"The whole is more than the sum of all parts." Aristotle

HENRIETTE “RICKEY” HARDY, 86, of Lincolnwood, IL, died Saturday, July 23 at Evanston Hospital, from complications following surgery.

Rickey was born June 13, 1925, in Brussels, Belgium, daughter of Henriette and Louis Breuer. She studied art and design at the Institute de Beaux Arts in Brussels.

Rickey married Raymond Andrew Starr in 1947, who preceded her in death in 1959. They emigrated to Grand Rapids, Michigan. Rickey was a successful Interior Designer in Michigan from the 1950’s to the 1970’s.

In 1975 she married Kenneth Hardy and moved to Santa Fe, New Mexico, which was to remain her home for the next 35 years. Mr. Hardy died shortly after the move and Rickey became part of the community in Santa Fe, managing several successful art galleries.

Her partner of 25 years, Joseph Sommer, died in 2006, and Rickey moved into Ponce de Leon retirement community in Santa Fe and made many close friends there, until 2010, when she moved to Lincolnwood Place in the Chicago area, to be nearer to her family.

She is survived by her daughter, Jessica-Marie (Tom) Schafer; her grandsons Toby, Andrew, and Nick Schafer; her sister Marie-Louise Dehou of Brussels; her nephew Raymond (Maryse) Dehou; her great-grandchildren, Alexa, Cole, and Gabriel; and legions of devoted and loving friends.

In lieu of flowers, memorial donations may be made to the Humane Society of the US, Dept MEMIT9, 2100 L St. NW, Washington, DC 20037. Memorial services will be private.

Family Gathering

Son "number one", as my mother often charmingly referred to him, arrived today to sit by me and keep me company for the day by my mother's bedside.  This afternoon, youngest son ("number 3") came and about and hour later middle son ("number 2") stepped into the room as well.


We all visited with my mother.  This mostly consisting of the normal repartee and banter back and forth between the brothers try to out charm each other (as they do) and get her attention, and then told her they were sweeping me off to dinner.

At 6:30 I was taken off to Tommy Nevins, there, to enjoy a fine pint of Guinness and a Caesar Salad.  As son number 3 had arrived with lovely Liz and grandson Gabriel, we made a party for a couple of hours.

I returned to discover that no one had missed me and that mom had been carefully turned in her bed, received her medications and been properly looked after while I was away.

~~~

Not much of a change today since yesterday, except that her temperature spiked a bit in the nighttime (up to 100.8) and her blood pressure dropped a bit (88/63) as well.  Her gurgling continues though the nurses have been conscientiously suctioning out the build up of secretions in her throat when they become overwhelming.

For the most part, during the day today, she went back down with the fever (to 99) and her blood pressure came back up (113/80).  Everyone is amazed at her endurance, but she is coming to the end of her strength and of course also becoming prey to the infection that was running in her system from three weeks ago. 

Fixing the infection is not an option, at this point, and would go against her "do not resuscitate" orders.  She specifically requested no further invasive procedures. 

~~~

I found a picture of the two of us, that I really liked from last summer, after we moved her from Santa Fe to Chicago.  It reminded me of another wonderful weekend night family party in a restaurant not far from here called  Hopleaf. 

We chose it that night because it had Belgian specialties and we figured my mother would enjoy it (her being Belgian/American and all).

As it was a loud, busy and packed venue, she got to do what she so often enjoyed doing, people watch. 

At some point while we were waiting for our table and the boys had gone to fetch us a beer, she said something to me like "Oh Honey, I think I'm the oldest person in this whole place!"

I told her that as always she was really the same age as all these people, just trapped in an older body. 

Not forgetting

When you spend time as a patient in a hospital you stop becoming yourself.  Instead you become a disease or a procedure. 

You walk around with a gown that opens in the back and wear socks with stickums on the bottom so you don't slip.  It's a depersonalizing place usually. 

mom and me 1949

The Palliative care unit certainly tries hard to break thru that barrier, but you are in a hospital bed with catheters and IV drips and medicine you need to get at regularly scheduled times. 

Remembering who the person who occupies the bed really is not an easy task.  (They've never seen you in real clothes!)

The nurses here on this floor try very hard, as do the Nurse-assistants, the Residents and of course the Hospice staff. 

playing doctor

But you're still in a hospital. 

The overflow of that hosptalized mentality hits me as well, as I am a part of what the Hospice people come to treat.  I know that's not strictly true, but I feel so much like a bug on a petri dish sometimes.

Sometimes I don't want to be "the grieving family member".  Sometimes I'd like to be a crazy dancer or an ex-race car driver.  Sometimes the sympathy is just too much. 

I am getting really tired of the phrase, "it's all right to cry". 

So. 

Today is a plateau day.  My mother has stopped her descent and is in a holding pattern for a while with her blood pressure low but not yet dangerous, gurgling, but not choking, and finally  she's been having a fever but it's not gone over 99 yet, so we all wait.  I gave my sons the evening off from coming and looking solemn while at the same time feeling slightly ghoulish for not being able to interact with her.

~~~

we matched sort of

after my dad died

After my little outburst, of raging against the world,  today I decided to go through some of my scanned old family pictures on my back up hard drive, and found some great mom and me shots.

OK.  I found LOTS of mom and me shots, but I figured I'd share a few of them, mostly for me to remember this person of so many facets who made me laugh at myself and at life. 

It was really nice having the pictures to look at, and I'm so glad I scanned them all into my computer 2 days before I flew to Santa Fe back in 2007 for her back surgery.
 
Even as she lies on this hospital bed and snores and gurgles and sighs her "ohhhh's" she was someone completely different 6 weeks ago, someone closer to the interesting woman in these pictures.

(Well, except for the snoring part...)

Rounding Corners

Still a slowly decreasing spiral of energy. 

My mother's blood pressure has been getting lower and lower all day, by small increments. 

The nurses are no longer giving her blood pressure regulating medicines, but they are now giving her medications to dry the fluids and secretions in her throat so she's not moaning. As she couldn't swallow she was making sounds to try and clear it.

She's mostly unconscious now, and when she does surface she's looking through us to different place or time.

I've made up the sofa again.  Another night by her bed. 

Maybe the last night, maybe not.

Middle son and youngest son came by for a few hours this afternoon. 

We clandestinely shared a bottle of wine (sadly she couldn't have any) and had a little "cocktail party" in the room with her. We laughed and remembered favorite stories that she loved.

~~~

Today I was bombarded with odd snippets of travel memory, from places I'd lived and become familiar enough with to find my way around.  My personal version "google maps",  ah, the things you do when sitting quietly for hours on end...

- Remembering the way and mentally going from my grandmother's house in Brussels - when I was 9 - to the bakery, to the greengrocers, to the butcher (we went to the one further away because his meat was better). 

- Wandering back again to my favorite Kro (restaurant) outside of Copenhagen where we lived in 1997, that my mother had so enjoyed, near Rungstead Kyst where T and I lived for a couple of years.

- Taking a shortcut (in the late 70's) to the Plaza from my mother's second house in Santa Fe. 

- Making my way again to Kusadasi in Turkey (1994 -ish) where I met my mom and Joe on the cruise ship and took them on a tour of bird island and had a great lunch on the quai.

- Figuring out getting around in Albuquerque in the spring of 2001 when my mother was hospitalized there for three weeks. Eventually it turned out to be a godsend when four years later, I had to know my way around as T needed eye surgery in Albuquerque and we spent the whole of the week between Christmas and New Year of 2004, going back and forth from the residence hotel to the hospital for follow up appointments.

- Getting to work from the little cottage on the lake where my mother and I lived after I graduated from High School...

So many more places and memories of my mother and I, like moving snapshots in a mental album.

In-between

Changes are happening within my mother's body and her life force seems to be waning. 

She's tiring. 

Last night, she added a new symptom of moaning on her every outgoing breath- all night. Very disconcerting.  It wasn't so much a pain moan as an "I'm tired moan".  (I could agree with her as I didn't really sleep too much either.)

All day today I've noticed her fatigue.  She didn't open her eyes as often, and seemed to sleep more deeply today than usual. 

This evening her new symptoms include "wet breathing" which is a sort of gurgling sound that sounds like she should clear her throat or swallow, but according to the nurses, her swallow functions are not working too well anymore.  They've suctioned out the spit that's accumulated several times, and given her some medicine but she still sounds a lot like a percolating coffee pot or a rattling noise.  Not a good sound. 

I am assured that it doesn't hurt.  In fact it's harder on the person listening than it is on the the person going through it.  Still it can be predictive that things are slowly shutting down.

~~~

Time is suspended while I am here, particularly as I have pretty much been living here for the last the last 18 days because though I have left the hospital for the odd afternoon or evening, I pretty much sleep and eat here.  It's like being an expat in a foreign country.

Space and Time

I am currently thinking about my world of this hospital and the country of this room.  As the days pass and I bring back changes of clothes, switch books, bring cards, and newspapers, the room fills with the personalized detritus of my existence in the corner of the room under the windows. 

When I am in the room, I look at the bed, and my mother, or I look out the window at the trees and roofs of buildings.  At night, when I look out the window, I can see the lights in the windows of other rooms on the other wing of the hospital, with other people looking back out, just like me.

When T was here we explored on foot the realms of the unknown, beyond the hospital and discovered Lake Michigan was a 5 block walk from the hospital.  6 blocks in the other direction we found a diner with real malted milk shakes and homemade hamburger patties.

The temperature was mild and pleasant when T was here.  Now he's departed, the weather has gone hot. Very. 

Photo Credit: Steve Hall of Hedrich Blessing

Today it will feel like Mars, with a heat index of 109 F, so I'm doubting I'll walk outside.   I'll walk instead, inside the hospital to get my exercise, today.   It's huge, this building and feels a bit like one of the ancient Egyptian temples in Luxor.

The hospital lobby is immense (natural light - three stories high) and filled with the sound of a huge waterfall. 

There's a baby grand player piano that plays everything from classical to jazz and plays the acoustics of the hall very nicely.

It sometimes feels more like a hotel lobby than a hospital. This feeling is fostered by the entry having a Concierge Desk, and Valet Parking.

The one constant to remind you that you are in a hospital though, is the food.

It is consistent and mediocre: a daily "hot lunch", high carb, everything slightly overcooked- as well as the alternate choice of a nice greasy  grill with all the sandwiches prepared thereon and a deep fry with the french fries, onion rings and deep fried chicken bits to go along with it. Everything is topped off  with a selection of sweets:  brownies, cakes, pies, puddings ice cream bars, not from a bakery exactly, but sort of...

There's also the standard pizza oven with the (of course) Chicago style pizza.

~~~
 
So.  This is the beginning of the third week in this Palliative Care unit.  I feel sometimes like it has been months.


My mother still looks amazing, though she's thinner and seemingly more transparent than she has been to this point.  Her skin is still lovely and unlined (how did she managed to avoid wrinkles?)

When she opens her eyes, she sees past or through the nurses, but when she looks at me, there is a touch of her old expressions.

For the last several days those expressions have been limited to "pathos" and, last night, an intense look she gave me when she was trying to cough and having some difficulty breathing. 

She doesn't talk anymore, though she sighs and on occasion moans, as if to say "Ohhhh."


It has occurred to me that this special unit of the hospital isn't just for my mother, but for me as well.  They are very supportive and caring of me.  They are treating me as if I was a part of the process.  They hug me and bring me treats from their homes.  (Carol brought me homemade trail mix; Helen snapped up a piece of pastry from the nurses station.  Angie calls in to check on our status on her day off.)  They all have time to talk with me and some of them share their own stories and personal losses.  They are caregivers in the truest sense.  They recognize my pain and they reach out to try and help.



"Grief drives men into habits of serious reflection, sharpens the understanding, and softens the heart."   John Adams

Sunday

A sometime religious feel on this day. A Catholic lay minister comes to give communion to my mother and myself.  Her mouth is too dry to take the wafer, so we say an Our Father and a Hail Mary "with" her and I receive communion. (It's been a long time for me.  I forget how dry the host is in my mouth, and how I wait for it to melt before I swallow...) 

Corfu early morning sunlight on the acacia tree

I used to do this Eucharistic ministry job for years when the boys were young.  I went to the hospitals and nursing homes on Sundays after Mass and sometimes dragged the boys along.  I know they would rather have been playing outside or watching TV or doing just about anything else.

(Me too, honestly, but, then, during those years anyway- for me- it was a "God thing".)

My kids went to Catholic school and we all went to church on Sundays for years. There was an order in our lives, a community around us for support, that was reassuring and neighborly. 

I hadn't really made the connection, but we rejoined and started participating in the whole church thing shortly after my mother remarried and moved from Michigan to New Mexico. 

I know that, for a while, even though I was 26, with a family of children and husband, I felt selfishly abandoned. (It had just been the "two of us" since I was 9!)

The Church became a larger presence in my life after my father died.  My mother had promised him she would raise me Catholic, and so the year after he died she put me in Marywood, a Catholic boarding school, as a weekly boarder I stayed in the dormitory with about 30 other girls. (I went home on the weekends, as my mother lived only about 20 minutes from the school) The Dominican nuns who ran the school gave me kindness, order and community after the loss of my dad (and of course, my mother as well, to the working world)

~~~

My mother wakes up at 6 this morning drenched with what I presume is a malfunction of the catheter.  Instead I am told that it could be her urine is starting to concentrate, another stage of body changes prefiguring her coming closer to the end.  Sometimes this concentration causes internal spasms and then malfunctions of the catheter. On the other hand, it could have slipped in the night and all could be back to normal and she could continue on like this "for a while".

She gets an early bath and change of everything and then she calmly rolls over, on her favorite side to sleep deeply. The hospice nurse comes by to see how I'm doing and tell me that my mother's hands and feet are getting colder. (I think to myself, that my mother's hands and feet are ALWAYS cold. So are mine for that matter, as T tells me with great regularity!)

She says it with a serious look to tell me that the end is coming sooner rather than later.

The Eucharistic minister comes and goes in my mother's world with nary a flicker of her eyelid.
We are still in the land of the unknown, suspended in time and space, waiting, waiting,
Waiting. 

For some reason the first part of this poem has been on my mind for most of the day.  Maybe because it makes me smile and think of my mother in her heyday...

I Knew a Woman by Theodore Roethke

I knew a woman, lovely in her bones,
When small birds sighed, she would sigh back at them;
Ah, when she moved, she moved more ways than one:
The shapes a bright container can contain!
Of her choice virtues only gods should speak,
Or English poets who grew up on Greek
(I'd have them sing in chorus, cheek to cheek.)

...

 There's more to the poem, and I love it for all sorts of reasons, but that part just reminds me of her for some reason.

~~~

Today, started out a bit roughly for her, as she woke with a fair amount of discomfort.  The nurses prompt attention to the pain meds helped a lot and made her comfortable.  Of course I woke up with her and could only rub her back and gently brush her hair from her forehead.  That terrible feeling of helplessness is not usually a great start to the day.

With T gone back to Greece (well, still in transit this morning our time) middle son came for a fairly early  breakfast (just after mom was settled down and comfortable) bearing fresh croissants.  Discussions ebbed and flowed and gently touched on decisions for "afterwards".

As per her wishes we needed to look into cremation- a subject fraught with landmines and potholes for the unwary or unprepared. We opted to go with the place that gave us the most information (and provided - on request- a detailed price list of optional services!  They also broke down what the law required and what you could provide instead of their optional somewhat expensive products.)

Still, in a cheerfully macabre sort of way, their motto "Think outside the box" did get an inadvertent chuckle out of me.

Youngest son arrived shortly before noon and handed me the keys to the family car and told me to go do my laundry, take a long hot shower, have lunch and take a nap.

So I went back to my mother's apartment and did my laundry, raided the freezer (Stouffer's is WA-ay better than the hospital cafeteria!) and had a delicious glass of pinot grigio that had been conveniently left in the fridge.  I took my shower and managed a bit of a doze, though not a full scale nap, while waiting for the dryer to finish, instead of sleep, I opted to talk to my oldest son in Michigan, and then T in Greece just before he was going to collapse in bed after his long trip home.  I also touched base with both other sons, so I felt well rounded.

Of course, spending most of the day in my mother's apartment reminded me of her everywhere I looked.  I had been living with her before she checked into the hospital, so all my stuff is still there.

Still it was better to remember her tottering about in her apartment (forgetting her cane whenever she went from one room to the next), than to see her in the hospital bed every day.

What can you do?

I got back to the hospital at around 5:30 and felt refreshed and ready to continue on,

as one must;
as one does.

Someday I'll finish what I start...

After so long a hiatus, I'm sure that if anyone is left reading this blog, they're wondering "what happened?!" and "where has this dratted woman disappeared to now!?"

Lake Michigan in the early morning

In a quick nutshell, I am back in the States, in Chicago, or rather, currently just outside of Chicago in Evanston Hospital.  I am in the Palliative Care Unit with my mother, who, at her own pace, by her own choice, is letting go of "this mortal coil" and moving towards whatever may or may not happen on that "other side".

She was diagnosed with a brain tumor at the beginning of June.  The blasted thing was the size of a golf ball.  It turned out it was cancerous.  There was unfortunately another shadow on the MRI to tell us there was another tumor possibly  forming.

Something had to be done as she was suffering incredible horrible headaches, her memory was often affected with blanks and confusion, and she'd started to have balance and vision issues that included falling and cutting her head open.

In the end, after a diagnosis was reached I flew to Chicago, and had a couple of weeks with her before the surgery was scheduled.  The last week before the surgery, I was with her 24/7, as she had fallen, needed to be rescued by the Fire Department and have 7 stitches put in her head in the emergency room. Besides which she was constantly terrified as she'd become very wobbly on her feet.


The neurosurgeon and his team operated, in Evanston Hospital on Friday, June 17 (four days after her 86 birthday which we celebrated with a party) and they successfully, and surprisingly removed the whole tumor.

We were all hopeful until Monday morning the 20th when she had a mini-stroke behind her eyes.  The surgeons went back in and inserted a stent to releave the pressure in her skull, and she remained in the Intensive Care Unit until June 30th when they removed the stent, and moved her to a regular room for 24 hours.

With what seemed like a sudden move, they discharged her the next day to the rehabilitation facility within the Independent Living complex where she lives.

24 hours later she was back in the hospital running a high fever, unconscious with an infection in her brain. This time she went from the ICU to the Palliative Care Unit within 48 hours. 

She'd made her wishes clear before the surgery (My mother signed a Do Not Resuscitate order, and she had made it abundantly clear, she was adamant that she'd didn't want further surgery or any "heroic" attempts at prolonging her life and we all honored her wishes.) 

Of course we're gutted and the process is not simple, but we're all managing - and I am in a good enough place to handle what comes next on my own.

The bottom line was finally stated by her amazing and very excellent neurosurgeon, when he came to visit her.  He looked at me over her sleeping body and said "Sometimes it seems that we surgeons just want to save everyone, but sometimes we have to pause, stop and look at what the patient wants and needs. We can't lose sight of the person.  She's an 86 year old woman with brain cancer. "

When things started to go pear shaped, everything was handled with a lot of respect, dignity and kindness. As of yesterday we've all been receiving hospice support.

I am spending my days and nights here, at the hospital, sleeping in Mom's room. And she is gradually moving towards her own endgame.

T flew from Greece last weekend and we gathered around to bid her take her journey with our blessing and godspeed.  T left today to return to Corfu.

I am already missing him, and wishing for his strong quiet presence.

Yet death and dying are very personal things, both to the person who is dying and to the friends and family affected.  We all have to wrestle with our grief and our grieving, alone.

I've not kept a journal up to this point, but I've decided to write a few of my thoughts down as I sit here in hopes that it might help someone else who has to travel this road.  

We all have to travel this path at one time or another, because we have, or will have to go through the loss of a dear someone who means something immense and special to us.

There is so much to do and many things to think about, but for now, the sitting by the bedside and the waiting seem to be what fills my days.  Quiet music plays.  I've sprayed her favorite cologne on a soft floppy plush toy that seems to give her comfort as she hugs it to herself in her dreams.

Sometimes she smiles, sometimes she furrows her brow.  There is no way of knowing for sure if any of this makes any difference, but I talk to her quietly, and sometimes I rub her back or her forehead.

I am in no man's land, waiting for my mother to die.