The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

The night was not over…


“You ain’t heavy, you are my Mother”

Early this morning I posted “My child is in a pain-free sleep.  I will now try to sleep.  “Tomorrow may be a rough dayhttps://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/  not realising that the night was not over yet.

My poor child had a horrible night.  The pain was under control, but her arm still throbbed, and she was restless.  I was busy with some Christmas gifts.  I tried to go to sleep, but gave it up as a bad job.  So I wrote a post.  At 2am this morning I had just “published” when Vic rang the intercom.

The intercom is her 911

I ran down the passage knowing that my poor child had vomited again.  The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets.  The food had not digested at all.  She was shivering and crying.

I cleaned up whilst Vic showered.

“I am sorry Mommy.  I am so sorry Mommy”… Vic sobbed.

“I can’t do this anymore Mommy.  I don’t want to live like this anymore….”

I eventually got into bed at 5am.  Three hours sleep used to be enough sleep when I was younger.  I think I am getting old.  I need more than 3 hours.  Maybe it is time to look at a night nurse…..

Hospice called early this morning.  The antibiotics have been changed to IM injections.  We cannot put up an IV drip.  Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained.  Vic refused.  “No more hospitals.  Mommy you promised…”

Monday morning Dr Sue will come to the house and do the procedure here.

Yesterday I spoke with a wonderful young man, Marchelle.  I was privileged to have worked with Marchelle worked for a couple of years.  Unfortunately we lost a large contract and had to go our separate ways.

Marchelle has a pure heart.  He is selfless and one of the very few people I trust with every fibre of my being.  Marchelle has never let me down.

Marchelle told me he is following my blog.  He asked me whether I thought the situation is truly as bad as Hospice say it is.  I said I did.

He asked what is different this time? You have been told so many times that Vic was dying, and then she bounces back…

I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back.  Organ failure is organ failure…. Talking to him I thought “Marchelle is right!  Why am I giving up this time?  I have NEVER given up on my child, and I will not give up now.” 

I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping.  I am so tired that I am allowing the negativity of the situation to get to me.  It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.

Marchelle said he prays for us every day, and I believe him.

This morning Vic took her precious boys to pick up their report cards.  Both Danie and I said we would take them.  Vic very politely refused.  She wanted to take her boys.  She wanted to be first to see their marks.  Maybe for the last time…

She was absolutely delighted with their marks.  The boys had worked hard and deserve every mark they received.  I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.

We are so proud of them.  They are brave kids.

On Sunday we will celebrate my birthday.  On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids.  Simone still believes in Santa!  On the 25th we will go to Church.  On the 26th we will celebrate Jared’s birthday.  On the 27th we will start planning our New Year celebrations.

Forward planning is “The power of positive thinking”…

Vic and her baby Jon-Daniel..
Vic and her baby Jon-Daniel..

Vic is sleeping peacefully


IMG_4860

It is 12:42am and Vic is sleeping peacefully.  She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak.  The cellulitis on her arm has worsened despite the antibiotics.  It is now oozing pus.  Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics.  She had a violent vomiting spell just after she took her antibiotic tablets tonight.  It is very difficult for her to keep tablets and food down.  Despite the six-hourly anti-nausea injections she has….  And of course there is the problem of the poor absorption.

“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.

The situation is getting to Danie.  My poor husband tries so hard to be strong and make life easier for the rest of us.  Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today.  “She takes so much of our time, and such a big space in our lives….  Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave.  Anticipatory grief is a killer.  It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives.  They should be riding their bikes and getting up to mischief.  Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense.  I just need to record today.  I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon.  I want to remember her tears when she spoke to her sister.  I want to remember the smell of her vomit.  Maybe it will make it easier to accept later on.

We need a miracle again….


Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they will “host” our Hospice at their premises.

The CEO knows Vicky and the boys.  Jared was confirmed in his church earlier this year.

I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain.  Vernon (CEO) quietly listened to us and explained how difficult fundraising is.  Christians are tight with their money…

Vernon then shared the following with us.

“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky.  I knew she was in hospital as she was on the prayer list.  I drove to the Donald Gordon (Hospital) and was directed to the ICU.  The nurses welcomed me although it was way past visiting time.”

“Pray for her.  We are switching the machines off tomorrow morning…” they said.

I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys.  I stood next to a dead person that night.  Two days later I heard that Vicky did not die when the machines were turned off…”

I just stared at him.  I was speechless…  I had no idea!   It was the first time I had ever heard the story!

In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula.  Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer.  On the Tuesday Vic went into respiratory failure and was ventilated.  I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator.  By the Thursday her kidneys and liver had started shutting down.

ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit.   http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome

My BFF, Gillian drove 350 kilometres to be with me.  On the Thursday there was absolutely no sign that Vic could or would recover.  Vic had a DNR and a living will that she had provided the hospital.

That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired.  You must let her go…”

Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys.  They were already in bed when we arrived home.  We sat with them

Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own.  Mommy’s kidneys and liver is also not working that well anymore.  The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much.  They think it will be better for Mommy to be taken off the machines…”

Jared quietly started to cry.  Jon-Daniel was stoic.  Jared was 10 years old and Jon-Daniel 8 years old.

“What will happen with us Oumie” Jon-Daniel asked.

“Sweetie, Oumie and Oupie will ALWAYS be here for you.  This is your home.”

Jared cried himself to sleep.  Jon-Daniel just clung to me.  The three of us shared a bed that night.

The next morning early Gill, Lee and I set off to hospital.  When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”

The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.

Family and friends drifted in and out of the waiting room the whole day.  My minister came and prayed for my child.  Everyone said goodbye.

That afternoon Danie and I were allowed to see Vic.  The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face.  It was a grotesque sight.

Danie held her little hand and his tears dripped onto her arm.

Oh sweetie” he said, the sorrow and pain raw in his voice.

Vic opened her eyes and said “Daddy”….

Three days later Vic was discharged from ICU….. It was not her time.

Today I looked at her and fear struck at my heart.  My child is slowly slipping away.  Her little body is tired of the pain.  Her little organs are enlarged and diseased.  Her bones weak….

And the realisation hit home…. We need another miracle.

God please have mercy on my child.

It’s not my time….


Jared sent me the lyrics of this song. I walked to his room and said “These are beautiful lyrics Angel.”

“I think this is how Mom must feel Oumie” he said….

    It’s Not My Time Lyric – 3 Doors Down

    Looking back at the beginning of this
    And how life was
    Just you and me and love and all of our friends
    Living life like an ocean

   But now the current’s only pulling me down
   It’s getting harder to breathe
   It won’t be too long and I’ll be going under
   Can you save me from this?

‘Cause it’s not my time, I’m not going
There’s a fear in me and it’s not showing
This could be the end of me
And everything I know, ooh, but I won’t go

I look ahead to all the plans that we made
And the dreams that we had
I’m in a world that tries to take them away
Oh, but I’m taking them back

‘Cause all this time I’ve just been too blind to understand
What should matter to me
My friend, this life we live, it’s not what we have
It’s what we believe in

It’s not my time, I’m not going
There’s a fear in me, it’s not showing
This could be the end of me
And everything I know

But it’s not my time, I’m not going
There’s a will in me and now I know that
This could be the end of me
And everything I know, ooh, but I won’t go!
I won’t go!

There might be more than you believe
(There might be more than you believe)
And there might be more than you can see

But it’s not my time, I’m not going
There’s a fear in me, it’s not showing
This could be the end of me
And everything I know

But it’s not my time, I’m not going
There’s a will in me and now it’s gonna show
This could be the end of me
And everything I know

There might be more than you believe
(There might be more than you believe)
And there might be more than you can see
But I won’t go, oh no I won’t go down, yeah

http://pugetsoundoff.org/video/14565

Mommy I need to try and sleep…


Vic as a little girl

Vic had a good day.  She had a visit from Willemien, a pharmacist friend of Esther.  She soaked in her sons’ presence…

This evening she asked if she could have her injection a little earlier.  Jared is going back to theatre tomorrow morning to have his stent removed.  “Mommy, I need to try and sleep so I can be with my son tomorrow”

It is as if her wish triggered an avalanche of events.

Vic has been projectile vomiting since and the perspiration is pouring off her.  Her heart is racing and her blood pressure is all over.  Her abdomen is so distended and extremely tender on the abscess side!

Vic will not be at her son’s side tomorrow when he is readmitted to hospital.

My poor, poor baby!

Hospice counseling….


“Mom forgets things and she thinks we are all against her…  Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

via Hospice counseling…..