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

 

In Mortal Danger

We are all in mortal danger.  No exemptions, no alternatives, it doesn’t matter if you are sick or well, at some point it will happen to each one of us. Mortality is part of vitality; it’s just the part we studiously choose to ignore.

I’ve just put down a book that should be compulsory reading for every adult. And not just once, we should all re-read it every few years.  Have you read “Being Mortal” by Atul Gawande?  He is what is known as a physician-writer. It’s an entire genre!  Last year, I wrote briefly about something discussed in another physician writer’s book:  ‘One Doctor’. Brendan Reilly is another brilliant physician-writer who tackles the subject of the confounding American Medical System. Oh my, that was a great read too, so timely and thought provoking. Where are we going with our own medical system? I sincerely hope not to the same places… but there are some similarities.  Brendan Reilly’s book is a brilliant companion to Gawande’s ‘Being Mortal’. I think those two authors would have great conversations!

Somehow seems unfair that people gifted in medical ‘brainage’* can also be gifted writers, I suppose it follows that Gawande and Reilly are good at sports and incredibly good looking too (!) but I haven’t seen them so I can’t confirm. Some people just get it all!

Atul (I feel we are on a first-name-basis now I have read the book) writes about a very uncomfortable subject.  I’ve written about it here, but my words were inadequate in comparison to his excellent (and detailed) discussion. It’s difficult to convey in a blog post a message he has delivered so beautifully in his book. I love his writing style; fluid, easy.  He’s a compelling storyteller.  It’s through the stories in this book that he gets us to honestly look at the elephant in the room.  We are mortal. We never want to look at that, we never want to engage with what it might mean about our lives. Somehow, our brains slip away from the realities all the time. But Atul forces us to look, to think, to examine what our own wishes are for the inevitable. Not just the inevitability of death, but of old age. His book is a crucially important guide to the subject of both and an important criticism of the directions of gerontology in traditional western medicine.

picture of the cover of Atul Gawande's book 'Being Mortal'
Atul Gawande :: Being Mortal

Have you ever heard parents ask children to promise not to put them in a home in their old age? Or seen people refuse to use of mobility aides, or even prolong the lives of their loved ones with unnecessary medical interventions for their own reasons? I have often. We see and hear examples of people grappling with issues around mortality every day, but we don’t really examine how it could be better. It is very difficult for any family to make decisions about end-of-life issues when they are emotionally distraught, far better to engage with them long before the inevitable, to remove the burden of big decisions. We can all do this by making our wishes clearly known. And I don’t just mean “if I am brain dead turn off the machine”. There are a lot of statistically more likely scenarios to consider. Atul knows this, because he’s been in that position with his own Father, as well as countless patients. I know this, because I was with my Mum when she was going through her final days.

The older we get, the more often mortality will come and slap us in the face, that of others and eventually our own. But have we considered the type of death we might prefer if the choice were ours? Have you ever heard of Advance Directives? Even more importantly, have you discussed the curliest of questions with your family?  Atul provides us with four thought provoking questions to guide our discussions. I won’t tell you what they are, because I want you to read that book.

When my Mum was about two weeks from her death, she was distressingly uncomfortable. An enormous tumour had enveloped her abdomen and was pressing on her diaphragm. She didn’t want morphine, but eventually asked for it; the pain was too extreme. Hospice care was compassionate and careful but also generous; they helped her with pain and anxiety, they talked with us, and with her. Food was still being brought to her, and desperate for sensation, taste, life, she would try to eat. “I’d love x, y or z” she would say wistfully “…or just something… juicy”. We would race to meet every whim. But there was nowhere for the food to go, the tumour had encompassed her stomach. And her gag reflex had stopped. She knew eating was pointless, she knew she had to vomit or endure more pain and nausea. She was too weak to help herself out of the predicament, so she asked me if I could stick my fingers down her throat to help her relieve the situation. I would have done anything she asked me to do. My precious, frail Mumma. I helped her to vomit in the way she had helped me do countless things when I was little. With love.

Soon, she chose to not eat anymore. The hospice nurse, marvelling in a later conversation with me, remarked on my mother’s tenacity for life. She mused, just as an aside, that patients who continue to drink water last longer than those who don’t.  It is obvious really, isn’t it?  But when you’re there in that room, watching your loved one facing death, deep in the desert, it doesn’t seem so.  It was revelatory that death by an aggressive cancer would not be swift, but a long and painful process. That death would eventually be by starvation, or dehydration. It seemed so grotesquely cruel.

Mum’s final days passed in the torturous way they do at the sharp end. She drifted in and out of fitful sleep, her breathing ragged. She could barely talk but would turn her eyes to the straw in her cup and when we held it to her lips, she would drink like she was traversing a desert with no reprieve. We swabbed her mouth out with special sponges when she could no longer produce saliva. We watched her suffer, limp with inability to do anything that could really help.

One morning, awake and waiting for the next shot of pain relief, she croaked

“-tell me why I can’t just die?”

I thought about hwat the nurse had said. But I was afraid, because I knew my Mum. I knew her steely determined side, I knew if she wanted to go, she would make it happen. I looked into her face, taut with pain.

I confess that watching her suffer was the most agonising experience of my life.

I confess I hoped that there might be an end to the horror, for her and for me. And I whispered:
“Mum, the nurse said it’s not possible to live without water.”

For a long time, I felt guilt about telling her that. But her eyes shone up at me. She couldn’t talk. But she refused any more water. By the next day, she had drifted off into a coma. That was her only way out. A desperate, dry, gasping and rasping before a quiet coma. And I will forever feel responsible for my part in how it played out.  Did it save her from more suffering? Possibly. Did she want to go? Absolutely. We were extending her suffering with all the love our hearts and hands could muster. “Another sip Mum… come on, water is so good for you”.

I wish this book had existed when my Mum was sick.  I wish her faith in God’s healing had left some room for us to talk about such things. I wish that she could have had less chemo, and more good days.  But of course, more than all of that I just wish she was still here.  It is a regret that I have that I had pushed her to fight, to try, to hang in there, all because my own fears about life without her were so all-encompassing.

Atul Gawande’s book would have been useful back then, but it is still incredibly useful right now. Mum’s death was my first proper shock into the reality that death finds us all, but being sick for six years forced me to think about it even more. We are ageing, and so are our remaining parents. There are things to consider, things to discuss. I think about my own children and know that I never want them to be in the position of feeling responsible, or guilty, for any aspect of my wishes. I want to take that burden off their shoulders.

Have you had the discussion?

PLEASE read this book, there is far more to it than you might think. It is uplifting, not depressing. It could change your life, and your loved one’s lives for the better.  One thing I know for sure, we are all in mortal danger, and apathy could steal from you the things that will matter the most to you.

It’s time to talk.

 

*I know, ‘brainage’ isn’t a word, but it should be.

The Grammar of my Fears

Note: the lyrics in this post are a collection of lines from three sources.  I have combined them in my own order.  The original writers of all the songs are Emily Saliers (of the Indigo Girls), Rob Hyman, Eric Bazilian (of the Hooters) and John Denver.

I drove across some of the most beautiful countryside in the North Island today. Listening to the music of my young years.  The Hooters and The Indigo Girls might be odd CD-stack neighbours, but they harmonized with John Denver to give me a soundtrack that melted the miles into memories of my past.  I love them all fiercely and sang loud, alone in the closeted interior of the car. Green fields and cows whizzed by my windows as I lost myself in lyrics I had forgotten that I remember.  Holding the notes for just that bit longer than the song called for; holding on to the ephemeral essence of earlier times.

Where do the children go?  Between the bright night and darkest days?
If I had a song that I could sing for you,
I’d sing a song to make you feel this way

And if you break down, I will remind you, Ooh of what you were yesterday
Oh mercy, what I won’t give.  To have the things that mean the most,
not mean the things I miss…

All you zombies, show your faces… I know you’re out there
All you people in the streets… I see you

as the bombshells of my daily fears explode,
I try to trace them to my youth

I squeeze the sky out but there’s not a star appears;
begin my studies with this paper and this pencil

and I’m working through the grammar of my fears…

My road trip today was to visit the hubster’s dad.  He and his wife are over eighty, and in the cruel nature of old age, have been weathering one health crisis after another. This time, it was John’s turn to be rushed to hospital.  The nature of his emergency sent him south, so he and my mother-in-law are in different hospitals, hours away from one another, and hours away from us. I make mental notes to myself to move nearer to my children if I make it to my eighties. We’re so far from them. It makes it hard to be the moral support they need, let alone the physical help. So today, I was visiting John.  He’s the sole carer of Mary, who has Parkinson’s Disease. Between them, they have been in hospital more than out of hospital over the last year, and it has been a very hard road. My heart goes out to them, so far from one another. Like teenagers, they get told off for hogging the hospital phones. He wants to know how her dinner was last night. She wants to know if his feet are warm. She wakes up alone and panics, wondering where she is and why.  He wakes up alone and knows there is a long rehabilitation road ahead if he is to bring her home again. Mid conversation with me, he sucks in a quick intake of air, trying to hold back the tears. His eyes lock onto mine while he tries to wrestle control over his emotions. The tears come anyway. It’s not kind, old age. Life is always too short, even when you’ve been alive a long time.

It makes me thoughtful. The whole way home I am ruminating over that line from an old song.  About the things that mean the most, not being the things I miss. I think about how much I have learned in all these years of being alive. And how so many of those things are unproductive, unhelpful, unkind to me. I am unlearning all the things that have kept me from happiness. All the insecurities and fear of failure, all the horrors that because things have happened before they will again. I think about all these fears that have shackled me. And about how I am breaking free of them.  I’m examining the context and syntax of every one. And scratching my pencil through ingrained thoughts that I have taken for truths. Thoughts that don’t stand up to scrutiny.  Every thought that stops me from enjoying my health and freedom. How ridiculous they seem, laid out in front of me. Relics of my childhood, ready for an edit.  I don’t know a better way to live my best life than to do this.  Working through the grammar of my fears.

Maybe you have fears like this too?

When I was really sick, I promised myself that I would not take health for granted if I ever got better. I promised myself I would live a life not bound by my fears. I would seek opportunities and take them.  I would find the areas that filled me with insecurity, and tackle them. Look for experiences that fill me with joy and collect them. So that is what I have been doing. Last Sunday, I did a lingerie shoot.   Out on a windy grassy, knoll, in full view of the public utilising the walking track that skirted the location; I took off my clothes and posed for photos in my smalls. It was liberating! I think if I can do that, I can do almost anything!

PIcture from my lingerie shoot of my legs and the statement "I am unlearning all the thoughts that have kept me from happiness. One faulty line at a time" Rachel F Cox

I’m going to leave you with a verse from a beautiful song. Think about those young years… who you were… who you want to be. Maybe there’s some editing to your interior monologue that you want to do, too.

…when we last talked we were lying on our backs,
looking up at the sky through the ceiling
I used to lie like that alone out on the driveway
trying to read the Greek upon the stars, the alphabet of feeling
Oh I knew back then, it was a calling that said: if joy then pain.
The sound of the voice these years later
is
still the same.
-Emily Saliers