Night Stalkers

Susan has her days and nights mixed up. Any parent can relate to the endless nights of just being awake followed with long sleepy days. I have spent the past few days knocking on Susan’s door and tempting her with fun activities we could be doing, if she were only awake. Inevitably it is that groan that floats through the closed door followed by some barely audible words that sound something like, “I’m sleepy Karen. Uhhhh….don’t want to do anything…..don’t feel well.” Eventually I get her up in time to re-warm her cold oatmeal and prepare for her some fresh jelly toast and hot coffee.

She complains of her aches and pains, but really they are the same aches and pains she always complains about: her arm, her lower back, her left leg- already diagnosed as arthritis triggered by an old injury. Just in case, I test her to ensure nothing else is going on, like having her move her left foot and hand, checking her blood pressure and temperature. Day after day things look fairly normal, except for the sleepiness. But what else should I expect? Every person in this household who was up for any reason these past few nights have reported seeing Susan’s bedroom light on or finding her wondering around the house.

The nighttime test of wills is nothing new to be sure. Susan can be found securing the house repeatedly after any person goes to bed, shuts a door, enters the kitchen or after any sort of noise or movement that she is sure must have left something undone or unsecured. A hidden camera would find a night time parade of family members checking for Susan, intermixed repeatedly with Susan herself shaking door handles and flipping light switches.

Just last night I stood in the dark hall waiting for things to go silent. I have learned that that is precisely when Susan does her duty. Right on que, as if she were following a script, her door opened and she crept down the hall toward the kitchen -or door- or thermostat. I waited with my hand over the light switch as Susan glided closer and closer, thinking she was undetected this tenth time to secure things. I stood breathless, waiting for her to be in just the right location before I flipped the switch up- lights on!- “Susan, get back to bed. The house is secure already!” I bellow loudly and purposefully. "But….." she tried. “Get to bed!” I did not allow her to indulge me in conversation.

At some point I finally fell asleep hoping Susan too had given up. But this morning after Jeff had walked the house and come back into the bedroom, he informed me that Susan had won last night. “What do you men?” I dreaded the answer. Apparently she had been up after I had sent her back that supposedly last time. She had turned on the lights in the house and moved things around in the kitchen. She wants to be in control like she always was and never fails to remind us of that.

Two nights ago I did my nightly walk through in the dark when I noticed Susan standing in the black living room peeping through the cracks in my shades onto the back patio. “Karen," she whispered in a voice resembling Nancy Drew. "There is a truck just sitting out there waiting to steal my pots.” “What are you talking about?” I asked almost curiously, as I headed toward the door where she stood hunched and peeping through the cracks. I almost bought into the whole espionage thing, making Susan and I the spies about to save the household- from the pot stealers!!

There we were side-by-side peeping, no- SPYING out into the back yard. The solar lights that surround my patio laughed back at us. “It is us, not headlights, Crazies.” I almost heard them say. Jerked back to reality, I pulled myself away from the crack in the door as I announced, “Those are solar lights around the patio that are glaring at you, and not headlights from a truck, Susan. Get to bed.” Of course she wouldn’t take my word for it. Her head found its place back in its peeping spot with her eye centered up at the crack where she apparently recognized them now as solar lights. “Well, I have to make sure.” She reassured me. More excuses. “Get to bed before you find something else to worry about.” I said in a demanding voice, hopeful. Poor Susan, so much to worry about.

Happy Birthday Susan

Susan turned seventy-three this week. Although we had been telling her that her birth date was coming up, still she woke up with no idea that it was her birthday. We discussed her age over pancakes, turkey bacon and coffee. After doing some calculations of her own she concluded that she was forty something, as usual. We didn’t argue. I do have to admit that the ill-logic of it all makes me laugh; how old would that make Jeff, and where do our adult children fit into this family tree? We chose to go with the flow. Her young self was ready for a fun day; but we have learned that a good time must be brought upon Susan carefully, easily and not in abundance. Over stimulation confuses her. So we gathered our daughters and took Susan for an early birthday outing. We certainly didn’t want to keep her out too late- she turns into a pumpkin (of sorts).

She was her usual out of sorts self, but we chose laughter over frustration as the mood of the day. So when I found her seated at the front of the store chowing down on gourmet cookies that she had just purchased, I tried to be patient. Of course she swore that her stomach was empty since she had obviously not had any breakfast. The fact that we were about to go out to lunch didn’t stop her munching. I kept my eye on her as I searched for clothes she might like and each time bringing them to her for evaluation. She sat like a queen cookie monster on her throne while I, her subject, ran back and forth with bright colored shirts and bottoms. The kicking of her legs as she sat munching ensured me that her birthday had gotten off to a good start.

We chose a new restaurant as our next stop since Susan was obviously famished. That is when things let loose- all things. Her birthday attire let loose at the waist upon our approach at the restaurant. We became aware of it when we heard an alarming cry for help behind us as we stepped onto the walkway that circled between the parking lot and the front of the restaurant. The twist of our heads revealed the view of her red pleated skirt let loose and now resting at her ankles. The elastic in her skirts these days, is simply not working for her. So after the initial shock of seeing Susan standing just outside the large windows where all the diners were surely surprised by the view of her bare legs, white undies and knobby knees, we attempted a rescue of sorts. Katrina, always the quick thinker, swooped in to rescue her while the rest of us tried to control our laughter.

We were greeted at the door by amused employees who smartly seated us at the opposite end of the restaurant sparing us the embarrassment of facing our fascinated audience. While entering, Susan uttered words of frustration, shock and horror at her dilemma. Something like, “This damn skirt won’t obey me anymore. I need a pin to hold it up. Look at these shoes, they are not flattering with this skirt so high.” Honestly, I could hardly answer her because of the humor in it all, but dishonestly, I lied. I sweetly chuckled out some sort of false encouragement, like, “Oh Mom, don’t worry, everyone dresses that way these days. You look just fine.” And as we passed the amused employees who were now going out of their way to get us seated, I said what I thought she needed me to say, “Just keep your back straight and hold your head high and nobody will even notice that your skirt is trying to slip down again.” Once inside, Katrina kindly assisted Susan in the bathroom where they fixed, tugged, straightened, pulled and clipped things back into place.

After Susan filled herself with a birthday brunch as if it might be her last, we felt compelled to get something new on her bottom. This time I put her inside a dressing room where I brought her gauchos and slacks until she found one she was happy with. She wanted it so much that she hung her red skirt on the hanger and kept the brown gauchos on her self. I asked the attendant if we could just leave the slacks on and pay at the register. I really didn’t want to deal with that old red skirt ever again.

Management escorted us to the register where Susan became confused and started yelling at me and cussing about where the black pants she had worn into this store were. She exclaimed that she was not a stupid shit who would go out without bottoms on. With a new audience of everyone within hearing range, I assured her that all her new black slacks were safely at home. Okay, so I didn’t mention that the red skirt was in the dressing room garbage, but I knew that if it came home with us, surely it would find itself causing another crisis on our next outing.

At home, Susan enjoyed strawberry shortcake followed by some gifts just for her. She cried the entire time she opened her gifts, especially the box from Stefanie. Homemade gifts from her granddaughters, classic old movies, and best of all, the smartly done family slide show Stefanie had made to help Mom remember everyone. She loved it and recognized almost everyone, especially herself. The background music kept repeating itself as the slide show played over and over. I reached my hand out to an emotional Susan and invited her to dance to her life. She accepted and we swirled and twirled and spun, all the while her eyes stayed fixed on the flashing of those from her life. We danced to life- her life, my life, all of life. I was proud of her for celebrating and glad that she chose to dance.

Happy Birthday Susan.

Two Zombies

It is nearly midnight this Thursday night and I have finally settled into bed hoping to wind down after two wild and crazy days. With my pillows all fluffed up behind my back and the reading light beside my bed highlighting the latest stack of books waiting to be explored, I sit ready to write a blog. My mind struggles to let go of what I have seen and heard and experienced these past few days, hoping to concentrate on Susan and her life here with us. I think about her doctor’s visit yesterday, her bright orange outfit that she has worn since Tuesday, her desire to help in the kitchen in hopes of hurrying dinner along when she is hungry and I remember finding her in the kitchen drinking a cup of instant coffee before the sun was up this morning. My hands wait patiently on the computer waiting for my mind to begin to organize its thoughts and tell them what to type. My overtired brain struggles in my lighted corner of this otherwise dark room and I feel almost like I am floating in a sea of thoughts. Suddenly, the midnight silence is broken with the sound of my bedroom doorknob jiggling. “No,” I scream inside my head. “I am off duty now. Come back tomorrow- or the day after!" Jiggle. Jiggle. It is Susan wandering the house, checking for neighbors and seeing to it that we are all locking our doors. She can’t stand open doors, and unlocked ones don’t allow her to rest. Mine is locked. She doesn’t get in.

My dilemma begins. My tired back looses and my feet slip into their slippers and begin walking me toward my now silent door knob. I meet Susan in the hall headed toward another locked doorknob. Shake. Shake. “Susan,” I ask, “What are you wondering around for at midnight?” “I’m looking for the baby.” She states flatly, almost as if she is really asleep. I have heard the baby story before, in fact, she has been looking for this baby for over a week now. “There is no baby. Go to bed before the boogie man gets you.” I smile as I hear myself say that. But I have no energy to say anything else. She doesn’t argue with me tonight. We resemble two zombies of the night. She turns and heads toward her room, almost as though she is thankful not to have to worry about the baby tonight. I make sure she enters her room and as the door is closing I add, “I love you.” “I love you too.” She responds just before she disappears. As I walk back toward my cozy spot in my own bed I hope that the sound of her door locking really means this is it for the night. Tomorrow will surely begin early. When does she sleep? I wonder. When do I sleep? Myself wonders back. Good night.

Everyday Feels Like Ground Hog Day

I feel like I am in the movie Groundhog Day. As in the movie, each morning that I wake up it is again Ground Hog Day. The same day continually repeats: the same events -big and small, the same conversations, the same problems and the same weather. That is how it is here in my life with Susan; each day we wake up only to repeat what happened the day before. Things may take a different twist from time to time, as there are slight variations in each day’s events. Unlike Bill Murray, who stars in the movie, it is not my alarm clock that wakes me each morning. Here, it is Susan that brings me out of my sleep and into my day; my day that will be much like yesterday, which was much like the day before and the day before that.

If Susan manages to rise before me, she ensures that I quickly follow her by making lots of loud familiar noises in the kitchen that draw me straight up in my bed and sleep no longer is an option. Usually it is the microwave that inevitably ends up on ‘fan’ instead of power. But the sound of the running fan tricks Susan into thinking that her water is being heated. Finally I hear the microwave open again and than slam back as Susan replaces her cold cup there and tries other buttons for power. Over and over this is done causing all sorts of buzzes and beeps until eventually (by chance) the right button is pushed and the water is heated for coffee. Than the usual slam- slam- slam as she again attempts to find the instant coffee that is always in the same familiar place; still she can’t seem to locate it. I feel my brain repeating the words as though mental telepathy will send them her way, “corner cupboard, Susan, corner cupboard. Get the clear jar or you will end up with lumpy coffee again.” Cupboards bang and I hear other things rattle and slam. With the vision of the dirty dishes I have seen being neatly tucked into the cupboards lately and the clean items I have found in the garbage, I feel compelled into fast motion now. I wonder as I hurry what food items Susan might attempt to prepare for her self. It is like she is the magnet and I am just a piece of scrap metal being drawn directly into the kitchen, usually before the sun is fully peeping through the windows.

Or on luckier days when I am up first, I tiptoe desperately around the kitchen as I cook the oatmeal and two separate pots of coffee (hers is decaf) along with toast or whatever else Susan and I might be having for breakfast that morning. I probably resemble a house mouse that doesn’t want to be discovered by the cat that is surely lurking nearby. No, I don’t want to be found out. Just a few more minutes of normalcy over one cup of coffee with no noise will directly determine how I can handle the rest of the morning. Each moment of peace gives me a few bolts of psychological power that boosts my ability to deal. So that is why I sneak about my own kitchen morning after morning desperately trying not to bang or pop or squeak a thing for fear that the noise of it will travel beyond the kitchen border and without fail will bring Susan scooting toward the kitchen. Nonetheless she comes right on cue.

Her daily “Good morning, Karen; Did you sleep good.” never fails to give me hope that today will be different, perhaps somewhat normal. But within a few minutes I inevitably realize that this is all just wishful thinking on my part. But I never fail to hope and wish. Breakfast is made and we eat by the window looking into the back yard. I always attempt to have a pleasant conversation, which usually starts with pointing out what a beautiful day it is outside, to which Susan agrees, but always adds, “But I am cold Karen. I am so cold that I had to get up to drink coffee to warm up my stomach.” I am sympathetic on cold days and skeptical on warm ones. I look at the layers she is wearing topped off at the neck by her silk scarf that falls haphazardly over her always-unmatched ensemble. It is cute in a way but it makes me sad, sad that this once stylish woman is now adorned with stylish things in unstylish ways. My heart grows softer when Susan’s vulnerabilities are more evident.

I know that I must be gentle and kind and protect her mostly from herself. So I linger at the table longer than I really want to because I know she wants to talk, to feel normal, like she is having breakfast with another person and having a normal conversation. Part of our conversation is normal: the weather, the food and how she feels. But the rest of it is so 'out there' that I am always tempted to get up and do something important, something real. But my heart tells me that this is important and very real in Susan’s mind. Her things are not missing, her children in other states are not about to arrive, her mother was not there last night and her husband is not fishing. Steering the conversation so that Susan is not constantly confronted with the deterioration of her memory is something I am becoming good at. Surely the thought of her own forgetfulness scares her and causes her to become more feisty and irritable, probably because she wants to fight it away.

Having a fighting spirit is not new to Susan. The sad thing is that this fighting upsets her and I worry that it threatens to worsen her condition with the stress it brings her way. She often insists on things that are not true and fights to make us believe them. When she realizes she has forgotten simple things she often screams that she is not crazy yet. She says it almost as though she feels insanity lurking but is desperately hanging on to the sanity. I don’t blame her. It must be such a scary and confusing thing that she is going through.

As the day proceeds I am bombarded with the same questions as yesterday and the same struggles as the day before. “Who is coming today? My things are missing. Someone is sneaking in when we are not home. When will Stefanie arrive? Can we pick up my car at the apartment? When will Jeff come to visit us? What are we going to eat? What are you cooking?” Déjà vu. It is Ground Hog Day again. Like Bill, I can’t seem to break through to the next day where things are not the same. I can picture myself mouthing, as Bill did, the lines that will be said next, because I know, because we’ve done this scene before. I am saying something like, “Susan isn’t really going into her room to sleep, she will be back in two minutes.” I watch my clock and she comes back into the hall right on cue as if we have rehearsed this scene over and over. “Now she is going to ask me if she took her medicine and I am going to say, ‘yes you did’.” Nothing is new. Nothing is really the same.