Traditions

I can't think of any holiday that revolves around tradition as much as Thanksgiving.  It's always on Thursday, and businesses usually get the rest of the weekend off, with the exception of retailers who are swarmed with shoppers trying to get Black Friday bargains.  Traffic is light everywhere but on the highways and in the airports, where frazzled travelers are in a rush to get to their in-laws/grandmothers/college roommate's house.  Even the classic menu is set in stone.  It's supposed to be a time to reflect on all that we are thankful for and is celebrated in some way by most people in our country; it's hard not to at least acknowledge it when even Starbucks and some gas stations are closed. 

Having a small immediate family, my Thanksgiving celebrations growing up were always very low-key.  We cooked all the basics, but nothing was made three days ahead of time and it was always just the four of us at the table.  It wasn't until my parents divorced that my mom and I started inviting a few neighbors or friends over, but the dining room table comfortably can't seat more than six people so we never exceeded that.  In my early 20s, I was invited to spend the holiday with my best friend's family in Kansas, and eagerly agreed.  I was not prepared for what it entailed- her mom cooking all week, a turkey and a ham, at least four pies, and more side-dishes than I could count.  Most of the six siblings were there, and with their spouses and children added in the house was filled to the brim.  It was chaotic, overwhelming, and wonderful.  I finally "got" what people meant when they talked about big family holiday get-togethers.  I actually went back for Christmas that year to again feel the stunning sense of love and warmth I felt when I was there- not that there wasn't love at home, but this was on a much more amplified scale. 

In the years since, Mom and I occasionally went over to a neighbor's but pretty much continued to keep things small and traditional at her house.  Dad was invited over once after he moved back to Evanston, but, um, was never asked to return.  After that I would usually would cook something for him in the middle of the afternoon and spend the evening at Mom's- he never was big on holidays and they are extremely important to her.  This year, everything seemed different.  With Dad ailing and my stress level so high, I had a hard time making plans for Thanksgiving or even thinking about it.  I was relieved when a friend asked me to house-sit for her pit bull- it gave me a distraction, something to look forward to, and an "excuse" not to make any commitments.  

Kotter, always ready to play!

Sensing my distraction, Mom invited some neighbors over and said I was welcome to join them if I wanted but didn't pressure me.  My friend said I could have people over at her house, but most people I knew were either traveling or had other plans.  So I spent Thanksgiving morning moving into the house, and sharing some quality time with Mr. Kotter.  He was nothing but adoring, obedient, attentive, and loving the whole time.  I then went for a swim to clear my head, and met up with another friend who had given me word the day before that he didn't have plans and was in the same sort of apathetic mood about the holiday as I was. 

This friend and I can't really go much more than 45 seconds together before laughing and our brains seem to work in the same strange way, so he was perfect company.  We decided to visit Dad, and stopped by Mom's to say a quick hello.  On the way up, we laughed at the line flowing out of Boston Market, which seemed funny at the time.  When we got to Maryhaven, Dad was more interested in the pumpkin pie I brought him than talking, which was fine with us.  We sang the Adam Sandler "Turkey Song", the Super Bowl Shuffle, Ella's "The Man I Love" (at Dad's request), and laughed at Fats Waller's "Your Feet's Too Big".  We talked about the Cubbies, the Bears, and anything else that might hold Dad's attention for more than 30 seconds.  On our way home, we realized that everything had suddenly turned into a ghost town and wished that Boston Market was still open.  We found the one place in Evanston that was serving and got Thai take-out to bring back to the house, stopping at my friend's apartment on the way to pick up the pumpkin pie he had made earlier in the day.  When we got back to the house, we reflected on what we were thankful for before digging into a very unconventional holiday dinner.  After a second helping of pie, we collapsed on the couch and watched "Sister Act", which initiated much more singing. 

Instead of a weekend of tradition, it was a time of firsts.  My first overnight with Kotter, and the first holiday I didn't have plans laid out in advance.  Dad's first (and probably last) Thanksgiving at Maryhaven, Mom's first holiday with vegan guests, and my first gluten-free pie.  It was the first holiday I felt completely okay with bucking tradition and just doing what felt right.  While I fully respect and appreciate the big celebrations and get-togethers, this year called for nothing more than giving thanks to the everyday joys and gifts.

STRESS

There have been countless studies on the physical, emotional, and mental effects of chronic stress, and specifically on caregivers of people with chronic diseases.  Unrelenting stress causes cortisol levels to rise, which dampens the immune system, causes wounds to heal more slowly, raises blood pressure, and leads to heart disease.  Parts of the brain actually begin to lose brain cells and memory falters.  It's linked to depression, fatigue, irritability, and mood swings, loss of appetite, panic attacks, and distraction. 



So tempting...

So when I find myself canceling plans with friends, taking hours to write one press release and unable to beat a lingering hip injury, it cognitively makes sense.  Managing Dad's care for more than four years and coping with the emotional burdens of his Alzheimer's has always been difficult on me.  The longer this goes on, however, the more affected I feel and the more compromised I realize I am.  I've really struggled in the past two weeks, forcing myself to get out of bed after restless nights riddled with horrifying dreams and night sweats.  Once I'm up, the morning nausea that comes and goes throughout the day sets in and I force down some ginger tea.  Just thinking about the day ahead of me is often overwhelming and sometimes the depression is so deep I just want to retreat.  I'm emotionally exhausted and full of anxiety. 

I've always had an overwhelming mind-body connection, and feel physically what is going on emotionally.  Rigidity and pain in my shoulders is second nature to me when I'm especially stressed.  Movement always helps, and exercise is one of my biggest stress relievers.  Despite my fatigue, I get surges of energy while swimming and find that I'm actually crying through the release.  Similar to a "runner's high", I get in a zone where I'm just flowing through the water and oblivious to everything around.  It's one of my favorite activities, and I always feel better afterwards.  Yoga, too, has  been incredibly cathartic- I hold so much tension in my hips and shoulders, and the deep stretches absolves some of it. 

However, I'll often finish up a great swim or yoga practice only to check my phone and have messages from Hospice or the nursing home, which sends me into panic mode once again.  Whether it's a concern about Dad's Depakote level, an update on the swelling in his arm, scheduling a monthly care plan conference, following up on his latest bill or a question about the new volunteer, there's always something and we are in communication almost on a daily basis.  Now that his condition seems to be rapidly decreasing, there's even more to talk about.  My phone is never off and I'm always on call. 

Understandably, this leads to huge distractions.  My mind is so frazzled and it's hard to focus.  I'll be grading student essays, see the word "Arizona" or "amazing", and read it as "Alzheimer's".  I can't remember people's names or everyday facts and knowledge that used to be second nature to me.  I know Rahm Emanuel was part of Obama's staff, I just can't recall what he did.  Is "Wheel in the Sky" Journey or Foreigner?  I draw a blank (it's Journey,  I just looked it up).  I lose track of chunks of time and read the same thing over four times without comprehending it. 

I can deal with nausea and fatigue; it's the depression and memory loss that scares me the most.  Connecting with my friends almost always helps, when I let myself.  Getting out helps, for sure- seeing people at the gym, working at my computer from a coffee shop instead of from home, even visiting Dad at the nursing home- it's sometimes easier to actually be there than away and worrying about him.  I aim for 2-3 times a week, in hopes that I'm giving him enough attention and myself enough of a break.  I'm glad to be able to vent to Hospice, and know that they truly do understand.  It's always been hard for me to do things for myself, but I know now more than ever it's even more important.  I'm just not exactly sure how to help or what to do.

Awareness

Dad doesn't know my name.  I ask him what day it is and he says "potato".  He tries to eat soup with his hands, swears like a sailor, and thinks that washing his face is some form of torture.  He has had dementia for probably 15 years, and full-blown Alzheimer's for at least four.  And yet in some strange way, his brain is processing and pondering and digesting way more than I thought would be possible at this point.  He yells and swears at me, spitting food and calling me horrible names, but 30 seconds later we can sit and talk about the Cubs or my yoga or dogs or sing Take Me Out to the Ballgame quite peacefully. 

Every once in a while he'll say something so profound that it blows me away.  I was visiting him last week with a friend of mine, and we were talking and singing in the library.  Dad was irritated, but we were trying our best.  I wanted to rest my hand on his leg, but he kept picking it up and pushing it away- very unusual behavior for him.  Finally I asked him if I could put my hand there and he said "No".  I asked him why, and he yelled and swore a bit before saying, "I'm jealous."  "Of what?", I asked him.  "Pit bull," was his response.  I had just told him that I was going to be dog-sitting for a friend's pit bull over Thanksgiving, so this didn't seem all that odd of an answer.  I told him I would bring the dog to come visit him (which I won't, of course- this dog could knock him out of his wheelchair with one tail wag!), and he said that would be good.  However, I don't think I've ever heard him use the word "jealous" before in his life.  From his rejection of my hand, the way he kept glancing over at my friend, and the look in his eyes, it was obvious that he was jealous of me.  That I have friends, a life outside on the nursing home, separate from him.  That I can play with dogs whenever I want to, walk around, feed myself with proper utensils.  The words saddened me very much, but also gave me a little more insight into what he's going through. 



A rare quiet moment at Three Crowns, December 2008

Three days ago I went to visit on my own, during dinner time.  He was with the CNA and horribly upset- he had already spilled his milk over half the food, and was pouring the apple juice on his lap and the table.  We worked quickly to clean up the mess, and I took over trying to calm him and encourage him to eat a little.  He wouldn't take anything- he spat the fishcake out and was calling me horrible names.  I looked in his eyes and said, "Dad, it's me, Carrie, you're daughter," but it didn't help.  He was still screaming.  Then suddenly he shouted, "I need to say goodbye!" I caught my breath, and asked him what to.  "To you," he said calmly, looking straight into my eyes.  
While fairly common in the general population, Death Awareness is incredibly rare in people with Alzheimer's.  Most of the don't have the acumen to acknowledge, much less express, what they know is going on.  Now that I've had the weekend to talk about, cry about, and process them, his words seem very surreal. And yet, part of me knows it's happening.  A fit and strapping 5'10" in his heyday, Dad is now down to 135lbs.  Despite a special air mattress, he has sores on his rear because of the emaciation.  Arthritis has made one hand inoperative and causes tremendous pain.  He is on a "nectar-thick liquids" diet, because he is at risk for aspirating and choking.  I'm now reading books with titles like "Gone from my sight: A Dying Experience" and "Final Gifts: Understanding the Special Awareness, Needs, and Communication of the Dying".  I don't know how much longer Dad and I will be on this journey together, but it most likely be coming to an end sooner rather than later.  People have said things to me like, "You must feel peaceful knowing that he said that," and "I'm sure you'll be so relieved when this is all over."  But I feel no sense of peace or relief.  On some level, it will be comforting to know he is no longer suffering.  Other than that, it's just sadness, fear, and a terrible emptiness I have no words for. 

Veterans Day

I walked past a group of middle schoolers yesterday, and overheard them talking about upcoming plans. 

 "Oh, cool, we don't have school tomorrow!" 
"Awesome!  Why not?"
"IDK, some holiday.  Veterans Day, maybe?"

Although I probably had quite a similar outlook at their age (although I would NOT have actually said 'IDK', since texting didn't exist then), my awareness and feelings about veterans have changed dramatically since then.  Granted, when you're 12 years old it's just exciting to have a day off.  Now, the reality of war, the military, and what the word "veterans" really means is starkly different. 

I was going into sixth grade at the beginning of the 2nd Gulf War- "Operation Desert Storm."  I remember people talking about it, and getting chills every time I heard Voices That Care (which was played over and over).  I remember hearing about Stormin' Norman Schwarzkopf and Gulf War Syndrome, but back then Kuwait was just a place on the map.  We didn't have cable, so there was no 24-hour coverage.  There were no YouTube videos because, well, there was no YouTube, or any Internet for that matter.  Although it was still highly televised, we weren't as bombarded with images, stories, and Facebook updates about it.  I didn't know anyone who was directly involved in the war, so it still was very abstract to me.   


Dad, on the right

 Dad was 15 when World War II started.  His father had died that year, and I always thought maybe that had something to do with his urgency to enlist.  Regardless, he fudged the details on his registration forms a little and began basic training with the Marines just shy of 18.  Soon after, he was shipped off to the Philippines to begin service in the war.  I know he brought his Duke Ellington records.  I know he got a horrible case of Hepatitis and the smell of pork chops made him sick.  I know his plane went down into the Mindanao River, and according to the New York Times article I found preserved, but yellowed and torn in several pieces, he was credited with "saving the lives of the entire crew."  I also know that he saw his best friend die. 

Dad never liked to talk about the war, or his time in the Marines, very much.  When probed, he would tell me how they spent a weekend driving a Jeep through the pineapple fields in Hawaii  or other feel-good stories.  He said that he left the Duke's records behind for the rest of the group when he was discharged, and how happy he was to go to New York University on the GI Bill.  But I could never get information about the terror he faced, the faces he saw, the emotions he felt.  I think about it now, and I can't imagine going through that kind of trauma, especially at such a young age.  Several of the college students I work with have spent time in the military, and some of their insight and observations blow me away.  Regardless of whether they served in the current war, they still have the discipline and motivation that comes from their training and I have to think it gives them a boost. 

Since sixth grade, of course, my appreciation and understanding of veterans has grown dramatically.  I have numerous friends with relatives closely involved in the military, and I've learned that can mean directing the Army Band at an American air force base in Germany or raising three children alone while the husband is stationed in Korea for another year.  My mom's neighbor served in the current Iraq War and came back with debilitating PTSD.  Although he's doing much better now, people suffer their whole lifetimes with physical and emotional trauma sustained while serving their country.  We put aside Veterans Day to remember and appreciate the men and women who were brave, disciplined, and impassioned enough to fight in the wars our country is involved in.  At some point it becomes much more precious than just a day off from school. 

Neighbors

The guy who lives in the apartment next to me is quite a character.  Mid-60s, legally blind, epileptic, alcoholic, and probably has a whole list of maladies I don't know about.  He is also one of the funniest, kindest people I know and having him next door is a hoot.  He'll knock on my door at 10am wanting to take my garbage out, and at least three times a week he asks when we're going to get married.  The answer is always, "Tomorrow, Wilson, we'll get married tomorrow," and he seems to be okay with that.  Fortunately his best friend lives a few doors down and is there to drive him to doctor appointments, wake him up when he forgets he's cooking and the fire alarm goes off, make sure he gets his Meals on Wheels and otherwise keep a watchful eye on him.  He's completely harmless, and there's never a dull moment when those two are around. 

I live in a building with three floors and 60 units, so there's a wide assortment of occupants and I'm lucky to have such good people nearby. No matter where I've lived, I've always made a point of trying to get to know my neighbors.  Part of it is a safety issue, but it also fosters a community.  I like being able to ask them how they're doing when we pass in the hallway, and actually care about the answer.  I like getting invited to birthday celebrations and knowing there's someone I can ask to sign for a package. 


Lancelot visiting, November 2010.  Dad's
actually a lot happier than he looks

 Before I moved Dad out of his apartment, he lived on a very friendly street a couple blocks away from me.  It was filled with families and couples of all ages who enjoyed their little part of South Evanston.  Fortunately, his neighbors were wonderful at looking out for him and treating him with care and respect.  They were patient when he yelled, told me when they saw him out walking, and knew he was delighted by the bevy of dogs around.  He befriended them all, but was especially enamored by Lancelot, the award-winning English Springer Spaniel who lived down the block.  Lancelot's owners would do training exercises in the field across the street, and Dad would stand outside just watching him clear hurdles and jump through hoops.  They soon developed a friendship with Dad, and we came to look for him in the early evenings and on the weekends.  We kept in touch after Dad left, and the owner started bringing Lancelot by the assisted living facilities to visit.  They now periodically stop by Maryhaven on the way home from work, and it's a huge treat for both Dad and me.  Lancelot performs his tricks- sit, stay, roll over, strike a pose, high five, shake, figure eights- and will even jump through a hoop I make with my arms.  He especially likes to come after dinner, when there are scraps of bread and tuna salad on the floor.  I am so touched every time they come to visit.  It's a huge distraction for Dad, and it warms my heart that after all this time they still care so much about him. 

Community can bring out the best in people.  Mom has lived in the same house for 14 years, and has grown very close to her neighbors.  When she can't get her coat over her shoulders, she just walks outside and within a minute somebody has come by to help her.  The teenager across the street mows the lawn, the neighbors to the left run to the grocery store for her, and the neighbors to the right have the snow plowed before it even settles.  She couldn't have asked for a better group of people to be around.  Her block has celebrated countless births, mourned numerous deaths, and enjoyed block parties and holidays together. 

Living in close quarters can also highlight people's worst traits- I've heard horror stories of the lady who played rave music at insane decibels at 2am, the guy who almost went ballistic at the noise from a ceiling fan, and the families who leave their dog home all day with nothing to do but howl.  But getting to know the people you live near can lead to surprising benefits and cherished friends.  And for me, if I ever get too lazy to take the garbage out, there's always Wilson.   

A Sneak Preview

Death is not the most pleasant thing to think about, but since Hospice is on my speed dial and I'm a card-carrying member of the Cremation Society of Illinois, it tends to come up more often that I'd like.  At 85 with end-stage Alzheimer's and otherwise deteriorating health, I know Dad could go anytime, and spending so much time in nursing homes and hospitals keeps it constantly on my radar. 


Sherman, mid-1970s

 I actually don't really have much firsthand experience with death, which I see as both a blessing and a hindrance.  My only grandparent to see me out of diapers was Sherman, my mother's father, and he passed at 95 quickly and peacefully when I was 14.  Mom went to the services in California, and that was that.  I'm sure I grieved and processed it on some level, but while I did love Sherman I didn't really know him that well.  In the past few years I've gone to three memorial services, but I've never attended an actual funeral. 

A few months ago I spent an afternoon in the Cremation Society's office and made all of the arrangements for after Dad is gone.  The undertaker was caring, thorough, patient, and understanding.  She answered the bevy of questions I had, and walked me through the timetable of when things happen in detail.  Minutes, hours, days, it was all spelled out.  Choosing the arrangements and accessories, for lack of a better word, was one of the hardest things I have ever done and I had to get up and take a walk before signing the final papers.  In retrospect, I'm now so thankful I have everything set up in advance- those aren't the kind of decisions to make in the heat of the moment, and there's some sense of comfort knowing it's all taken care of. 

I wasn't planning on visiting Henry yesterday, but got done early with other things and decided to spread some Halloween cheer at the nursing home.  As I walked towards the unit, a woman wearing all black and pushing a gurney followed me towards the door.  When we went through and I saw the pastor and a social worker standing there, I realized what was happening- a resident down the hall from Dad had passed about 20 minutes earlier and the undertaker had come to retrieve the body.  I froze, trying my hardest not to cry for fear of being a distraction.  I ran in to see Dad, who was muttering at the football game, then stepped back into the hallway to compose myself.  I was overwhelmed with emotions- sadness, fear, grief, and the sense that these abstract, eventual events that had been playing out in my mind could and will actually happen.  It hadn't seemed real before, but all of a sudden it became very clear that Dad is not only going to die, but will Be Dead.  As I turned to go back into his room, the undertaker started slowly walking towards me, this time pushing the gurney with the bodybag full.  The pastor and family were close behind, and I was amazed at how well-composed they seemed.  Meanwhile, I was fighting back tears and having trouble breathing.   

The son later told me that he was confident his mother was in a better place, and he felt an extreme sense of calm and peace.  I didn't know how to respond, because "I'm sorry" or "You're in my thoughts" seemed to almost contradict what he was expressing.  When he left, he did say that he was touched by my relationship with Dad and loved watching us sing together.  For the past 24 hours I've been in a panic- I keep playing over yesterday's events in my head, only this time it's Dad and me instead of the other family.  I know that whatever our experience is, when the time comes, it will be authentic and unpredictable.  I've written in the past about the importance of appreciating the life while it's here instead of dwelling on what is to come.  Being so close to it, however, has left me more unsettled, distressed, empty, and fearful than I could have imagined.