A day in the life

I'm often get asked the question what its like to be the caretaker of some one with dementia. I don't think these questions are intrusive. My cousin tells me that people are being "nosey." I don't think so. Its a tough job with little rewards. Ask any hospice nurse and you will get the same answer. Being a caretaker is the most self-revealing thing you will ever take on. You will learn things about yourself and your loved one that you probably won't like; but you will learn new skills of coping and maybe just maybe of prospering. So I've decided to take you on a journey of a day in the life of me and my mother:

6:00am My mother wakes up. I can hear her moving through the house. I pray and lay still in preparation.
6:15am I get up and walk our dog Ricky.
6:30am I get back and she usually goes out on the side porch with the dog to sit.
6:45am She comes back inside and forgets Ricky tied on the side porch.
7:05am I try to catch up on emails. Ricky is on the side porch scratching to be let in.
7:25am I let the dog in. On the way back upstairs my mother pops out of her room. "Good morning," she says. "How did you sleep?"
"I slept fine and you?" I say.
"I always sleep fine. I'm blessed. Somebody who went to sleep last night didn't wake up this morning."
True
7:29am She asks when we are going to eat breakfast. I tell her I will cook.
7:30am She asks me how much money she has in the bank and when can we go and get some out.
7:31am She ask what day of the week it was. My answer is always Saturday or Sunday. I've learned if she knows its a weekday she will become inconsolable unless I take her to the bank and I've had to referee several scenes at our local branch when she gets confused about why her money "...isn't working out right." Also she lost hundreds of dollars in the house so I try to keep her away from cash at all costs.
7:35am I start breakfast. Usually some kind of protein and eggs. Keep it simple.
7:38am She asks if my cousins who live next door have gone to the beach. I say no.
7:40am She goes in the front room and plays on the piano. Ricky sings along with her. Its hilarious.
7:45am She asks me how much money she has in the bank and when can we go and get some out.
7:46am She ask what day of the week it was.
7:55am We eat breakfast. I turn on the TV. Usually HGTV.
8:15am She asks me how much money she has in the bank and when can we go and get some out.
8:17am She asks me how much money she has in the bank and when can we go and get some out.
8:30am She asks me how much money she has in the bank and when can we go and get some out.
8:31am She ask what day of the week it was.
8:40am She shows me an old photograph she found of her mother, who was a school teacher at Depot School. The photo is dated 1921. "I was born in 1926. How old does that make me?"I tell her 87.
8:45am She goes in the front room and plays on the piano. Ricky sings along with her. It's still hilarious.
9:00am She asks me how much money she has in the bank and when can we go and get some out.
9:01am She ask what day of the week it was.
9:04am She asks if my cousins who live next door have gone to the beach. I say no.
9:05am She asks me how much money she has in the bank and when can we go and get some out.
9:10am She shows me an old photograph she found of her mother, who was a school teacher at Depot School. The photo is dated 1921. "I was born in 1926. How old does that make me?" I tell her 87.
9:15am She ponders if the mail has run. She gets up goes outside. Ricky runs out the door.
9:23am She comes back in. And asks where's Ricky. I say he was with you.
9:25am We go look for Ricky.
9:30am We find Ricky running down the street. Crazy dog.
9:35am She goes in the front room and plays on the piano. Ricky sings along with her. Yep, still hilarious.
9:50am She asks me how much money she has in the bank and when can we go and get some out.
9:51am She ask what day of the week it was.
9:59am She asks if my cousins who live next door have gone to the beach. I say no.
10:00am Steve Wilkos comes on so I take the opportunity to run and take a quick shower. He will occupy her time for a while.
10:38am She ponders if the mail has run. She gets up goes outside. Ricky runs out the door.
10:43am She comes back in. And asks where's Ricky. I say he was with you.
10:45am We go look for Ricky.
10:50am We find Ricky running down the street. Dog is still crazy.
10:58am She asks me how much money she has in the bank and when can we go and get some out.
10:59am She ask what day of the week it was.
11:00am Maury comes on. She loves Maury.
11:05am I know I have a few minutes while she ponders who the father is so I sneak away to do some more work.
11:40am She comes upstairs looking for me. Said I've been away for several hours and was wondering if I were actually gone. I go back downstairs.
11:42am "You are not the father!" Maury screams.
"Lord, look at her run. That's a shame. No telling how many men she's been with. Well I know who your father is: George Sturgis."
I look just like him.
"You look just like him," she says.
11:45am She goes in the front room and plays on the piano. Ricky sings along with her. It's hilarious and it never gets old.
12:00pm Jerry Springer. Oh boy.
12:02pm  She asks me how much money she has in the bank and when can we go and get some out.
12:03pm She ask what day of the week it was.
12:30pm Some body on the show is exposed for being born a man. "Well what in the world. That's a man?"
People will do anything these days
 "People will do anything these days won't they?" she says.
12:35pm She asks me how much money she has in the bank and when can we go and get some out.
12:37pm She looks in the cupboards thinking its the refrigerator.
12:42pm She asks me how much money she has in the bank and when can we go and get some out.
12:43pm She looks in the refrigerator thinking its a cupboard.
12:44pm She asks me how much money she has in the bank and when can we go and get some out.
I can tell she's getting hungry because she keeps rummaging and asking about money.
12:47pm She says she's hungry but we can't go to get anything because she doesn't have any money.
12:50pm She asks me how much money she has in the bank and when can we go and get some out.
I tell her not to worry. I'll make lunch.  
12:54pm She asks me how much money she has in the bank and when can we go and get some out.
1:00pm My brother calls from prison. Oh crap this is going to send her into a tailspin if he asks her to send him some money. I've told him not to mention money to her but he doesn't listen. Dammit. He did it.
1:15pm We get off the phone with my brother. Here it comes.
1:16pm She asks me how much money she has in the bank and when can we go and get some out.
She needs to send him some money.
1:17pm She asks me how much money she has in the bank and when can we go and get some out.
1:18pm She ask what day of the week it was.
Let's go. I'll stop by the post office.
"But the post office isn't open on weekends."
Shit
1:25pm She asks me how much money she has in the bank and when can we go and get some out.
1:26pm She ask what day of the week it was.
1:27pm She asks me how much money she has in the bank and why can't she get it out.
1:28pm She asks me how much money she has in the bank and why can't she get it out.
1:30pm  She ask what day of the week it was.

Argh!!!! Make it stop! Goddamn please make it stop!

At this point I stopped taking notes. I abandoned the project. The sheer volume of entries has siphoned by patience. The banality of enumerating all the subtle points that show how my mother has practically slipped off the earth is both disheartening and dispiriting. These little repetitive acts are torturous. Like the single flat note played dysrhythmically in the weird-masked-occult-scene of the movie  Eyes Wide Shut. The effect is unsettling and morbid. As a caretaker you realize that nuance is favored over boldness. Sudden changes will stir anxiety. That you are alone in your task or so it feels. You must resist the creeping mist of resentment that your life is no longer your own. That we both, caretaker and infirmed,  exist in this helix of forget and repetition. The winding down of things. But I won't let myself succumb to such . The long list of calls and responses and chores that lead into the nothingness that Alzheimer's brings you. I will not allow it to shape my relationship with my mother. To reduce that glorious, intricate; sometimes strained but often loving history to lunches and prescription pick-ups and laxatives and dreaded nightly conversations of where does she sleep because this is not her house even though she's been living here for 45 years. I will not.

1:38pm I take my iPhone and delete the detailed notes I had been taking all day long. Time intervals be damned.
1:39pm I catch my breath. I sit at my computer and pull up what I call my Inspirational Make Through The Moment Folder. Its a collection of images, phrases, journal entries, babblings, emails from friends, etc. Anything that puts a smile on my face. I find the file Bill_Keane.docx and open it. Bill Keane (the creator of the Family Circus) says:

"Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."

1:44pm My mother calls upstairs to find out where I am.
In my room writing emails.
1:45pm She asks me how much money she has in the bank and when can we go and get some out.
1:46pm She asks what day of the week it is?
It's Saturday. A nice day to relax. Where's Ricky. Lets go for a walk.

Wigs and Dementia: A Love Story

Alzheimer's is a mother fucker. I apologize if that offends you but it is. It's a haunting disease. It's a demon that slowly possesses the victim. It's the Great Pumpkin on Halloween night wrenching every ounce of dignity and happiness from you until all that's left is the empty husk of despair---like the dried hollow carcasses of the left-over summer cicadas that crunch below your feet. Their magnificent song now smote. Dementia is not the romanticized tearjerkers with Jessica Tandy twittering around looking for long lost school books in Driving Miss Daisy or the stylized melancholy of Julie Christie's evaporative performance in Away from Her.  No, this disease is much crueler than either.

As a caregiver, I often feel like I am on the 102nd floor of the World Trade Center on that bright azure Tuesday in early September of 2001.  Like a thief, my mother's illness came upon both of us suddenly. I was going about my life; doing my job, going on vacation, playing my games and watching television. When neurological disease attacked. At first there was confusion and pandemonium then the shrieking realization that both our lives would be forever altered.

As the bricks of memory crumble one must knit as much of life together as possible. As the disease pushes your loved-one deeper into that small space you feel helpless. You watch as the light of understanding fades from their eyes. I imagine having Alzheimer's is like watching a disjointed movie filled with images and instructions. All of them coming at you in rapid succession. Random words next to images that you think you should know but somehow you don't. That improbable reel now playing in my mother's mind has began to to tell her to wander---a marked symptom of dementia. Usually the person, in his or her mind, is looking for something specific. With my mother it is the mail. She wants to be useful. To pay her bills. To be functional. The tentacles of a life, no longer tenable, are reaching out to her. She tries to feel normal.

We recently acquired a new neighbor who is doing extensive work on his yard. While nice and commendable, it has affected the predictable balance that was our morning routine. Soon after breakfast, from about 9 to 11 a.m., my mother gets up out of her seat and walks outside. She stares blankly across the yard with her arms neatly folded behind her back. She walks to the mailbox, bends over at the waist looking for something inside that may hold a glimpse to her former self.  When she doesn't find it, she closes the box and continues her walk. She makes a circuit around our house then returns inside to her recliner, only to pop up ten-minutes later to go back outside. You can time it:  no more or no less than seven-to-twelve minute intervals.  Up out of her seat, hands neatly folded behind her back walking outside.

Intermingled with this wandering is the random changing of her clothes. For some reason, she's started changing her clothes multiple times a day, sometimes two or three times within an hour. She'd get up from her recliner, go upstairs, change, and return sporting a new outfit and a wig.  Now, my mother has always loved her wigs. And I don't mean a few ornamental wigs like switches or chignons. My mother had long wigs, curly wigs, sassy wigs, dowager wigs, solemn wigs, flirtatious wigs, Afro wigs, straight-haired wigs, church wigs, cookout wigs. Wigs for all occasions in many different shades and textures. My mother was always a well-dressed woman. She was born of that era when women dressed to show their status and education; to show they were not "loose" or lurid, thus always evoking propriety and decorum.  But now she's taken to resembling a bag lady.  She's taken to wearing one of my old work shirts over her housecoat, layered over a pair of denim jeans, layered below a skirt that would be at home at a hideous skirt convention. Our family always knew her looks were uncompromising, but now her patrician style has been breached by disease. Yet, she still has an attachment for those wigs. So with each costume change she dons a new one and descends our curved staircase as if she's Queen of Romania.

But as soon as she sits down she takes the wigs off and completely forgets them.  As her parade of motley fashions progresses throughout the day her wigs pile up on the end table like some furry creature in a horror film. I envision them forming some hairy amalgam coming after me as if I was Karen Black being chased by a demonic idol in Trilogy of Terror. Truth be told, I hate those wigs. I always have. They are the source of one of my greatest teenage traumas. It happened quite surreally on a Wednesday afternoon. Not unlike 9/11, it came quite unexpectedly. I was just in the beginning stages of  experiencing "outcast status" in the ninth grade.  At the time, Carrie White was my hero and I fantasized I had magical powers and would one day rain holy teen angst-driven hell down on my classmates.  I had stayed late after school because I didn't want to be at home around my new family---My mother had remarried after my father's death and my stepfather and I were at odds. I got a ride home with some classmates.  As we pulled up in the driveway, one of the kids pointed toward my backyard.  My eyes widened in sheer fright.  My mother had taken this occasion to wash her wigs and hang them on the clothes line (which was never used for clothing because we had a Whirlpool washer and dryer so what the bloody hell would she hang those wigs out there like that for?). Somebody asked if we were skinning raccoons and the entire car erupted in laughter. If I only could have withered into nothingness.  I remember being so angry at Mother. She did go through a Jheri Curl phase where I actually wanted the wigs back, but that's another blog.

It's funny how when life gets dim and dour it is the small things that keep us going. We rush through life feeling angry and jilted, percolating on emotions of fear and loneliness; discharging unhappiness to everyone we meet and favoring complaint and complacency over love and adventure. I try not to live like that. Not to say I'm some radiant beacon of hope in a thickening fog of woebegone. But life is simple, really. "If you're breathing you're already better off than the dead" as my mother likes to say.  And now that her disease has taken away so much of her---of us---it truly is the simple that I focus on.  So I just sit back and watch in wonderment the show that is my mother's illustrative incarnations on our kitchen runway serving Miss Havesham realness.

These fleeting moments are just either the foam needed to keep the flames at bay, or the snippet of air drawn in to soothe the heat; a hushing cool on my face that whispers a stillness to life that says these moments matter. That it's not the raccoon-looking wigs on that clothesline from years ago. But the pile sitting here on the end table today that's most important.