Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
Today was an amazing day. I desperately miss my beautiful child.
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
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…
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.
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 supplyRest 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!
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.
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.
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.
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
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.
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.
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/
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.
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.
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.
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….
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.
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
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
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
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”
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…
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”.
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 am systematically packing up Vic’s belongings. It has been a humongous job! Vic was a squirrel – she hoarded! I have discarded hundreds of old VCR tapes….thousands of photos and many hundreds of cards. The “Good luck with exam cards” were totally wasted on Vic – I came across her school reports again…; get better cards, I love you cards and thank you for your friendship cards from her school friends; lots and lots of Valentine cards… The one card that got to me was a card that read:-
“To My Daughter
So many times
When you were a child,
I looked upon your
Sleeping face
And wondered
What kind of woman
You’d grow up to be?”
Then on the inside of the card it reads “You grew up as wonderful as I imagined” Today I can categorically state that was not true. Vic grew up to be a far more wonderful person than I could ever have imagined. Vic was kind and generous. Vic always smiled. Vic loved unconditionally and never judged. Vic was devoid of bitterness and hate. She never spoke unkind words. Her bravery goes without saying… Vic is the bravest person I know. Vic always said “I am fine thank you…” The shrillness of the “fine” was the “stress-indicator” of how ill she was.
The cards her school friends wrote were to thank her for her friendship and support. Gia wrote on the 26th of March – year unknown: “This is just a short note to say thanks for all your help, attention, help and love while I’ve been under the weather…” On the 28th of October 1991 Tatum wrote “You’re a great friend and I am dreading this time next year when we all have to say goodbye. Thank you for being you and putting up with me…” Monique wrote “Thanx for everything. You know what everything is.” One of the Vicky’s wrote “as friends we have walked together sharing joy, laughter and tears. Though time may pass and things may change, I’m sure you’ll agree, That one thing always stays the same…each other’s loyalty” Mouse wrote “Vicks thank you for willingly giving help – be it a smile or a thoughtful thought – It may go unnoticed but it is appreciated” Gia ended most of her notes, cards and letters with “I’ll meet you at the end of the earth”
I truly felt like a grave robber going through Vic’s private correspondence. I cannot keep it all – there is just too much and I did not want to discard her whole life. So I have made a memory box of all her school dance invitations and photos, her friends’ notes, some boyfriends’ letters and her theatre season tickets. I have added some of the hundreds of cards I sent her over the years. Yes…Vic kept them all!!!!
How can I just wipe out her lifetimes memories? Vic treasured these items and I will keep it safely for her grandchildren to see one day… This memory box is her memory box. A tribute by her friends… It was an experience to “see” Vic in high school. Vic insisted on going to boarding school in High School, and she was accepted at one of the most prestigious girl schools in South Africa. Vic LOVED the freedom and camaraderie of boarding school. She got up to a lot of mischief! I have now personally seen the photos of what the girls got up too… But I am so glad.
I have come to realise that I never truly allowed Vic to grow up. I was an over protective mother and quite honestly maybe even a little overbearing. Vic always remained a child. Albeit a mature child and an old soul but never the less a child. From the day my beautiful baby girl was born I knew I had to protect her from the world. She was too tiny and beautiful for this horrible world we live in. Now my beautiful baby girl is safe from pain, hurt and the ugliness of the world.
Tuesday 22.1.2013 – Tonight is the first night in a long time that I lay on my sofa, in my own TV lounge, watching Law & Order. I kept listening for the sound of Vic’s little feet shuffling down the passage…It is the first time since Vic’s death that I truly experienced the “emptiness” of the house.
The house has been so busy. In the days preceding Vic’s death the boys went to stay with friends and family. Vic’s suffering was too horrible for them to witness. I did not want them to remember life ebbing out of her. On the 15th my brother arrived from the coast and my sister from a neighbouring city. I was in such a dazed stupor that I don’t remember them arriving. I fell asleep next to Vic with my head next to hers, and my hand on her heart whilst the minister was saying a prayer….
On Wednesday the 16th Leeann started staying with me. Danie, my brother, Lee-Ann and I took turns on Thursday night staying awake with Vic. The time still passed in an absolute maze of unreality. I knew on the 16th that Vic would die by the weekend.
Vic was still able to communicate with her eyes. She blinked when I asked her a question and her answer were “yes”.
Thursday Dr Sue came to see Vic.
“It is close” Sue said.
Murky red urine dripped into the catheter bag…. Vic’s eyes no longer closed completely… Her eyes had “broken”… she was gasping for breath.
“We must increase the Buscopan” Sue said.
“I think I have heard a rattling sound once or twice” I said
“Yes” Sue said. “I can hear it clearly through the stethoscope”
Sue increased the pain medication as well as the sedation.
We decided to let the boys come and say their goodbyes… Someone, I am not sure who, went and fetched the boys from school. The boys walked into their Mom’s room. Their eyes wide and sad. They lay with her and whispered soft words into her ears. They softly kissed her and walked away. It must of been the hardest thing they had ever done.
I send Danie out to go find me a new blood pressure measure that fits around the wrist and would not hurt her little arms every time I took her blood pressure. (Sue had one…) I became almost obsessive in trying to ascertain where she was in her journey. Vic was very unstable – within minutes her blood pressure went from 150/123 to LO (too low to measure) on the machine. Her pulse was racing at 160 beats a minute.
I lay next to her with my hand on her heart. Her little heart was pounding against the palm of my hand. Vic was fighting with every fibre in her body to stay alive. I looked at my child and thought “If I have her admitted to the Donald Gordon ICU they may be able to save her…” but then I realized that it was futile. Vic was slipping away and nobody could do anything in the world to change that. Vic was dying and I was helpless. I could not save my child.
My baby girl is in the final stages of dying. She has developed a bedsore on her heel and her hip appears to be cellulitising… Vic is jaundiced and her heart rate is up to 160 bpm.
I have been lying next to her for the better part of the day listening to her slightly laboured breathing. Vic was catheterised today and the appearance is the urine fills me with dread. It is brown red in colour.
It is amazing that all Vic’s wrinkles have miraculously disappeared. Her skin is unlined. In death she is heartbreakingly beautiful. Her face is serene.
For all intents and purposes Vic’s suffering is over. This part of her journey is peaceful and serene. I am burning candles. The house is quiet but for Vic’s gentle yet shallow breathing.
I decided today that it would be in the boys’ best interest to spend a day or two with a friend. Jared is with Ricardo, BFF, and Jon-Daniel is with Henk, cousin. I cannot bear the thought of them witnessing Vic death and then Vic being removed from the house. They were so relieved when I gave them the option.
There is a steady flow of visitors in and out. Mainly family. My sister from Pretoria and my brother from East-London have arrived.
I am numb from tiredness.
Esther brought Lasagne for dinner.
It is going to be a long night. I honestly believe Vic will not see the end of this week.
It has been a long day. Vic is in a drug induced sleep. She looks so peaceful. Vic is not anaesthetized – she wakes when she is thirsty or in pain. She has only urinated once in 24 hours. Her end is near.
Vic is looking angelically beautiful. Her skin is blemish free and almost transparent. Her hair seems to have taken on a life of it’s own. Her little hands look skeleton like. Her body is wasting away and yet she remains as beautiful as ever!
I will not sleep tonight. Many years ago I promised Vic that she would not die alone or in a hospital. The time is near and I must honour this promise.
Earlier tonight she woke up and I wasn’t in her room. She had a panic attack… Danie found her trying to walk down the passage. She was holding onto the wall and tears were running down her cheeks. “Mommy, I am scared…”
Something has started bleeding again. Vic vomited and there are signs of old and new blood again. “Look Mommy, my mouth is bleeding…” she said.
Vic is deadly pale and her body has involuntary “jerking” movements. She is decidedly unstable.
“Mommy, you have to get me to the awards evening. I don’t care how. Promise me Mommy!!!” She sobbed tonight. Tomorrow I will speak to the school and make the arrangements. It is not a wheelchair friendly school and Vic could never sit through a two hour ceremony. We will find a way.
We had a strangely “normal” day today. Jared brought his gaming computer down from the study into my TV lounge. It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it. Today I welcomed it. We needed to be close to one another. I swam twice and we ate spaghetti bolognaise.
The boys have fear in their eyes. I have fear in my heart.
Tuesday brought an avalanche of visitors. It was a very, very emotional day. Vic was confused and seeing visions of angels and dead loved ones.
Vic’s friend Angela has been absolutely amazing. She has sat through many hours of Vic’s tears and fears. She has consoled and supported – at great personal expense. I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her. She has hugged and messaged. She has been a pillar of strength.
Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers. Vic’s room looked and smelled like a garden! It looked absolutely beautiful and Vic was thrilled.
Vic has refused to let go. She is holding onto life with every fibre of her being. She does not want visitors to leave and will try to get out of bed when they are here.
She cries and keeps asking “How do I say my final goodbyes?”
Esther visits every day. She picks up the boys after school. She is Vic’s guide. “Go towards the light. The light is good!” she keeps telling Vic. Esther is a ray of sunshine and like the Rock of Gibraltar. She is Vic’s sister in love.
It is heart wrenching!
Vic clings to her dad and the boys. She puts out her arms and says “Daddy don’t leave me…” When she sees her boys she cries “Please give me a hug…” and then “I love you more than life and then some more…”
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.
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.
Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”
“Oh…” she said. “Why not? I think I will…”
We laughed.
In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.
Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.
Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!
“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!
In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”
I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.
The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.
Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.
Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”
Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?
I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.
I am babbling.
Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”
“Oh…” she said. “Why not? I think I will…”
We laughed.
In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.
Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.
Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!
“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!
In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”
I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.
The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.
Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.
Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”
Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?
I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.
I am babbling.
” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care. You feel so alone you just sit and cry…every second you wish you could die.”
Vic is rapidly deteriorating. Last night the nausea was absolutely relentless. With no food in her stomach Vic vomited blood. Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night. I cried and slept in her bed with her.
Today Sr Siza tried to put up an IV drip. Vic has absolutely no veins left that are suitable for a drip. The sub-cutaneous driver is back up. At this stage of the game the risk of cellulitis is less than the need for pain and symptom control. We will reposition the subcutaneous driver as and when we need to.
Dr Sue has prescribed Cyklokapron. “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.” http://en.wikipedia.org/wiki/Tranexamic_acid
She suggested that Vic be admitted to hospital. Vic refused.
On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating. It is pretty ironic that Vic may well be our first death.
But then again, tomorrow may be better than yesterday….Today was better than last night.
Vic lost the Christmas gift she bought Esther. It is not the first time this has happened – Vic previously bought Esther a “Sister” fridge magnet and mislaid it somewhere…
Vic has spent a lot of time sorting out some last things – double checking her insurance policies, photo albums, writing cards for the boys to be read on the first Christmas, first anniversary, final school exam… She has been going tick, tick, tick…Oops Outstanding item: Esther’s gift!
I have searched the house and not found the sentimental nick-nacks Vic bought Esther for Christmas. I have driven around and looked for replacement gifts, but to no avail. So yesterday Vic said to Esther “Sis, I have to replace your Christmas gift… I cannot move on before I do that…Mommy is taking me to Eastgate tomorrow. I know I will find it there.”
Esther, who has a superb sense of humour, said “I won’t let you die before I get my present…What time are we leaving tomorrow?”
Early this morning Vic was dressed and ready for the excursion. At about 11am we set off shopping (after a hefty pain and nausea injection…) At the second shop we struck gold! (I actually found the gift she was looking for.) Vic had the salesperson wrap it with Christmas gift wrap. She is a stickler for “attention to detail”
Mission accomplished we went to a restaurant for lunch. As usual Vic agonised over the menu. She wanted a salmon dish with cream cheese – No salmon…. Arghhh! She settled for a sandwich and coffee.
The gift Vic bought was a Willow Tree figurine set of two girls holding hands. “Just like we lay and chatted last night Sis…”
Vic and Esther are step sisters. There is no blood bond, but they are bound by their deep love for one another. Esther has been an absolute pillar of strength to Vic and the rest of the family. Daily Esther sends Vic beautiful text messages. She brings Vic flowers from her garden. She lies next to Vic and listens to her babbling. Esther is the sister Vic never had.
Needless to say, Vic did not handle her lunch well and after a visit to the toilet we left. I could see her heart beating like crazy in her neck. People looked at us as far as we walked. I realized with a shock that it is because Vic obviously looks ill and shuffles like an old person. I look at her and I only see a beautiful young woman; my baby girl and the mother of my grandsons.
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”
Vic asked that I get her minister to come and administer Holy Communion to her this week.
The whole situation is so surreal. I find it impossible to believe that Vic may actually be dying. She is so beautiful and her mind is crystal clear! I think Vic is just caught up in the Hospice talk. Maybe I am in denial. She has not vomited blood for two days. That is a good sign. Google says her heart rate can go up to 250 and Vic’s HR is only at 120 and occasionally at 155.
Oh dear God please grant my child peace. Please grant us all peace.
Sisters holding hands
Celebrating a treasured friendship of sharing and understanding
It has been a long day. Vic is in a drug induced sleep. She looks so peaceful. Vic is not anaesthetized – she wakes when she is thirsty or in pain. She has only urinated once in 24 hours. Her end is near.
Vic's Final Journey 