"All that is gold does not glitter, not all those who wander are lost; the old that is strong does not wither, deep roots are not reached by the frost."

Monday, June 20, 2011

AND I WILL SING A LULLABYE

I wish I could say that before my father died we had a meaningful conversation or THE NOTEBOOK moment, if you will. Perhaps you saw the movie or read the silly book by Nicholas Sparks, so you know it's when the stricken wife comes out of her AD glaze, recognizes her husband, shares a dance, and dies in sync with him that very night. Beautiful. Poetic. And, of course, utter nonsense unless you have ever kept vigil during the last dying day of someone you love. Trust me, you are watching, you are waiting, you are willing that moment.

When we took my mother off life-support, we had six hours left before she died. My brothers were there with their wives, my kids and Charlie were there, and my dad was also partially there. We took turns vying for attention at her bedside, just like when we were kids performing handstands in a pool and coming up for air each time shouting, "Did you see me, did you see me, Mom?" Her throat was pretty damaged from the last attempt of modern medicine to save her life, so mostly we got nods which, come to think of it, we mostly got for our handstands too.

Mom was stoned on morphine - truly in and out of consciousness - and I remember waiting all afternoon for her eyes to focus directly on me, while everyone stood around taking turns holding her hand and smoothing her brow. She loved us, and we knew it, but you really, really want that last affirmation. Finally, thankfully, when I felt her total gaze, I saw my chance to take a breath and plant my hands squarely on the bottom of the pool. I thrust straight legs through the surface of the water and gurgled bubbly I love yous. For as long as I could hold an upside-down stance, I promised my mom I would take care of my dad just like she had. As my lungs gave way and my execution crumbled, I assured her we would be okay and she could go. When I came up for air, I got the nod.

My dad's death was different. He faded away and it took eleven days and everyone left way before it was over. I held his hand and smoothed his brow all by myself. I was protective of him and preferred no one come too close. I was vigilant; he was kept spotless and his sheets were crisp. I was prepared; his carefully folded burial clothes lay waiting on the bureau. I was aware; he was comatose, feversome, mottling, and moaning. It wasn't likely we'd share a dance.

Being there, watching him starve and shrink, was gut-wrenching and mentally exhausting. I had trouble keeping down food and could not sleep. Hospice said there was no timetable, everyone passes on their own schedule, and the priest reminded me how much strength it actually takes to die. My poor father had not sipped water or eaten for a week and a half, and I agonized over my refusal of an IV or feeding tube. Day after day, I told Dad he should go and prayed for Mom to come get him. I sang the same Beatles' song over and over again which he might have hated. I was losing my shit and eyed his morphine longingly.

On the evening of November 23, 2010, my father, Jack Terman Mommsen, Sr. died. I sensed movement in the room's waning light and got up from my chair. He opened his eyes as he struggled to say something, and I pretty much knew what it was. There was silence and I felt loved. I reached for his hand and held my breath. His suffering was ending and our moment had come.

Sunday, October 17, 2010

KNOCK, KNOCK

My mother-in-law used to tell a charming joke about four old Jewish ladies sitting around a table playing Mahjong and complaining about their health. One was losing her eyesight, another her hearing, the third her stamina. The fourth, more fortunate woman, spoke up and proclaimed nothing was majorly wrong with her - knock on wood - then she promptly responded, "Who's there?" I always loved hearing that joke and found it amusing. She tapped-her-own-fist-on-the-table and thought it was someone-at-the-door. How cute is that when an old fart starts losing her mind? At least it's not cancer!

There is a lot about getting old I can accept. Developing aches and pains from doing less and less, and getting out of bed in the morning more slowly, not a problem. The thinning hair and waning eyesight, the muffin top and oh-so-touchy digestive system, all a part of life that no one over 50 can dispute. Not that anyone cares, but I still see the bright side. I'm not hating my wrinkles; I still have my dimples. I only make it to the gym semi-annually; GAP jeans still come in my size. There's a pair of reading glasses in every corner of my house and in my car; I can still read the GARMIN when I go Geocaching. See? I'm not so far gone. I haven't started wearing Velcro shoes that look like blocks of wood and polyester pants with elastic waistbands.

It is when I come across a credit card in my swimsuit drawer or find our checkbook in the freezer that makes my blood run cold. It recently took me two weeks to find the concert tickets I had tucked in my passport, and I nearly burned the house down by leaving my flatiron plugged in all day. That's when I get scared. That's when I want to pick up a gun and point it straight in the eye of that universal terrorist Old Age and his SOB sidekick AD. Don't misunderstand, I've been losing my car keys since I was 16 and walking upstairs while forgetting the reason since college. I'm talking about the hard facts - the ugly truth - that my father's disease is very likely rooted in my own precious DNA, and growing old might not be so charming after all.

I remember vividly the day my father was officially diagnosed with AD at the University of Chicago hospital in September of 2004. He had undergone five days of extensive cognitive testing a few weeks before, and our family gathered together and travelled by train from Crystal Lake to hear the results. Before his appointment, we went to lunch at the Russian Tea Time, our favorite downtown restaurant, and I remember feeling truly and utterly happy. Sure. My dad was getting lost a lot, obsessing over trivial things, and he could not name five fruits or draw a clock anymore, but, here we were - facing this day together - no matter the outcome.

The appointment was lengthy, the air stifling, the magazines outdated, the wallpaper hideous, the doctor soft-spoken, the diagnosis shocking, the questions unending, the fear undeniable, the result devastating, the train ride home silent, the tears just beginning.

ALZHEIMER'S made the cover of TIME this month. My copy is gathering dust on the coffee table. There's a Maria Shriver TV special on WOMEN AND AD this week. I'll be tivo-ing it because I'm too terrified to watch. I know there is a way to test my predisposition toward any of the diseases that might eat my lungs, my joints, my liver, my brain, and my heart. Right now, I'm just trying to get through the hell of AD with a family member. When I start thinking about the possibility of it happening to me, and my own daughter dealing with that, I have to stop myself. I cannot go there. Not now. Not yet. So until then, I'm thankful there's nothing majorly wrong with me. Knock-on-wood.

Saturday, July 31, 2010

ROAD TRIP

Picture pulling your car out of the garage in the morning, that's right...click on your seatbelt, adjust your mirrors, and set the radio to NPR. You're looking good and feeling refreshed with the knowledge that the day is new with no mistakes in it. You-are-ready-to-roll but, no. The unmistakable sound of grinding gears fills your ears and you suddenly sense you cannot shift out of reverse. That's it...take a deep breath and start the self-talk. This is hard, but I'm doing okay. Give us a smile and wave hello to the neighbor out watering his lawn, go on your way as if nothing is wrong, even though today, it's clear, you'll be driving to town backwards.

I am lately a hazard. My friends worry about me and leave warm, supportive messages on my voicemail. I don't make plans. I carry my cellphone around like oxygen and jump when it rings. My doctor says I need exercise. My cholesterol is high. I am addicted to the Food Network and shoot up Cupcake Wars and Ace of Cakes when I should be sleeping. I cry because there's dirt under my refrigerator. My husband surely wonders why he married me. My son keeps his distance. My brother thinks I'm ridiculous.

I am on a road trip. I don't like it because I'm awful tired of driving. My dad was forced to hand over his keys five years ago, so he's in the passenger seat. AD wants to ride shotgun and pouts in the backseat; he's a thief and so we hate him and give him the silent treatment. This particular journey has its own set of directions, the map is worthless, and there's only one exit. The overall view doesn't change - same old signs, worn out towns, major construction delays, ugly accidents, bad food, and ridiculous radio reception.

What's it called when you get lost in a state of grief, but no one has actually died? There must be a word which loosely defined means something is seriously backwards. People on the street see me driving in reverse and scratch their heads while thinking What is wrong with her? There are some who shout out directions and driving tips. Pull over. Get out of the car. You're going the wrong way.

My father is back in Hospice with ESC - End.Stage.Cardiac. Huh. It won't be Alzheimer's Disease that is the end afterall. 16 years ago, a pacemaker was installed in his heart and the battery needs charging. He won't be seeing a mechanic. There's just no way. He's hanging in there as all solidly built engines do, but you can tell he's petering out and riding on the fumes. He slows down by midday, way down, and his color goes gray. I park him carefully in his recliner and speak softly. He needs wax. The nurse says it's day to day, but could take months. Again, with the shitty itinerary.

Clearly the end is in sight, and dear God, I am grateful for it. I say goodbye to my father every day as if maybe it's his last, though I suspect it is not. There's a few more miles to go but, still, my eyes are peeled - looking for an oasis. We could both use a clean, well-lit place to stop. It's up the road apiece and we can't miss it; there's only one exit.

Tuesday, July 6, 2010

STEALING HOME

Last month, I moved my dad into a new room at Bickford. I knew it was going to be hard on him, but I could not face a whole summer of visits in his old one. When he was first admitted to the memory care unit, I did not take time to carefully choose where he would be living because, frankly, I did not think he would be living much longer. I had not noticed how small and boxy it was or that he could not look out the window. The head of his bed was actually jammed up next to the bathroom door which was starting to disgust me. The guy next door was nearly deaf, constantly raised his voice, and blasted his television set. All these things of little consequence were grating on my nerves.

His new room is bigger with a little hallway where the bathroom is. You can sit in a chair or on the bed and not view the toilet. The warmth of the sun pours over my dad, and he can roll his wheelchair up to the window and look out at a tree. A corner hugs his bed where there is actually room for a matching nightstand and a new little lamp. He's at the end of the corridor, so no more drone of the neighbor's TV.

I worried about the switch for two weeks and still question my motives. Nothing about the old room bothered HIM, but everything about it bugged ME. I pretty much knew he would not, could not, handle the move without suffering greatly. His brain is a raisin and his one solace, knowing his way around the tiny community where he exists, was about to be extinguished. Like an amateur magician yanking the tablecloth set with china and crystal, I attempted a feat fraught with disaster. I thought of the old Helen Keller riddle. Question: How did Helen Keller's parents punish her? Answer: They rearranged the furniture.

My father now turns right instead of left when he wheels out of his room and left not right when using the loo. The dining room is on the other side of his world and his diplomas and war medals hang on different walls. He does not recognize his belongings in their new light, so, in an attempt to gain his own sense of control over the space, he has taken to bizarre methods of rearranging his dresser drawers and closet. His DVDs and books get turned upside down and scrambled every which way, puzzles are mixed in with socks and slippers, pictures of my mother lay all akimbo, cloth napkins are snatched from the dinner table and squirrelled between empty eyeglass cases and shaving creme. On occasion, he wheels his way down to the old room and scolds the poor gentle woman who now occupies it.

For my penitence, for being selfish and controlling and seeking perfection in an imperfect world - for stealing home - I spent five days in a row, twelve hours a day, with my dad at Bickford. I was his constant, the quintessential Welcome Wagon when he awoke, his human GPS at every turn, the hovering helicopter, the Stepford daughter, the freak. I kept asking this beloved and bothered old man, who could not figure out why he was not where he was supposed to be, the same stupid questions: Isn't this better, Dad? Do you want to look out the window? Don't you love your new room? Translation: Aren't you glad I got you what I needed?

Caring for my dad is like constantly visiting someone in the hospital. It's awkward and uncomfortable; everything feels closed-in and out of sync. Conversation is forced and you're grateful if there's a window you can look out and see a tree. Mostly, you just want to get back in your car and leave. When I wasn't there - by his side during the transition - the CNAs told me my father would sit in his lovely new room and cry. This only lasted a few days, but it wasn't happy news, and I figured it would happen. Stealing home is a gutsy move.

Sunday, May 16, 2010

YOU ARE HERE

When I was five years old, my father lost me at the San Francisco Zoo in front of the elephant habitat. I keenly remember the feeling, the opposite of panic, as everything around me slipped in to slow motion. I did not want the strangers around me to notice what had happened, that my dad had screwed up, so I just stood there frozen. Five minutes passed in an hour as I watched one of the elephants eat some very moldy-looking hay, and I felt sorry for both of us. This was to be the basis of my understanding that adults were fallible. I willed myself to keep breathing and not move a muscle until Dad found me. I wondered if Mom would be mad at him should he arrive home from our outing with just my brothers, and I considered that to be a definite possibility.

Actually, growing up, my dad lost me at various other places - Andy's Pet Shop, Orchard Supply, Mel Cotton's Army Surplus, but the zoo incident was classic. I asked him once if he remembered that day and, with a sheepish grin, he told me about the serious look on my face when he and my brothers finally backtracked to those poor elephants and found me. Apparently, I did not cry until he picked me up.

As an adult, I still get lost a lot and I hate the feeling just as much. Whenever I am at Woodfield mall, O'Hare airport or Union station, the Chicago Botanic Gardens, Art Institute, Navy Pier or the Museum of Science and Industry, I search for those huge framed maps and seek out the big red X or dismembered hand that points to where I am. Can't read a map worth a damn, but I love those three little words: YOU ARE HERE.

If I were brave, and thirty years younger, I would consider having those words tattooed on my body. I need them some place permanent as a constant reminder of their importance. Because, really, when I stay focused in the present, and let go of my attachment to the past and fixation with the future, I am happier. That is the lesson and this is what I know. When I visit my father, I can no longer bemoan the happy days of my childhood or six years ago or even the day before yesterday. I do not want to fret any more about the choices I made. I should not fear nor anticipate what will surely come. Presently, there is nothing more to be done but show up. I cannot panic even when time slows down and five minutes pass in an hour.

Yesterday, Charlie and I brought a picnic to Bickford and ate lunch with Dad in the courtyard. Afterward, there was a concert in the dining room and a one-man-band played tunes from decades past. Dad listened quietly and nodded off, but suddenly came-to-life when he heard THE GIRL FROM IPANEMA being played on the saxophone. An old Stan Getz song awakened something in my father's brain and he started to weep softly. He was in a different era, to be sure, and probably the one where he was a young soldier courting a beautiful Swedish girl with pinned-up pigtails, but there it was - the big red X, the pointing finger. He reached for my hand and kissed my palm. He confused me for my mother. That's okay, Dad. YOU ARE HERE.

Sunday, May 2, 2010

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.

Sunday, March 28, 2010

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.