EAT, FRAY, LOVE

Last week my dad was released from Hospice. If he were of sound mind, that would be a good thing. He's gained seven pounds and looks healthier than he did in January. In fact, lose the wheelchair, rethink the wardrobe, he could still be the guy living on Wedgewood Drive reading the newspaper and planning trips to the Art Institute or Field Museum. I should not complain, but I still do.

For the past two and a half months, I didn't do anything stressful except visit Dad at Bickford and be his daughter. Celia, his caseworker and Hospice nurse, took care of everything else: provided a hospital bed and wheelchair that fit my father's six-foot frame, scheduled two showers a week and made sure he got them even when he was combative and verbally abusive, ordered all personal supplies, filled his prescriptions, paid a few bills, relieved a little guilt, and gave me hope. The hope being that my father was leaving this lifetime (soon) with a hint of grace and a shred of dignity. That's an awful thing to say, but I'm a little warped these days.

I'm currently back to micro-managing Dad's life. It's nothing I can't handle. I am lately on the phone during my lunch breaks hounding the idiots at Medicare to cover the cost of his wheelchair, gel pad, fall pads, recliner and bed alarms. I'm frequently online ordering wipes and dipes that are shockingly expensive from websites that are not user friendly, and I'm back to dealing with the VA for affordable medication to control Dad's ill-temper. The cold, ugly hospital bed is no longer necessary, so purchasing a new twin bed that was just right (not too high, not too low), with a comfortable mattress (not too soft, not too firm), that did not look like it belonged in a three-year old's bedroom, took some time.

Unfortunately, the old worries are creeping back into my thoughts. Realistically, Dad will continue to decline over the summer and his quality of life will, again, worsen. His nightmare continues and I will bear witness. This isn't over; I best not delete Hospice from my phone. I have been grieving for five and a half years and my nerve endings are starting to fray. My old friend insomnia visits nightly as I crunch numbers in my head. $6500 a month times 12 divided by meager social security minus long-term-care insurance plus a dwindling IRA to the power of Y.

Meanwhile, my poor father is akin to a potted plant perched in a windowsill - confined and dependent. One day, withering and dying in the sun, the next, springing back to life and staying rooted. He is moth eaten, but programmed to survive. Me, I'm floating. I am suspended in the rickety basket of a hot air balloon with no control over its direction. The view is huge, panoramic and terrifying. Should I enjoy the ride or worry about the landing? The answer is yes.

WORD SALAD

When I was growing up, whatever Dad said was gospel. Luckily, he didn't say much. First off, he wasn't home a lot. After his day of work at General Electric, he went straight to graduate classes at the University of Santa Clara for 18 years. On weekends, everyone had to be quiet because Dad was studying in his "library." Occasionally, he'd invite me in and I'd sit on a chair near him, but not talking. I spent hours memorizing the titles and authors on the spines of all his books. I could hear kids playing and yelling outside, but sometimes I preferred staying inside, in silence, if that meant I could spend time with my dad.

I hope I'm wrong, but I never saw him throw a ball to my brothers or spend time with them just hanging out. Wait, he did take them fishing if they'd get up at 5:00am to do so, and he participated in numerous Boy Scout outings. He took us camping or backpacking almost every summer, and one time he stuffed both my brothers into his smelly old army fatigues and laughed as they ran around our front yard like a two-headed green monster with four arms and four legs. So there you have it, he was a good enough dad and I loved him to pieces.

Being an only child, Dad did not have to share toys or time with younger siblings. He talked about his grama, Minnie, more than he spoke of his own parents. His grampa, John, was a disabled, ex-fireman-turned-carpenter after he was swung off the back of a speeding firetruck racing to a false alarm and got his leg mangled. John built a home for his family, off Aver's Avenue in Chicago, which he promptly converted to three apartments during the depression. A policeman who loved to tell stories rented out the top floor which was exciting for my dad who was a small child during the St. Valentine's Day Massacre. I believe my dad's cousin Dorothy and her family lived there too. So maybe he did have kids to play with, but, whatever the circumstances of his youth, as an adult, my father never seemed comfortable in social situations that required small talk.

He was a beautiful man. Even with the tormented look he favors in most pictures, he was strikingly handsome. I like thinking my mother fell in love with him instantly, but she was a talker, so I don't know what happened when he opened his mouth. Mom orchestrated the social life they shared for 56 years, and I do remember them coming home late from various parties arguing over Dad's tendency to escape social conversation and wind up reading a book in the host family's den.

Dad had definite opinions, was very conservative, and could make you feel kind of stupid if you wavered in your thinking whilst debating politics. With a couple cocktails in him, he laughed a lot, told jokes and seemed lively, but I just don't think he drank enough when we were little. When Mom died five years ago, Dad's social life went to zero. Only one neighbor stopped by the house regularly to talk to him. The good Christian people from St. Mary's Episcopal Church, even the priest himself, were no shows.

All the people my parents did favors for - watering plants, taking in mail, feeding their pets, preparing delicious dinners for widows and widowers, running errands, driving folks to doctor appointments and chemotherapy sessions, inviting them to plays and operas with extra tickets - all their so-called-friends became invisible. I wonder if the chore of pulling conversation out of my dad, without Mom there, was just too monumental for people to make the effort. Dad may not have noticed, he had mild to moderate AD back then, but it hurt me deeply. I quit sending checks to St. Mary's.

Nowadays, Dad speaks even less and doesn't make much sense. Hospice calls it Word Salad. When I arrive for a visit I always ask How are you? Eventually, that gets an okay after he fakes he can't hear me a few times to avoid a conversation. I cringe when I hear What did you do today? come out of my stupid mouth. I just can't think of anything else to ask, and that's when I get bibbed-lettuce and diced vegetables. He senses the conversation is getting more serious, clears his throat and starts to wiggle around in his wheelchair as his salad shooter of a brain engages. He hems and haws and reads words off the diploma that hangs on his wall, so always Santa Clara is in his response. If he's facing his framed-shadowboxes of WWII medals at the time, soldier or airplane makes the toss. He sometimes points at me, then notices his hand which fascinates him. The same hand that once could coddle an egg and make a Caesar dressing table side.

In the dining room, he listens as I talk to the other, more verbal, residents. They make salads too, though meatier, chef salads. I take my dad's hand and hold it for the rest of our visit, even while he eats. At this point, there's no more meaningful communication than that. We just hang out quietly together. Luckily, we've had lots of practice.

TOO MUCH BIRTHDAY

Today is my dad's 83rd birthday. Last night we had a very fine and festive dinner party for him at Bickford Memory Care. A huge bouquet of balloons was delivered at noon from his grandchildren, a gorgeous basket of edible fruit flowers arrived at 4:00 from my brother and his wife, a feast of Italian food and a chocolate birthday cake were delivered at 5:00. My father was showered and shaved, wearing a new white shirt, grey cardigan, and designer striped pajama pants. He was clutching a birthday card that had been colored and signed by all nine residents of his Bickford family. He kept asking one question: Is someone getting married?

I've read a lot of good books on AD: DYING WITH OPEN EYES, THE 36 HOUR DAY, THE GIFTS OF PASSAGE, DEMENTIA CAREGIVERS TELL THEIR STORIES, THE ALZHEIMERS PLAYBOOK, and THE STORY OF FORGETTING are among my favorites. Most of them say, regarding birthday parties for guys in the final stage of the disease, DON'T GO THERE. Dear God, they were right.

Dinner was delicious and the other residents were joyful. They loved everything, food with flavor, the hubbub in the dining room, Sally, the director at Bickford joined us, and two CNA's, who weren't even scheduled to work, showed up to the party. My husband was popping corks of sparkling apple cider, pretending it was champagne, and pouring it into cute plastic glasses while toasting to the happy occasion of Dad's 83rd year. Meanwhile, my father slipped back into his alter ego "Captain Jack" of the Second to None WWII regiment, proclaiming everyone was a soldier and we needed to shoot someone.

The filters were off. The "pilot's" watch we bought him at Kohl's made no sense. Its glowing light did not amuse; the Velcro fastener was too freaky. The two Matchbox airplanes with real spinning propellers did not please. The John Wayne DVD's flopped. He pulled at the sleeves of his sweater, questioned the fit of his pants, and bemoaned the fresh mostaccoli stain on the front of his shirt. Captain Jack did not blow out his candles; he ate chocolate cake and two scoops of butter pecan ice cream silently with a wrinkle in his brow.

I'm not going to beat myself up over this. I know we tried to bring some joy and a little variety to my dad's life in LaLaLand. The rest of us had a good time, and as I wheeled him back to his room for our nightly routine of teeth-brushing, face-washing, goodbye-saying, the party lingered on at one of the tables in the dining room. Another favorite resident of mine, Isabelle, was still calling out happy birthday wishes and complimenting the food. My husband and I would have a good laugh on the drive home over Dad's dismissal of our gifts and confusion over the whole damn evening. I'd choke back a few tears, shake my head over what just happened, and question why I put my father through such an ordeal. Ah, well.

I love birthdays. When AJ and Allison were young, I'd send out themed invitations and their parties always started at the exact moment of their births - 10:59 & 8:43 - both brunch occasions. My favorite pictures are toothy grins over the glow of trick candles on ice cream cakes from Baskin-Robbins. Champagne was served to adults, activity centers were set up for kids, music played, balloons popped, and people partied for hours. Inevitably, by afternoon, someone cried. New toys, games, and books were scattered over the floor, streamers were falling from the ceiling, and the carpet would need steam cleaning. TOO MUCH BIRTHDAY, we'd say, and it was true.

Today is my dad's 83rd birthday. Last night we had a party. He thought somebody was getting married and someone should be shot. It was all a little too much. The ribbons got tangled and we could not untie them. Happy Birthday, Pop. You had 82 pretty good years.

LOSING LUGGAGE

Last month, my dad was admitted to Hospice. It's not like when my mom died in the intensive care unit at Woodstock hospital five years ago. Then, Hospice provided cookies, hot coffee, and compassion in the corridor as we took her off life-support. That was a shorter gig. For my dad's needs, Hospice will assist him medically and emotionally, right in his room at Bickford, and no one is quite sure for how long.

Hospice provides a lot of services for the family as well. A caseworker interviews you with sixty minutes of questions, and a social worker helped me plan my dad's funeral. If you're quick to tears, they have a psychologist call you on your cellphone within the hour. I've been called three times in two weeks.

A hospice is also lodging for travelers, which is the definition I like best. Granted, this ain't no trip to Disneyland - more like the vacation from hell - and I do not like being away from home for longer than three days. But, seeing the last phase of my dad's life as a journey, the two of us on the final dusty trail - he, The Lone Ranger; me, Tonto - makes the ride a little less intolerable.

I've told my dad to "follow the light" several times over the past few months. That's right, I want him to go. I see my mom perhaps holding a flashlight to guide his way or maybe it's something more romantic like a candle which beckons my father toward her. Either way, it is my nightly prayer that Dad will give up his struggle with death and give in to whatever makes his pain go away. Traveling was something my parents did all the time because they loved taking breaks in their routine, experiencing different cultures, and meeting new people. I see them together now, at some midpoint toward the end, checking in to a hospice, both of them young again, vibrant and beautiful.

I'm not a good traveler. If you sit by me on an airplane, I'll dig my nails into your arm and ask over and over if we're going to make it. I worry about losing my luggage. It's not a big deal because I always pack the wrong stuff anyway. The point is, I hate to travel, and if Chicago was on an ocean, I would never leave home. I don't like being away from the cup that holds my toothbrush, my fuzzy blanket, and Mrs. Doubtfire, my pillow. I like breaks in my routine, experiencing different cultures, and meeting new people; I just want to sleep in my own bed right afterward.

My dad left home at 17 to lie his way in to the Army. He was an only child, raised by his parents and Ukrainian immigrant grandparents. From what I can piece together, through pictures and a few conversations with distant cousins, he had a happy childhood. He met my mother while serving during WWII in Manila. They married and moved around constantly, my brothers and I each born in a different state, until they finally settled in Saratoga, California for 25 years. Still, they traveled. Their passports were stamped in the airports of London, Germany, Vienna, Paris, Poland, Portugal, Spain, Switzerland, Sweden, Norway, Finland, Denmark, Egypt, Morocco, Jerusalem, Israel, India, Russia, Romania, South Africa, China, Singapore, Hong Kong, Greenland, New Zealand, and Australia. They were stalked by Bengal tigers on safari and stampeded by protesters in Tienanmen Square.

Both my brothers plan trips and travel to places like Croatia and Belize, so how my parents had a kid like me is pretty inexplicable. I'm the one less traveled. I'm the one who stayed home, so I find it kind of funny that this is why I'm here, on a long, strange trip after all. There is no itinerary to follow, no stamps on a passport, no worry about losing luggage. I sleep in my own bed at night. Dad and I are simply traveling together until some midpoint toward the end. Then he'll fly solo, headed for his final destination and traveling toward the light.

"GOODBYE DON'T MEAN I'M GONE"

There was a kiddie train outside the gates of the San Diego Zoo that my son was obsessed with. We were official zoo members back then and took advantage of unlimited visiting priviledges. AJ would wear his YOU BELONG IN THE ZOO t-shirt and a CUBS baseball hat; I wore size-six mom jeans and big blue sunglasses. I can still see my little boy squatting in front of the fenced-in baby animals while pointing at the sunbleached goats and fawns. We would watch gorillas pick bugs off each other, spot Koalas amongst bamboo trees, and feed elephants raw peanuts. But, most of all, at the end of the day, we loved to watch the choo-choo wind its way around the track and say bye-bye as it disappeared through the tunnel.

We always had fun at the zoo. The weather was 99.9% perfect, mommy packed a picnic lunch, and we knew we had it pretty good in our San Diego paradise. AJ never liked leaving, but the lure of waving goodbye to the little train as it followed its track around and around, over and over again each week, made it easier to head toward the parking lot.

Over the weekend, I rode a train from Dallas to Chicago called the Texas Eagle. My daughter decided to move to Arizona, broke up with her boyfriend on Valentine's Day, packed up her car with garbage bags of clothing and nine thousand pairs of shoes, and I accompanied her on the first leg of her trip. She wore a TALK NERDY TO ME t-shirt and comfortable grey sweatpants; I wore size-fourteen mom jeans and big brown sunglasses. I can still see my little girl riding shotgun covered in Google maps and pages of directions on how to program the Garmin. She screamed as I recklessly changed lanes, narrowly avoiding being side-swiped by several cars exceeding the speed limit on I-355 out of Illinois.

We drove for 18 hours with big lumps in our throats. Planning and rehashing Ali's future, crying over the broken-hearted boy she thought she would marry and was leaving behind, laughing at silly things we observered on the highway that certainly no one else would find funny - a horse's tail caught in the back of a trailer, a rickety RV with eyelet curtains. We sobbed realizing we would soon be separated by a gut-wrenching goodbye, a kiss and a hug that must tide us over for at least three months, and 1700 miles of train track.

It hurts to say goodbye to someone you love. It's not fun like waving at a tiny train on a circular track. Tears burn your eyes and a knife wounds your heart. You comfort yourself with old adages - every ending is a new beginning - when God shuts a door, he opens a window - if you love something, let it go. But letting go isn't easy, so you massage your heart with the sweet- scented oil of see-you-soon.

I've said goodbye to parts of my dad at least seventeen times. Goodbye ability to read a map at the zoo. Adios capacity to drive. Aloha naming five fruits, drawing a clock, and knowing what year it is. Hasta la vista finding your way home from a walk. Shalom reading your watch, reading books, and reading my mind. Chow dressing yourself, feeding yourself, and thinking for yourself. Sayonara someone I can talk to. Farewell remembering your name is Jack, who your sons are, and how many grandchildren you have. Bye-bye choo-choo your memory of me.

This weekend, riding the Texas Eagle, I finally started to realize how lucky I truly am. I'm prone to taking comfort in old adages and just plain grateful I have so many beautiful things in my life that make saying goodbye difficult. I love my dad with his plaqued-out brain. I'm thankful my daughter is brave enough to go looking for something she wants, even though it means moving away from home, and the memories of myself as a new mother, waving at trains with a son like AJ, are my happiest. There will still be days when life is 99.9% perfect. I know I have it pretty good. Goodbye don't mean I'm gone.

ME, CREEK, PADDLE

I hope when this is all over I still have friends. And a husband. I hope Aaron and Allison still have a mom with a sense of humor, and my happiness gene reappears intact. When my dad is out of his misery and I'm out of mine - watching him in his - I hope I don't waste too much time feeling guilty for feeling relieved that he is done suffering, and so am I. Just thanks, all of you, for your understanding, patience, and unconditional love. Without you, it would just be me, up that creek, without a paddle.

ARE YOU THERE GOD? IT'S ME, YOUR TARGET

You should see my Sunday school pin. It's five or six inches long and represents my twelve years of service, as a youngster, sitting in a windowless classroom at Saint Andrew's Episcopal church, studying the teachings of the Lord, our God. I can't remember a lot of what I learned, but, the basics - Jesus loves the little children, Noah rises and shines, and people should be nice to each other - were seared onto my poor, unworthy soul. I carry these lessons with me throughout life along with - wait your turn, don't be late, and clean your plate - like loose coins and ponytail holders at the bottom of my purse. I know where they are if I need a quarter or my hair pulled up in a pinch.

I can't say I'm religious or spiritual anymore. I don't kneel at an alter or take communion. I sleep late on Sundays and eat pancakes in my pajamas for brunch. I break commandments. But, I will say, sometimes I talk to God. I'm pretty sure my Sunday school teacher would not approve of my going directly to Him with my comments, questions, and concerns, but, along with being a lousy Episcopalian, I am impertinent, impetuous, and impudent.

Every time I want to tell God something, ask him a favor, or beg him for a sign, I always take in to account that He is very busy. I don't want to distract His attention away from a soldier praying for his safety in a dark place outside Baghdad or a mother praying for her child's health in the cold corridor of a cancer ward. I know, in the bigger picture, my problems are much less important. I can wait my turn.

Last week, I was driving to Bickford from Woodstock when I started to cry. I wasn't even with my dad yet, and the type of day it would be had not been determined, but I was extremely overtired. And, when I say cry, I mean a type of wailing that comes up from the belly, circles the room, and assaults the ears. It's earthy and primal; it's unfiltered grief. If allowed, it can fuck up a whole day.

So I said, "God, I swear to Christ, if you are there, you gotta help me out. You have to see me through this day. I need the strength to stop crying." (If you are shocked that I would swear at God, then you might not love someone with AD. You're probably not a caregiver.)

Mid-gulp for oxygen, I stopped. Like a click of the remote, from thunderous death-defying-avalanche documentary to calm drink-a-Corona-on-the-beach commercial, my tirade was over. It did not wind down with a sniffle or hiccup. I did not have to breathe in through my nose and out through my mouth for a minute. I mean, I just stopped crying. It was communion on the fly. I was a target, God hit a bulls eye, a choir sang.

I don't know where I stand with my faith, but that was surely a sacred moment and something close to holy happened. I made it through the day, and the six days after, without any tears and I felt blessed.

Typically, when I ask God for stuff, the answer is no. My mom did not survive her auto-immune disease, my father was not spared the indignities that come with memory loss, and I did not make the high school cheerleading squad. But, if that was the sign I've been asking for these past five years, I'll take it. Thank you, God. I'll talk to you later.