Dispatch from Room 557

Rehab is a world unto itself.

I think it is the lack of privacy that is getting to me more than anything.  There is not one aspect of your existence that is not scrutinized and made fodder for casual discussion amongst the staff.  What is sacrosanct for you is routine for them.  And that is, after all, their job.  But because there is no Cone of Silence, you hear more about yourself and your co-inhabitants than you ever would have wanted to know in a million years.  I am horrified to hear my elderly roommate reporting intimate details about my body functions to her friends and relatives.  I can’t imagine they are all that thrilled either.  At least those who are under 80 and not demented.

All rooms are doubles and, from the sound of it, no match is an ideal one.  Everyone has an issue and I am no exception.  Sharing a room with a seriously ill 85 year old with mild dementia is in turns humbling and exasperating.  She is truly suffering, and whimpers a good part of the day.  It makes my heart break but it is also extremely upsetting to listen to.  She is up multiple times during the night and, as a result, so am I.  The television blasts even though she is not watching it and I have to ask for it be turned off from in front of her sleeping form.  She is experiencing significant, audible gastric distress and I, apparently, am particularly susceptible to the sounds, as queasiness is becoming a permanent condition for me.  If I have to use the bathroom, it never fails that the aide has gotten her there first, which will mean a wait of at least 45 minutes while she is taken care of and washed up.  She needs help with her tray that I am too weak to give her, which means I have to sit and listen to her struggle until the staff comes in to help her.  And then there was the panic when she was apparently dreaming and called the nurse to report there was something seriously wrong with her roommate (me).  I was sitting on the edge of the bed reading as I heard this transpire out of the corner of my consciousness and an entire team had rushed in to resuscitate me before I could say a word.  They looked at me and I looked at them while she insisted there was something substantially wrong with me.  Which there clearly wasn’t.  If nothing else, it got everyone’s heart rate up a bit.

But then in the night I hear her murmuring, offering thanks and praise to Jesus in gentle little whispers.  I am chastened by her simple expressions of faith in the face of such adversity and pain.  With gratitude, I silently join in.

Physical and occupational therapy is hard work but, I am pleased and surprised to find, effective.  I can feel some strength creeping back, although stamina is slower in returning.  The staff is no-nonsense but incredibly kind at the same time.  My fellow patients are a fascinating cross-section, but each individual is a study in courage and accomplishment.  Some have had strokes, some are simply weak from advanced age, some are recuperating from surgery.  It is awe-inspiring to see how hard they are working and how determined they are.  There are some exceptions, those who are frightened and confused, those who are resistant and at least one dirty old man, but most are valiantly giving it everything they have. 

There is another woman here with MS.  The first day of my admission I was cheerfully told by a few people that we would be introduced, that I would like her, that she was very nice.  Which I had no doubt of.  But it never fails to surprise me that people consider having MS to be some sort of choice or hobby that connects people who have it.  I have no more in common with someone with MS than with an average person.  If they had said they would introduce us because she was a writer too or was a movie buff or lived in Ocean Township, that would make sense, but not based on the disease we both have.  And when I see her in therapy my heart sinks.  She is very, very ill and extremely impaired cognitively and physically.  What were they thinking?

The second day I am here (hmmm, or maybe the first?; it is so easy to lose track), I am interviewed by the team neuro-psychologist.  The mini-mental exam is interesting, but not interesting enough for me to rise to the challenge.  I just cannot wrap my brain around eight (or maybe nine?) unrelated words she asks me to remember and repeat.  I ought to be embarrassed, but I just don’t care.   Considering how competitive I usually am intellectually I am astonished at myself, but it is no incentive.  I have no interest in those eight words and they just won’t stick.  We return to them maybe six or seven times before giving up.  I never do remember them all.  It is a pretty humbling experience.  But not one I am particularly upset about.  This is not a good sign.

My independence has slipped away over the past year as the lymphedema in my legs limited my mobility and my function.  I did not put up much of a fight, as I am just so weary.  It seemed as though I had hit that wall of accomplishment and was just through with everything.  Hard earned career was over and done with.  Weight gain had rendered me hideously unattractive and uncomfortable.  I no longer bothered with getting my hair and nails done.   I don’t wear jewelry anymore or wear nice clothes.  What’s the point?  Not yet 60, I could see no future.  But the therapy here has had such an impact in so short a time that I wonder, maybe I will drive again?  Maybe I will be able to get myself somewhere to meet a friend for lunch or go visit my dad?   One of the nurses (Becky, I just love her!) is chatting as she wraps my legs and says offhandedly “Miracles happen all the time, you never know.” 

Now those are eight words worth remembering.

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Desperately Seeking Breathing

Last week, while we were all already dealing with a terrifying hurricane and no power for days, I began experiencing dramatic shortness of breath after only taking a few steps.  I struggled and struggled, trying to convince myself it was just something I was imagining, even though I was taking deep, prolonged gasps for air with the least bit of exertion.   I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end up with Olympic level lungs.   Finally on Sunday, Mary Kate announced she couldn’t watch anymore and she called 911. 

I actually conceded to ride in an ambulance, because I knew I wouldn’t have made even the few yards to the car.   And I agreed to go because all through that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis offhandedly mentioned his past bout of pleurisy was bothering him.  What do you say to someone who you have been married to for 17 years and who is notorious for not taking care of himself?  “What are you telling me for?  Call the doctor.”  And he replied, “I will, right after the holidays.”  Well, he never made it to the holidays.  He died of a massive heart attack on December 20.  He had no idea he was mortally ill.  He never would have left his kids behind if he had had any choice in the matter.  These are the things that went through the head of this particular notorious patient, over and over again, as I struggled to breathe.

So off I went, sirens and all.  I was too scared to be mortified.  Well, I was too scared to be really mortified.  I truly was more relieved than anything.

I suppose because I grew up with a world class hypochondriac who I never believed a word from, I always assume that I will not be taken seriously.  And, as a matter of fact, I often am not.  Part of it is, yes, due to managed care and the time constraints that limit practitioner revenue.  But I think it is far more because healthcare providers are jaded, bored and do not listen.  (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first in a series of MD’s who would ask me the same questions, few of which would be apropos and who would not listen to the answers anyway.  Then curtain discreetly opened enough for a young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with a raised eyebrow.  He was the most adorable thing I had seen in a long time and I nearly told him that.  Way to start an assessment by being defined as a dirty old lady.

He was cute, as I said, but mostly he just exuded niceness.  He was polite and sensitive but not smarmy.  He listened to my responses and then repeated them back to me in different words!!  Agghhh!! He got it!  When he came back with my lab results, which indicated I was in dire need of a blood transfusion, he looked so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the hospital had just opened to facilitate patient back-up.  Because oversight of this department was my job at another hospital, I knew what they were trying to do, but they were failing miserably.  Beds in our local hospitals are like gold.  When you have a high population of elderly and poor, as you do at the Jersey Shore, ER’s get backed up very, very quickly.  A hospital only has so many beds.  Most of them are dedicated, such as orthopedic, surgical, or mother/baby.  You can only place that kind of patient in that bed.  If your patient has a co-morbidity, such as a communicable disease or infection, they have to be isolated or put in a room with a patient who has the exact same diagnosis AND is the same gender.  So your bed possibility is reduced even further.  It is a constant juggling game.  Sometimes, the Gods smile and you can fit everyone together like a Chinese puzzle.  Other times, it is a nightmare of vast proportions with 20 seriously ill 80-plus year-olds languishing in the halls of the ER.  Within hours you have family members in your office, who you completely sympathize with, screaming at you to get their grandmother out of the ER corridor where she has been for 20 or more hours.  But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called it at my facility, it has other names, such as the Discharge Unit, which confuses the hell out of everyone because the patient is only being discharged from the ER to the hospital).  Anyway, the thought process is to get the patient completely assessed and prepped and tied up with a little bow so they simply have to be moved into the proper bed when it becomes available. The patient gets to wait in a comfortable bed in a nice little curtained cubicle.  Sounds like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .  The patient continues to suffer in limbo.   Patients are not discharged from the main hospital any faster, and that is where the backlog starts.  So patients aren’t stuck in the hallways anymore, but they do get stuck in these way stations.  They are uncomfortable and there is no privacy.  When you are already sick, you feel simply miserable.  Patience frays, family members lose their tempers.  Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.  Every conversation with every specialist who came to talk to me was overheard by the entire place.  The space assigned to each patient, divided by curtains, is approximately 8’ by 10’.  And I am being generous.  The guy in the cubicle next to me snored all night long, interspersed with shouting out obscenities.  Charming.   The little old lady in the cubicle on the other side of me was enduring the pain and confusion of dementia and she whimpered the whole time.  And periodically snorted violently.   I spent the night in contemplation and prayer.  I contemplated holding pillows over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual physical blows as long simmering issues exploded over their sick, elderly relatives.  Mom always did like you best.

So by the time I was sprung, everyone else had already been moved along with the indelible memory of when my last menstrual period was, if I was having difficulty urinating and if I was sexually active, among other delightful tidbits.  For, additionally, the subtext in every single solitary consult was Fat.  Did you know you were Fat?  How long have you been Fat?  Did you know being Fat can make you sick?  What are you doing to stop being Fat?  Fat, fat, fatty fat fatty.  Fat.  I am ready to stick my head in the oven, but I know if I ask where the kitchen is they will think it is because I am Fat.  I turn on the television power for the Internet and notice for the first time the screen is personalized.  Name: Marie Cooper, Room Number: 6007, Overweight.  WHAAAT?!?!  It’s even on the effing TV?!?!  Then I see this is the weather: OverCAST.  Oh. 

For a horrible minute, I thought even the Internet was on my Fat Case.

 

 

On the plus side, my room is spacious and bright.  I am getting great care from kind people (for the most part).  Mary Kate brings me flowers, and better still, brings me Madailein, who charms everyone by saying “Hi Da Da!” when my male tech walks in the door.  He did turn a trifle pale.  My dear friend Kathy from high school comes by.  Deacon Gail brings me Communion.  Christine comes by but I am at a test.  She comes the next day in a blizzard!!  I am surrounded by love, including virtually on Facebook with dozens of kind and encouraging thoughts.

I go for test after test, but I am still so short of breath it is almost incapacitating.  While talking to the pulmonologist, I realized that the litany of symptoms is a mirror of the transverse myelitis I had eight years ago. I suggest that to her and she happily agrees it is a possibility.  I started the IV steroids yesterday, too soon for any improvement, but fingers crossed.  On the other hand, I am feeling overwhelmed that the MS is causing such significant and crippling symptoms.  The prognosis will not be a good one.  People who have lung involvement end up on respirators.  I am so scared.

One of the people I encounter here is a jolly woman who brings me my dinner tray.  I am very down about the whole Fat thing and I say so.  She puts her hands on her hips indignantly.  “Honey, you are a lovely looking woman!  Beauty comes from the inside.  No one has a right to make you feel bad about yourself and you need to tell them that.  You need to say ‘That makes me feel bad. Don’t talk to me like that!”  I don’t care who it is!”  She shares some of the incredibly overwhelming circumstances she has struggled with and I am so touched by the generosity of her spirit.  I feel better simply from being exposed to her spontaneous kindheartedness.  It is such a gift to have someone like this placed in your path when you most need it.

And then there was the blizzard!!  A week after the Jersey Shore was devastated by Hurricane Sandy, we are hit with a pre-season blizzard.  People who have just gotten their power back after six days lose it again.  No one is prepared for eight inches of snow.

The view from my hospital room on Wednesday.  I know it says Thursday, but I am not operating on all four burners right now.   So that is a big FAT mistake, ok?!?

And the view this morning approximately 5:30:

Looks like that pesky demon may still be there.

Continuing to pray for strength and grace and praying the same for all of you, my wonderful virtual true friends.

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Speaking of Mothers

When I was a new nurse my first job was working in a long term care facility.  I love older people but much of the time my heart ached for my patients, who were almost all over 90 years old and had some degree of dementia.  If there could be said to be one recurring theme it was this: they all missed their mothers.

One of my patients was 107 years old.  This was in 1992, so she had been born in 1885.  Supposing her mother had been at least 20 when my patient was born, we are talking about a woman who had been born around 1865.  A woman born around the end of our Civil War was still being actively remembered and mourned in 1993.  I found that remarkable.  It really illustrated the power of the mother/child bond.

Many of my patients fretted their days away in terrible anxiety about missed appointments with their long deceased mothers.  Several dear ladies had the exact same scenario: their mother was waiting for them somewhere and they couldn’t find her.  They knew she would be worried and they were so upset!  We had many residents who had emigrated to America from Scotland, so they were always looking for the bus to Glasgow or Edinburgh to meet their mothers.  I would tell them I had called their mum to say they were going to be late, not to worry.  That never failed to calm them for a little while until they got lost in the past again.

Their very real pain often brought me to tears, but I could never see myself having the same longing.  I had no such sentimental feelings about my own mother, a difficult and self-centered woman who had wounded me deeply throughout my life.  On the rare occasions I did think of it, I all but snorted as I dismissed the idea of ever missing my mother.  Until now, more than a year after her death.

Just to put my mother in perspective, consider what my sister remarked when it was first suggested that I had multiple sclerosis.  “Wow” she said solemnly, with no hint of joking, “Mommy is going to be so jealous.”  And she was right.

My mother was in her element when illness was involved.  Her favorite thing was to actually have the illness, injury and/or operation herself.  But the next best, if there was an audience involved, was being at the patient’s elbow.  The audience was essential, because my mother had to be seen, if not as the Helpless Victim, then as the Selfless Handmaiden.

After I broke my shoulder in 2008 I had several surgeries to repair the damage.  Each time she and my father would drive over to ‘help’ me for a few days.  She brought boxes of food with her each time.  Not boxes of food to be prepared, boxes of food she had prepared.  While English was my mother’s first language, she primarily spoke Food.  It was all about food to her.  She cooked constantly and, I have to admit, very well.  When she and my father traveled you would hear not about what they had seen and done but what they had eaten.  Every outing involved eating, whether it was a trip to the hospital or the supermarket.  Columbia Presbyterian, where several of their physicians were based, has an actual restaurant in their facility on West 168^th Street and no visit to Wegman’s was complete without a stop in the food court.

Food was the way my mother communicated.  Sometimes the message was loud and clear.  My father loved dessert and they had it for every meal, I swear they even had dessert after breakfast.  She would make at least four different desserts.  These usually consisted of a pudding, a pie, cookies and some sort of cake.  Now mind you, it was just she and my father.  He has a real sweet tooth and would rub his hands together at the prospect of these culinary delights.  The ritual went something like this every single time I was there.

Kay: What do you want Jerry?

My father would pretend to gather all the desserts to him while he looked around in mock surprise at the rest of us. 

Jerry: What are the rest of you having?!?

My mother’s lips would get tight with annoyance.  He would make a big show of not being able to make up his mind.

Jerry (finally): I will have a little bit of each.

My mother would pile his plate with her usual gargantuan portions.  My father would lift the fork to his mouth…

Kay: {snort} You certainly don’t need that!

Every. Single. Time.

Sometimes the message was more mixed.  Such as after my surgeries.  She brought all this wonderful food (pot roast, several vegetables and side dishes, biscuits, macaroni and cheese, chicken salad, bread and, naturally, several desserts) and yet every word out of her mouth would be a criticism, even though the barb might be veiled.

If we were talking about cooking, she would give me little cooking tips, as though I was a new bride, not someone who had been running my own household for 35 years.  Sitting in the sun room, wrapped in bandages, an ice machine, a pain medicine pump and a haze of narcotics I could hear her in the kitchen, loudly sorting through the cabinets.

Kay (calling to me from the kitchen):  Marie, you are out of salt.

Me (yelling back): It’s in the cabinet next to the stove Ma.

Kay: Jerry, she’s out of salt.

Me, under my breath in the sunroom: No, it’s in the cabinet.

Jerry (drinking coffee in the dining room, clearly disinterested): Er…oh really?

Kay (more banging): Yes, she is completely out of salt.

Jerry:  Ohhh.

Me, murmuring in the sunroom: No, it’s in the cabinet.

Kay (bang, bang, bang): I know she doesn’t use a lot of salt…

Jerry:  Ohhh.

Me, calling out from the sunroom: It’s in the cabinet.

Kay (bang, slam, bang): She really could use more salt in her cooking…

Jerry: Ohhhh.

Me: IT’S IN THE &%#@ CABINET NEXT TO THE *&^%$#%  STOVE!!!!  (Of course I would never have really cursed at my mother, I just thought of it, and anyway this is a family blog).

When she so kindly serves lunch (and I mean that, I truly was grateful), I note cold liquid in the coffee mugs next to our plates.   Mystified, I just have to ask.

Me: Ummm, Ma, is this Coke in the coffee mugs?

Kay: Yes, because you have no glasses.

Now please note, this is a LOADED STATEMENT which I am able to translate now after decades of experience.  It doesn’t say I couldn’t find any glasses, it says you have no glasses.  It says not only do you not have any glasses, but you also do not keep salt handy.  It says you are a poorly equipped, disorganized slattern loser whose cooking leaves a lot to be desired.

Me (picturing the more than a dozen William Sonoma Picardie tumblers I have in the kitchen cabinet next to the fridge): But… (then I decide not to bother) this is lovely, I’ll bet the mug keeps the soda nice and cold.  What a treat it is to have my lunch served to me like this!

I smile broadly and take a bite of my chicken salad sandwich.

Kay: You must be so upset about all the weight you’ve gained.

By now my jaw aches from clenching my teeth.  My mother gives a slight, satisfied nod.  My father asks what is for dessert.  If they continue to come every day I am going to rip open my surgical site, pull out the rod holding the bones together and beat her to death with it.  Either that or I am going to fling myself in front of a truck.

But we both survive for her to torture me another day.  When she does die, it is from heart disease, not because I have killed her.  My sister and I continue to be incredulous.  Our mother was bigger than life.  Her every action was like a broad, color-soaked stroke across a canvas.  Even when you didn’t quite know what was going on, you knew something was going on.  It was usually something hurtful, but her creativity in lobbing one of her emotional hand grenades was a true art that I have almost come to grudgingly admire.  She drove me crazy.  But she was there.

However, it is still a shock when a thought pops up last week, unexpected and unbidden.  In the past two months I have been sicker, more scared, and feeling closer to my own mortality than ever before.  Sitting in bed the other day, a sense of foreboding hung over me so thickly that I am certain I do not have long to live.  My lip starts to quiver and I am astonished to find myself whispering, “I want my mother.”  The one thing I cannot have. 

“Ma,” I say with a sob, “I am so sorry.  Please pray for me.”  I close my eyes and just cry for a few minutes.  I cry for all we didn’t share, for all the hard feelings and hurtful words, I cry for not loving her the way she needed to be loved.   When I open my eyes, I can feel my panic starting to subside.  I am able to take a deep breath.  I know she is watching out for me and I will be ok, one way or another. 

Thanks, Ma.  

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Warm Memories

And I mean literally warm.

I have been really enjoying a newly found blog, Doing Hard Time in Shaker Heights. Cookie, the author, is smart, funny, snarky and has all-around good taste in any number of things. Similar to mine, natch. Only he has more energy and money to indulge in his good taste than I do. Currently he and his hubby are mired in a wonderful/nightmarish /heartbreaking/hilarious move from Ohio to Maryland. Nuff said. He’ll have blog fodder for decades.

At any rate, one recent adventure for them involved the purchase of gas fireplace logs, which rang in at over $1000 dollars. Not exactly chump change I was thinking…and all of a sudden, like in a corny movie where the flashback is preceded by spooky music and the screen swimming, I am transported back through time to my Aunt Lily and Uncle Jack’s front parlor. Being so sick right now has left me feeling very nostalgic. Alright, alright, I am always nostalgic! I am just a little extra emotional right now. Sheesh. Cut a girl a break.

I grew up in New York City, in the same apartment building as my Aunt Lily, who had been my grandmother’s best friend since childhood in Ireland. Aunt Lily had emigrated here after my grandma and subsequently married handsome police officer Jack Costello, a fellow émigré from the Emerald Isle. They had five sons. My Aunt Lily was stick thin and had a fluttery, nervous disposition (Olive Oyl always reminded me of her, but in the nicest way possible). I can only imagine what those boys, all grown men by the time I came along, must have put her through.

When the apartment next door to Lily and Jack became vacant in 1954, my newlywed parents moved in and promptly had me (not too promptly, though, there was a decent interval). I was a roly poly, cheerful little ball of adorableness and Aunt Lily did adore me. The feeling was mutual.

Walking through their front door was like stepping across the ocean into a traditional Irish home, circa 1895. Heavy carpets and drapes kept everything dark and quiet. The furniture was oversized and heavy as well, overstuffed and overflowing each room. The large entrance foyer had a great big oak table in the center, covered with a lace tablecloth. From the foyer one entered the dining room to the right and then the parlor (never the ‘living room’!) was in the front of the apartment. A horsehair suite filled the room and against one wall was a mantel and an electric fire, just like home (Ireland). When turned on, the ‘wood’ glowed as if burning cheerfully on the hearth. It gave off some warmth, but primarily was a visual link to so much that had been left behind in Roscommon, including parents, friends, siblings and, sometimes, even children.

For as an adult I found out (through a family member’s loose lips) that my Aunt Lily had had a little baby boy out of wedlock back in Ireland when she was a teenager. He was put up for adoption and she never saw him again. She was the kindest, most gentle soul. I cannot even imagine the pain she experienced going through an unplanned and scandalous pregnancy and then giving up her baby. If you have seen anything about the Magdalene Laundries of that time, it gives a hint of the horror a girl would face who had made a mistake. Or was taken advantage of, for there was no distinction made. It was always the girl’s fault and she was always the one who paid the price.

As it may have been for her, that electric fire in that dated parlor was a beacon of comfort for me. Being loved that much is irresistible and I was a constant visitor in their apartment. In my own house I could do no right, but here I could do no wrong, and every utterance was pronounced to be sheer brilliance. Including one of my first words. Aged about 18 months, trying to squeeze past my aunt sitting in a dining room chair, I kept saying “Coopen. Coopen peez.” They finally realized I was saying “Excuse me please” and the story was repeated endlessly as evidence of my genius. As opposed to evidence of me repeating something I had heard probably a million times. That is love.

We moved away from that oasis of affection to the back woods of New Jersey when I was twelve. I suppose my parents thought they were doing what was best for us, moving to the ‘country’. But it was like being punished. Where before I had been able to walk to school, friend’s houses, the corner store, the library, here there was nothing within walking distance but cornfields. Worst of all, there was no Aunt Lily. She had sobbed as she hugged me goodbye. But her love had left such an indelible impression that almost fifty years later the memory of those electric logs can stop me in my tracks. I can still feel the scratchy upholstery, hear the murmur of adult voices talking around me, remember the sense of safety as I snuggled up against her leg where I sat on the floor. Her hand stroked my hair and I watched the flickering lights in the fireplace.

 

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A Bump in the Road

I’ve been pretty sick for the past few weeks with lymphedema and cellulitis in my legs.  The pain is consuming and I haven’t been up to doing much, but to distract myself I have been watching old comedy shows, including Frasier, which I think is the wittiest, funniest show ever.  It never fails to make me laugh.

Here is one person’s compilation of her favorites:


 

I could probably post another hundred and still keep going.  It is just endlessly funny.

Ironically and unexpectedly, one episode made me cry instead.    Frasier is telling Roz how wonderful it is to be a parent.  He says:

“You don’t just love your children, you fall in love with them.  It’s that same rush, that same overwhelming desire to see them, to hold them, to bore other people to tears with every detail about them…”

That really hit a nerve.  That is the way I feel about being a mother to my children.  I don’t see them nearly as much as I’d like to and that makes me sad.  I miss them so much.   But I think of them all the time.  It is hard not to.  Not only are they in my heart and my memories, but their pictures are everywhere and I even have my son Ryan’s cat, who is curled up next to me on my pillows as I type this.

Miss Perri

So watching these old shows has been a little like life itself – lots of laughing and some crying too.

Fingers crossed the specialist appointment I have next week can help my legs and relieve this pain.

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