Neil Diamond & The Lounge Lady

 

I woke up yesterday morning with tears running across my cheeks. I guess I shouldn’t have been surprised by that, times are hard around here right now. But I was. I didn’t wake up crying even when my own Mumma was dying. I didn’t wake up crying when I thought my type of Dysautonomia would progress until I could barely function. I didn’t wake up crying any of the times in my life when it might have been warranted. But yesterday, I did. I stumbled out to the kitchen that is so full of memories of times with my in-laws. I popped the kettle on and thought about how integral having a cuppa was to my relationship with my mother in law, Mary.

We didn’t always agree on things, she and I. But we did agree on the necessity of a good cuppa.

Mary has Parkinson’s Disease. She was diagnosed not long after I joined the family and I remember well how it rocked everyone. Mary and John are stoic and proud Englishfolk. It was clear over the years that they would deal with it their way. Our wider family, the social workers and district nurses, the network of support around them, watched on with a kind of admiration for their determination.  John doggedly problem solving his way through her caregiving, devising natty little devices for pill dispensing, modifying her walker, endlessly adjusting, adapting, and rearranging the chairs on the Titanic. And Mary herself, a consummate non complainer, tried hard to mitigate the ravages of Parkinson’s on her brain and in her body. Eventually, as seems to be the pattern for elderly couples where one is terribly sick, the caregiver gets increasingly rundown and their own health struggles set off a cascade of events. It has happened even to John and Mary, the indomitable two.

This week, I’ve been with Mary while John is in hospital down country.  She’s in a nursing home in their little regional town. He’s having rehab after spine surgery. Mary’s nursing home is so beautiful. The views across Buffalo Beach take my breath away. But I’ve noticed that the high needs residents don’t appreciate the view. That the ravages of age steal distance vision.

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These unfortunate few stare mostly into space, occasionally focusing on the person in front of them who is typically asking loudly and brightly a series of questions.  A nurse enters Mary’s room:

“HELLO MARY!  HOW ARE YOU TODAY?”
Mary jumps at the sound of the voice so close. Her rheumy eyes try to focus, her hand reaches towards the stimulus. The tremors are bad today and her body is almost bent double, contracting up and in on itself. Muscles tight and unwieldy.
She mumbles something but her words are indistinct.

“LET’S GO TO THE DINING ROOM SHALL WE? TIME FOR LUNCH!” the nurse shout-speaks chirpily.  Lunch will be in half an hour, but it takes that long to wheel and cajole everyone into position.  Mary’s eyes brighten momentarily, and very slowly, she licks her lips. She likes her food. I smile at my memory of this whippet thin woman, carefully  portioning out her own meals to half the size of everyone else’s at family dinners. She has thrown caution to the wind. Food is good. I think of the bucket of liquorice allsorts I sent up last weekend, now half gone. I’m glad she can still find enjoyment in something.

“HOW’S THAT CAST? SORE?  MARY, ARE YOU SORE?”
“I’m-alright-thankyou” she whispers, barely audible, but they are the first words I’ve heard today. I know it is habit, her responses to questions like this. Every time she moves, she winces. The cast is heavy and cumbersome against her constantly moving frame. Her frequent falls have resulted in a complication in her already broken shoulder. The bones beneath her socket joint hang loose and jut into her ribs under her arm.

“OK THEN! UP WE COME… ARE YOU READY TO STAND? I’LL JUST REACH AROUND AND HELP YOU UP …GOOD GIRL!  HERE WE GO…”  the nurse braces to lift our waif-like Mary. You’d be surprised how heavy a waif can be when you are lifting all their weight without assistance.

“OH DEAR, DOWN WE GO.  MARY?  ARE YOU WITH US? MARY!  HELLO MARY? BIG DEEP BREATHS, MARY!”
Mary had momentarily fainted. It happens most times she has to stand. Her eyes roll back in her head and she is a ragdoll. Quite different from her usual rigid bodied self. Now ensconced in the wheelchair the nurse takes her down the hall to the dining room. It is next to the Lounge, the communal area lined with other octogenarians, glumly sitting and waiting to be taken in for their hot lunch.

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Neil Diamond is on the telly. A gentleman fixes his tearful eyes in my direction. I have come to expect emotion in this place, I wonder if maybe Neil’s crooning is making him sad.
“Have you seen my wife?” he asks me, his voice trembles slightly as though he knows the answer will be bad. I remember being here when his wife passed away. I pat his hand. “No, I haven’t, I’m sorry. I am sure you will see her soon” I feel guilty as I say it. But to tell him the truth again and watch the grief anew. I just can’t do that (I’ve seen the nurses tell him many times and he is always so distraught. “Was I there for her?” “Why didn’t anyone tell me?” “Where did they take her?”  “Oh no… no…”  he’d keen, his hangs wringing in his lap and the confusion and distress furrowing his age spotted brow).
No. It’s too unfair.
Within minutes he has forgotten again. His face is blank.  I’m glad I didn’t tell him.

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Mary has nodded off. I let Neil’s music transport me back to happier situations. I am toe tapping and humming. I see the slippered foot of the man in the chair beside keeping the beat. He grips my hand.  Meanwhile, Neil drawls and gyrates in his sequin jacket “I’M ALIIIIVE”! The irony is not lost on me.
“I would have been a jockey you know!” say the earnest man. His eyes are twinkling, one of his pupils is blown. I wonder if he did that falling off a horse. “I could do things with horses other people couldn’t do.  But no. No… encouragement…” he sighs, suddenly dejected.
“Oh do shut up!” shouts the lady just past him. “I’ll kick you in the butt one of these days!”
“You shut up, you fat slob” says the woman beyond her. “Take no notice, Love” she says pointedly to the man beside me, rolling her eyes openly at the upstart.  Many of the elderly could care less about politeness. They’ve run out of time for niceties. They just say it like they see it. This Lounge can be a brutal place.

A nurse aide moves Mary into position at her dining table, deftly swinging a giant bib across the front of her. As she does it up, she tells me that Mary helped her children learn to read at the school, some thirty odd years ago.  She was a teacher aide at Mercury Bay Area School. Suddenly Mary is animated. She says the name of the nurse aide’s kids. “That’s right, Mary!” she smiles and then, turns to me, “-sharp as a tack! There’s a lot of people who love this lady”. She pats her gently on the shoulder.  I nod. Kiss Mary on the forehead and say my goodbyes.  I’m sad. We love this lady too. It stings a bit that she can remember those kids, but she has forgotten who her own grandchildren are. The synapses that connect that information to her conscious mind have been stolen by Parkinson’s Dementia. She’s had only one thing to say to our girl Bee this week. That she never did like the colour of Bee’s hair. She hasn’t been able to notice that Zed is even here. These kids who come with me every day to see their Nanna. These kids who have never complained about the grim realities of spending time here with her.  They love her too. Regardless. Gosh I am proud of them. They hug her and kiss her goodbye and she clings to them. I think she knows at some level, some basic biological level, that they belong to her. I comfort them with the facts that her brain misfires sometimes. Tell them, for her, that she loves them.

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I’ll be back tomorrow. She won’t know me then either. I’ll be just another friendly face among the many attending to her. My voice will be loud and bright like theirs; do we do it to dispel the despair of it all? She’ll look at me with confusion. She might shout at me like yesterday, or stretch her face into a semblance of her beautiful smile. She might hold my hand, or demand I help her go to the toilet. She might just be drifting, somewhere between Life and the After, talking indecipherably with her long passed sister, long red braids twisting around her youthful hands, skipping along a street somewhere back in England. I hope that she feels loved, wherever her mind has gone. That the warmth of my hand transmits all the humanity of my heart for this frail, vulnerable lady.

I guess the tears are okay. I guess they are just a part of the lifelong process of accepting mortality. Someday, someone might have tears about me. Mary once told me that she thinks of this mortal coil like a fixed sized plane. As babies get born, all our souls get kind of crowded here. Sometimes, other people have to get off, making way for new life. She said it made her feel better thinking of it that way.

Everybody has their time and then one day, they move over. That’s just the way of it.   Take it away Neil:

…everyday

There’s a brand new baby born
And every way
There’s enough to keep you warm
And it’s okay
And I’m glad to say
That I’m alive

 

Medicine’s Missing Link

DoctorandtheDollI’m reading a fascinating book at the moment.  I’ll review it on here once I have finished it, but for now, I just want to write about an issues it has already raised for me about our medical system as it is presently.
The book is written by a doctor.  It’s about being a doctor in the States and the ways things have changed since he started being a doctor.  It’s a similar story to what I’ve heard from friends here, who are specialists and GPs, too.  Medicine isn’t what it was.

What ever happened to that old fashioned community stalwart:
‘your’ local doctor?

I used to have a GP, but then I moved far away from her rooms, had babies, moved on with life. I started going to the super clinic close to our house.  It was convenient to take the kids there, cheaper by far and had on-site x-ray and various clinics, as well as a pharmacy.  Every time we went, we’d see a different doctor.  Half of our allocated fifteen minutes would be spent with the GP trying to decipher what the last doctor had recorded in the notes.  So I would tell them why I was there, what we talked about the last time, where it was at, as I recalled it.  If the kids needed to be examined, or a script written, it would happen next.  But more often than not, the worries that had taken me in to the GP were met with “she/he seems happy, it’s probably nothing”.  I would leave, no less worried and even more annoyed for the time spent incubating germs in the waiting rooms.

As seems to be the story shared in mother’s groups across the country, sometimes, at the big clinics, things get missed.  My ‘happy’ daughter was actually suffering from severe ear infections.  Without treatment, scar tissue formed across her ear canal rendering her deaf on one side. I had frustratingly visited the clinic with her several times, enduring that patronising glance (some) doctors give mothers.  Each time, asking about her ears. Each time, they looked in her ears, smiled at her and said she was fine.  When her speech began to change, we sought alternative help. An ear nurse specialist took a look with a microscopic camera, tested her hearing and explained what was going on.  If the doctors had ‘known’ my girl, they would have recognised that a smile didn’t mean she was happy. It meant she was being polite to the grinning doctor.  If they had known me, they would have understood that I wasn’t being a neurotic mother.

We have since moved again.  Enter, a new GP, close to our home but not part of a clinic franchise.  She is getting to know us and learning our back story.  It’s a relief to have a relationship with a GP again, someone to take care of all the little bits and pieces that would otherwise be missed.  The niggles, the ‘normal’ wellness issues of a family.  It’s great to know that she is receiving all the correspondence from my specialists, that she is being copied in on test results, referrals, discharge summaries.   For the first time since I got sick, I am less worried about keeping track of all my own records, I know that she is onto it all, taking primary care of my health, in the old fashioned way.

When did it all change? It used to be this way!  Everyone had ‘their doctor’, who if necessary, would communicate with anyone who needed more information.  Their doctor would be the one to refer them to specialists or hospital if needed, the communication channels would be clear, simple, unclouded.  The only person deciphering their own notes was them. The only person other professionals needed to contact, was them.  When we super-sized community medicine into super clinics, we lost something so important.  To ‘know’ a patient is to be able to make better assessments of their situation. Perhaps, knowing a patient also helps doctors to care for their patients, to see them as more than another fifteen minute walking infection risk in a busy, busy day.

In the book I am reading, Brendan Reilly, an Internal Medicine specialist, expands on the issue from the point of view of the ‘hospitalist’ doctor;
“We’re caught in the middle of an

It’s a frustration patients all over the world, feel.  Dysautonomia can affect all organ systems controlled by the Autonomic Nervous System.  We don’t fall neatly into any one sub-specialty.  Depending on the presentation of our autonomic dysfunction, we will have any combination of various specialists.  Neurologists, Opthalmologists, Cardiologists, Endocrinologists, Gastroenterologists, Urologists.  Coordinating all of these in the past, would have been your local doctor.  Your General Practitioner.  Here in New Zealand, depending on your district health board, (and it seems on your particular pathway into the health system) you might have been appointed a General Physician.  General Physicians are part of the Internal General Medicine team of the hospital.  They see long term patients who require care from more than one sub-speciality.  The are the problem solvers, the diagnosticians. They should trouble shoot your symptoms, find the cause of your ills, devise a plan for your care and coordinate with your specialists and GP.  If you are with a clinic, however, your letters may never get in front of the same person. Your care, as a result, may well be compromised.

I don’t know what the solution is.  Medicine is making big advances all the time, things are changing; the way that care is delivered is being re-designed all the time for better cost effectiveness, among other objectives.  But are these changes helping the increasing numbers of people with multiple co-morbidities, long term systemic chronic illnesses?   The reason I returned to the pricier option of a local GP, was because I needed to know that the communication channels were clear and straightforward for all involved in my care.  It was a good move.  It’s been, not so much back to the future, as forwards to the past. And while it is still possible to have a local doctor, in rooms one block from my house, I’ll be staying with her. She’ll be ‘knowing’ me and my family.

I found this quote when I was looking for the classic Norman Rockwell image I used for this post.  It comes from the Penn Medicine Newsletter:

doctoranddollsallysapega

I’m curious:
Do you have a local GP?
  Why or why not?
Do you see the same one every time?
Are you happy with how that works out for your overall care?

The Lament for the Numb

Listen to Dave Dobbyn singing his Lament for the Numb. 

Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.
Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.

Life is so busy.  I know. It’s nicer, warmer and safer to cocoon ourselves into the business of each day and shelve the big issues.  Maybe you’ve been hurt, or you are over it all.  Maybe there is nothing left after you’ve dealt with your day. But if you could pause and think about it, what are the things beyond your daily life that you care about? Deeply? What are the things that worry at the back of your mind, the things you wish you were taking some action about?

I care about kids abandoned to poverty, poor choices and the cycle of violence.  Kids who don’t even get breakfast before they start the school day. I have seen the fallout from that first hand when I was teaching in low decile schools, it worries me for the future of our country.

I care about the 27 million human souls trafficked as slaves, their voices screaming into the void, unheard.  I can’t even comprehend the enormity of what a number like that means in human terms.  Twenty seven million individuals, as important as you and me.  

 

She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his "wife." Forced marriage and its connection to enslavement remain poorly understood.  Source: freetheslaves.net
She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his “wife.” Forced marriage and its connection to enslavement remain poorly understood. Source: freetheslaves.net

I care about educating girls about how powerful and significant they are for our future.  In some countries girls have no voice and no choice, but even here in our pocket of peace, where we have no wars, no corruption, no excuse; we are not doing nearly enough to empower young women who do have choice. Why do we continue to diminish and reduce them to a two dimensional image of value, until poor self esteem boxes them into small lives?

 

Source: a girlsrighttodream.tumblr.com
Source: a girlsrightto dream.tumblr.com

Why can’t we all be kinder?  I care about the numbers of people ending their suffering through suicide.  The immeasurable sadness left in their wake. I want to gather all the sad, suffering people up into an enormous embrace.  Why can’t we look out for each other better?  What stops us from helping people who are in pain? Why don’t we ask… are you okay?

 

source: herphany.tumblr.com
source: herphany.tumblr.com

And I care about all the people suffering from poor health.  It’s everywhere you look, hideous epidemics like cancer. Such an insidious enemy, robbing people of their loved ones. I care about finding a cure. If we had a cure, I’d still have my beautiful mum.

And I care about the millions of people like me, suffering from ailments that are poorly understood by Medical Science.  Chronic illnesses are long term, vitality sapping problems without adequate research funding to create studies that will improve our quality of life. For every patient who languishes in a health system that cannot help, bowled over by their diagnosis, there is a family, suffering alongside.  There are kids, husbands, siblings, grandparents and dear friends, required to take on more than they can.  There are sacrifices and prices to be paid that will be felt long after the patient has gone.

 

Source. amf.com.au
Source. amf.com.au

I feel passionately about these things. What are your deep concerns in our world?
Pia, one of the fellow students of my blogging course, is running something called a link-up.  She sent out the call for us to write about something we care about, providing links for taking action.  The power of social media is bigger than just making connections.  So I resolved to write this post about that something I really care about, with some useful information and ways you can help, if you want to.

But I care about a lot of things.  And my magic wand is broken.

So, here are the ways that I am doing what I can about the stuff I care about.   Until that wand is fixed, doing something is better than doing nothing.  If you want to join me, here is some information and links.

To donate to or provide sponsorship to the wonderful programme that is helping impoverished kiwi kids to get breakfast and basic clothing, have a look at KidsCan.

To learn more about the horrific realities of contemporary slavery, watch this TED talk, please watch all the way until you see the images of what a reunion after liberation from slavery really looks like, look at those beautiful mother faces, I dare you.
To
 
find organisations working to help those caught in the human trafficking trade, see this directory.

For a website aimed at empowering young women in first world countries, check out this phenomenal resource:  AMightyGirl

To help raise money for Ovarian Cancer Research, you could host a “morning teal”, you can go here to find out more.  Or to join the community of people in New Zealand with Familial cancers related to the BRCA mutations, go here.

To donate to the only Australasian research that is currently happening in the field of Dysautonomia, go to my friend Michelle’s fundraising page.  Help me to do my bit for Dysautonomia awareness and research.  We are a small number of patients, but each one of us is a precious human being who is desperate for more answers.  Maybe your bit will help?


And I care about YOU with all my heart.  You have a battle on your hands, no matter who you are, no matter what your life’s story is.  You are human.  It is a pretty raw state, it hurts sometimes.  Sometimes you feel so numb. Even if you can’t see the hands reaching for you, they are there.  Take action. You can grab hold of a hand, or even just let one grab yours instead of pulling away.  Connection is what keeps us all together.  If you have been feeling like leaving, please don’t.  Grab hold of a hand, or ring for help, set the wheels in motion.   Look here, or call these good people, or talk to the people you love.

And if you are reading my blog because you too suffer from a chronic illness, here are some things you can do to practise some self-care  I have them on good authority, my Health Psychologist gave me a chapter to read for homework last week.  It’s called “A Caring Hand” from this book; The Reality Slap by Russ Harris.  My Psych is a good ‘un, so I am passing on these nuggets to you.  I wish it were my own, real caring hand that could rest on your shoulder today… do know that my heart is with your heart.

Thanks Pia, for your wonderful call to action.  

The Impatient Patient

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There is a lot of frustration happening in the world of Dysautonomia, in fact, in the worlds of all chronically ill patients.
For some, diagnosis is fast and a cause is identified, treatment begins.  Sometimes treatment is successful.
For others, for so many… diagnosis takes years.  People are often mis-diagnosed first with anxiety, depression, hysteria and all manner of strange conditions.  Until someone starts to put the puzzle together, piece by agonising piece.  Someone recognising that the pattern of symptoms is autonomic is usually the start of that process.  Sometimes, that someone is the patient themselves, forced into a position of applying their non-medical brain to medical journals.  It is a scary and difficult job, sifting through medical literature, looking for words you recognise, learning as you go.  But you have to.  Who else will take the time?  To whom else does your life matter enough that the research is worthwhile?

I don’t know why some doctors are excellent and others are not.  But I know what the experience of a good doctor is from a patient’s point of view.  A good doctor is prepared to listen.  They will ask you good, probing questions.  They are thorough, respectful and give you time to respond.  That’s important when your brain is foggy and your words don’t always step out in the correct order.  It requires patience toward the patient. I guess that is hard when the schedule is busy and they’ve been listening all day.  But a good doctor, even after years of practise, can still say “What if?” and “I don’t know, let me see what I can find out…”.  A good doctor is prepared to engage in the conversation with an open mind.

I’m sad today.  Sad because since I’ve been working on this blog, I have a much more personal realisation about the affect of Dysautonomia on the lives of people who have reached out to me.  Even here in New Zealand.  I have had messages from people, more than ever before.  Can you help me?  My doctor won’t help me.  I need information.  I need recognition.  I need support.  They are asking:
How can I make my doctors care about me?  Take notice? I am declining. My life matters.  Why don’t they care?

Like them, I too, am locked in a frustrating dance with a doctor who doesn’t seem to care. He is my main specialist and has taken over my case from someone who cared a lot. The contrast is painful.  When I am in his consulting room I can see his attention drift off, his thoughts elsewhere.  He often begins by saying things like “I see you have had an admission, but you are quite well now?”  The question mark is an afterthought.  I am supposed to say, ‘yes’ and go through the motions of the rest of the consultation so he can tick his boxes.  But I am not ‘quite well’.  My daily life difficulties are increasing all the time.  We are accommodating the changes the best way we can.  Navigating the path of progressive illness without guidance, lit only by the flame of our own frustration.  He has decided the best approach with me, is to “observe the progression“.  And because he has decided this, I must oblige.  I am powerless to suggest, enquire, wonder, report, relay, present, offer… anything further.  Because the doctor has decided.

But, Doctor.  This life I have.  I love it, I need it. Even broken and interrupted by illness, I want to be here.
It is valuable to me, Doctor, in your armchair.

I choose to fight for my family, for the love that pulses out past my illness and into every corner of their lives.  I choose to fight for the autonomic nerves that have not yet been damaged by this disease.  The longer you leave it, merely observing my progression, treating the symptoms, waiting, watching; the more my ganglia are picked off, one by one. 

And there it goes. Another day.  No other dollar.  I am not working, I am not teaching.  My work to do was worthy, wonderful work.   I had much to contribute, I like to believe I still will. 

And there.  Another day. My children.  Growing older, stepping out beyond yesterday and into a tomorrow I need to be part of. 

Another day; my husband.  Carrying burdens too heavy even for his broad shoulders.  Pushing on.  I want to help him more, be there for him, too. 

This life is valuable, doctor.  Do you see me? I am your impatient patient.  The one who would rather not be a patient at all.

Should you come into my home and observe my life, not just my disease progression, you might try to take some action.  You might begin to listen.  You might think us worthy of that much. You’d be welcome. 
Doctor, get up from that chair. Get down from that high horse.

Another day came around.
Another day with no more answers,
no direction, no help.

And another day came around,
and another patient wrote to me.
Can you help me? 
Can you help me find a pathway through?

Can you make them see,
Me?

Another day and I am counting
More ganglionic death within my frame.
Less function, more frustration.
And you, Doctor, barely know my name.

Another day, but are you counting?
do you record the way I do?
do you read the publications
scour the boards to read the news?

In another country,
I might be getting something done.
I might be making a kind of progress,
I might be a …’lucky’ one.

In another percentage band,
my life might take different course.
In another doctors hands,
my life might matter

as much as
yours.