed.
The stillness that I speak of sits next to me about a half hour before my shift begins. I say shift because my sister and brother, Paul, moved here to help take care of mom and due to our conflicting work schedules, it became necessary to formulate a plan. That plan soon hit a brick wall when my brother’s health took an immediate dive and he was no longer able to work. The family decided that it would be best for him to move into our parents’ home and help dad by taking over the tasks of cooking meals and keeping an eye on mom; at that time she was forgetting to use her walker and ending up on floor.
There was no way to predict how fast my Paul’s COPD would incapacitate him. My brother died just a few months later. Walking into the house that day, I passed my mom who smiled at me oblivious to the fact that her only son lay dead on the floor in the very next room. It was decided that we’d never tell her about my brother since here memory was all over the map. If she ever inquired, which she hasn’t to this date; we would say that he simply moved out and was doing fine. I found it odd and even upsetting to watch mom wildly picking at her clothing that day as Dad, my sister and I waited with her in another room while the funeral home removed my brother’s body. It was as if she knew something was terribly wrong but had no words or understanding.
This symphony of change was a complicated composure but we soon settled into a new schedule with my sister taking the morning shift, the hospice help taking afternoon and me taking the night. I’m slower to open the door to their home these days knowing, again, I’ll be painted into a landscape that I wish I could crawl out of. End stage anything is not a casual walk by quiet streams, but, rather; a typhoon in the middle of your life where the only time you’re away from it is when you’re in the eye of the storm. With Alzheimer’s (or any other brain killing disease) it’s as if the storm never passes; it can only circle back again and again gaining momentum. What it doesn’t destroy the first few times, it will be sure to destroy on its way back through until every structure in the mind has been leveled and all that is left is insurmountable confusion.
The room is dark with ritual as I begin cheerful small talk waiting for her to notice me; and when she does, I lean down and kiss the cheek of the stranger who wears my mom’s face. Her furrowed brow shows signs of her searching for the file that contains who I am; that file has been deleted and she only knows that I’m a nice lady who is kind to her in that moment. The blinds are pulled shut and the gloves go on. She waits in the hospital bed for me to disrobe her and get her ready for the night. Dad gave away the bed they had shared for decades and replaced it with a twin to make more room for us to bath and change mom.
It disturbed me the day I walked in and noticed the bed was gone but it was understandable and unavoidable; mom had reached the stage of incontinence. He refused, however, to take down the wrought iron decorative scroll that he mounted above their bed at her request. That was before her mind slipped away. Dad had started an odd habit of placing and replacing random pictures of him and her into the crevasses of the iron scroll on the wall until he landed on two pictures that he must have an affinity to. The faces staring back at mom in these paper reminders fall like a leaf upon a mind that no longer retains their importance. I’ve found it best to leave dad alone about it as he has enough weighing on him. He is quieter lately. Hints of his distress showing only on his sagging clothes; the weight peels off his body one week at time. A man lost in mourning his son and taking care of a wife who doesn’t know him. Never one to express his feelings, his body is left to scream them at the top of its lungs in a silent holocaust of the heart.
Some days I just want to stay in bed and pull the covers over my head. Fifteen months of hard labor in this push against my exhausted heart have me only going through the motions. My grief for my brother is complicated. How does one grieve a brother when they’re stuck in a vortex about how to grieve a mother who is living but dead?! Mostly I feel fastened to this genuine clash between mourning the living and mourning the dead. I don’t even care to fight back anymore. The numb isolation is a warm place, almost needed to hold the pieces of me together. Friends ebb and flow as I grow tired of being caught off guard with questions that throw me against the wall of my reality. Yes, I know they care, but, I don’t want to be asked how my mom is doing, and, yet, on any other given day when they haven’t asked in a while; I wonder how they can care so little. It’s not fair to these beautiful people who line the wall of my life. No one can win with me either way so I repose for their peace as well as my own.
One day, when all of this is behind me; I’ll reenter life and we’ll pick up where we left off. Right now, I struggle under the dead-lift of my new conversations that bind the hands of my mind and toss me into an emotional ocean. Will we be able to manage mom at home? Will dad be able to follow her wishes of no feeding tube? How long does it take a person to starve to death? The DO NOT RESUSCITATE sign watching me from the refrigerator seems a mild precursor to what we’re facing soon. My saving grace is my ability to squeeze out of these conversations and swim to the surface before they drown me. That first quenching breath is so divine but there will be a day when I won’t reach the surface. Tough decisions will have to be lived through. My phone has become a game of Russian roulette. Gone are the smiles that crossed my face when my caller ID read, “Mom Calling.” I’m not even sure why I’ve not changed the contact to dad’s name. No more will I face chastisement about when I’m coming to visit her or how much she misses me. All of that has been replaced with a concealed panic that knows the bullet is locked and loaded and each call might be the one that summons me home; like the unexpected one from my dad that pierced my flesh October 17, 2016 the day my brother died.
The night shift ends with mom being fed a few tablespoons of baby food and given her allotted dose of morphine. Dad will gather up the adult diaper to be thrown away, empty the blue basin in the bathroom and then I’ll hear him washing his hands. After that he’ll head into the kitchen and warm up the dinner that I stopped by my house to pick up for him; my crockpot and I are having quite the affair since the plan for my brother to be the cook didn’t work out. I’ll stay with dad long enough to watch him eat and engage him in conversations being sure to monitor his every bite. When he’s done, I’ll rise and kiss my mom goodbye wishing her sweet dreams. Dad will turn on the porch light and walk me to my car. He will thank me for all my help that night and for bringing him a home- cooked meal. We will hug under the stars and say I love before I get into my car. My promise of returning the next night will roll out the window as I drive away. Some nights I cry on the way home, some nights I’m lost in faded memories and some nights I wonder what life will be like when the night shift ends.
Mona McPherson
No comments:
Post a Comment