The House

People often ask me how I ended up in Evanston- with an undertone that suggests it's a bad thing.  While that might be the subject for another post, I have noticed that Evanston has a boomerang effect  on people- they come, they leave, they come back.  Our family first moved here when I was in first grade.  I spent the first six years of my life in Lincoln Park, but I guess my parents didn't want to raise their children in the city.  We found a nice house here across from my new elementary school, and when my father retired a year later he hosted the best Grilled Cheese and Hot Chocolate go-home-for-lunch breaks (with apple slices).  My friends loved to come over and play with our neurotic dog and run back to school just in time for Spelling Class or what not, full on homemade goodness and my father's charm.  I went to the local middle school for fifth and sixth grade, but then my mother got transferred to the NW suburbs and my sister decided she needed a horse and, well, we ended up moving to Barrington.  Fast forward through the fighting and the tears and the harsh words and the plates being thrown, and my parents divorced three years later.  My sister graduated high school in three years so she could Get Out of Dodge, and my mother took the dog and me back to Evanston for sophomore through senior year.  She rented a house for a year before purchasing a lovely three-story colonial in northwest Evanston.  And she truly made it hers.  I remember coming home from school one afternoon to find her standing on a chair in the dining room and painting the walls red.  The next week the living room was marigold, and the kitchen was spearmint.  After 16 years of oyster white walls it took some getting used to on my part, but I took to it very quickly. 

And it was her house.  I went through a severe depression in high school and was in and out of

psychiatric hospitals for years, so I never really lived in the house for more than a few months at a time.  When she asked me to leave for good I lived on my own for a while, then went to college for two years, went overseas for half a year, finished up school at DePaul in the city, and lived in Lincoln Park for the obligatory few years before you realize you are too old to live in Lincoln Park.  Whenever I was at the house, though, the neighbors were wonderful to her.  She was diagnosed with Parkinson's while I was abroad, and her friends and neighbors were so helpful during that time.  Years later, when she couldn't put her coat on by herself, she would stand outside and wait for somebody to walk by and help her.  She never waited more than a minute or two. 

I moved back to Evanston eight or so years ago- I've lost track.  Dad came back after several years in Texas, where two of his sons were living, but he was getting worse and worse at hiding his Alzheimer's and it was clear he needed help.  I found an apartment four blocks from his, and it was great until it wasn't.  What started as me occasionally checking in on him quickly led to me going over there several times a day to make meals and manage his affairs, then moving him to nursing homes, then managing hospice and Medicaid for two and a half years.  Meanwhile, Mom had formed more ties in her neighborhood- the kids across the street mowed the lawn and shoveled the snow; the family next door invited her to New Year's Eve parties; the block had Flamingo Friday parties where neighbors would come with wine and food and enjoy summer evenings together. 

Mom is 70 now, and has been living with Parkinson's for 13 years.  While it's well managed, there have been plenty of falls, blackouts, fatigue spells, forgotten conversations, and other symptoms on top of the tremors.  A few years ago her health was compromised enough so we thought she would be on an irreversible downward spiral, but new medications and regular acupuncture and yoga have helped turned things around and she's doing quite well- even driving sometimes, much to my chagrin.  But the house was becoming too difficult to maintain.  Even with two boarders (she rents out my old room and my sister's old room), there was too much to do.  I was strongly encouraging her to looking into long-term care, but she decided instead to sell the house and buy a condo in downtown Evanston.  And the house sold in a day.  And the movers arrived this morning.  And last night the house looked like a disaster zone.  And after work today I'll join them wherever they are and help unpack or order dinner or let her take a nap.  I already have a bottle of wine in the car, and tonight I'll toast to her sparkling water (she doesn't drink) to this next chapter.  So long Hartzell Street, you've done good. 

Giving Thanks

 A few weeks ago I was in Macy's with my mother.  We were standing on the escalator going down when she started to sway and get faint.  I held her up and we got to the bottom and found a chair and after resting for a few minutes she started to feel better.   An employee came up to us with a warm smile and asked if she could help.  She led us to the salon area where there was a plush couch and got Mom some water and said we could wait there as long as we wanted.  She looked so familiar to me but I couldn't quite place her.  When she returned a few minutes later I asked her where I knew her from.  "Dominick's," she smiled.  Of course- she had worked at the deli counter for as long as I can remember and was always so nice.  She said she had been at Macy's for a few years and it was a little less stressful.  Then she asked how my father was doing.  "He passed last year," I said.  She looked shocked-even well in to his Alzheimer's Henry looked vital and healthy, in spite of the plaque buildup in his brain that was causing him to flush pudding cups down the toilet and swear at sprinklers and forget my name.  We would go in so I could get him his favorite Krakus ham.  "He was incredibly charming and I loved watching the two of you together," she mused.  "I'm sorry for your loss."  I flashed her a smile and thanked her and turned around to see if Mom was ready to go before I had the chance to get teary.

"The Holidays" are coming and I know this because I'm starting to want to crawl under the covers and hide for the next month.  Right now the two things I'm most thankful for are that I will be at work tomorrow, and that I have some pretty fantastic friends to provide support.  And really, a nursing home isn't a horrible place to spend Thanksgiving- if you work there.  The families and residents and other staff are happy that you're there, and you get to sing "Albuquerque Turkey" and play with Marley the dog who is coming in to visit, and watch the Thanksgiving Day Parade because Matt Lauer and inflatable pilgrims make people happy, and connect with residents who don't remember that it's supposed to be a happy holiday, and share what you're thankful for with the ones who do.  "A whole buncha good kids," said my 91 y/o former ENT surgeon, when I asked him last week.  He had ten total, but we didn't have the heart to tell him that one passed away last year so in his mind there are still ten and that's okay. 


Nursing homes are different if you're the resident, or a family member visiting the resident.  I'm fortunate to work in one where the staff truly cares and the residents have a good quality of life, but the place my father was in for the last two and a half years of his life was a shithole and going there any day was difficult, but the holidays exacerbated that.  Stupid decorations that made me cringe, Lawrence Welk holiday specials on the TV, staff who made it clear they didn't want to be there.  Dad was on a pureed food diet so I would make him pumpkin pie filling and tried to feed it to him.  Pumpkin pie was always on of his favorites- a close second to anything chocolate.  Years back, when he was living in his apartment, I would make a pie, stick it in the oven, we'd walk the four blocks to Starbucks for hot chocolate, and by the time we got back the pie would be ready.  It never ceased to amaze him.  At the nursing home, he wouldn't eat the pie that was sent up on the tray for the holiday lunch, but he did take a few bites of mine before giving me the face that made it clear he was done. 

After work tomorrow I'll go to dinner with a friend's family, who have taken me in the past two years.  It's a very lively but safe atmosphere, and her husband makes the most incredible cornbread stuffing.  Her mother and my father were at the same not-shitty nursing home for four months, before my father got kicked out for bad behavior.  She lost her mother a few months after I lost Dad and her family has been a rock for me.  We'll share food and wine and more food and more wine and discuss which Beatle we would want to sleep with and laugh about olives and I'll probably wear some cute boots, but if I came in slippers and sweatpants they wouldn't care. 

Then I'll come home and go to bed and Thanksgiving will be over and I'll wake up the next morning and go to work and hope that I can put it out of my mind for a while because while I'm so very thankful for so many things, and make a point to remind myself of them on a regular basis, I would give anything to be able to share pie with my father.  I hope there's pumpkin pie- and wine- wherever he's looking down from. 

The Little Things

7:15p and I finally smile tonight, about three blocks from home, because I remember that waiting in the fridge is (a bottle of wine) and a Tupperware of dinner that one of my volunteers at work made for me yesterday.  She has come faithfully every week for her whole college career to play piano, sing, and connect with my residents on Memory Support and her loving, accepting demeanor brings a great peace to all of us.  As she was leaving last night, she handed me a bag filled with Spanish rice and peas other goodies that she had made for a dinner party with her college friends.  "But I wanted to share some with you," she said, her face glowing. 

Earlier in the day I found myself standing in the doorway of a friend who was recently diagnosed with bronchitis, most likely because her immune system is compromised because of the chemo for her breast cancer.  Fortunately, her multiple sclerosis has been fairly  manageable during all this treatment.  I had promised to bring her a tea and a hug on my lunch break (she lives a block away from where I work) but when I headed out to her apartment I was on the phone with a dear friend, 29 years old, who had lost her father a few short hours ago to ALS.  So I forgot to get the tea.  And I stood in front of her and just felt horribly guilty.  How could I forget the tea!?!  I was so mad at

myself.  But I had to get back to work.  So I blew some kisses and promised to text later, went back to work and got my residents ready for our weekly Saturday sing-along, which is one of our favorite programs for the whole week.  Basically I pretend that I can sing, and try to mask my voice with bells and tambourines and big smiles and a pianist tries to drown me out and we all have a grand time.  And halfway through Singing In the Rain one of my residents starts having a seizure and it's almost too much and we call the nurse and the show must go on so I start talking about the next song, Home On the Range, which I always introduce as my favorite place- where seldom is heard a discouraging word and the skies are not cloudy all day. 

Later, around, 5p, I am catching up on paperwork and charting and I call my friend again because hey, when your Dad has died the night before you cannot take too many phone calls, right?  And she says, "you know, I'm taking Monday off from work and all I can think is Great, I'll be able to visit Dad."  Because visiting Dad in the nursing home is what she is used to doing in all her spare time.  This I know all too well.  And one of my residents is sitting next to me in my office, and she's saying, "Oh I like you.  Oh, you're okay.  Oh, I don't know what to do.  Oh, I like you."  And those are the exact things I want to say to my friend but instead I fumble all my words and something comes out like, "cry because it's good because you might not be able to cry because you are amazing because it  hurts so much now because at least you can feel and what do you need- wait no, you can't tell me that now, I'm supposed to know what you need, I'm so sorry, I love you so much..." and my resident nods and sighs and throws her cup of Ensure on the floor and gets up and goes out to watch I Love Lucy on the big screen TV in the living room. 

6p and I leave work and go to my health club and try to drown it all out in the pool- I literally get lost in the water and lose track of time but after my swim I am more balanced and focused than I have been all day. 

My friend's father died a week short of her birthday- just like my father did.  She is being flooded by love and support, just like I was.  Her father will not see her get married, like mine won't.  Her father will always be the biggest part of her heart, just like mine will.  She will never regret the years she took out of her life to give him love and light, just like I won't.  They're up there tonight, toasting and laughing and smiling down on us.  All of us.  Everyone. 

The Next Chapter

I woke up to the phone ringing this morning, and before seeing who the caller was I opted to retreat back under the covers for a few more moments of comfort.  A few minutes later I checked my messages and heard the worried recording from Geraldine, my father's old caregiver.  Although it's been years since she took care of him in his apartment, we still have a strong connection and speak on the phone about once a month.  She came to visit Dad several times when he was dying and has always held a special place in my heart.  She has a curious sixth sense and always seems to know when something is going wrong- call it intuition or compassion or connection, she is always looking out for me. 

When I finally checked my phone I saw her name on the caller ID and was immediately jolted out of bed.  In my early morning fog I was still in that place where dreams meet reality but my mother's image immediately came to mind.  While going for a walk around the block in her North Evanston neighborhood yesterday, she fell forward and hit her face on the sidewalk.  Several good Samaritan neighbors ran out and convinced her to go with them to the hospital (she sprained her wrist, was


Bonnie (center) at her Parkinson's Dance Group

bleeding profusely from the lip, and had cracked several teeth), but after three hours in the waiting room of the ER she decided that she would heal at home.  We were able to make an appointment with the dentist this morning, and fortunately most of the lip damage was in the soft tissue and will heal in it's own time.  The cracked teeth will be repaired next week. 
I stopped off at the grocery store to pick up bananas, soup, cheese, ice cream, soft foods.  My friends at the coffee shop made her special double-tall skim latte, for gratis.  Back at her house I put away the groceries and listened to Mom try to work things out in her head.  I think she was in as much (or more) shock and frustration as I was.  Every other time Mom has fallen, she's brushed it away with, "oh, the sidewalk was uneven," or "I was wearing the wrong shoes."  Today, she sat at the kitchen table and admitted that she had no idea what happened.  I tried to get some clarity- Did you feel dizzy?  Weak?  Were you shuffling you feet?  These are all symptoms of Parkinson's that Mom has dealt with in the 13 years she's had the disease.  But no, she insisted, she was feeling great, which left us both at a loss with how to move forward. 

I needed a breather and went into the basement, where some of Dad's old furniture had been in storage since I moved him out of his apartment 6 years ago.   A dining room table, an exquisite dresser, several pieces of art, some bookcases.  In a few weeks I'll be moving from the studio apartment I've called home the past nine years into a 2-bedroom apartment a few blocks away.  I'm excited to be able to have people over and feel at home in my own space.  I am honored to be able to put Dad's old pieces to use and continue their legacy- he and Mom had many of them before I was born.  But still, there is nothing I would want more than for him to see me through this next chapter.  He always wanted the absolute best for me, and stayed beside me when times weren't so great.  I know he would be so proud of me right now and would want to help out however he could.  There is nothing I wouldn't do to be able to share a glass on wine on my new back porch...we've talked in every other setting and to finally have him see me as an adult would be the ultimate compliment and validation. 

I still have two weeks until I move and am trying to get the last-minute stuff together.  I'm trying not to sweat the small stuff.  I'm trying to remember to have fun.  I'm tired.  I'm looking forward to the next chapter.  I want nothing more than to be able to share this with my Dad.  I want nothing more than for my mom to be safe.  I don't have control over either of these.  I can appreciate the little things, like how Mom's neighbors stayed with her late last night and how I went to my local wine spot tonight and a friend immediately said, "you look like you need a hug."  So we'll do this.  We'll move forward.  We'll take the next chapter.  But I'm a slow reader and I need to pace this stuff out. 

100 Days

It's been 14 weeks...or three months...or 100 days since my father died in the early morning hours of June 19th, 2012.  I don't know how the time has passed but somehow it must  have, because September is almost over and the leaves are starting to change and the cards of condolence stopped coming a long time ago and I find myself pretending to function on a somewhat very normal level.  And yet the loss is part of my every moment, my every thought.  Our closeness, and now the absence of that, has been more painful than I could ever had prepared for. 

In the last 100 days I have:

Cried.  In yoga.  At the bar.  At home.  On the phone.  In therapy.  In grief counseling.  In the swimming pool.  In bed.  By myself.  With friends.  In the car.  In Starbucks.  At work.  At Ravinia.  In the grocery store.  Pretty much anywhere has been fair game. 

Spent a lot of money on chair massages.  Spent a lot of money at the bar.  Raised over $1,300 for the Alzheimer's Association. 

Gone out of my way to seek out hugs and touch. 

Had panic attacks.  On the El.  In a restaurant.  At work.  In yoga.  On the streets of Downtown Evanston.  In the car.  Taken a lot of Xanax.  Taken a lot of Tylenol PM.  Taken a lot of anti-depressants. 

Been told by a psychiatrist that I'm doing just fine.  Been told by an internist that my strange symptoms (why did my arm go numb for three hours?) are all not unusual, my labs are normal so I shouldn't worry. 

Listened to a lot of Billie Holiday.  Listened to a lot of Wilco.  Listened to a lot of Beethoven.  Listened to a lot of Leonard Cohen.  Listened to a lot of Regina Spektor.  Listened to a lot of Pearl Jam.

Listened to people tell me everything they think will help: "You should drink a lot of water."  "It must be such a relief."  "You really need to get back into dating."  "He's in a better place now."  "I had a dog for a week then had to get rid of her, so I understand what you're going through."  "So you're okay now, right?" 

Been so thankful for the people who may not know what to say, but were willing to listen to me.  Been so thankful for the incredible support of my friends and the community. 

Seriously considered quitting my job.  Realized that was a seriously dumb idea. 

Slept more than I thought was possible.  Stayed awake more than I thought was possible. 

Hurt more than I thought was possible. 

I have not:

Picked up Dad's stuff from the nursing home.  They packed everything up and put it in storage, with the understanding that I can come get it whenever I'm ready.  I'm not ready. 

Picked up his ashes from the Cremation Society.  A dear friend of mine painted the wine bottle "urn" I'm planning on using...but I haven't gone to get it filled yet. 

Closed his Mastercard account.  I'm so used to having the card in my wallet.  I haven't used it, the account balance is zero, the bank accounts are all closed...but that silver card looks so comfortable in my wallet.  I realize that I could close the account and keep the card.  This is an obsolete idea. 

Gone to the beach.  All summer.  I love the beach.  I couldn't go. 

Had a memorial service- it seemed way too overwhelming.  I am slowly working towards one, after attending a dear friend's mother's service last week. 

Gone more than 20 minutes without thinking about him.  The car, work, the apartment at night, are the worst.  You think I'm talking to you?  You think you see me laughing?  Chances are, I'm thinking about him.  Or the lack of him.  Or my loneliness. 

And I am not alone.  I know this.  I have the best friends, co-workers, community a gal could ask for.  But something has been missing for the past 100 days, and it's irreplaceable. 

I am not thinking about the next 100 days.  I am not thinking about tomorrow.  I am thinking about getting through tonight.  It's not "One day at a time."  It's smaller than that- the next  half hour, this moment.  I want to cherish this moment.  I want to be happy.  I want to smile, really smile again. 

I want to love again.  I want to be loved again. 




 

Friday

"Today is Friday...Fish Day Friday, is everybody happy, then I must say!"  So says one of my residents, but she also says the same thing for Thursday... and Wednesday.  This morning, when asked how she was feeling, her answer was "terrible".  Are you in pain?  "No."  Are you sad?  "No.  I'm just terrible."  And I could sort of sympathize with her, even though my job at that point was to encourage, support, and uplift her.  For my resident, all it took was a tambourine, a visit from a therapy dog, and a theatrical rendition (by me) of "Five Foot Two, Eyes of Blue".  Terrible quickly turned into Terrific. 

I'm not "in pain."  I'm not "sad," otherwise, how could I function "so well"?  I mean, I get up.  Okay, so today I finally woke up to the third alarm, 20 minutes later than I had planned.  I was only 4 minutes late for work, which is better than the usual 6-7 minutes.  Because I don't care.  Which isn't true.  But it is.  I hate mornings.  So much.  I just want to sleep forever, and things like "work" and "life" seems to get in the way of that, grr. 

And really, it was a decent day...I mean, yeah.  We had a music therapy program this morning, one of my favorite activities.  My residents get caught up in the music (as do I), and there is so much love and connection and emotion and engagement and feeling in the room it's overwhelming.  I talked with the music therapist, a good friend of mine, for quite a while after the session and we made plans to see a jazz show in the upcoming weeks.  During my lunch break, I did a phone interview with someone for an upcoming article I'm writing, and got inspired again by the ideas and principles of fair trade and sustainability.  In the afternoon I leafed through Ladies Home Journal with a resident who Oohed and Ahhed at every picture of birdhouses and Chris O'Donnell and okay, so did I.  But we shared that, and it was good.  And we laughed.  And I played "table balloon ball."  And I played Beethoven, on the piano.  And I read some poetry.  And I laughed.  And I danced.  And I helped.  And I want to think I made a difference.

And I wanted to cry.  I left work, went for a swim...the water was like home.  The water was the most comforting part of the day.  In the water I am safe....from the world.  And I can cry in the water, and it's okay. 

And I joked with some friends.  And I laughed.  And I joked.  And I wanted to cry. 

I went to an art gallery opening, for "green" artwork in Evanston because in my former life I cared about things like that.  And the art was fun...and I had two glasses of some white wine out of a recycled, compostable cup.  And I left because  couldn't stand to be there anymore...around people...laughing...caring about stuff...how could they? 

I stopped at Jewel to order a cake for a resident's 98th birthday tomorrow.  While I was there, I waved to my banker who was across the aisle in the line for the deli.  And I flirted a little with the guy in front of me in the self-checkout line...and he flirted back...and I have had a good horrible miserable day I want to cry scream yell curl up retreat hide forever. 

It's not okay.  Nothing is okay.  Nothing is normal.  People are walking down the street.  Don't they know that the world is different now?  Don't they know that nothing matters?  What is up with them? 

Tonight at Jewel I bought myself some flowers...to replace the ones that people sent after Dad died (80 days ago), to bring some life into my apartment.  Later this evening, the whole vase fell on the floor...but didn't break.  The glass didn't shatter.  The flowers are in tact. 

Life goes on.  But it doesn't.  But it has to. 

Time

I remember sitting in a friend's kitchen in the week before Dad died.  It was 7:30p, she was making soup, we were drinking wine and eating something I had brought over (hummus and chips?  I can't remember now).  Her boyfriend was busy unpacking boxes of books and CDs and "albums" and other artifacts- they had been together more than eight years but just moved into a new apartment with more bedrooms and shoe closets and office space than one could imagine and a neat view of the park across the street.  The cat was still hiding under the bed in one of the offices.  Life was good, promising, exciting.  I felt that with them. 

I was sitting on a stool in the kitchen; that much I remember.  I had nothing and everything to say, and so did my friend.  Neither of us had been this close to death before.  To her credit, she readily admitted that she didn't know what to say, and I loved her for that.  I opened my mouth and didn't know what would come out.  Turns out, it was the most random, technical, boring stuff.  I had nothing to say about the hours I had spent by Dad's bedside that day; how I brought my yoga mat to practice while he slept; how the Hospice nurse came three different times to check on him.  I couldn't talk about how his breathing started and stopped; his eyes were closed but fluttered occasionally; how his body softened when I lay next to him.  Instead, my mind had gone numb and I could only think about the concrete stuff. 

"Now I know some of the answers that will be with me forever," I said.  "Dad died in Jun 2012.  Dad died when he was 87.  Dad died when I was 32 (it was 13 days before my birthday).  Dad died in June."  On that Thursday evening (Dad died five days later on Tuesday, June 19), I had some of the answers.  I never wanted to know these things.  But now they are with me forever.  It's been 59 days since June 19th, 2012.  Dad was 87.  I am now 33.  Somehow, time has passed.  I don't know how.  But still...I am not the same person I was (before).  Not in the slightest.  I have been through every emotion, sometimes in one day, one hour, one minute.  I have had panic attacks, cried in the grocery store, melted down at work, hyperventilated in a bar, had horrible nightmares, had peaceful dreams, had the best hugs from friends and co-workers, read the most touching cards, sent the most raw e-mails, struggled through grief therapy, read all the books, let go of more than I could have imagined. 

Dad with a doggie friend at
Three Crowns, December 2008

Today a dear friend lost her mother.  We first met four years ago at Dad's first assisted living facility and stayed in touch long after Dad got kicked out (for bad behavior- that's my Henry!).  Over the years we've shared drinks, e-mails, pictures, texts, hugs, tears.  I saw her yesterday and we both knew it was close.  Hours, the Hospice team said.  She was my last thought before I went to bed last night and my second thought after I woke up this morning (Dad is always my first). 

When I got her text this afternoon my heart dropped.  I was at  work but as soon as I had a break I retreated to my office for a few minutes and gave her a call.  Her voice, my voice, our words...it was all like a strange memory, I wanted to do everything,  I wanted to make it better, I had just been there 8 weeks ago.  There was nothing I could do.  We both knew that.  But we were on the phone together.  We talked.  She talked.  I listened.  She was heading out to take her sister back to the airport.  Was she okay to drive, I asked?  Her son would drive, she said- it was good practice.  We exchanged our love, promised to make plans to get together.  I gave her titles of two books that have helped me in the past two months.  She promised to look them up.  We hung up the phone. 

I finished my afternoon at work, went swimming.  Thought that today was August 17, 2012.  My friend would always remember it. 

Every day is a gift.  I want to do something every day to remember.  Today is Day 59, but is also the day that I went to a random art gallery opening by myself and wore a huge orange t-shirt at work celebrating our employee recognition initiatives.  Today is Friday.  As one of my residents and I yelled in the elevator, "Today is Friday!  Friday, fish day!  Is everybody happy?  Then I must say..."

But everybody is not happy, and I wish love and peace tonight to "everybody." 

Reminders

It's 9:34p on Friday night and I'm looking around the apartment.  I really should clean, or at least "straighten up," but instead all I want to do is Pigeon and Pyramid Pose and feel some actual sensation that I can handle, process, understand, compartmentalize. 

I look on the corner stool and there are the flowers that Maryhaven, Dad's nursing home for the last two years of his life, sent after he died.  It's been 52 days since that morning in late June and the flowers are wilted.  Still, I can't bear to throw them away. 
My eyes fall to the floor under the standing lamp, where the book "Living After a Loved One Has Died" landed after I threw it there in frustration one night. 

Over on the desk stand 25+ sympathy cards from friends and coworkers...I have taken great care in opening them on the most difficult nights and there are still two more that I haven't opened yet...but I am saving them because I am scared for the day when the cards stop coming. 

On the bedside table sits "Healing After Loss- Daily Meditations for Working Through Grief," a book my dear friend gave me for my birthday 13 days after Dad died.  She thought it was a somewhat strange birthday gift but the daily readings and validations have proved invaluable for me over the past 7 weeks. 

Poking out of the recycling is the program from a reception I went to at Midwest Hospice last night.  I would have not  been able to make it through the past two and a half years without their incredible care and support...and Dad certainly had a vastly improved quality of life because of them. 

On top of the stack of papers "to be filed" is a large envelope from The Cremation Society of Illinois.  I am reminded that I still haven't picked up his ashes from the office in Park Ridge.  I will soon.  Seriously.  I just haven't...had time...or I don't want to.  But I can't stand to have them stay there either...

I open the fridge and there is the hummus I bought at the Trader Joe's across the street from Maryhaven for dinner while I sat with Dad during his last night.  It's half empty and probably moldy but I can't bear to throw it away. 

I get a text message from a coworker.  I remember how she came out to sit with us twice during the five days Dad was dying...she had never met him before but knew him through my stories.  She was there, present, giving, willing to Be with us at the most difficult time. 

I am tired.  My boss is on vacation this week and I snuck away for a yoga class during my lunch break today, which was cathartic but also made me Feel.  Now, nine hours later, I am emotionally drained.  I miss him now.  Earlier today a friend texted that she is having dinner with her father, who lives out of state and is back in town for the weekend.  I am happy for her, but a teensy bit jealous.  Yesterday I helped a friend and his family move his grandmother into a local independent living facility- being with the family made me happy, but a teensy bit jealous. 

I haven't canceled plans since Tuesday, and I even went on a date this week.  I've gone out every night since Tuesday.  I have distractions.  But still.  I miss my father so much, all the time.  The reminders are everywhere, and even if they weren't around they would still be top of mind.

Wednesday

Random musings:

43 days.  How has the time passed since Dad died?  I don't remember any of it.

I should really go to the beach. 

10 hours of sleep isn't nearly enough. 

The phone is ringing. I don't answer it. My Super Mario Brothers ringtone makes me smile.

Maybe I'll stay in bed.  All day.  Yoga would make me feel so much better.  Get up and go to yoga!!

No really.  Get up. 

Like, now. 

Riding my bike makes me happy. 

Again, with the tears in yoga.  Woman next to me:  "We did a lot of heart openers, it's understandable."  Me:  "My father died a few weeks ago."  Woman:  Blank stare. 

The pool is my sanctuary.  Underwater I am free...safe.  I don't want to get out. 

Lane: "I have the same bike.  No, seriously."  Of course he has the same bike. 

I should really go to the Botanic Gardens. 

Me: "It's strange because I don't feel alone...or lonely.  I feel loved...and supported.  But the loss...this one, specific loss...it hurts so much.  It's taking over everything."

The Olympics are still on? 

I should really get back to online dating. 

Someone should invent kalamata olive ice cream.  The best of both worlds. 

Woman in yoga: "Take care of yourself.".  Text message from friend: "Take care!" 

Alyssa:  "So I got a text this morning from my friend who lives in Disney World..."

Not sure if I've smiled yet today. 

I should really eat something. 

Tylenol PM doesn't count on the FSA card?  It's doctor prescribed...

Just realized it's August 1st.  Hahahaha.  I don't remember anything about summer. 

Rebecca:  "Let (the tears) come."

Brandon Priestly is doing commercials for Old Navy?  Yikes. 

It's only 7p?  Yikes. 

Sangria. 

Muddy Waters Pandora. 

I wish I started my laundry before 9p.

Jimi. 

Revisiting Bodeans' "Lullaby," heard earlier today: "Goodnight, my sweet little one.  Go to sleep now, your day is done.  Dream about how good it's been...and tomorrow, let's do it again....if I die before you wake, you were worth the chance to take." 

Yes.  Take the chance.  No matter how much it hurts. 

Afterwards

It's 4:27p on Friday afternoon and I am frantically waiting for the day to be over.  This is how most of the days have gone since my father died in the early morning hours of June 19, 2012, just over three weeks ago.  Maybe at some point I will be able to write of the days I spent with him at the end, our experience with music thanatology, his final hours, watching him breathing, stopping, starting again...but not now.  I haven't been able to revisit that time in words or thoughts very much, or even talk about him.  I've cried very little.  I've only screamed twice.  I've gotten out of bed everyday- sometimes not until 2p, but still.  I think I appear to be functioning fairly well. 

And yet inside, it hurts more than I could have thought possible.  Today, after another failed attempt to regulate my sleeping between 14 hours a  night or insomnia (last night's Ambien allowed me to sleep from 11p-3a, toss and turn until 6a, and pass out again for 5 hours), I finally got out of bed at 11:30a.  I stumbled around the apartment for a while, forced some breakfast, threw the pillows back on the bed (I haven't bothered to use sheets in a week), and rode my bike to the gym- exercise is one of my biggest stress relievers.  As I headed up the stairs I ran into a dear friend of mine who has encouraged me through all of my travails with Dad over the years and has been especially supportive over the past three weeks.  Although she just lost her father-in-law two days ago, all she wanted to do was listen, really listen, to how I was doing.  Instead of smiling and brushing it off (to not have to "deal with it", like I've been doing a lot) I told her about the panic attacks, the fear, the emptiness, the sleep problems.  We discussed how grief triggers old emotions and learned responses, and how important it is to have a strong outside network- how good it was that besides friends and community, I'm seeing a grief counselor once a week and my regular therapist once a week.  Even though she was at work and had probably been there since 5a, she stopped her day to talk, listen, hug.  I suddenly didn't care that it was 1p and I hadn't "done anything" all day- that 15 minute connection made it okay. 

Still, I felt despondent and defeated when I left the gym and called another really close friend.  She was another supportive ear and we were even able to laugh and joke about a few things.  I rode my bike home, putzed around for a while, then got up the motivation to drive the car for a long-overdue emissions test, something that I guess has to happen every year or every few years- it isn't that difficult, it just involves driving a few miles and waiting in line while the mechanic pushes some buttons or whatever, but I had been putting it off.  Apparently, I had also been putting off general "care of the car" because the Subaru failed the test and now I have to go to the mechanic and get code P208 fixed, whatever that is, but I can't call until tomorrow because my cell phone is out of minutes because I guess when your father dies you spend a lot of time on the phone. 

I started to drive home and felt this utter wave of sadness and emptiness hit.  I thought to a passage I read in one of the grief books- "There are no pat answers.  No one completely understands the mystery of death.  Even if the question were answered, would your pain be eased, your loneliness less terrible?  There is no answer that bridges the chasm of irreparable separation." 

It is now 5:07p.  Unfortunately, the day still isn't over.  But I have plans to go over to a friend's house, eat some homemade peach ice cream, probably have some wine, sit on her couch and she will accept me for who I am whatever state I am because that's what awesome friends do, and I have some pretty awesome friends. 

But my father is no longer alive, and the reality of that is sometimes more than I want to face.

Juxtaposition

I'm not sure how long I'll be "at that age" where I can count on two and a half hands all the close friends who are pregnant or recently had a child, but for now it's still in full force.  A week after sending off a newborn package for my first "niece" in New Mexico, I spent the afternoon today at the baby shower for one of my managers at work and tomorrow I'm visiting a local friend who is ecstatic to be two months pregnant after a long wait.  My dear friend in Arizona is expecting her first child in June, and I have no idea how she manages the added stress, fatigue and other symptoms on top of her rigorous physician job.  But alas, the woman (and men) in my life continue to amaze me as they go on to grow their families and bring joy.

I see this, and I feel conflicted because so much of my life revolves around death.  Well maybe it doesn't revolve around death, but death certainly plays a prominent role and is on my thoughts quite a lot.  As an activity coordinator for residents who have Alzheimer's and other dementias, my job is to bring joy, stimulation and engagement to people at the end of their lives.  While it's a pleasure and an honor to be with them, seeing them decline and eventually pass away is by far the hardest part.  Witnessing my own father's decline over the past eight years, and specifically the 28 months he's been on Hospice, has been both enlightening and heartbreaking. 

I only had a short time to visit Henry this afternoon.  I had intended on getting out to Maryhaven in the late morning but had been running late all day and didn't get there until 12:45p.  I had to be back in Evanston by 1:30p to help set-up my co-worker's baby shower, which meant I had to leave Glenview by 1:10p.  I ran in quickly, signed in how I always do ("Carrie" visiting "Henry") and dropped off some yogurt for him in the main fridge.  After a quick scan of the living room, I realized that he was still in his room and headed that way.  From down the hall I could hear his screams, and by the time I got to his room I saw that Rachel, his wonderful Hospice CNA, was getting him dressed.  I poked my head in and his eyes met mine and he stopped yelling.  He was lying flat in bed, wearing a diaper and undershirt with his sweat pants halfway up.  Julie, his Hospice nurse had said he had been losing weight but I was still shocked to see how frail and emaciated 140lbs looked on my once robust father and I caught my breath.  I walked in, gave Rachel a hug and gave Dad a kiss.  I turned on the CD player and started singing along with Billie Holiday, in an attempt to distract him from the pain and terrors, real and perceived, of arduously being dressed by someone else.  I reached for his hand while Rachel turned him to the side in order to get one sleeve of his sweatshirt on his arm, and tried to quiet his yells of protest.  He squeezed my hand and stared at me.  For the next 15 minutes we continued on this way, Rachel turning him this way and that and angling his head into his shirt and wrapping his legs in the protective socks and Henry looking into my eyes and squeezing my hand and wondering...I don't know what.  Begging me.  Asking me.  Questioning me.  And I couldn't help him.  And then I had to go, promising that I would be back on Thursday and would be able to visit longer.  And I left.  And I felt terrible.                                                                         

But I had a baby shower to get to.  My manager, coworker, friend is three weeks away (or so) from having her second child.  So I helped decorate with flowers, streamers, balloons, tablecloths.  People brought food, presents, cards, hugs, good wishes.  On my card I wrote, "So happy for the life, light and love that you are bringing into our world."  And I was so, so happy for her, and willing my heart to be open.  But I felt sick, and after leaving the party I went to yoga and that's when the tears started to silently flow.  For 60 minutes I physically tried to work through the joy and promise of new life and the pain and heartbreak of a life that lingers...waiting...I don't know what for.  I don't know what I can do.  I don't know what to do.  I had plans with a friend tonight but after yoga I sent her a text saying, "I need to go home and cry and sleep."  But now that I'm home I can't do either of those and...I don't know what I can do.  I don't know what to do.  Life is precious, life is beautiful. 

I can't think of anything worse that watching a loved one suffer and not being able to help.  I want my friends' children to come in to this world happy and loved.  I want to protect them from pain forever.  And I know that's not possible.  And I hurt inside. 

Tears

It was bound to happen; I was overdue for a breakdown.  I do so well, you know, most of the time.  I go about life smiling and laughing and joking.  Random people have told me I have the calmest face, most peaceful demeanor.  My standard response is a laugh, a smile, and an offhanded "oh, I do a lot of yoga!"  People who don't know anything about me think I'm happy-go lucky.  As hard as I try, I can't keep it up all the time.  I get stressed, okay, there I said it.  And every once in a while, yes, I just break down.  As I said, it was time. 

Sleeping in the sun

Henry has been losing even more ground in the past three weeks.  He is less responsive, sometimes to the point where he doesn't know I'm there.  Julie, his Hospice nurse, has noticed the same thing and was the first one to bring it up.  It has been an unseasonably warm March, so I have been able to bring him outside on the patio during my visits.  Even though he is usually sleeping, he still holds my hand and he is still soaking up sunshine and vitamin D.  I tell him about my week, and even though he may not process it I still like to feel like that's a normal thing to do.  "I had drinks with a friend last night, and on Saturday I'm going to a magic show after work," I say.  Because aren't these the things a Dad would want to know?  "I'm almost done with my taxes, and yours too.  Your old friend Rick, who has been doing your taxes for dozens of years, said he'd finish them for us.  What a great guy." And he's still asleep, and still holding my hand, and then I sit and stare at him. 

This afternoon I had a staff meeting at noon, then headed out to Maryhaven around 2p.  Dad was sitting on the outskirts of the circle they had set up with the residents.  The woman leading the group announced loudly, strictly for his benefit, "Carrie's here!"  I pulled him back and gave him a kiss, knowing that he wouldn't really miss being away from Ring Toss.  I brought him into the foyer, which is relatively quiet and has a couch I can sit on.  He was fading in and out of consciousness, so for a few minutes I just sat there and held his hand.  I rubbed his legs to stimulate circulation, gave him a little shoulder rub, and stroked his arm.  Then I started singing.  I made it all the way through "Take Me Out to the Ballgame" and halfway through "The Way You Look Tonight" before I lost it.  "Lovely, never ever change, keep that breathless charm, won't you please arrange it because I love you..." and I just burst out crying.  Unabashedly sobbing.  And finally he opened his eyes, briefly.  He stared at me, then drifted off again.  Eyes closed, he squeezed my hand.  And I was on a roll- I couldn't stop crying.  For my love for him, his love for me.  For the sacrifices we've both made.  For the length this journey has been drawn out.  For all I have learned, all he has taught me about myself.  For all I have grown.  For his pain....for my pain.  For the fear of losing him.  For the possibility that life might go on afterwards, and how wrong that may seem. 

20 minutes later, my eyes puffy but dry, I returned him to his unit and headed out.  I was restless and a little hysterical.  It was after hours for my regular Hospice social worker, so I got in the car and called several friends with little luck.  I stopped for a coffee, then headed to the gym to practice some yoga on my own.  I've always been physically oriented- I get that from my father- and exercise or movement always makes me feel better.  I went to the library and picked up the next selection for Book Club.  I went to a wine tasting.  I came home around 7p, had more wine, ate dinner, read the newspaper, went for a walk.  Now I don't know what else to do, so I'm writing because in theory it should help.  You know, get it out.  Let go of the pain, the emotion.  But it doesn't necessarily work that way.  My heart hurts. 

I'll fall asleep sometime tonight.  I'll go to work tomorrow.  I'll call my Hospice social worker on my lunch break.  I'll be okay.  This will pass.  I'll get busy, I'll get distracted.  And in three months or so, it will come out again.  I wish knew what was between stuffing the feelings inside and letting them all flow out.  I wish there was a middle ground. 

I wish he wasn't suffering. 

Charm



A rose by any other name...circa 1980

My father was a charming man.  Or rather, he was good at charming people- to call him always "charming" would be a serious overstatement.  He was the president of the international division of a prestigious insurance company and traveled around extensively- by the time he retired when I was eight years old I had already been to more than 25 countries with him on business trips.  He quickly made friends with all the new people he would meet, from the foreign businessmen to the hotel clerks.  At my young age, it seemed as though everybody was catering to Mr. Jackson and his wife and family.  I remember elaborate parties for his birthday in Japan, private cars driving us around London, and participating in special local festivals in Thailand.  His lifestyle took a dramatic shift when he retired- instead of people giving him rides on elephants he was carting two kids to gymnastics, piano, and horseback riding. 

I think it was a difficult time for him- the retirement wasn't entirely his idea- but he did the best he knew how to.  He would pick me up from school on his bike, with our neurotic dog Rusty riding in the grocery basket.  My friends loved going home for lunch with me because he would make the best grilled cheese sandwiches on sourdough bread, and as a special treat he made stove-top hot chocolate.  In the morning he would cut up plates of fresh fruit and bring them to Mom, my sister, and me while we were getting ready as an "appetizer" before  breakfast- before he made his own famous fruit bowl with a huge scoop of cottage cheese on top.  Many years later, when he could no longer figure out how to cut a grapefruit by himself (and we didn't trust him with a knife), I made sure the caregiver or myself always started his breakfast with fresh fruit. 

I remember taking Dad to Old Navy a couple of years ago to stock up on basic clothing.  Fortunately, I didn't have to get him to try anything on in the dressing room- for as long as I can remember he had been a size 32w x 34L so shopping for him was easy.  While we waited in the checkout line he laughed at the doggie costumes they had set out for Halloween and we imagined trying to get Rusty into one of the ladybug suits.  When it was our turn to check out, he smiled at the clerk and glance at her nametag.  "Michelle," he said.  "That's a beautiful name!"  She smiled, and in his perfect tenor voice he started to croon out his best Paul McCartney.  "Michelle, ma belle.  These are words that go together well...my Michelle."  The young clerk blushed, but she was delighted.  "My parents named me after that song!" she exclaimed.  Dad started beaming, obviously thrilled that he had made her happy.  We walked out humming Michelle and talking about the Beatles.  While this scenario wouldn't have worked out so well in every circumstance- I can imagine it would be different and slightly awkward if I had been the one singing or if Dad had been 30 years younger- in this case the clerk was obviously charmed by the gentle octogenarian on an outing with his daughter. 

I was reminded of this story last Sunday morning as I was driving to work.  I was listening to Breakfast With the Beatles, a show dedicated to all things Beatles on WXRT.  Although Michelle won a Grammy in 1966, I think it sometimes gets overshadowed by their even bigger hits so when I heard it on the radio I was taken by surprise.  My mind immediately went  back to that October day in Old Navy, how happy the clerk was to be acknowledged, and how happy Dad was to make her smile.  While he had a horrific temper and it was easier for him to swear than say "I love you," I choose now to remember the softer, more charming side of my father that was beautiful when he let it come out.

Fresh Air

Somewhere in Pennsylvania this morning, after much prodding and poking a groundhog stepped out of his resting spot and somebody decided that he could see his shadow.  According to folklore, that means that we will have six more weeks of winter.  Here in the Midwest we're not sure what that means.  On the second day of February, the temperatures are predicted to reach 48 degrees today.  Yesterday was the anniversary of last year's Snowmageddon, which dropped 26 inches of snow in two days and shut down Lake Shore Drive for the first time ever in Chicago.  This year I've only used the snow scraper once and it almost wasn't necessary.  As Tom Skilling likes telling us repeatedly, this is the warmest winter Chicago has had in 80 years.  I've only lost one pair of gloves (so far), in large part because there have been so many days I haven't needed to wear them.  I was worried that the cute pink coat I got for $30 at a secondhand store in October would only last for a month or so because it's not lined in down; instead, I've been able to wear it all but five days this year. 

What does this all mean?  Putting aside all the practical worries of global warming and confused birds messing up their migration plans and flowers coming up months early, I am loving this weather.  I find I have much more energy and motivation when the thought of doing an errand isn't sidetracked by "ugh, but it's so COLD outside!"  I'm walking more, not using the heat in the car as much, and haven't had to fight with layers of long underwear.  Mostly, I'm reminded of how much I love to be outside.  I love fresh air.  I work in a stuffy, dry, hot building and it's so refreshing to get outside at lunch even just for a quick walk around the block.  Having the wind blow my hair and getting a little chill when it goes down my neck.  Squinting from the sun and getting some natural vitamin D.  Feeling the softness of the ground under my feet- not frozen as it usually is at this time of year.  It's all a reminder of the might and potency of nature and it's somehow both humbling and empowering.

As I was driving out to Dad's on Tuesday afternoon, the thermometer on the car read 59 degrees and I rolled the windows down a little to feel the breeze.  I was planning on bringing him into the library and show him some of his favorite videos on YouTube- Singing in the Rain, Kick Your Knees Up Steppin' Time, Billie Holiday in concert, the What a Wonderful World hand-puppet show.  Okay, that last one is my favorite but I tell myself that he likes it too- I don't have a good way to tell for sure.  When I got to Maryhaven, however, I had a much better idea.  I walked up to Dad, wiped up the drool on his chin from the meds the nurse had just fed him, gave him a kiss, and asked him if he wanted to go outside.  He responded with a blank stare, but I thought maybe I could see a twitch in his eyes.  I got some blankets from the laundry room, piled them on his wheelchair and pushed him off the unit.  As soon as we went through the front doors his face softened and I realized that it's probably been four months since he had been outside.  I get stir-crazy after being inside for three hours, and that trait was definitely handed down from my father so I can't imagine how restless and claustrophobic he feels trapped in the nursing home day after day.  I asked him if it felt good to be outside and he nodded his head ever so slightly.  We only stayed out for 10 minutes- he started shivering- but I could tell the whole experience brought him a lot of joy.  Driving home, the sun was starting to set and it was getting cooler but I put on my scarf so I could roll the windows down anyway and feel the fresh air.  Whether or not Puxatawny Phil was right, you'll hear no complaints from me this winter. 

Transitions

It's been more than two months since my last blog entry.  I wrote of Dad's eyes following me, his hand grasping mine, him speaking with intent and urgency.  I remember he had just finished lunch and was quite alert.  His eyes, while not necessarily bright, were at least clear.  I can't help but wonder how he has lost so much ground since then and how it has been such a relatively quick and abrupt transformation.


"Pureed tuna salad".  If you say so...

 It seemed like he changed overnight, and while I don't think that's true, Alzheimer's is an unpredictable disease and maybe something just shifted in the brain to make this happen?  Now his eyes are distant, blank, empty.  It is like he is looking through me.  He barely utters a word, and I am unable to decipher if it's because he doesn't want to or is unable to- I think the latter.  He chokes on almost everything he eats now, because his body has forgotten how to properly swallow.  I can't bear to feed him the pureed shit that the facility provides, so I stock the fridge with yogurt and pudding, and at least when I'm there that's what he eats for dinner.

Feeding has become one of the biggest issues, but it's also one of the most important because food is the only thing keeping him going now.  Dad has always had a strong fear of choking- the story goes that he had a bad experience with a piece of hard candy when he was a kid and it traumatized him.  So for me to feed him yogurt and have him choke is agonizing for both of us, and I can only be thankful that I am there to comfort him.  It's a huge struggle for me- by feeding him I am giving him nourishment, and as long as he is willingly accepting food I will continue to do so.  At the same time, he is mostly likely going to eventually die from pneumonia or another infection that will develop when he chokes and aspirates, so each time I give him yogurt I am potentially enabling that.  It's my choice not to push him to eat- if he doesn't want it, I honor that. 

Julie, Dad's Hospice nurse, wanted to lower his psychotropic medication since he has been so much calmer and withdrawn but I guess every once in a while he still swears when they bathe him so the doctor said to keep the meds in place.  For the safety and ease of the staff, I don't want him to be combative but I also don't want to medicate away any awareness or expression that he is still able to communicate.  Henry G. Jackson Jr. never wanted people to take care of him and to do so without complaint wouldn't be my father.  And I want to hold on to any glimpses of him that I can while I still have the chance. 



October 2011



National Alzheimer's Project Act

The numbers are depressing- 5.9 million Americans are living with Alzheimer's disease right now, and someone new is diagnosed every 69 seconds.  Out of the 10 most common causes of death, it is the only one that isn't preventable, treatable, or curable.  It strikes me as odd, then, that until this year there was no concrete, centralized plan to combat this disease in our country.  The Alzheimer's Plan of Australia came out in 2006, the French Alzheimer's Plan was signed in 2008 and several other countries have followed with their own.  Finally, in January 2011 Congress passed the National Alzheimer's Project Act, a "coordinated national strategy to confront one of America's most feared and costly diseases."  NAPA is supposed to spell out how we, as a country, not only accommodate but care for the millions of people with the disease and their families and loved ones.  Still in it's infancy, it builds on the work of the Alzheimer's Association and the Alzheimer's Study Group and brings in representatives from the Department of Health and Human Services.  To their credit, the creators realized that nobody knew the disease more intimately than the people actually living with it and have been sponsoring NAPA Input Listening Sessions around the country to ask for advice and suggestions.  Earlier this week I participated in one of the sessions at a downtown hotel and was honored to have the opportunity to speak. 

It had already been an emotional day.  I had a care plan conference at Maryhaven, Dad's nursing home, earlier in the afternoon and had only a minute to run in and say hi to him afterwards.  He was sitting in the activity room with the rest of the residents, watching a John Denver video.  I cringed at the irony of them hearing "take me home," when for him that would be the ultimate gift.  Every time I come he says, "canwegohomenow? canwegohomenow?"  I don't know what his idea of "home" is, but I am certain it's not a nursing home.  I ignored Mr. Denver and as I walked over to Dad his eyes followed me.  When I got close enough he grabbed my hand and mumbled "Iloveyouforever," which is what I always say to him when I leave.  So for him to say it was incredibly powerful, and by the time I raced home and hopped on the El I was already a little teary.  I got to the hotel and was whisked down to one of the large conference rooms.  There were representatives from the Alzheimer's Association milling around, and I recognized the VP of Communications and the Special Events Coordinator, two women I met when I did a fundraiser with the association last year.  We talked and caught up for a few minutes, then everybody was asked to sit down.  We were welcomed by Harry Johns, the CEO of the association, Erna Colborn, the president of the Greater Illinois chapter, and representatives from the Department of Health and Human Services.  There was a recorded welcome by President Obama, assuring us that he would back NAPA and understood the importance of it.  Then it was our turn to speak.  Out of the 200 or so people in the audience, 21 of us got up to tell our stories and share our ideas.  I normally have no problem with public speaking, but when it was my turn I could feel my voice quiver. 

"Forlorn, discouraged and despondent, he spends his days in a reclined gerichair, mumbling and swearing at the memories, or lack thereof, that plague his thoughts....Alzheimer's disease is a thief.  It slowly, painfully robs the victim of his very existence.  It's not just the memory that fails, it's the actual ability to process and understand daily tasks....we need proper funding for research into prevention, education for medical professionals and resources for families and caregivers....(people with Alzheimer's) need to be treated with respect, courtesy and compassion and not be stigmatized for their symptoms."

I had hoped to astutely but passionately cover the issues that were the most widespread, and judging from the applause at the end I think I did a decent job.  Other people talked about the importance of early detection, specific problems with early-onset, assisted living deserts (communities that have no access to them) and tax incentives for caregivers who have given up jobs and made other lifestyle sacrifices to care for their loved ones.  In spite of the painful stories that were shared, I felt that there was a lot of positive, productive energy in the room.  After we all spoke, Rep. Mary Flowers from Illinois got up and promised that as chairwoman of the Health Care Availability Access committee, she would lead forums and sessions in the state and push to make funding into research a priority.  The evening ended with more words from Mr. Johns and Ms. Colborn, and a reminder that we could still submit ideas and suggestions online. 

Sitting in the audience and listening to the other family members, friends and caregivers speak was incredibly moving, and for the second time that day I teared up.  There was the 17 year old whose mother was diagnosed with early-onset at 53, the woman who lost both of her parents to the disease within seven days of each other, and the man who stood at the microphone stammering for 30 seconds before his wife jumped in and spoke for him since he was having trouble remembering how to.  I hope that by hearing our stories and seeing us as real people and families and not just numbers and statistics, the people on the NAPA planning committee will be moved and impacted enough to push forward quickly and urgently, and we can begin to make progress on finding a cure to this harrowing disease. 

Grasshoppers and Robins



What is it thinking?



The other day, I took Dad outside to read some poems.  A friend has just given me one of Mary Oliver's collections, and I thought maybe he would find her descriptions of nature peaceful.  It seemed fitting to start with one of my favorites, The Summer Day. I had always been moved by the last line, which asks, "Tell me, what is it you plan to do with your one and precious life?"  I was planning on focusing on that with Dad, but as I read the poem out loud I was drawn to a line from the beginning.  Mary writes, "Who made the grasshopper?  This grasshopper, I mean- the one who has flung herself out of the grass, the one who is eating sugar out of my hand..."  Thinking so much about the end of life has made me revisit the beginning as well, and this line made me pause. 

I've never had a solid answer to the question Where Did We Come From?  On a basic level, I believe in supernovas and evolution and the scientists' explanations.  But on days when that sounds too harsh and technical, I can't help wondering if there's a little...more.  Smelling the early blooms in spring, hearing a newborn cry for the first time or feeling true love in somebody's eyes are such indescribable moments that I want to think there's something greater.  On the flip side, sickness and natural disasters are so hard to justify.  Science can tell me that grasshoppers are part of the Melanoplus Differentialis species, which is great for an insect in a book, but looking at a specific insect landing on your arm and seeing its little beady eyes and delicate antennae makes you look at it differently.  Is there something else that adds to its beauty, its magic, its charm?  The man sitting next to me always denounced that idea as inexplicable fluff, but here he was yelling about getting to Hollister, unable to move much more than his left hand, looking blankly right through my eyes, and I was having a very hard time explaining that to myself. 

Later that evening, I was sitting on the patio with a glass of wine reading The Long Goodbye.  It's a memoir by Meghan O'Rourke about the time leading up to and following her mother's death from cancer, and the book has been a valuable resource for me to find some congruity and understanding about the process.  I was a little more than halfway through, and at that point Meghan was struggling to get back into a normal routine and grappling with where her thoughts are taking her.  That night I read,
     
     "And as I sat, a robin hopped toward me.  Its red breast was shiny, and it had bright, bold eyes.  And I thought: OK, so, resurrection; I don't know.  But what in the world- in the universe- made this creature?  Can evolution account for the mystery of life?  As a theory, it doesn't go as far as I'd like toward explaining the world....I watched it for some time, half wondering if in any way it could be my mother.  What MADE you, robin? my mind practically shouted....How could I disregard the bubbly, foolish sense of beauty I felt looking at it?  And: How could  I reconcile that with the pain my mother endured before she died?"

Sitting on the porch that night, I saw a bird in the tree above me.  As I took in the vibrant yellow of its wings and the ease with which it floated from branch to branch, I again came back to the confusion, apathy, alienation, frustration, terror and sadness that I see on Dad's face every time I visit.  On a bad day, I would use the word "suffering".  In what world that can be filled with so much magic and beauty is it okay for pain and disease to endure with such vehemence?  And when it does come to and end...then what?

All Choked Up

It's common for the elderly to have problems with swallowing.  As the body starts to decline, it's just one of the basic functions that starts to fail.  They are at high risk for aspiration, which is when food, saliva or anything else enters the trachea and lungs, often leading to infection and pneumonia.  It's especially common in people with dementia, because the body essentially forgets how to swallow properly.  The larynx no longer closes, which is key to preventing aspiration.  Oddly, thin liquids like juice and water are especially problematic, because the muscles don't identify them as substances so they sneak past and can cause choking. 

Dad starting having problems with this about a year ago, and ever since he has been on either "nectar thick" or "honey thick"- a thickening agent is literally added to his beverages so he remembers to swallow it.  In the past few months, he has started coughing more and more when he eats and Julie, his Hospice nurse, has noticed more buildup in his lungs.  Three weeks ago we downgraded him to a "mechanical soft" diet, which basically includes foods he doesn't have to chew very thoroughly but leaves room for some texture, such as Sloppy Joe meat and scrambled eggs.  Eating has always been a source of pleasure for him, so I was reluctant to even take that step, but it seemed necessary. 


Pureed lasagna...yum

 I talk with Julie several times a week so when she called this morning I figured it was just with a medication update or something like that.  Instead, she said, "We have to put Henry on a pureed diet."  Then she paused before adding, "He choked this morning during breakfast.  Carrie, he turned blue.   His lips were purple.  It could have been...really serious.  He was visibly scared, actually panicking."  After I caught my breath, she told me that she was feeding him and he started coughing, then stopped coughing and stopped breathing.  Fortunately, one of the hefty med students was nearby and was able to lift Dad out of his wheelchair and dislodge whatever was stuck.  Had that not happened in time, well...I shudder to think...Dad choked on a piece of candy while lying in bed when he was a teenager, and I think it's the only thing he's ever been afraid of.  He's always said it would be the worst way to go, and yet it almost happened to him this morning. 

I had been doing okay.  I had gone several weeks without a breakdown, and can't remember the last time I cried.  It's been a year and a half since Dad was first admitted to Hospice, and it sounds strange but I'm actually sort of kind of getting used to it.  That in no way means that I've stopped my care and concern, or take it for granted that he will be there the next time I visit- I make sure that every time I leave the last thing I say is "I love you" and I am somewhat comforted knowing I will have no regrets, should something happen to him while I am not there.  But still.  The call this morning set me off in panic mode again, and after I hung up with Julie I sat down on the floor and cried.  And the memory of the taste of salt and tears on my face gave me flashbacks to some of the things we've been through, and I cried some more.  The release left me exhausted and nauseous, but it obviously needed to come out.  All day I've pictured his blue face and even now, eight hours later, I can't stop shaking. 

I somehow have it in my head that Dad is going to die this nice, comfortable death that they describe in the Hospice books.  He'll stop eating, become less responsive, his body temperature and blood pressure will go down, and he might even feel like he's in a peaceful place.  Julie will see that death is more imminent, and I'll be able to spend his last two days or so with him, holding his hand and singing.  Even if he does catch pneumonia, which is likely, they can usually predict the actual death within a few days.  But what if it doesn't follow that pretty, linear pattern and something happens while I'm not there?  I've read so much about grieving, talked with so many Hospice workers, commiserated with so many friends going through a similar journey.  But you're never prepared.  I thought I was ready-ish.  But my father almost died this morning without me there.  And I'm not ready.

Back to Biking

I don't remember ever not having a bike.  Growing up in Chicago, we lived across from Lincoln Park and would ride everywhere- to the park, the zoo, the beach.  My school had yearly Trike-A-Thons, and we would decorate our rides with streamers and balloons and parade them around the park with pride.  We moved to Evanston when I was six, and I was finally old enough to ride a Big Girl bike- a beautiful red Schwinn with a glorious sparkled banana seat.  I remember my father holding me up while I practiced balancing, but it was pretty natural for me and in no time I was riding solo.  

Riding away, circa 1983

For a few years we lived in Barrington Hills, which lived up to it's name and since Evanston is completely flat I loved the change of elevation.  I would go out every morning, climbing up the hills and gliding down.  It was a difficult period in my life, and biking was a source of joy and escape and a way to feel grounded. 

In college I was casually enjoying biking, swimming and running, so when a friend asked me to do the Chicago Triathlon with him I thought, why not?  Without a doubt, the bike ride was the easiest and most fun part for me and I'm glad it was sandwiched between the grueling swim and exhausting run.  Until a few years ago my participant number was still stuck to my helmet, and seeing it was always a source of pride.  I later studied in England for half a year, and I was able to find a shop that let me rent a bike for $70 for the whole time.  It allowed me to get to a job and take classes at a branch of the campus that otherwise wouldn't have been accessible.  At the end of the six months it was hard to give that bike up. 

I've had my share of accidents.  My chin has been stitched up twice and I got doored on my birthday one year. I crashed in the woods while trail riding and have stitches in the pattern of the gear that cut through my calf.  My friend made a tourniquet out of his shirt and took off to go for help but it was a good 45 minutes before the EMTs made it back with a gurney.  Finally, five years ago, thanks to a hit-and-run driver I face-planted into a lamp post and bit through my lip.  My top four teeth were all replaced, I had 9 root canals on my bottom teeth, I have 13 stitches on my lip and I can't bite down all the way on the left side of my mouth, even though I had 6 months of physical therapy after the accident.  I get really bad jaw and headaches, have to sleep with a retainer, and now have a goofy half smile that I default to- I'm pretty sure there was some nerve damage to the right side of my face.  Alas, I was up and riding again after as soon as the doctor ok'd it. 
I inherited a car a few years ago when I took Dad's keys away, and I know it's made me lazy.  If the weather is iffy or I'm tired, it just seems so easy to take the car instead of hopping on my bike.  Still, until this past winter I was still using my bike almost daily.  Then Chicago had Snowmageddon and the bike I've been riding regularly for 10 years got abandoned.  It wasn't in great shape to begin with, and six months of non-use took a real toll.  When I guiltily brought it in to the shop for a tune-up a few weeks ago, they said the cost of fixing it almost didn't make it worth it.  Instead, they sold me a completely refurbished Trek that had new brakes, chains, a new tire, the works for just over $200,  and I love it. 

In the past week I've reconnected with the joy I've always gotten from riding- the wind in my face, being self-propelled, moving past cars stuck in traffic.  I've already saved almost $10 on meters I would normally have to had paid by driving, and saved on gas.  It's better for the environment, and great exercise, but most importantly it's just fun, and I'm looking forward to a great summer on two wheels.

Man vs. Dog

Last Friday, Beau's osteoarthritis flared up after what was probably an averse reaction to his rabies shot.  Although he has no other major health concerns, at 16 years old his body just didn't take the medication well.  By 10am he had lost all ability to stand by himself, and my mom made a makeshift doggie area out of rugs, blankets and towels in the living room.  She spent the night on the couch next to him, trying to reassure him that everything would be okay.  By the next morning they weren't, however, and mom had some neighbors help take him to the vet.  After ruling out a heart condition or a neurological problem, the doctor put him on a low-dose steroid and said to keep an eye on him.  For five days Mom's neighbors and friends came over several times a day to carry him outside, and mom spent hours washing and changing the towels when he couldn't wait to relieve himself. 



Beau, taking a nap earlier this week

 On Thursday mom took him to a doggie chiropractor, who said the discs in his back were severely fused and his left hip was especially weak.  He told her point blank what nobody else was ready to say- that if Beau didn't start walking soon, his insides would start smooshing together and he would most likely suffer from organ damage.  I think this really hit home for Mom, who hadn't slept all week.  For the past eight years Beau has been her devoted accomplice, friend, and family member.  He is the best companion she could have found, and his easy, cheery disposition keeps her spirits raised.  They are perfect for each other, and although we both knew this time was going to come, I guess we hoped it would happen later rather than sooner.  I've often said that if Beau could just live forever, for Mom's sake, that would be really great.  If she were fully able-bodied, things might be different, but she doesn't have the ability right now to pick him up or thoroughly give him the care he needs. 

The decision to let him go would be easier if he showed signs of suffering, but the thing is he still looks like a gosh-darn happy puppy and his spirit is just as strong as ever.  When it comes to matters of life and death, I'm a pretty big believer in the Quality of Life question, and since I only see him twice a week I can't say exactly how much Beau's is affected right now.  I do, however, regularly see residents at Dad's nursing home who are completely unaware of their surroundings and are unable to do anything for themselves.  They either exist on Ensure or are spoon-fed pureed fish cakes and honey-thick soup base.  They have fits of rage, terrors and hallucinations, don't recognize their family, and as far as I can tell aren't responsive to compassion, touch or any other outside stimuli.  Their overall Quality of Life is heartbreaking, yet they can go on in this state for months and years without anyone suggesting "putting them down".  For the record, neither am I.  However, as I'm intimately involved with these two beings who are nearing the end, I can't help thinking of how dialectical our values are. 

Beau is Mom's dog.  While I love him dearly, I have never lived with him and don't have the same connection that she does.  I've witnessed a change in her over the past week, and she now seems to slowly be coming to some acceptance that it's nearing the time to let him go.  It has to be her decision, and I trust that she will know how and when to make it.