Author: Unravelled

Yesterday I met a lady with dementia. The referral was for ‘escalating behaviours and aggression’. Staff have been pushed and shoved and yelled at, and are having trouble helping her with personal care.

I knocked at the door and asked permission to enter.

She was in her chair, in the dark, in a dressing gown.

We sat side by side in her room which was empty except for a bed, a chair, and a few scattered photos. Her wardrobe door was open, and it was empty. She had no clothes.

According to her, she is 92 and 1/4 (we counted the months together on our fingers).

I asked about the photos and spent over an hour listening to her tell me her life story. She is incredibly sad that she was an only child, so she begged her husbend for two children as a condition of marriage.

She feels lucky she had twins, and named them after their grandparents.

She loves music and dancing, and acting in plays. Her favourite musical is Mary Poppins, and her final role was as the chimney sweep. She animatedly told me this story complete with actions for cleaning a chimney, and were were both in stitches laughing about it.

She worked hard all her life as a cleaner, and saved all her money. She was paid in cash and wanted to buy a house, so she bundled up the money for a mortage and carried it in her arms to “The Civic Permanent” (a now obsolete Building Society).

She told me she is sad and doesn’t want to live any more because she went to hospital, the ‘government’ sold her house and took all her money and put her in a home, and her children don’t visit her.

Some people are quick to prescribe medication for ‘behaviours’ of dementia. She does not need medicine, she needs so much more than that, and yet so little.

My prescribing was non-pharmalogical.

1. Buy a handbag and purse from an op shop and put a few $5 notes and put some coins in it. Let her feel like she has some control and ownership over her money.
2. Buy her some clothes.
3. Play “Mary Poppins” on the big screen in the lounge. Sing with her when she sings, dance with her when she dances.
4. Spend time listening to her, find out what other musical and plays she likes, then play them and encourage her to watch them.
5. Referral to a psychogeriatric nurse practitioner, who will know so much more than me and will help the staff with strategies to engage and de-escalate her behaviour.

I don’t have all the answers, but during my time with her there was not an ounce of aggression. We laughed, we talked, we touched. She kissed me on the cheek when I said goodbye.

It was the highlight of the week.

It can take a lot of soul searching to figure out whether we even made the slightest bit of difference.

As a palliative care specialist, it’s my job to try to relieve pain and suffering.

But pain is not always physical. And how can we relieve more than 70 years of suffering in just one consult?
There are some things that no amount of money or medicine can fix.

Perhaps it is enough to have listened, and for the first time, let someone tell their story without interuption or judgement. To have held space for them. To have forgotten about the time, ignored the next appointment, and let the tears flow unchecked.

It is always such a privilege to share the last hours of someone’s life, and hear their final thoughts, their worries, their concerns and their hopes.

We don’t always come to know the full story, but letting a person say out loud the things that they have bottled up inside – have worried about and been ashamed of their entire life, and have kept secret from even their closest family members – gives them the freedom to let go.

Sometimes there is no prescription to write.
Sometimes showing respect, and allowing someone to maintain their privacy and dignity, and to feel loved and safe, is all we need to do.

This is palliative care. This is nursing. This is enough.

1917.

A mother prematurely gives birth to triplets. Two babies are strong and healthy. The third is weak, barely breathing. No cry.

The midwife wraps her in cotton woll and places her in a shoebox by the fire.

Her mother nicknames her Tiny.

She survives.

Several years later she falls ill with rheumatic fever. She is in hospital for many many months. No one expects her to live.

She survives.

Years later, she meets a man.
She wants to have children, but has been told she will never conceive.

She bears two children.
Strong, healthy.
She raises them.

At age 90, her husband dies.
She has multiple health problems.
She cannot remember her children’s names.
She does not recognise them.

She enters the nursing home, and quickly becomes everyone’s favourite.
She is frail.
Noone expects her to live for long.

She survives.

At age 100, she falls ill.
Her children gather round her.
They say their last goodbyes.
Noone expects her to live.

She survives.

I meet her in October 2019, when she is 102, on a day when she has been lethargic, is not eating or drinking, and is having trouble talking.
I prepare her family for death, and chart injectible medicines.
I think she might not live more than a week or two.

She survives.

December 2019.
Three weeks before her 103rd birthday.
She sits in a chair in the dining room.

Someone notices she does not look well.
They try to speak with her, but she does not respond.
They gently get her back into bed, and ask me to come and see her.

Shallow breathing, barely detectable.
Weak peripheral pulse.
Bradycardia.
Grimacing.
Agitation.

A stroke, I think.

Another discussion with her children.
They are shaken, but pragmatic.
“She wasn’t supposed to live”, her son says.

Yet they wonder if she will pull through again.
She has surpised them many times before.
She is a survivor.

We start a syringe driver, a gentle infusion to keep her comfortable.
She is so tiny and frail, that I hesitate with the doses.
I err on the side of caution.
5mg midazolam, 1mg hydromorphone, over 24 hours.
Tiny doses for a tiny woman.

24 hours later she is not comfortable.
She has needed several breakthrough medicines.
I recalculate, and increase the dose.
I promise to return the next morning.

When I arrive, I see the paperwork on the desk.
The GP has left minutes ago.
The staff are preparing for a guard of honour.

Everyone is bereft.
She was the invincible one. The survivior.
Noone can believe she is finally gone.

We stand in two lines, and solomnly watch her leave
the same way she entered, through the front doors.

I stop and shed a few tears for this tiny person
who was larger than life
and so much stronger than everyone gave her credit for.

I have work to do, and need to move on to the next patient.

I hesitate for a moment.
I think to myself that I will never look at cotton wool in the same way again.

The car is packed and ready for a camping trip on the coast.
She hesitates, just for a moment.
There is no way the fire will get into the suburbs.

The day is hot, and suddenly the sky is black.
Smoke fills the air, sirens wail.
Canberra is alight – people are evacuated – houses and lives are lost.

Her father, in his late 80s, gets into his car.
Worried about her home, he drives towards the roadblock,
but is turned back. He calls her.
“Come home”.

They pack up the campsite and head back to the unknown.

Her two cousins, both volunteer firefighters, leave their own homes and families and respond to the call.
They fight hard, and long.
Exhausted, they confirm that her house is lost.
There is nothing left.

The house is rubble.
The belongings all gone.
A week later she sifts through the ashes
…and rescues something that once belonged to her mother.
It is almost unrecognisable, but it is now the only tangible reminder of her.

Family and friends rally round, donating supplies, food, shelter.
A community has been devastated
friends have died
people grieve together
…and vow to rebuild.

Marriages fail.
Lives have been changed forever.
People leave the community
…the loss and memories too difficult to bear.

Her husband is building their new house.
She doesn’t know it yet, but as she replants her garden
and attempts to rebuild her life, something inside her is changing.
The stress has been enormous, and her body has responded in an unexpected way.

Months later she discovers it.

Lump.
Scan.
Biopsy.
Cancer.
Surgery.
Triple negative.
Metastatic.
Chemotherapy.
Radiation.

Each word is like a bullet, an insult, another blow, when she has already been devastated by so much loss. She holds her family together.
Vows to survive.

I am in charge of the day chemo unit.
She is my husband’s cousin. We are a small family, closely connected.
I love her like a sister
…and now I am also her nurse.

I schedule her treatment.
I hold her hand a colleague connects the line.
The chemicals drip, drip, drip.
We cry together.

Every three weeks, we repeat.
We spend many hours talking, sharing hopes, fears and tears.

Her beautiful long wavy black hair disappears.
She struggles as the chemicals work inside her.
Then the radiation burns her skin.
She pushes through.
Continues to be a mother, wife, daughter, friend, cousin.
Taking one day at a time, until finally the treatment is finished.

She thinks she has another chance
her house is completed
and life slowly begins again.
This, she thinks, is a new beginning.

I celebrate with her briefly.
And then I watch, and wait.

This, I think, is too good to be true.
I know the odds.
There is more to come.

Photo credit Patrick Hendry@worldsbetweenlines on Unsplash

She lies in bed, barely able to open her eyes. Her voice is feint, her skin is grey. In the three weeks since I saw her last, she has lost more than half her body weight.

The right side of her face droops, she has trouble forming words and thoughts.

Lung cancer, last days.

I feel my heart strings tug. This time, for a change, I am not here in my professional role. I come as a friend.

I went to school with her daughter. We were close all through high school. She went to school with my mother. They were close all through primary school.

We are inextricably linked, not by blood – but by time, community, shared friends.

“Come close, I need to tell you something”, she whispered.

I lean in, waiting for her to catch her breath and find the strength to go on. The words come slowly.

“I need to remind of something that happened when you were about 14…

You came to my house after you had a disagreement with your mother…

You asked me if you could stay for a few days…

Do you remember?”

I reach deep into the recesses of my memory, winding back more than 35 years. A vague sensation of unease. Am I about to be reprimanded for something I can barely recall?

“I told you that you would always be welcome in my house…
but you could only stay if you telephoned your mother and let her know where you were and that you were safe.”

I nod slowly. The memory of that day is surfacing. I can see her in her kitchen, preparing dinner. Some dish from Poland, her home country.
Chicken soup, I think.

Another link.
My grandmother was from Poland.
I am distracted momentarily, but her whisper pulls me back to the present.

“I have always wondered whether that was the right thing to do…
but I knew your mother would be worried about you…
Was it?”

My eyes are blurry, tears fall.

She is obviously troubled by this, a moment in time that I had all but forgotten. It has haunted enout to remember and speak about it in her last days.

I reply.

“Yes, you did the right thing. It is exactly the advice I would want someone to give my daughter in that situation.”

Her face relaxes noticeably. She sighs.

“I am so glad I got to say that…
I have always wondered. Now I can rest…
I might not be here tomorrow.”

I suspect she is right.
I kiss her gently, and hold her hand.
I tell her that I always felt safe and welcome in her home.
I thank her for giving me such good advice, and say goodbye.

I call my friend, her daughter, who is waiting to board a flight from the other side of the country.

It is not an easy thing to do.

I gently prepare her for what she will find when she arrives.
We cry together over the phone.

I tell her the story – she had also forgotten that day, but now it comes back clearly. We laugh and are drawn close by teh shared memory, in spite of the years and distance between us.

I am a fifth generation born and bred local. It is inevitable that I will come across people I know and will have to care for them.

Two years in a row, parents of school friends have been referred to my service. For them, it is a relief to see a familiar face that they can trust.
For me, it is bittersweet.

Fond memories, mingled with sadness at the emotional anguish my friends are experiencing.

Some days are harder than others.

I knock gently, and walk into the room.
She sits on the side of the bed, elbows resting on the tray table, shoulders hunched, head in hands.

95 years old. Spanish.

Too breathless to speak, she looks up at me and we gaze into each other’s eyes.

“Hola”, I say gently.
“I am a nurse, and your doctor has asked me to come and see you”.

She nods.

“Can I sit down?”

Again she nods.
I pull up a chair.

Her sons hover nearby.
I turn and introduce myself, and tell them I am a palliative care
nurse practitioner.

They say they were expecting me.

I turn back to her, reach out to touch her hand.
It is cold. She is pale.

30-40kg, at best, I think to myself.
So frail.
Her lips are dry and blue.
There are dark circles around her eyes.
The oxygen thereapy is hardly helping.
I look at her feet and legs.
So. much. oedema.

Heart failure, end stage.
A cruel and debilitating chronic illness.
A long hospital stay – IV frusemide.
Minimal improvement.
The doctors have told her there is nothing more they can do.

She knows that death is just around the corner, beckoning her.

The GP has charted morphine and midazolam in a syringe driver.
She doesn’t want it.
This is why the nurses referred her.

We sit in silence for a moment, just looking at each other.

“Is your breathlessness the thing that bothers you the most?”
She nods.

“Any pain?”.
A shake of the head.

“Are you frightened?”
A nod.

“Of dying?”
Slight shake.

“Of how you might die?”
She nods, and a tear courses down her cheek.

Ok. Let’s talk about that.
She has gripped my hand, squeezing it hard.
I gently put my other hand over hers.

Her sons creep closer.
“No morphine”, one of them quickly says.
She nods.

I had been warned about this, and was ready.
“That’s ok. We can talk about other things that might help.”

“Could we open the window a little bit to give you some extra air?”
She nods.
One of her sons opens the window. A gentle breeze blows in.
Instantly the room feels better.

“Are you able to rest in bed and sleep?”
No, she whispers.

“Is that because you can’t get comfortable?”
A nod.

“Do you feel like eating and drinking much?”
She shakes her head.
Teaspoonfuls only. Struggles to swallow.

“Can I ask why you don’t want morphine? It can sometimes help with breathing.”
She looks up at me with her big brown eyes.
They are so sad, and another cheer rolls down her cheek.

The softest whisper…it killed my husband.

“I’m so sorry, that must have been so difficult for you”.
She nods.
Her husband died within minutes of having a morphine injection.
She also watched a son die after receiving morphine.
Two people she loved dearly.
The association, for her, is real. She has carried this burden and fear for many years.

I ask what is the most important thing for me to know about her now, so that I can try to help her.

She is too breathless to find the words, but she holds my gaze.
I am momentarily lost in her beautiful big, brown, sad eyes.
I notice the gold cross around her neck.
“Would you like some prayers?”
She nods.

Her sons tell me she thinks her strong faith requires her to suffer in silence.
It is a sign of weakness to ask for help.

This lady is going to REALLY suffer, I think to myself.
Her sons will suffer with her.
She is already suffering.

I gently explain to her that as she gets closer to the end of her life, she will sleep a lot. That the breathing might become more difficult as her heart struggles to pump blood around her body.

She nods, and understands.

“If you are really struggling, and your sons are distresed by that, would you take another medicine which might reduce your anxiety and help you breathe?”

Not morphine, she says.
“No. Not morphine. I understand you don’t want it. It is your body, and your wishes, and I respect your decision. I promise no-one will give you morphine, unless you ask for it. I promise.”
Her grip on my hand eases.

“Can we give you something else to relax you, just a little bit, to see if it makes breathing a bit easier?”

She looks at me, and for the first time I see a glimmer of hope in her eyes.
No needles, she says.

“Just a little tablet that sits under your tongue and dissolves. Would that be ok?”

She nods.
I can see the relief in her eyes.
“Can I visit you again?”
Another nod. She squeezes my hand.

I see a smile begin to form.
Thank you, she whispers.

I leave the room, and cancel the orders for morphine and midazolam that the doctor has written.

The nurses panic.
I explain that sometimes, healing comes with trust, honesty and faith.
It is not necessarily about the medicines.
I ask them to call her priest
and get him to visit today, if possible.
She doesn’t have long.

I have done what I can.
It is enough.
For me, and for her.