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.