Accentuate the Positive

A week plus and I am feeling stronger.  It seems as though something unlatched a little and I can breathe a bit better.  PT and OT are definitely helping.  And I cannot say enough good things about the therapists themselves.  There is respect and caring for each patient as an individual.  They are very skilled but still earnest and encouraging.   My primary physical therapist laughs at my jokes, so he was an instant win.  Truly, almost everyone else working here is incredibly pleasant and helpful.

Because they are only people, there is the odd one or two lacking that balance of expertise and warmth.  I was sent for pulmonary rehab to see if it would be helpful.  Four of us were wheeled into a therapy room and pretty much ignored while the therapists discussed their plans.  Finally the Leader spun around and said, as if she was addressing imbeciles, “Ok, who remembers what we learned yesterday?”  Of course, ever the wise ass, I started to answer with a grin, “Not me!” (I hadn’t been there the day before).  Before I could get out two syllables, she said loudly, without even looking at me, “Except you Mrs. Cooper.”

Well hush my mouth.

She clearly found me irritating and, correspondingly, I couldn’t wait to get out of there.   I won’t be going back.  Besides the fact she is the only flat-out surly therapist I have encountered,  it really was redundant to what I was doing in PT.

I have to deal with many tiny aggravations every day.  There are big ones, too, including facing the fact that my health is failing.  But there are highlights that stand out from the past few days, things that seem minor but actually are huge in the scheme of things as far as making a difference goes.  They are small acts of kindness that provide proof of the goodness of most people.  Referring to them as small seems like a slight, although these ordinary things are often unnoticed or unseen.  But they carry so much power.

While I was in the first hospital the aide was in the room taking my vitals at about two in the morning.  A tech ambled by in the hall and she called out to him.  He backed up and was clearly pleased to see her.  “Hey girl!”  She went into the hall and I watched the two of them talking and laughing.  He was adorable and funny.  When he left, she came back and told me what a sweet guy he was.  I told her how cute he was.  A few minutes later, he strolled by again.  “Lamar!” she called, “My lady here thinks you are cute.”  He shot to attention and put on an exaggerated flirty performance.  He danced like Conan O’Brien and made up a rap song on the spot singing my praises.  The aide and I were in stitches and it really raised my spirits, he was so young and so sweet.  She chased him away and as he left he gave me the ‘call me’ sign. Too funny.

The first night I was here in rehab, I was literally too weak to even clean and dress myself.  My nurse’s aide bathed me in bed and changed the bed at the same time, totally matter of fact and kind.  I am used to feeling mortified and bereft when I am so helpless, but she was so sweet it felt like an ordinary, everyday thing.  And let me tell you, having someone one third of your age say “Ok, honey bunny!” as she finishes getting you dressed is in no way condescending.  It made my day.

My first roommate was very infirm and uncommunicative.  I suppose people thought because she didn’t say much, she was deaf.  Which she wasn’t.  But people yelled at her all day long.  “Mary (not her real name) eat!!”  “Mary swallow!!”  “Mary pick your head up!!”  “Mary, what is the matter with you?!?!”  “Mary, do you want a Xanax?!”

One night, the night shift nurse brought in her meds.  She quietly asked Mary how she was.  Mary replied, “Not good, I’m very nervous.”  Instead of screaming at her did she want a Xanax, this nurse sweetly said, “Well, we have something I can give you to make you feel better.  Would you like that?”  Mary said yes please.  The nurse returned and helped her with water.  And then she said the most incredible thing:  “Would you like me to sit with you until you feel better?”  Her demeanor seemed to have made all the difference, because Mary calmly said “No thank you” and drifted off to sleep.

And then there are the visits from my friends!  People who lead such incredibly busy lives, taking the time to come and sit with me, bringing me fruit and tea, my two favorites!  Sometimes my PT/OT schedule conflicts with visits, but that is the primary reason I’m here, so I have to do the therapy.  But people are even coming back if they have missed me!!  Incredible.  Our new interim Rector, who I had not even met, has visited me several times.  So generous with his time and prayers.

My granddaughter is two and obviously doesn’t understand why I am not home or what this place is.  But she was SO happy to see me when she came to visit!!  She hugged me and hugged me, saying “Grammy!!! Grammy!!!” over and over.  I can’t wait to get home and be with her again.

Can't wait to be home with her again!!

These ordinary people and ordinary actions are really what make a difference in our lives.

So there is a lot of hard stuff going on, but a lot of good to balance it.  Despite the hard stuff, I am a very lucky person.

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Rehab Abbey

All the testing in the hospital has determined that the muscle which helps my lungs breathe in and out is partially paralyzed.  The steroids are helping and my breathing has gotten a little easier, but I am still short of breath with exertion.  Since the problem has responded to the Solumedrol, right now the focus will be on building up my strength again.  During the week I will talk to the doctors about what we are going to do the next time this happens.

As usual, I have had gobs of amusing little episodes along the way.  I've illustrated my reactions as channeled by Maggie Smith as the Dowager Countess.

The respiratory therapist gives me my ventilation treatment and then decides he will do a little respiratory education.  “This treatment can really dry out your mouth.” he says.  I nod gravely to show I am a smart person and to express my profound comprehension.  “If that happens….”  I wait for his nugget of brilliance, “…drink a little water.”  Alrighty then.  Write it down.  Straight from the expert.  If your mouth feels dry, drink some water.

Then I am off to rehab.  Discharged from the acute hospital, I am transported in a wheelchair van by a very nice man to the rehab hospital.  By the time I get up to my room I am exhausted. I am brought a tray with dinner but I can barely eat it.  I just want to sleep.  A VERY PERKY nurse comes in to admit me.  She is firing questions at me a million miles an hour, so fast I can barely answer.  “Any skin breakdown?” she barks.  Before I can reply she whips down my drawers!!  She’s faster than my high school boyfriend.  Oh, why me Lord?!?

One of the aides at the rehab facility is an extremely tall, thin, striking looking African woman.  She is exactly what you would picture an African queen to look like.  Perfect posture and regal bearing.  Her voice is deep and melodious, although she does not speak often.  She does not giggle and laugh with the others, she has an innate elegance that I find fascinating.  One night she comes in to help me get into bed.  She swings my legs up and over effortlessly but then looks at the floor...  “This is powder spilled here.” She says quietly.  I am mortified and apologize profusely.  “Oh, no, it is fine, I am going to clean it up.”  She comes back and tells me how dangerous powder on a tile floor is.  It is very slippery.  I keep apologizing but she assures me she just wants to let me know to keep me safe.  “There is something even more dangerous than powder,” she says solemnly.  “Really?”  I am sure I have spilled this substance or will in the near future so I am hanging on her every word.  God knows I don’t want to be the one responsible for a freakish outbreak of slips and falls in Healthsouth.  “Yes.  It is…banana peels.”  I just stare at her.  I am thinking she is making a joke, but her fascinating face is perfectly straight.  “Banana peels are so dangerous.”  She acts out a little accident with her hands.  “You step on it with your foot and your foot will go flying out from underneath you.”  She has literally rendered me speechless.  “Wow.” I finally say.  Banana peels are dangerous.  Who knew?  She slides quietly away into the night, ever on the alert for banana peels.  Thank goodness.

 

The floor starts to quiet down and the lights are lowered.  My roommate is sound asleep.  I doze off, something that is usually really hard for me to do, and I am jerked back awake by a raucous burst of laughter.  Peering at the clock without my glasses, I can see it is in the neighborhood of 9 p.m.  I am irritated, but doze off again.  Am wakened once more by a shriek of laughter.  It is 9:45 p.m.  I doze again but wake up to a screech and more laughter.  It is 10:30 p.m.  Visiting hours are supposed to be over at 8.  Now I am pissed.  I ring the call bell and an adorable young nurse’s aide responds.  “Do you need something?” she whispers sweetly.  “That bunch over there is really disturbing me.” I reply.  She looks over at my 90-something roommate, who is out cold and silent in her dark side of the room.  “This bunch?” she asks, gesturing to no bunch what so ever.  I look at her for a second to see if she is pulling my leg.  But no, she appears to be completely serious.  “No, the bunch across the hall that is laughing and carrying on as we speak.”  “Oh,” she says with a kind smile, “they have been allowed to stay because it is a young person.”  Ahh.  A young person.  That must be the one I heard shriek “OWWWW, cut it out Mom it really fucking hurts I’m not kidding.”  Charming child.    It really sounds as though she needs the comfort and care of her mother. 

I had been told by the OT Director that I needed a lower bed.  After three days I still do not have one.  They don’t want me to go to the bathroom without an aide, but if I wait for someone to respond to the call bell, I won’t make it.  So I am told I will get a bedside commode.  Three days gone, I still do not have one.   I always check “tea” on my menu, but I usually get a cup of coffee and a tea bag.  The aide working this morning offers to get me a cup of hot water.  I am so grateful!!  I give her my ceramic cup (a gift from a loving, thoughtful friend) that I last used yesterday.  She returns ten minutes later with the dirty cup, with several rings of old tea, full of hot water.  It never occurred to me that I had to explain the cup, which had the remains of tea in it, needed to be washed.  I feel like crying.  How can I be upset when she was nice enough to get the hot water?  But why would she not wash out the cup?!?   

The family of my roommate, along with her aides, drives me crazy with their noise and thoughtlessness.  They have the television blasting constantly and have no consideration for any one besides themselves.  But she herself is a quiet little lady who minds her own business.  I think they drive her nuts too.  One the rare occasions she is alone, a physical therapist comes to pick her up for therapy.  “Hello Mary!!” he sings.  Her name is not Mary.  He adjusts her, gets her into her wheelchair, all the while calling her Mary.  Finally I say from my side of the curtain, “Her name is NOT Mary!”  A young Philippine man sticks his face around the curtain, studying his list with puzzlement.  “But she answered to Mary.”  He looks a little more and sees her on his list, her name slightly different from Mary.  I don’t say anything more.  I think not responding to her proper name was “Mary’s” little rebellion.

Yesterday afternoon, I called for my break through pain meds.  No one brings them.  I ring again after 45 minutes.  But by then it is time for my heavy duty med, so I decide to wait it out.  At ten I ask for the break through meds again.  At 10:30, I ask for them again.  At 11:10 I ask for them again.  At 11:20 the nurse brings me one tablet, half the dose, PINCHED BETWEEN HER BARE FINGERS.  That’s right.  No med cup, no identifying packaging, no gloves, just two fingers and a pill.  You know what?  I am simply too tired to fight with her.  While it is up there, it is not the absolutely worst thing she could do.  I do tell her that is just half the dose, I need the other pill.  And back she comes again with the bare pill in her bare hand.

Why do I have to be the cranky cow who complains?  Why can’t I be patient and kind?  This is why I hate people.  They make me feel bad about myself for hating them for being horrible.

Sigh.

On the plus side, I do like the staff a lot.  They appear concerned even when they don’t follow through right away.  The physical therapists seem really responsive and encouraging.  I am looking forward to working with them.  If I can get past all the other stuff.

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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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