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…
Ah, I have been surrounded by angels this week! Yesterday my friend Trix, just popped around with a beautiful bunch of roses…yellow and orange. Vic would have loved the flowers and the gesture! Vic’s eldest sibling too dropped off a beautiful bunch of flowers.
Yesterday we burnt candles for Vic. We all cried. We all desperately missed Vic.
Trix is a “new” friend. She is part of the Stepping Stone Hospice steering committee. Trix is funny, fit, bright, dynamic and very intelligent! She is absolutely amazing, and no amount of effort or work for Stepping Stone Hospice is too much effort. Trix posts these amazing comments on Facebook throughout the day. Her posts are philosophical, funny and radiates her love of life and people.
Trix has become such an important part of my life in a short period of time. She has a way of saying “Do what you must do to cope with today…” She is not the huggy/kissy type friend… Under her chirpy exterior lies one of the most positive and honest people I have ever had the privilege of knowing.
Now my friendship with Trix is one of the few goods things that came out of Vic’s illness… If Vic had not dreamt of a Hospice and Trix had not lost a husband to cancer in a Hospice In-Patient unit we may never have met…
Another new friend is Wendie Deacon http://deaconfamilyblog.wordpress.com/an-angel-named-vic/ Wendie is a nice person who is truly gifted. Wendie has challenges of her own and the way she has handles these challenges are so brave! She messages and says such beautiful things of Vic… That on it’s only is enough to truly endear her to me. Wendy wrote a beautiful poem for Vic… Thank you dear Wendie for honouring Vic with your words!
If only Vic could read Wendie’s beautiful poem… Do you think angels can read? I wish Vic could read these words…
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.
This amazing hopeful post was written by Missmorgansmom…A grieving Mother who lost her daughter 5 days shy of 17 months ago to a drunken driver… When I first read her blog my heart stopped for a couple of seconds. I knew that the grief that she was living would be mine soon.
I recall thinking that it would be somewhat easier when Vic dies. Missmorgansmom’s lost her precious daughter not through debilitating illness but through a drunken driver. I knew that she had so much reason to bitter. Her child’s life had not even started and I was praying for my child’s suffering to end…
When the raw despair and grief overwhelmed me after Vic’s death I thought “My grief and anger is as intense as Missmorgansmom’s… When the tears overwhelmed me I remembered this cyberfriend of mine… It scared me that she remained in this cocoon of grief. I recognize the journey of grief as I am embarking on it…I read it before…
Today was my first session with the psychiatrist at Hospice… I came out of it a wreck. I cried and teared up the whole day filled with despair that I would never heal.
Then I received my email notification of Missmorgansmom’s “Perfectly Imperfect” post. The title intrigued me because of the “IMPERFECT” part of it.
The reference to finding “a place where I belong” hit home. My blog is where I feel safe and understood. I am not judged nor am I told to move on…I am encouraged, understood, loved here…
I belong to a horrible club of Bereaved Parents.
This post filled me with hope. If Missmorgansmom can laugh more and cry a little less than I know one day I will too…
Thank you dear cyberfriend for giving me hope.
Grief is instrumental to the metamorphous of person, as a whole. So many things change in your life when you lose some one you love. Although no loss is an easy one, as personally I have lost my father, stepmother and grandparents. Sadly as heart wrenching as their deaths were there is no comparison to how my life has changed with the loss of Morgan. There is no possible way to describe what this life altering event does to you, or prepare you for the process it takes to find a new normal, especially when the process is as individual as the experience it self. This is why i continue to share this undertaking, for understanding on every level. For myself to reflect on, for those who are in a similar predicament, as well as people who simply wish to understand more.
In my journey over the last 17 months or 5 days shy of 17 months I have found that the one place i feel somewhat normal is when i am with others like me. This could be in a virtual support group, or a friendship, or honestly a stranger with a similar story. It is so hard to feel like an oddity or only feel “Normal” whatever that is, when you are among other s that belong to this club which no body wants to be a member of. You only feel a like you are not abnormal because others for similar reasons now live with broken hope of what their dreams once were, because their world was as well obliterated. I suppose to feel comfort and normalcy when you are with those who are just as fragmented is conventional in many facets. Its just so hypocritical, you do not wish anyone else to ever live in the hell you are in, you do not want anyone to have felt this pain,but yet you gravitate to those that do because they get it.
I can say that I am learning to process the fact that nothing will every be the same, it will always hurt, it will never completely heal. I am finding that i have been able to laugh a little more than months ago, I cry a little less and slowly am learning to move back into trying to be functionally productive. This is not saying I am any better than I was during the early months, it is just saying that I am adjusting to function with the pain. I still feel like I am in quick sand and still seems like a lot of the time the fight to get out is not worth the emotional and physical exhaustion. On those days, I generally drop back five and punt, maybe just try to stay under the covers until i feel strong enough to fight a bit more, whatever it takes.
I do grasp a lot more now, the proverbial light bulb has gone off, i am always going to be broken! I will never be whole, kind of like a puzzle missing a piece or I suppose like a tea cup that the handle breaks off and is glued back together, its weaker and never the same, but can function. So at this point in this wicked game this is where i am and quite honestly it is what it is! I have learned that at any given day in the process of grief, the battles you fight change from moment to moment. In the beginning i guess you are going through the traditional stages if you will. As time goes on and you graduate into new challenges, you find that the things that hurt now are things you could not have fathomed when it first happened. When you bury your child the pain and shock are so intense that no one could have possibly prepare you for! So as time goes you learn to progress through those stages, and you may find that in some ways you come to terms with the fact that your baby is gone and not coming back. Than you at some point you start to climb out of the rabbit hole to see that the world and life as you knew it, now has a completely contrasting view with incompatible meaning. You now identify with different goals, hopes and dreams, because the ones you had before are now a mirage. The depth of these goals , hopes, and dreams, may be as little as getting out of bed and making your bed one day or as extreme changing a career. The metamorphous of grief reprograms you to keep the focus of the obtainable idea that you are only in need do the best that you can at a single moment, nothing more nothing less as well as embrace the idea of your new normal to be as being perfectly imperfect!
I am a mess. I have cried myself to sleep every night this past week. I tear up without reason.
I have this indescribable longing to see my child, hold her and be with her. I went onto Vic’s Facebook and went through all her photos. Most of the photos on her FB are “tagged” photos of mine. I went through the photos and “spoke” to Vic. I remembered the wonderful mother and daughter that she was. I looked at her journey, the amount of photos where she is in bed with the boys lying with her. The sad thing is that it is truly only the tip of the iceberg.
I found this note on her FB that I had never seen before. Vic posted this 3 days before my dad died.
17 May 2011 at 23:37
Today Hospice came to access my Grandfather… They dripped him & made him comfortable. He has lost his swallowing reflex, sleeps most of the day, is completely bedridden & can barely talk… The suddenness of his deterioration is very difficult to comprehend. Please could you all say a big prayer for my Gramps and especially my Mom, who lost her best friend of 25 years, age 51 due to a heart attack last Tues. My Mother is one of the strongest, bravest people I know.. How do we say goodbye, how do I take my Boys to say their Goodbyes tomorrow, how do we accept that this incredible man has such little time left regardless of the fact that we all know that its best for him. How can I be strong for my babies when my heart breaks all over again, every day when I see him… Especially my Eunice Friends, you will all remember how desperately my Gramps and Gran loved and spoilt me and how VERY MUCH they meant to me… I don’t want to live without him even though I realise that is extremely selfish, but I love my Grandfather so desperately, It’s not fair… All I ask for is compassion… Compassion for Gramps and my Mother… Thank you to everyone for all your love & support through everything… Love Vic.
Vic and her Gramps
I understood Vic’s agony of saying goodbye to us better… I have doubted our decision to sedate her during the last few days of her life… Reading this today I was filled with gratitude that we did. I remembered her emotional agony when her friends left after a visit… I remember her clinging to Danie and crying “Don’t leave me daddy. I am scared…” I am grateful that she gently slipped away without knowing or fearing what lies beyond…
I wonder whether she is around us? I wonder if she is peaceful and happy? I wonder if she misses us as desperately as we miss her.
Mothersday 2012
Yesterday a friend of mine celebrated her 60th birthday. Her daughter posted a beautiful letter on her FB page. Tears started trickling down my cheeks. I will never receive another birthday card or wish from Vic. I will never celebrate another Mother’s Day with Vic and neither will her boys!!
Day 22 has finally arrived. Day 21 dragged on and on… I waded through a haze of misery today. Jared had an horrible day. I could see he had cried.
Jon-Daniel has a friend sleeping over. He is a young boy of 14 who lost his dad to a drug overdose a year ago. I asked whether he had been for counselling. He said he had but that it had not really helped.
“I had to get over it by myself” this old soul said.
“The shrink kept telling me I must forgive my dad. I hated my father for using drugs. So I stopped going. He wasn’t listening to me so there was no point…”
I have to travel to an exhibition in the UAE from the 16th – 21st of February. Upon my return the boys and I will go and see the Hospice psychiatrist again. I think we would have worked through enough grief to be able to cope with this part of our journey.
Children are so fragile. On the surface they appear to be coping yet the pain lies shallow…
Last night Jon-Daniel cried. Today Jared battled to breathe.
I am cautiously optimistic that we have managed to stop the bleeding ulcer and that the new medicine regime has the vomiting under control. Vic is still running a fever, her BP is dropping and her heart rate has stabilized in the 110’s. She appears to be more stable than she has been in a couple of weeks.
This morning, after I washed her and changed her pyjamas she said “Mommy, I would like to go to the supermarket today…”
“Cool, what do you want to buy?” I asked
“Tippex (correction liquid) for the boys and Stilpain and Syndol (Tablets)” she said.
“Okay….” I said
“But I think you will have to drive Mommy… I don’t think I should be driving!” Vic said
This incredible young woman just does not know how to die! Vic had a good breakfast this morning. Vic has not eaten since Christmas!
The boys are fleeing home. Jon-Daniel has spent the past day and a half at Esther and Leon’s. Jared went to his Dad’s. I wish I too could flee. For the first time in my life I have come to understand why families place their dying loved ones in hospital of in a Hospice In-Patient unit. The waiting is gruelling and heart wrenching. The rollercoaster of dying is horrific!
I previously researched the “length of dying”.
The Journey Begins: One to Three Months Prior to Death
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.
#1: Ask For Forgiveness
#2: Offer ForgivenessTask
#3: Offer Heartfelt ThanksTask
#4: Offer Sentiments of Love
#5: Say Goodbye
The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
One to Two Weeks Prior to Death
Mental Changes
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
Physical Changes
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
The body temperature lowers by a degree or more.
The blood pressure lowers.
The pulse becomes irregular and may slow down or speed up.
There is increased perspiration.
Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
Speaking decreases and eventually stops altogether.
Journey’s End: A Couple of Days to Hours Prior to Death
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes”breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.
Delusions and/or hallucinations (believing and/or seeing things that are not real)
Uncharacteristic speech – may be really loud or soft, very rapid or slow
Fluctuating mood swings
Sleep disturbances – insomnia or reversed sleep cycle
Abnormal activity – body movements may be increase or decreased, very fast or slow
Terminal Restlessness
Terminal restlessness is a particularly distressing form of delirium that may occur in dying patients. It is characterized by anguish (spiritual, emotional, or physical),
restlessness, anxiety, agitation, and cognitive failure.
Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience, but if a patient is dying with terminal restlessness, her death can be anything but comfortable and peaceful.http://dying.about.com/od/symptommanagement/a/delirium.htm
Vic is on massive dosages of medication. She is peaceful now.
On Monday, the 14th, Jon-Daniel will receive his school colours for academic achievements. Vicky is determined to attend the ceremony. We will find a way of getting her to the school to witness this achievement. I believe it is the last goal she has.
Vic and her pride and joy, Jon-Daniel 4.1.2013
So despite me saying that Vic does not know how to die she is actually having a textbook death…
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 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.
Today was an horrible day. Dr Sue spent a lot of time with Vic. Siza (Hospice Nurse) was here too.
Vic’s BP is elevated and her heart rate fluctuates between 115 and 120. Her breathing is laboured. She appears to be a little jaundiced. Sue says the vomiting is due to the kidney failure.
Tomorrow we will try and run some Perfalgan intravenously. If only her veins were strong enough to tolerate an IV drip…
Over the past 10 years I have seen my child suffer so much indignity and indescribable pain. I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks. I have wept before God and prayed for Vic to die. I begged God to take away her suffering.
I advocated the right to die with dignity.
Vic has been in the care of Hospice for the past 3 months. In this time Vic has been given a new lease on life. Hospice cannot change the prognosis but they have given Vic quality of Life. For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening. She completed her photo albums.
Vic is in renal and hepatic failure. Her tissue is horrendous. Her pain is under control! As and when symptoms surface, Vic’s medication is adjusted. She is treated with compassion and respect. Her wish is the teams command….
As the situation is now I am so grateful that my child is alive. I treasure every breath that she takes. We chat, laugh and cry. We dream of going to Italy in 2013.
So given the situation now what would I advocate – The right to die with dignity or the right to live?
I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end. If it remains as great as it is now of course I want her to live. But it is key that Vic is allowed to live with Dignity!
As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person. It is not for family or physicians to play God. The patient has to be the only decision maker.
I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.
We all have the right to Live with Dignity. There is a huge difference between breathing and living…
It has been a crazy week. Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles. I have not had time to blog or read all the blogs I am following.
Vic has had a reasonable week. I can see her getting weaker every day. At night I give Vic a Pethidine, Zantac and Buscopan injection. The Pethidine makes her sleepy. During the day she is able to tell me she needs an anti-nausea injection. At night the drug-induced sleep does not allow her the luxury of early warning. Vic projectile vomits every day of her life!
Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups. I fear she will fracture ribs and vertebrae if we are not able to control this quickly. I have started giving her antihistamine tablets. Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.
Her arm is still very inflamed and painful. We are now on the 3rd round of antibiotics. The tissue in her derriere is very poor. It is lumpy and bruised. It is becoming more and more difficult finding good tissue where I can inject her.
Emotionally it is really a difficult time. Vic is spending as much time with the boys as possible. She is doing a lot of what appears to be “lasts”….
It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family. Our gifts are not as extravagant as other years. Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.
Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”
“No problem angel. I’ll switch the kettle on.” I said
“I will be back in a minute” she said
I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….
I went through to her room and the poor baby had fallen asleep on her bed…
Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.
He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.
Just before 01:00 am Vic shuffled into my TV lounge.
“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”
We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)
The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.
It was a perfect day.
Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.
All the grandchildren wanted to stay.
Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.
Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)
Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.
Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.
“I miss you too Vic. How are you feeling?” Jnr asked
“I am battling Boetie (Little Brother) Vic said
“We are coming to visit in April then I will see you Vic”
“I don’t know if I am going to make it to April” Vic said
“Just hang in there Vic. It is not that long to April…” Jnr consoled her
“I know but I am tired. I am just missing you” Vic cried
“I will fly over for a weekend. I want to see you again” Danie promised
Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16th birthday. It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.
I know this will more than likely be another last for Vic.
Vic's Final Journey 