Posted in A Mother's Grief, Angels, Bereavement, Death, Death of a child, Family, Family Life, Grief, Grief Poetry, Osteogenesis Imperfecta, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

One year today


My precious child

Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…

If feels as if a lifetime of sorrow has passed since you stopped breathing.  If feels as if it has been a lifetime since I held you in my arms.  It feels as if I have cried an ocean of tears.

In the past year I have aged.  I have gained weight. I have existed. A year ago my life ended.  The boys and I still burn candles for you.

I am still filled with rage.  I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity.  I know that you would more than likely have died before me but perhaps with less suffering?

I will always miss you.  I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.

Today I want to thank you for my beautiful grandsons.  Thank you for remaining my little girl through-out your life.  Thank you for fighting for so long.  You were such a warrior!

I thank God that you came home to die.  I thank God that I had the privilege of caring for you.  I thank God that He entrusted me with something as pure and precious as you.

I am grateful that you are no longer fracturing vertebrae from vomiting.  As much as I miss your laugh I do not miss your pain filled tears.  I am grateful precious baby that your suffering is over.

I miss your company.  I miss our late night chats, drinking untold cups of tea/coffee.  I miss your text messages, your telephone calls, your shuffling footsteps down the passage…  the smell of smoke alerting me that you are awake and sitting on your step…

I miss the boys laughter.  I miss the joy that you brought into our lives.

We will continue to honour your memory – every day of our lives.  Your legacy will live on in each and every person that is allowed to live until they die with dignity.

I love you Angel Child with every fiber in my body.

Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…

I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…

Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…

Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…

look and don't touch_edited vicbaby Vic 5 years old100_7453 (2)Image (184) Image (191) Image (193) Image (214) Image (220)

Posted in Angels, Chronic Pain, Death, Death of a child, Family, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

It is okay to let go my angel child.


Today was an amazing day.  I desperately miss my beautiful child.

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I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan.  I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself

“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”

I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done!  I cannot undo the lie or my decision not to go…  I will however confess if I see him again.

My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed.  There was a comment on one of my first posts…I reread the post and the next and the next and the next…  I reread every one of the 335 posts I had written.

Other times, when I reread any of my journal entries or blog posts, I teared up.  Today I did not.  I was filled with relief.

I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity.  The more I read the more I realised how selfish I was being.  I took cognisance of the fact that in the early days of my blog I was careful with my words…  Today I realised how much was never written.  I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.

Today I was grateful that her suffering was over!

Does that mean I am “over” the death of my child?  No! No! No!  But I am at peace today that Vic is free of pain…

I missed her today as I will tomorrow, the day after tomorrow, next year and forever!

Vic and I
Vic and I

23.5.2012

At about 01:00 this morning Vic came into my room and got into bed with me.  Her tummy was cramping badly and she was scared.  She just lay with me for a long time, sobbing and talking about her fears.

E.H.Chapin said:  “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”… 

Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…

She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…

https://tersiaburger.com/2012/05/23/23-5-2012/

19.6.2012

Today was a day out of hell for Vicky.  She is deadly pale – she actually has a ghost like appearance.  She was so ill that she was unable to take pain medication and now her pain is out of control.

If I am having a hard time with this how must this poor child feel?  HOW CAN SHE CARRY ON???  https://tersiaburger.com/2012/06/19/37-years-on-death-row/

9.7.2012

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed with pain when I changed her.  Seeing my child sick and in pain, every day of her life , kills me.  I am dying, painfully slowly from my child’s pain. https://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/

12.8.2012  

Vic is still a very sick little girl.  The fact that her pain is better controlled does not mean that she is well.  If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death.  This week Vic’s amazing resilience again amazed me.  She is strong beyond comprehension!

My heart bleeds for her that her fragile body has once again failed her incredible will to live.  It is clear that she is merely holding onto life, as she knows it, with her fingertips……

I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved.  Vic will never function on any level again.  She is confined to bed relying on medication to keep her sane.  Maybe she will have a good couple of days here or there but her sentence has not been commuted. https://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/

Schedule 6 medication - 28 days supply
Schedule 6 medication – 28 days supply
Rest of Vic's medication - decanted
Rest of Vic’s medication – decanted

21.8.2012  

Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.

I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!

Today was a bad day – again.                                                              https://tersiaburger.com/2012/08/21/today-was-a-bad-day/

2.10.2012                

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.

https://tersiaburger.com/2012/10/02/mommy-i-need-to-try-and-sleep/

4.1.2013
4.1.2013

14.10.2012

Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next.  When she has a good and busy day, like yesterday, she pays the price for weeks.  Vic has not been out of bed today.  She is deadly pale and drawn.

It is hard for her not having privacy.  Vic is embarrassed that I hold her hair or wipe her face when she is vomiting.  Yet she needs me with her….

We are however in this together as a family. It is a rough journey for everyone.

“I am so sorry Mommy…” …it echoes through my heart.

“I love you my angel” I whisper….                                                            https://tersiaburger.com/2012/10/14/i-am-sorry-mommy/

12.11.2012

We have already had so many “extra” years.  But the fact remains that Vic is ill.  Today she is more ill than yesterday or even last week or last month.  It is not an UTI causing the pain and fever.  Her pain control is good enough to mask symptoms.  Waves of severe nausea and cramping remain…

I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another….  I have read that it feels “uncomfortable”.  It is called terminal agitation.

Only time will tell….  Time is all we have….

How did it get late so soon?                                                                         https://tersiaburger.com/2012/11/12/how-did-it-get-late-so-soon-dr-seuss/

21.10.2012

There have been times in the past couple of months that all Vic can do is lie in bed and breathe.  Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement.  There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milk shake.  She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused.  She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives.  Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.  https://tersiaburger.com/2012/10/21/vics-roller-coaster/

Mothersday 2012
Mothersday 2012

14.11.2012

Vic had a night out of hell!  The nausea was vicious and unrelenting.  Pain reduced Vic to a whimpering bundle of human flesh.

Vic’s palliative Care physician, Dr Sue, visited Vic this morning.  I think she was a little taken aback by Vic’s condition.

Sue is an amazing person.  She was so gentle with Vic.  Vic’s heart rate is fast and her blood pressure is 101/58.  Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly.  Her oxygen saturation levels are low – 90%.

Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.

https://tersiaburger.com/2012/11/14/a-night-out-of-hell/

IMG_8055

18.11.2012

Vic is having a lousy day.  She is exhausted and very swollen.  Despite the injections she has been nauseous all day.  This evening she had another vomiting bout.  Tomorrow we will see Dr Sue again.  Just maybe there is a 3rd anti-nausea type injection available

Vic also complained of a terrible “acidic” feeling.

I Googled her symptoms and found something that matches her new symptoms and blood test results.   Metabolic acidosis       https://tersiaburger.com/2012/11/18/worrying-doesnt-empty-tomorrow-of-its-sorrow-it-empties-today-of-its-strength/

IMG_8508

27.11.2012

Hospice has just fitted a subcutaneous driver – again.   Vic’s pain has spiralled out of control over the past couple of days.

Vic was in absolute excruciating pain during the night.  She battled to breath.

“Help me Mommy!  I can’t stand the pain anymore…”

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver.  “Oh Mommy, it is so sore.  Can you feel how sore it is?

As a little girl Vic used to believe that I could “feel” her pain…

“Feel how sore my toe is Mommy…”

As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease.  It cannot be so I look for a new spot on her bum to stick in a needle.                                                                                             https://tersiaburger.com/2012/11/27/mommy-can-you-feel-how-sore-it-is/

IMG_8398

3.12.2012 

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.                                                         https://tersiaburger.com/2012/12/03/we-need-a-miracle-again/

IMG_8394

5.12.2012

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

 “Then I can die…”

https://tersiaburger.com/2012/12/05/next-year-my-mom-and-i-are-going-to-italy/

Cellulitis
Cellulitis

5.12.2012

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.            https://tersiaburger.com/2012/12/05/vic-is-sleeping-peacefully/

7.12.2012

Vic’s arm is very painful.  The antibiotics have not started working yet.  Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization.  Obviously Vic need intravenous antibiotics and her tissue is too poor….

Tonight Vic had one of her worst vomiting spells yet.  It happened after 02:00am and her dinner of 7.30pm had not digested yet.  It is obvious that the oral antibiotics are not being absorbed.  https://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/

IMG_8570

7.12.2012

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.

https://tersiaburger.com/2012/12/07/the-night-was-not-over/

Vic and her Dad
Vic and her Dad

 

20.12.2012

Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

https://tersiaburger.com/2012/12/20/i-dont-want-to-die/

 25.12.2012

This is our last Christmas as a complete family.

Vic has been vomiting non-stop.  The acid has burnt the inside of her mouth.  Her derriere is so lumpy, black and blue from the constant injections.  Sr Siza popped in.  She examined Vic and started drawing up a Clopamon and Morphine injection.

“Please Sister, not my bum.  Please do it on my thigh.”

Vic no longer has an appetite.  She is sleeping at least 20 out of 24 hours.  Vic is very warm to the touch and appears flushed.  The thermometer reflects a temperature of 37 degrees C.

“Do you understand what your body is telling you Vic?”  Siza asked

Vic nodded and whispered “I do not want to die…”

https://tersiaburger.com/2012/12/25/a-time-to-be-born-and-a-time-to-die/

Jon-Daniel telling his Mommy he received his honours blazer
Jon-Daniel telling his Mommy he received his honours blazer

2.1.2013

Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.

“Something is wrong mommy.”

This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service.  She cried when she (again) named her pallbearers.  “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”              https://tersiaburger.com/2013/01/02/sisters-by-heart/

Jared just quietly sitting with his mommy
Jared just quietly sitting with his mommy

1.7.2012

Vic worries about the family’s ability to cope with her illness and eventual death.  When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…

Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”

No amount of reassurance will comfort her…Vic in time will have to let go.  She knows how deeply we love her and what void her passing will leave in all our lives.  If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?

Vic is quite hard on the boys (for their own good I must add).  She always says “I am your Mother not your excuse”

https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012/

And then on the 10 th of September 2012 I blogged the words that I want to repeat today…

So baby, if you read this post, know that we will miss you.  We don’t want you to leave us behind but we want your suffering to end.  We will continue to love you until we are reunited one day.  You have to trust us that you will always be “my baby” and the boys’ mummy.  But know that we will be grateful when your little body is freed from its pain and suffering.  You will be at peace…  You will not suffer more pain after death.  We will mourn you, but we will also be at peace…  We will think of you and smile…

It is okay to let go my angel child.

https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/

I promise I will go back to Alan.  I love you so much Vic!

Today I smiled.  It may have been a sad smile but it was the smile of a mother who is at peace with her beloved child being pain-free. 

The four of us on Christmas Eve 2012
The four of us on Christmas Eve 2012
Posted in Angels, Chronic Pain, Death, Death of a child, Family, Family Life, Grief, Osteogenesis Imperfecta, Terminal Illness, Vicky Bruce

We were one


24.12.2012
24.12.2012

I had my first counselling session with the Hospice psychologist.  It was terribly difficult and emotional.

So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”

In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”

When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…

My standard answer to Vic was “I will be okay baby!” 

Vic would say “I know, but I worry about you.  Promise me you will see someone professional after I am gone?”

“I will be fine.  I will be grateful that your suffering is over…But I promise I will!”

I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself.  Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…

So I walked into Alan’s office this morning.  I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.

We spoke briefly about the boys, but Alan firmly said that today we would focus on me… 

I bravely started talking without waiting to be prompted.  After all, that is why I was there.

“I knew that I would miss Vic after her death but nothing could prepare me for this” I said

“Vic was diagnosed with Osteogenesis Imperfecta at 18 months.  The doctors said she would not live to be older than 12 years.”. 

I spoke clearly and succinctly about Vic’s medical history.  It was familiar territory.  I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life.  I ranted about Drs S + V.  I articulated my hatred of them, my anger at their arrogance.

I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU.  I told him about the ventilator been switched off and Vic starting to breathe on her own again…

I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…

I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.

I share with him my guilt at being the one who administered her sedation at the end of her life.  It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.

I saw Alan look at the clock on the wall.  I knew our time was almost up. 

He sat forward on his chair, his elbows on his knees.  His voice and eyes were gentle with compassion.

“Tersia, it is normal to grieve.  Vic has taken up all your time and energy for 38 years.  You never separated from her.  In your mind you were one…”

That is so true.  That is why I feel as if part of me has died.  Vic and I were so close.  She always remained my baby girl.  I never became Ma, Mom or anything but “Mommy”. 

On the 9th of October 2012 I posted these words

https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years.  For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae.  We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you.  We don’t want you to leave us behind, but we want your suffering to end.  We will continue to love you until we are reunited one day.  You have to trust us that you will always be “my baby” and the boys’ mummy.  But know that we will be grateful when your little body is freed from its pain and suffering.  You will be at peace…  You will not suffer more pain after death.  We will mourn you, but we will also be at peace…  We will think of you and smile…

It is okay to let go my angel child.

Vic and I discussed this post… We cried then, and I cry now.

I pray that I will find peace.  

Posted in Death, Death of a child, Family, Grief, Uncategorized, Vicky Bruce

I miss you Angle Child!


Vic and her boys...
Vic and her boys…

Today I attended my first serious business meeting in almost three months.  I have really neglected my business.  Fortunately there was the Christmas recess, so it was not too bad.  The series of very important meetings scheduled for the week of the 13th of January was pushed back to the first week in February once I realized that Vic was dying.

I dreaded seeing my (all male) colleagues today.  I have known some of them for 25 years and they all knew of Vic’s precarious health.

I sat in my car outside the building and took deep breaths.  These guys have never known me to show emotion.  I have been stoic throughout Vic’s illness, many operations and setbacks.  I was petrified that I would not be able to contain my grief!

Lots of hugs and pats on the back dispersed with the sympathies…a hushed silence followed me into the boardroom.  With a couple of minutes to spare before the start of the meeting the guys decided to go smoke. 

“It must be a relief for you to not have the responsibility of a sick child any more…” the one said through a cloud of smoke…..

“Yes” said another.  “It has been many years”….

I did not have to dignify the insensitive remarks with a response as one of the female directors came out and hugged me.  “I have no words for you” she said.

We went into the board room and took our seats.  Being our first meeting of the year the normal New Year pleasantries was exchanged.   I coped beautifully.

The meeting began and as soon as I started speaking I could hear a quiver in my voice!  I was mortified!  I shut up as quickly as possible and spent a couple of minutes trying to compose myself without drawing any attention to myself.  Breathe in through my abdomen …exhale!  Breathe in – exhale… My hands were shaking so I clutched my pen tightly!  I put my hands on the boardroom table to steady them.

For years I have NEVER switched off my cell phone in case Vic needed me.  If I was away from home (or even when I was home) I would fall asleep in with my phone in my hand.  24/7 my phone was on.

In a way it was liberating switching my phone off when the meeting started.

When I got home this afternoon I sat reading through my old BBM messages from Vic.

“Vomiting again”

 “Can I phone you Mommy?”

 “Mommy may I have morphine?  I am so sore!”

 “Still vomiting”

 “When will you be home Mommy?”

Tonight the boys went to their dad for dinner.  Danie and I popped in at a friend whose daughter-in-law was paralysed in a motorbike accident on the 8th of December.  Her three beautiful granddaughters seem a little bewildered.  Their mommy is in rehab and their daddy is staying with her 24/7.  My friend became a substitute mommy for the girls.  I have become a substitute mom to the boys again.

It was strange going to dinner – just the two of us.

Last night I covered schoolbooks… tomorrow morning I will take Jon-Daniel to the orthodontist to have his braces removed.  Vic desperately wanted to live for the “event”.  I hope she will be there in spirit.  Tomorrow afternoon Jared and I will go and make an appointment for our motorbike learner licenses!

I am battling to contain my grief.  I am trying to find the time to research “teenage grief”.  How do we know how to treat grieving teenage boys?  What if we make mistakes?  What if we fail Vic and her boys?  I fear I am not spending enough time with the boys.

Life is a mess.

I miss you angel child!

 

Posted in Daily Post 2012, Family Life, Grief, Religion in my world, Uncategorized, Vicky Bruce

dead woman walking


Last night I had a discussion with someone who Vic loves very dearly.  This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic.  She is actually the only person that has truly travelled this horrific journey with us.  Vic has lived through many death sentences and reprieves.  Lee has been around for at least the past 7 years of Vic’s journey.  Vic has nursed Vic back to health many times and I know she cares deeply for Vic, her friend.

I discussed the various treatment options with her.  Do I insist on having a stent fitted or do I request feeding tubes?  Or do I go with Vic’s non-intervention wish?  But if I comply how do I bring calmness and peace in Vic’s life?  Vic is no exception to the rule…As Bella pointed out last night even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.

Last night I decided no sedation.  If I allow sedation, which is against her wishes, I will silence Vic’s voice, her fears and her tears.

Dr Sue says the bleeding is from the abdomen.  Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting.  Her breathing is shallow and her heart rate weak but very rapid.  Her blood pressure is dropping and her circulation is poor.  The liver is very enlarged.

We are past the point of no return.  Vicky is dying and only a miracle can save her.  There is no operation, no magic medication, and no nothing that can save her.

Today I again witnessed her anguish and phenomenal will to live.  I saw Vic, in my mind’s eye, Vic being escorted, in deadly silence down a long dark passage.  Her family and friends were escorting her on her final walk into the chamber of death.  I clearly saw the fear in her eyes and I could feel her little body trembling with fear.  I heard a voice saying “Dead woman walking…”

I saw her walk into an execution room, being strapped down and the needle being inserted into her little arm.  I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

It is so cruel.  For all of us.  Why do people linger?  Why don’t we all just go to sleep and never wake up?  Or die in a car accident?  Why this suffering???  I want to go to sleep and never wake up.  Life sucks!

Vic is on a mild sedation.  She is more calm and peaceful than she has been for a couple of weeks.  She woke up this evening and had dinner…half a hamburger!!  My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food.  She has passed no urine today.

She sobbed when I told her the boys had covered their school books…”I want to do it for them!”  She wailed

“I have let down my boys.  I always cover their books…”

“Oh Jared, look!  Oupa Tienie is standing behind you…”  It really spooked the boys.  Tienie died on the 5th of November 1999…

I wish Vic was married.  I wish her biological father was still alive!  I wish the decision was not mine!!!

Tomorrow I will ask that the sedation be increased.  I will silence my child’s sweet voice.  I will also silence her tears and fears.

“Dead woman walking…”

 

Posted in Daily Post 2012, Family, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

Gramps was here…..


Vic and her Gramps 1.4.2011
Vic and her Gramps 1.4.2011

Monday 7.1.2013  was a crazy day.  Vic was not in a good space.

Angela, Vic’s BFF came to visit.  She is not only beautiful but also a calm and serene person.  She radiates goodness.  Angela being here gives me some time because I really trust her.  I am able to get some essential chores done knowing that she is keeping an eye on Vic.

“Gramps was here” Vic said.

“How is he?” I asked

“I don’t know.  He just came to tell me how much he loves us all…” Vic replied

My Dad forgot how to breathe on the 15th of May 2011.  He died in our home (in the very same room as Vic) surrounded by his beloved family.  At times he was a stranger in the world.   Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom.  Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill.  At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.

“He has come to take you by your hand Sweetie…”  I said

“I KNOW Mommy” she said impatiently.

Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers.  Of course, Vic immediately got a bee in her bonnet and had to get out of bed.  Always the social animal!

Esther arrived and Vic burst into tears when she saw her sister.

“I am so scared Sis” Vic cried in her sisters arms.

Esther has become Vic’s “coach”.  She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for.  She holds Vic and dries her tears….

Danie took the boys for a haircut and new school uniforms.

In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit.  It was touching when she spoke with Vic and apologized for coming to visit too late.  Vic was sleeping and not aware of the visit.  Joanna left with tears streaming down her cheeks.  She left a little gift for Vic

“I wrote your name in the sand
But the waves blew it away
Then I wrote it in the sky
But the wind blew it away
So I wrote it in my heart
And that’s where it will stay.”

 Siza arrived and told me that Sue would be in tomorrow morning to assess Vic.  She said Vic’s colour is very poor and the circulation in her legs bad.  Siza is of the opinion that the most humane thing to do for Vic would be to sedate her…  Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.

I am torn.  My poor child’s anguish and pain sears through every nerve ending in my body.  Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end.  But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die.  Sedation can end her emotional anguish, but deprive us of last words.

When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries.  He came to visit.  I have thought of him the whole day….”

Dries is a dear family friend who died last year…

In the evening Judy (Dries’ widow) popped around for a visit.  When I told her that Vic had seen Dries she burst into tears.  She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…

I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…

We laughed.

Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit.  Bella, a dear friend over the years, spoke to the boys with so much compassion.  He grew up in a home with a mother who was ill.  He said that the congregation has never stopped praying for us as a family.  He said the congregation carries us in their hearts.  (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)

We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family.  Someone stifled a little sob.  There was absolute peace and a Godly presence in Vic’s room.

Related posts:

Rest in peace dear friend    https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/

For some dying is hard work   https://tersiaburger.com/2012/07/18/487/

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Humour, Palliative Care, Terminal Illness, Vicky Bruce

I don’t want to die


Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

Do you think we will be able to do Italy Mommy?” she asked after a long silence

I hope so Baby. I think we must take the boys with us…” I replied

Oh Mommy, can we? We don’t have to go for a long time…” Vic said

We lay quietly for a while. Vic trying to breathe through her nausea and pain and I contemplating how I am going to pull off this Italy thing… Just imagine flying with a caseload of injections and a litre of morphine syrup…

Mommy, I don’t care what you do with my ashes… It was so hard putting my father’s ashes into that wall of remembrance! Are you going to be okay Mommy?” Vic cried

My heart stopped. This was so out of the blue… “You will always be with me. I will not put you into any wall” I said

“I will be your guardian angel.” Vic said

I know but remember I will need some privacy… “I said

Don’t worry Mommy! I will make sure my father doesn’t peep as well” Vic laughed through her tears

“I am scared Mommy…”

I am scared too Vic…”

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Jared, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

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..
Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Jared, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

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.

Posted in Chronic Pain, Daily Post 2012, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

The Liver….


 The liver works with the endocrine system to regulate nutrients in the body and remove toxins. An enlarged liver means that it is endangered due to disease or other factors, which can lead to toxic shock. The proper medical term for an enlarged liver is hepatomegaly.

A healthy liver helps fight infections and filters toxins from the blood. It also helps to digest food, store nutrients for future needs, manufactures protein, bile and blood-clotting factors and metabolizes medications. A healthy liver has the ability to grow back, or regenerate, when it is damaged. Anything that prevents the liver from performing these functions – or from growing back after injury – can severely impact health and very possibly length of life.

What Are the Symptoms of Liver Failure?

The initial symptoms of liver failure are often ones that can be due to any number or conditions. Because of this, liver failure may be initially difficult to diagnose. Early symptoms include:

  • Nausea
  • Loss of appetite
  • Fatigue
  • Diarrhea

However, as liver failure progresses, the symptoms become more serious, requiring urgent care. These symptoms include:

  • Jaundice
  • Bleeding easily
  • Swollen abdomen
  • Mental disorientation or confusion (known as hepatic encephalopathy)
  • Sleepiness
  • Coma

http://www.webmd.com/digestive-disorders/digestive-diseases-liver-failure

Causes

Fatty or enlarged livers are caused by infections, certain medications, general toxicity, hepatitis, autoimmune disorders, metabolic syndrome and genetic disorders that affect the liver. Abnormal growths, such as cysts or tumors, impact liver size. Blood-flow symptoms, such as heart failure, can cause liver enlargement. Conditions also exist that restrict blood to the liver veins, such as hepatic vein thrombosis.

An enlarged liver indicates a problem with the liver itself or your overall endocrine system. If you suspect that you have any of these symptoms, you should seek medical attention. The causes of an enlarged liver vary in their severity and complexity. Only a medical professional can make the proper diagnosis for the cause of an enlarged liver.

Read more: http://www.webdiagnosis.com/causes-of-an-enlarged-liver#ixzz2CzDrLFH2

If not addressed and stopped in the earlier stages, the damage resulting from these multiple causes leads to scarring of the liver, known as cirrhosis, where large portions of the organ begin to lose their capacity to function or regenerate.

Treatment of patients with liver failure is specific to the unique symptoms and conditions experienced by each individual. Any patient with liver damage will be asked to abstain from alcohol. For patients with cirrhosis and end-stage liver disease, medications may be required to control the amount of protein absorbed in the diet. If there has been a build-up of toxins, particularly high ammonia levels, medication will be offered which lowers these levels. Low sodium diet and water pills (diuretics) may be required to minimize water retention. In those with large amounts of ascites fluid, the excess fluid may have to be occasionally removed with a needle and syringe (paracentesis). Using local anesthetic, a needle is inserted through the abdominal wall and the fluid withdrawn. Sometimes surgery is performed to minimize portal hypertension and lower the risk of gastroesophageal bleeding.

At this point, a person may become a candidate for liver transplant of part or all of the liver. Transplant success has improved in recent years with 1-year patient survival rates of up to 87%.  Due to the severe organ shortages, patients who are listed for liver transplantation have an estimated wait time of 1 to 3 years, depending on blood type and illness severity. Many patients are never able to be considered for transplants due to severity of their disease, other medical problems, or social considerations such as ongoing alcohol use or non-compliance with treatment recommendations. Others die while waiting for a transplant as their disease continues to progress.

The impact of these various symptoms and conditions on suffering and quality of life are profound, and ESLD patients can benefit greatly from hospice and palliative care. Even, when an ESLD patient is on a transplant list, this does not automatically prevent them from being on hospice services.

According to Medicare/Hospice  guidelines, patients will be considered to be in the terminal stage of liver disease (life expectancy of six months or less) and eligible for hospice care, if they meet the following criteria (1 and 2 must be present; factors from 3 will lend supporting documentation):

1. The patient should show both a and b:
a. Prothrombin time prolonged more than 5 seconds over control, or International Normalized Ratio (INR)> 1.5
b. Serum albumin <2.5 gm/d1

2. End stage liver disease is present and the patient shows at least one of the following:
a. ascites, refractory to treatment or patient non-compliant
b. spontaneous bacterial peritonitis
c. hepatorenal syndrome (elevated creatinine and BUN with oliguria (<400ml/day) and urine sodium concentration <10 mEq/l)
d. hepatic encephalopathy, refractory to treatment, or patient non-complaint
e. recurrent variceal bleeding, despite intensive therapy

3. Documentation of the following factors will support eligibility for hospice care:
a. progressive malnutrition
b. muscle wasting with reduced strength and endurance
c. continued active alcoholism (> 80 gm ethanol/day)
d. hepatocellular carcinoma
e. HBsAg (Hepatitis B) positivity
f. hepatitis C refractory to interferon treatment

http://www.hospiceofthecomforter.org/en/post/medical-perspective/understanding-endstage-liver-disease

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

Signposts for Dying


Yesterday I posted on “time”.  Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying 

Some of the stages of dying start to be discernible a few months before death occurs.  

 Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm. 

 Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods.  This year she relived every minute of her father’s final journey… Vic has started living in the past.  

 I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

 Vic no longer eats big meals and I seldom hear her say “I am ravenous”.  Due to the 81 abdominal surgeries and multiple bouts of septicemia  Vic’s absorption is very poor.  (Poor absorption = BIG appetite!)  Vic used to have the appetite of a horse – always nibbling and scrounging for food.  Now it is sheer discipline that keeps her eating.  She knows she cannot have medication without eating first.  Strange thing is that she is not really losing weight.  Hospice says it is due to the high levels of cortisone she takes…  I have been told by Hospice not to worry about her loss of appetite.  Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

 The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria.  Our bodies actually start relaxing into this stage of dying. 

 Vic still drinks a fair amount of coffee.  She used to drink it warm but now she dozes off before she has finished her cup of coffee.  She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep.  It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side…. 

 Reduced appetite and increased sleep is called “Signposts for dying”.

 A couple of weeks ago Vic was very emotional.  She would tear up without any reason.  This stage has passed.  It is as if her tears cleansed her soul. 

 Vic is battling with loneliness.  She hates being alone.  If she could she would have one of us around her all the time.  She often complains that we do not spend time with her.  We do spend a lot of time with her.  She just dozes off and then we leave to carry on with our lives…  The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

 Vic is not in good shape at all.  She is suffering severe cramping and nausea that is not responding to any of the medication.  The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning.  She also suggested that Vic be admitted to Hospice In-Patient’s.  Vic and I firmly declined…

 It is obvious that Vic has one or other infection.  I think it is the abdominal sepsis.  She seems flushed and feels hot and cold.  The thermometer does not reflect her running a fever.  This is obviously something as Ceza mentioned it to the doctor.  She explained that this happens when the auto-immune system is compromised.  I have tried to Google it but without too much success.  I will ask the doctor tomorrow morning.

 Vic is in terrible pain tonight.  I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even.  She whimpered in her drug-induced sleep….

 I know the shutting down process has started.  Not because Hospice told me but because Vic told me. 

 Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!

 

 

Posted in Chronic Pain, Family, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

Is there pain after death – post 2


A pensive Vic…. 2011

Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz.  This post elicited some comments – mainly from Vic.  Vic has started reading the odd post of my blog.  In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post.  I find that I have become guarded in what I am writing.  I am thinking that I should blog about stuff that may allay Vic’s fears….

Yesterday Vic asked  “Mommy, I know what we believe in but what if there is more pain after I died?”

“You read my blog?” I asked.

“Yes” Vic replied.

“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”

“I know that Mommy but what if I am still in pain… What if the pain does not stop?”

“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind.  That is what the post is about…..”

Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop?  What if your pain does not stop?”

Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.” 

sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”

“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.”  http://thedrsays.org/2011/03/

I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind. http://thedrsays.org/2011/03/25/the-one/

Vic so often tells me how worried she is about the family.  She worries about how the boys, her dad and I will cope.  Whether we will cope…. whether we will be able to get over her eventual passing….  Andrew and sbcallahan write about their fears… for their loved ones.  It is a fear that all terminally ill people appear to have.

My Mom died a bad death!  Two weeks after major surgery she died an agonizing death from septicemia   We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain.  God alone knows what went through her mind because she was ventilated.  When my Mom finally died we were so relieved.  We were relieved that her suffering was over.  We were traumatized by the dying process not her death.

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years.  For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae.  We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you.  We don’t want you to leave us behind but we want your suffering to end.  We will continue to love you until we are reunited one day.  You have to trust us that you will always be “my baby” and the boys’ mummy.  But know that we will be grateful when your little body is freed from its pain and suffering.  You will be at peace…  You will not suffer more pain after death.  We will mourn you but we will also be at peace…  We will think of you and smile…

It is okay to let go my angel child.

Posted in Chronic Pain, Family Life, Grief, Jared, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

Mommy, I thought I had more time….


“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”

–Dame Cicely Saunders

Mommy, I thought I had more time…..

Posted in Chronic Pain, Family Life, Grief, Jared, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

Mommy, I thought I had more time….


Jared and his proud mommy

“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”  –Dame Cicely Saunders

The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman.  She has a gentle voice and long fingers with short nails.  She drives a Jeep and keeps large dogs.  She looks like a naturalist.

“I am Dr Sue Walters from Hospice.  The Pain Clinic asked us to see you.  Is it okay for me to examine you?” she asked Vic in her gentle voice.

Vic’s abdomen was severely distended and very tender.  She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication.  Vicky’s vitals were poor.

Sue administered a strong morphine injection.

“Vicky, you appear to have an abscess on the right-hand side of your abdomen.  The skin is hot to the touch and distended.  I think you have a partial obstruction.” Dr Sue said to Vic.

“I am here to see if Hospice can help you.  Do you realize that you are very ill my love?”  Dr Sue asked Vic.

“Hospice will not hasten your death my love.  It would be our aim and purpose to provide you with pain relief and quality of life.  We will treat you and not the disease.  It is exclusively your decision whether you want us to help you and how you want us to help you.”  She explained to Vic

Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care

Vic was in so much pain that she was barely able to speak.  Tears welled up in her eyes and she softly said “Please doctor”.

“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked

“I want no life extending treatment.  I am so tired doctor” Vic whispered.  “I can’t do this anymore…..”

“That’s fine my love.  We will try and relieve your pain and give you some quality of life.”

“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.

Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a  subcutaneous morphine syringe system by that afternoon.  Hospice would arrange for counseling for the boys.

She hugged me and left.  All of a sudden I felt so alone again!

Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.

The first couple of days Vic slept a lot.  She was tired but there was immediate pain relief.

The nausea subsided and the partial obstruction cleared two days later!

The first infusion site was in her leg.  Within a day and a half the area “tissued”.   A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain.  We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm.  Within two hours the needle came out again and the morphine was running onto the skin.  It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.

Last night the tissue in the abdominal area had tissued again.  It was also bloody and the morphine was running onto the skin and not into the tissue.  Vic was nauseous with pain.  I had no option but to remove the needle and re-inserting it into a different site.

“I think we should put it into the other side of your tummy” I said

“Mommy, I will insert the needle if you help me…” Vic replied

“No sweetie” I said.  “I will do it”

My heart was in my throat.  I removed the needle and cleaned the injection site.  I disinfected the new site that I had identified.  I took the needle in my hand and lifted the skin.  I pushed the needle against the skin.  I assumed that the needle would just slide in… It did not just slide in!  There was resistance!! I let go of the skin and changed my position.  I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.

“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.

I exerted pressure on the needle and it slid in…  Sweet success!!!!

“Oh Mommy you are such a star!  Thank you.  That did not hurt at all!” Vic gushed.

I do not believe her.  I had felt her little body tense up as the needle went in.  It hurt!

My entire body shook.  The bile rose in my throat and I slowly let out my breath.

We have all come such a far way.  Until last night I could not watch anyone stick a needle into my child.  Now I have stuck a needle into my child’s flesh.  I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.

The good news is that I was actually able to work the whole week.  It was the annual African Air and Defense Show and we exhibited.  Normally I would be absolutely frantic about Vic.  But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.

Vic is far more active.  She is truly so much better.  The partial obstruction appears to have cleared!  She spends time chatting to the boys.  On Saturday she took Jared shopping for a new shirt and shoes!

On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡”  Vic handed him his baptism candle that she received 15.5 years ago at his christening.  He lit his candle as he took responsibility for his own walk with God.  Vic and I laid hands on him and prayed for him.  It was so touching.

Joyous day!

Vic attended Jared’s confirmation service.  I have never seen a more radiant and proud mother in my entire life.

Vic has reached another milestone in her life.