Christmasing On

Our Christmas traditions have changed dramatically over the years. Some traditions have faded to black and new traditions have begun. We used to spend every Christmas Eve with my mom's side of the family. I grew up with 11 cousins and one sister so our family gatherings were loud, fun, laden with favorite foods, and completely packed with people. The dads watched a lot of football. The moms did all the cooking and cleaning. The kids played. Then on Christmas morning, we journeyed out to spend the day with my dad's small family.

As the years passed, I began to participate more in the preparations, engaging my love for baking and meal prep. I enjoyed nothing more than baking and cooking for dozens of family members. But, our gathering became considerably smaller year after year, as cousins got married and eventually we celebrated only with my mom's twin sister and her family. Finally, after a falling out with some cousins, that tradition ended as well.

Now, as my parents stroll into their 50th Christmas together (49th as a married couple), I am merely a facilitator of joy for them. I realize that the time I have left with them is short and I also realize the time I have left preparing a Christmas is short. So, I sleep very little, I bake and cook a lot, and I try to cater to the wishes of my parents as often as possible. We do not spend Christmas with my mom's family at all. My dad has no family left. But on Christmas Eve, my best friend and her family joins us for dinner and Christmas day includes church and an early dinner with my sister and her family.

Christmas is sometimes more difficult than joyful these days. The dissolution of our family base has been most difficult for my mom but now, I think it might be toughest for me. It is so hard to watch as mom understands less and less while she forgets more and more. I miss having her help stuffing manicotti noodles for Christmas Eve dinner and squeezing out the press cookie dough. I wish she could still go out for a walk in the snow with me. But we do what we can which usually includes watching a Hallmark movie and drinking a little Rumchata. It's hard for dad too as he watches over her medicine routine and helps her help me so she can feel like she is a part of getting ready for the holiday.

Yet, we keep Christmasing on... We decorate until her heart's content and bake her favorite cookies and visit with the few friends who will pass through before the new year. We sit together to write our Christmas cards and she complains about how I vacuum. And we find happiness in the very little moments and the memories that come up for her in the process. Most of all, we hope. We hope that in spite of the difficulties and the changes and, often, the isolation, this is NOT the last year. We hope for many more.

Until tomorrow...

What It's Not

Alzheimer's is not initially a fatal illness. It is a thief that steals tiny bits and pieces of being with the ultimate goal of destroying a person.

It is not an on-your-death-bed, unable to care for yourself disease. It is washing the dishes by hand but not remembering where the towels are to dry them. It is eventually drying those dishes but not remembering where they go or if they even belong to you.

Alzheimer's is not being unable to walk to the bathroom. It is bathing once and then again and maybe considering it a third time because you don't remember if you bathed or not. It is using the toilet but not being quite sure of how to properly clean yourself. It is flossing your teeth but not brushing. It is washing your hair but not rinsing. It is sometimes forgetting to go in there all together for an entire day.

Alzheimer's is not initially a situation that requires outside care such as nurses or a facility specific to the disease. It is needing to be surrounded by your family, people who love you, people who love you even though, people who can remind you that you are still completely normal even though you keep calling the dog the wrong name or you have asked 17 times what classes your grandson is taking in the last hour or you can't remember to saw with the serrated knife instead of just ripping through the crusty bread of your sandwich until very little bread is actually intact.

Over the last few weeks, life with a parent with Alzheimer's has become increasingly difficult for me. Seeing the change right before my eyes is frightening and sometimes overwhelming but I am also in awe. My mom's need to be needed is very strong right now. She wants to be useful and helpful so I have been giving her small, short, easy tasks like folding the reusable grocery bags and putting them away while I store the food in the proper places.

The answer in the midst of the changes, however, is not to get someone else to take care of her. Many have suggested that I get in-home health care for her or hire a care-giver which is, quite frankly, absurd. My philosophy on caring for elderly parents is certainly evolving but it is much like my philosophy on education. I am a facilitator for their lives. I am working hard to create an environment in which they can thrive as independently as possible. If you create a hospital-like or prison-like atmosphere, the tenants of that environment will act as if they should be hospitalized of imprisoned. If you facilitate an environment of serenity and growth where change is acceptable and not a reason to stop caring for someone, you offer a sense of hope and peace and happiness.

Alzheimer's is not an easy road to travel and there are many days, I'd like to make a left and head off on another path. I have stopped wishing we could make a u-turn and head back to simpler times and I am embracing the uncertainty of what's ahead because I won't let fear win.

Alzheimer's is not an excuse to leave. It is an opportunity to return the favor your parents gave you.

Tired

Today is one of those days.
I am tired of saying the same things over and over.
I am tired of cleaning up messes.
I am tired of administering medicine to people who argue with me about what day it is.
I am tired of running to the pharmacy.
I am tired of adults throwing tantrums when they don't get their way.
I am tired of having to talk to my mom like she is a child because she doesn't understand that she can no longer carry heavy items up and down the stairs and towels cannot be placed on the stove and she has already watered those plants three times today and no, don't throw that away.
I am tired.
I am tired of doing all of the cooking.
I am tired of hauling recycling and trash out to the alley twice a week.
In fact, I am tired of recycling.
I am tired of getting attitude from folks who cannot take care of themselves when I do damn near everything around here.
I am tired of folks not throwing trash in the trash can.  I am not here to pick up after you.
I am tired of everyone else telling me I should "make" my dad do more. How? He does not care if the house is a mess and he will eat cheese sandwiches from now until the end of time.
I am tired of people drinking my soda and eating my oatmeal creme pies.
I am tired.
I am tired of being tired all the time because the work doesn't seem to end.
I am tired of feeling like I am just staying afloat so I can live for everybody else.
It's one of those days.
I know that I will miss these things one day.
I must sound like an ungrateful daughter.
I am just tired.

Cheese and Crackers

I suppose one could survive on cheese and crackers and fruit. They are all food products with some nourishment. They are capable of filling up your stomach and quelling hunger pains. But the thought of my elderly parents having to eat cheese and crackers and fruit every day horrifies and frightens me.

In my past career, I traveled frequently but since becoming a teacher, my travel is limited to one trip per year and, maybe, a weekend or a night away occasionally. Before departing for an adventure with my nephew this summer, I cleaned out the refrigerator and restocked it with various beverages, snacks, and pre-made meals (which were mostly leftovers from larger meals I made the previous week). Recently I returned from that five-day trip, only to discover that the pre-made meals were still in the freezer and that my parents had consumed mostly fruit and cheese while I was away.

While this may seem a trivial worry to many, it is merely one of many concerns that rotate through my brain on a daily basis. What if I am not there? What won't happen? Will they eat? Will they clean up after themselves? Will anyone visit?

It has been said that to worry is to focus on the negative and that too much time worrying detracts from productivity and enjoyment. So, I try to enjoy the moment. However, in the back of my head, I am still wondering what happens when they are out of cheese?

Gratefulness: Our Silver Lining

Last week, she took two baths, just hours apart. This morning, she brushed her teeth, applied her face cream, combed her hair and put everything away before she brushed her teeth, applied her face cream and combed her hair a second time. She did it all back to back and had no recollection that she had done it the first time through.

My mom and her Alzheimer's walked hand in hand into a new stage of life. While I am certain it isn't, in the least bit, the scariest stuff we will see. It is still frightening. Some days, I sit back and watch as she stumbles through repetitions because it is upsetting to her if I draw attention to it. Other days, when time is not on our side, I have to tell her, "you already did that mom" and redirect her to her next task.

There are days when my redirection makes her angry. She snaps at me. I know her frustration is really with her brain and not with me but it stings. It is usually those same days when she  is least like "my" mom. And I miss my mom.

I miss conversations about life and sharing my day or an experience with her. I even miss her telling me what to do as if I am still a teenager. "You know, Michele, you really need to wipe down that tile in the shower when you get out of there." "Did you lock that front door? What about the back door? Is it locked." "Get your dog out of that living room and off the couch. She is going to tear it up." She was a total nag.

Gratefulness offers a silver lining on our dark days. Mom thanks me all the time and says I love you every day. Often, she stops what she is doing, no matter what it is, and says, "You are such a good person, Michele." I will cherish that forever.

Compassion Training

When I was a little girl, my best friend and I would walk the neighborhood some days and visit all of the old people. The tiny, black-haired lady across the street, whom I fondly referred to as Aunt Thelma, made us toast with blackberry jam while we sat eagerly at her black and white and gray chrome dinette set, our feet dangling from the tall, cushiony chairs. We would chat with her while she drank her tea and after the toast was consumed and the tea was drank, we moved on to the next house.

Down the street a a little way lived the sweet widow, Mrs. Caudera, and her little poodle who yapped incessantly. My friend and I knocked on the heavy wooden front door and Mrs. Caudera and her pup greeted us excitedly and welcomed us inside where she would give us candy. Most of the time the candy dish was filled with pastel-colored, melt-in-your-mouth mints and we gladly gobbled them up before bidding farewell.

On to the Vlahopolous's house where there was applesauce awaiting us! The petite elderly Greek couple lived right next door to my parents. They were soft spoken but appreciative when we carried their mail in from the porch and plopped down on their couch in the living room. They always had some applesauce on hand to share.

Times were different back then. Parents didn't worry about sending their children outside to play because the village was helping to raise them. Neighbors really knew each other and took care of one another.

I wish we would return to times when, above all else, we cared about one another. My parents taught me to value time spent with others. Granted, when I was six and seven years old, I enjoyed the candy and the jam and the applesauce as much as the companionship of my elderly neighbors; however, that experience proved to be a training ground of compassion for my future.

Thinking about all this... Stuff.

People make a lot of assumptions about my life. Most folks don't ask questions about why I am living with my parents or what kind of tasks I have taken on since moving back. They don't ask how I feel or if I am stressed out. They assume that I am busy and that my stress level is maxed out but they are wrong. I do what everyone else does to maintain a home, whether they live alone or with a spouse or significant other or with their children. I clean. I cook. I work in the yard and maintain a garden.

My parents are not yet in a place where they need help bathing or getting dressed or eating. They even do the stairs alone most of the time. But my mom's Alzheimer's has reached a stage in which she struggles to make decisions. It is time-consuming and stressful FOR HER to decide what to wear and what to eat and to remember if she already took a bath or took her pills or ate breakfast. And my dad is not very mobile. He uses a walker. He basically moves from his chair in the family room to a spot on the couch in the living room to his "puzzle room" where he watches sports and puts together puzzles. So I am here to do the day to day. It is different than living alone in my own house but I am no busier than I was before. Maybe people say they know how busy I am as an excuse for no longer asking me to hang out or go out on the weekends. And that's fine. My home is priority right now. That and walking my mean dog. :)

While my to do list is not much different than "before," my worries are very different. Every morning I get up and check on my parents. I worry that one day I will wake up and one of them will have died. That might sound morbid but that's what I worry about. I worry that they will fall down the steps or up the steps or that my mom will not make it to the bathroom in time when she is out in public. I worry that something will happen to my dad and that I will have to get help with my mom. And, I worry that something will happen to my mom and that my dad will slip into an oblivion of sadness. I worry about whether or not they are eating enough or eating well. And on the rare occasion that I do go out, I know they are sitting at home eating cheese and crackers and that makes me feel terrible.

I also worry that I will eventually end up alone, never having found a life-long love, never having had or adopted children, never having found the kind of happinesses that I dreamed about growing up. I worry that I won't be able to handle whatever comes next and I know that I don't want to handle it alone. I worry that when I am in their place, there will be nobody to take care of me. But honestly, that is the LEAST of my worries.

This is a pretty lonely life. I don't regret it now and I never will. I do miss having more personal space and shelves for all of my books and I miss having lots of friends. I miss going out every weekend and catching a ball game a couple of times a week. I miss playing ball. I miss having the kind of job that involved lots of social interaction and celebrity sightings and parties and generally fun and talented people. I suppose all of that is my own fault. But there is not a lot of time to think about all of this... stuff. Because time is short. So I shove the sadness and the loneliness to the side so I can enjoy another Hallmark movie with mom or a baseball game (on TV) with dad or just a sit on the porch for an hour. This is what we are supposed to do, right? I just wish I would have done all the other things I was supposed to do first so I wasn't doing this by myself.

Father's Day

My dad wears many hats. He owns about 25 baseball caps. Five of them are random hats bought by his kids as souvenirs from various trips. The rest of them are hats representing the St. Louis Cardinals, Bass Pro Fishing, and St. Mary's High School (his alma mater). Others wear their hearts on their sleeves. My dad wears his on his head.

He has other interests, of course. He is crazy about my nephew, his only grand child (thanks to me-- the one who has yet to reproduce). If he could have my nephew around 24 hours a day, 7 days a week, he would. He doles out cash every time the kid walks in the door and says, "that's what grandpas are supposed to do." He also gets excited when my nephew calls or when my sister calls. He never used to be a phone guy.

My dad is also a music connoisseur. Most people don't know that he loves opera, big band, and most of all, The Beach Boys. His album collection is RIDICULOUS.

As dad gets older, it is harder for him to do the things he loves and it's kind of up to me to make things happen for him. There is not enough time in the day some times. I wish he had a fishing buddy who would pick him and his walker up at the house and take him to a shady spot at the lake once a week. I also wish he had a friend who would swing by and get him to his monthly luncheons with his high school classmates. Many days, I feel like I fail the man who worked so hard to make sure I had the best education and that I could play ball instead of having a job as a teenager. He guaranteed a childhood for his children because his ended at eleven when he had to go to work in his family's grocery store. I have to do better.

But today, I rolled out the gas grill and seasoned some delightful ribs. I whipped up his favorite twice baked potatoes and I baked a three-layer chocolate cake. All of this to say, "thank you and I love you." My dad is a pretty neat guy. And I am a pretty lucky gal.

Happy Mother's Day

My vivid memories of growing up are very limited. I don't remember a lot about school or hanging out with friends but I have some very strong memories of growing up with my mom. I called her Mother Nature and mother and ma. I don't think I ever called her mommy but that could be my memory failing me once again.

She would lay me up on the kitchen counter so my head would fall into the sink and she would wash my hair, usually twice because it was so oily, and I would fall into a relaxed daze. She pulled a chair up to that same counter and taught me how to crack an egg and eventually how to make pancakes and meatballs and mashed potatoes and chocolate chip cookies. She ironed almost everything, including my dads handkerchiefs, while watching "Another World" and "Days of Our Lives." When I went off to kindergarten for a half day in the mornings, she would pick me up from school, cart me home and let me iron while she folded laundry. I loved watching "Days" with her.

My mom taught me how to keep a home. It was neat as a pin and so clean you could eat off the floors (until we got a dog). She also taught me that every day wouldn't be easy. She cried in front of us, she got angry and would sometimes leave a walk it off and, while others might see that as weakness or maybe even wrong, I know now that she taught me that it was ok to FEEL whatever I felt. Feelings are feelings and nobody can say they are wrong.

I watched my mom with my baby sister (and with many kids that followed as my mom babysat them in our home). She would sit them on her lap, facing her, and she would talk to them and play pat-a-cake, holding their hands and teaching them how to clap and wave and reach to the sky saying, "SO BIG!" Watching her made me want to be a mom more than anything else in life.

She has been married to my dad for almost 50 years. Until a few years ago, she made dinner almost every night and, when my dad was working, she had that dinner on the table the moment he walked in the door. They still hold hands. They kiss each other good night and say "I love you" every single night. They taught me that even though it's hard work, it's possible to love someone "til death."

I am so grateful to have been given my mom as my mom.

Now, we work in the kitchen together. I guide her through a recipe. She can no longer crack the eggs but she is a rock star mixer. I hold her hand as she walks up steps and curbs and distances that feel a little too far for her to make it on her own. There's a little bit more role reversal as every day passes. But I wouldn't change it for anything. I am glad I am here for her like she was for me.

She is my mom. HAPPY MOTHER'S DAY MA!

Waning Focus

Mom's focus is waning.

On Easter Sunday, we sat in the first two rows at my sister's church, a wide but shallow building with extraordinary stained glass and stone-carved scenes hanging on the walls that those who grew up going to Catholic school would know as the Stations of the Cross. It's a fascinating place. Dad sat in front of the rest of us in the handicapped section and we positioned mom on the end of the pew beside me in the second row.

The priest led us in prayers and readings and songs and gave a boisterous homily about something Easter-related in his gravelly baritone voice. I am certain mom did not hear a word he said. She was watching the people around her and scratching at the tiny stain on her pants leg.

When it came time for communion, the Eucharistic minister approached the bench and before she could get the words "the body of Christ" out of her mouth, mom reached up and nervously grabbed the host out of the woman's hand and then returned to casually gazing around the church.

Now, I have to admit that I was bored out of my mind. But mom's inability to focus in large settings has become dramatically worse in recent months. We have to keep an eye on her and say things like, "Come on mom! Walk this way" to keep her attention so we don't lose her.

Mass finally ended and the priest released us as he made the sign of the cross. Mom was too busy trying to see around a plant on the alter to move her hand in a cross motion. Mom's focus is waning which means that the rest of us must be more vigilant than ever.

Baseball and the Brain

My dad is kind of a saint.

The time between mom's repetitions has shortened dramatically and her short-term memory is the worst it has ever been. The other day she asked him three times in a span of about 20 minutes if he wanted to save his leftover Chinese food. She had no idea she already asked. This type of interaction occurs on a daily basis.

This week, baseball began. My mom has always been a huge baseball fan. Before her Alzheimer's really took hold and back when dad was more mobile than he is now, my parents attended about six St. Louis Cardinals games per season. They sat in the bleachers where I had my season tickets. Each visit to the ballpark was quite the production. Donning there Cardinal t-shirts labeled "Meemo" and "Papa Joe," my parents left the house hours before game time so they could park at a nearby (and very expensive) parking lot, grab a couple of hot dogs, and catch a bit of batting practice.

Mom always lugged along a thermal bag with bottled water and often pulled a ridiculously large visor on her head to keep the sun out of her eyes. Dad tugged on one of his many ball caps and once he sat in his seat, he usually didn't move until around the 6th inning when they would pack up and head home, listening to the rest of the game on the radio as the cruised back home along the back roads.

Mom doesn't remember this season's opening day, even though we all watched the game together. She doesn't remember the walk-off win, the first win of the season. There are only three pieces of Cardinal baseball my mom remembers every day: Mike Matheny, Adam Wainwright, and Yadier Molina. The three of them have been around long enough that they are a part of my mom's longer term memory.

Now, mom still enjoys the game of baseball. She will watch every single game, keeping a watchful eye out for Yadi, especially. But every game, she has the same questions. Over and over and over, dad sits beside her and reminds her who Randall Grichuk is and tells her why Jose Oquendo is no longer standing by third base. Sunday, dad "introduced" mom to Dexter Fowler about six times and tonight, he did it all over again.

Dad is much more patient than me. He always has been. But he is especially patient now. Sometimes, dad is kind of a saint. But he loves my mom and she loves her baseball so he does whatever he can to keep their love and her love of baseball alive.