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.
A year ago I posted this. Yesterday we had visitors. We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta. I sat looking at all the happy faces and remembered Vic clinging to Danie. I remember the fear in her eyes. Her desperation. Her final Sunday.
Vic was desperately trying to finish the cards she had bought the boys. She wanted to write the perfect words. Words that would reach out to her boys from the grave. I remember my fear and frustration. Frustration that the cards had not been written and fear that it would not get done. So much pressure in death…
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…”
It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks. The patients have controlled pain and symptoms. Many caregivers are also looking for a dumping ground.
Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..
It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.
It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.
Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?
Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?
They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?
I read the post of an amazing woman who is suffering from congenital heart failure. She is in so much pain. I cried when I read her post. http://thedrsays.org/2012/11/08/ She replied to a question whether better pain control was possible….. “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”
I thank God that we are able to make a difference!
“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell
There are times in the life of a terminally ill person that death is no longer the enemy but rather a friend. Vic too surpassed all anniversaries and eventually I though she was invincible. But with invincibility comes pain, indignity, despair, depression… Thinking of you Mike in your brave journey.
A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.
Vic basking in the winter sun!
Sunday was an amazing day. Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.
Lorraine moved a chair into the sun for Vic. Vic sat basking in the winter sun sipping lots of coffee. In true form, Vic on her occasional good day, pulled the dam from under the duck. She was like a little jack-in-the-box. Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.
Vic sobbed from pain and my poor sister wasreduced to tears. She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!
Vic dozed on and off but kept waking from the pain. Maybe she took some extra painmeds because she seemed disoriented? Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…
Sunday afternoon the boys came home after spending the weekend with their Dad. Danie took Jared and Kirsten, (Jared’s girlfriend), to church. Vic kept trying to get out of bed. She is so darn stubborn. She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication. She kept getting out of bed. She would just not stay in bed.
I got so angry with her that I said I would fetch Jared from church. I needed to remove myself from the situation. Lorraine said “let me stay with Vic” and I said “No! Come with me”
Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…
At home she was lying in a crumpled little heap full of blood and screaming from pain. Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her. Vic went hysterical when I said I was phoning an ambulance.
“No Mommy, No!!! No ambulance! No ambulance”
We agreed that we would try to get her to hospital in my car. Jared half carried her out to the car and then the drama began. We could not swing her legs into the car! She was screaming with agony.
I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed. Eventually we repositioned Vic in the car. Jared sat behind her and cradled her in his arms. The ambulance escorted us to the hospital.
At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept. Vic screamed and screamed with pain! From 21.30 to 03:00 they x-rayed and scanned Vic. Most of the x-rays were done in the Trauma section. Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.
Vic in ER
If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!! Mommy!! Mommy help me!!!”
The diagnosis – “impacted fracture of proximal metaphysis of right humerus”. Vic was admitted to the orthopedic ward and scheduled for surgery today. The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm, too great, for him to “pin” the arm. So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own. She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do? Pain control, bed rest… Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports??? I only picked it up when I read the reports this afternoon!!!! I had to report it to the nursing staff!
I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?
I am so angry with myself. This happened because I got angry with Vic. I should have stayed with her and not reneged my Caregiving duty. I should have had been there to bulldoze my stubborn child into remaining in bed. My temper has caused Vic endless, unbearable pain. Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this! I will never forgive myself for this!
Well with the bad comes the good as well. We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day. Actually, the whole week! Problem solved. She is too sore to move… And will more than likely still be in hospital on Wednesday.
The nurses just changed her bed linen and she screamed with pain! How are we going to take care of Vic at home? My sister offered to come through but two qualified nursing staff could not move her without causing major distress. She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc
For the first time, ever, I am at a loss. I am so tired. I don’t know what to do anymore.
Someone wrote a poem for me. I am grateful for the hand of comfort that was extended by a stranger. This stranger happens to be ill and suffer debilitating pain.
On the 17th of May 2012 I posted this. It was my first blog post ever. I was however something I had written ion the 27th of November 2003
How could I ever think that I want my child back? It is over. Vic is at peace and pain free. The pain has transferred to me…
My dearest child
My heart breaks when I look at you. Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain. The morphine dulls your dark eyes…
It is so difficult seeing you in so much pain…the times when you are bent double from pain. My heart breaks when I see how you are still trying to care for your family. If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs… I see the helplessness in Colin’s eyes when he looks at you. It is soul destroying!!!
It is at times like this that I cry out “How much longer God? When will her suffering end?” But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”
With the obstruction I fear that you will not make it. The morphine aggravates the situation! When will you develop another fistula? It is only a matter of time. How time do we have left?
I wish I could just hold you and protect you against the pain and death. If it was a bullet I would take it for you but how do I protect you against your own body? How can your body betray you like this?
In my mind’s eye I see you lying on a bed, strapped in,poison flowing through your veins… You are dying
In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.
Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.
We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.
Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….
We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…
My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…
One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”
“Of course I love my family! Why are you asking such a question?” I replied
“Because you are never home….”
I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.
So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!
In 2009 my Dad came to live with us. He suffered from Alzheimer’s.
Dad and I
Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.
I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.
I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.
It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.
My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.
I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.
Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.
My life centred round my sick child and family.
Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.
How amazing is this?
If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….
I have flu. I get ill once in 5 years and I am a ninny. I do not handle pain and discomfort well… I whinge, moan and groan until I am better…
This time I have embraced my flu. I can stay in bed and there is no pressure for me to get up…. I can just lie in bed with my eyes closed and it is okay! For the first time since my precious child died I don’t have to communicate, talk or pretend. I can just be sick!!!! I have spent four days in bed not having to talk, smile or pretend….
I am sick to the core of my soul – not only from the flu but from heartbreak. I was able to feel the loneliness and emptiness that permeates my life since Vic died. For four days I have not had to smile or live – I could lie in bed and hope to die.
There are days that I really do cope. There are days that I am able to smile and laugh. Most of the time I live a lie…
I have made peace with the fact that my precious child’s suffering is over. I know that never again will she fracture vertebrae from vomiting, scream from pain, whimper because she does not have the strength to scream… But all I have done is learnt to accept that Vic was amputated from my life. I still have to learn to live without the amputated part of my body; the pain of the missing part of me continues to taunt me…
I miss my child so much! I want to love and hold her. I wish I could have protected her from the ravages of Osteogenesis Imperfecta and doctor error! No, I don’t have guilt…I did everything I possibly could for my baby girl. I just desperately miss her! I miss her company.
I am hoping that the pain will pass…I do remember the beauty of my precious Vic all the time. The wonderful mother and daughter that she was; kind and gentle; incapable of malice…Her beauty will remain with us for ever.
Tomorrow I will get out of bed and carry on living.
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 have sunk to a new low this weekend. I had every intention to attend church this morning. I woke up with tears streaming down my cheeks. I must have had dreamt of Vic. I knew that I could not handle the gentle arms and words of sympathy at church.
Maybe next weekend…
I would like to share this wonderful writing from a Facebook site – The Grieving Parent. It articulates my feeling beautifully.
I had a grief attack yesterday and again this morning….
After my daughter’s death, I learned that the first year’s grief doesn’t flow neatly from one stage to the next; it has multiple patterns, fluctuating cycles, lots of ups and downs. First-year grief will surprise you in many ways, but here are a few things you can expect.Expect sudden “grief attacks.” Practical matters demand attention in early grief when we are the most confused and least interested in things we used to care about. We must decide how to get through each new day. Some days, getting out of bed may take all the energy we have. Trips to everyday places like the grocery store feel so different. In my case, simple things like seeing my daughter’s favorite cereal on the store shelf brought immediate, excruciating pain.I call these unexpected reactions “grief attacks.” And unlike the response we would get if we had a heart attack while shopping, those around us don’t know what to do. We get good at hiding our pain, at postponing grieving for a more appropriate place, a better time.Expect exhaustion and disruption. Early grieving is perhaps the hardest work you will ever do. It is common to have difficulty sleeping, changes in appetite and blood pressure, tense muscles that are susceptible to strains, a weakened immune system.Many bereaved parents return to work, school, or other activities feeling vulnerable, less confident about their capabilities, less able to concentrate, distracted by memories, and flooded with emotions that disrupt thinking. For others, work is the only place they are able to concentrate- focusing on tasks helps take their mind off their loss for awhile.Those around us may have unrealistic expectations as we return to work or school. When one mother whose only child had died returned to work, her supervisor greeted her by saying: “I’m sorry about your loss but I want to talk to you about improving your work performance.” Expect to be stunned by the ineptness, thoughtlessness, and discomfort of some people, and to be thrilled and deeply touched by the kindness and sensitivity of others. Sometimes those you expect to support you the most can’t or won’t meet your needs, while others you weren’t that close to before reach out unexpectedly.Expect ongoing “echoes.” We experience so many emotions after our child dies. We may feel relief that our child is no longer suffering, then feel guilty about being relieved. For a time we may be unable to feel much at all. While learning to live with the hole in our heart and fatigue in our body, other responsibilities beckon. We must file insurance claims, pay bills, write thank-you notes, decide what we want to do with our child’s possessions, and on and on.Just when we think everyone surely has heard of our loss by now, the reality of our child’s death echoes back to us. A call comes from the dentist’s office about scheduling her a checkup, or we run into our child’s old friend who just moved back to town. Once again we must tell our story, respond to someone else’s pain, experience fresh waves of grief. Knowing certain events are coming, such as seeing the grave marker or reading the death certificate or autopsy report, does not prevent us from hurting. These are tangible reminders of the reality of death, while part of us still hopes it’s all been just a bad dream.Our child’s death causes us to re-examine our beliefs about the Universe, God, and how the world works. Your faith and belief system may comfort and sustain you during the first year or you may feel angry and disconnected from it. Remember that it is okay to question. You may be drawn to people who have experienced a loss like yours and can understand some of your feelings and questions. This is one reason many people in early grief find comfort in bereavement support groups. But remember that no one can ever totally understand your grief, your questions, and what your child means to you. Like all relationships, each person’s grief is unique and complex.During early grief, you may want to stay busy all the time, avoiding painful emotions and the exhausting work of grief, hoping time will heal you. There’s no set schedule and no recovery period for grief. But time alone does not heal- it’s what we do with the time that counts. Take the time you need to do your grief work. But also take time away from grieving to do things you enjoy, to rest and replenish yourself.When our child dies, our hoped-for future dies, too. Beginning in this first year, and continuing on from there, living with your loss means taking on new roles, new relationships, a new future- without forgetting your past. Sometimes, life takes surprising turns. Before my daughter’s death, I never would have imagined I would become so involved in grief support. It wasn’t part of my “plan.” Confronted with loss, we can weave the strands of our past into a new, meaningful future we never would have planned to live. Doing so is a conscious choice.Getting through the first year of your grief is like winding a ball of string. You start with an end and wind and wind. Then the ball slips through your fingers and rolls across the floor. Some of the work is undone, but not all. You pick it up and start over again, but never do you have to begin at the end of the string. The ball never completely unwinds; you’ve made some progress.My daughter’s spirit and our continuing bond of love gives me strength each day. May your child be there to help you during this painful first year, and in all the years to come.Jon-Daniel and his brave Mommy – January 2013
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.
My Angel Child
So many of my cyber friends have lost their children…these women and men have supported and guided me on my journey with Vic and held my hand in the early days of my grieving and heartache… They KNOW my pain. I found this poem on a bereavement site and would like to share (and dedicate) it to all the angel moms and dads out there. Thank you for your support, advice, encouragement and love.
My other cyber friends have done their best to understand and love – thank you all. I appreciate your compassion and continued support. I pray that you will never experience this pain. I pray that you will never become Angel Parents…
Angel Moms
We have shared our tears and our sorrow, We have given encouragement to each other, Given hope for a brighter tomorrow,
We share the title of grieving mother.
Some of us lost older daughters or sons, Who we watched grow over the years, Some have lost their babies before their lives begun, But no matter the age, we cry the same tears.
We understand each others pain, The bond we share is very strong, With each other there is no need to explain, The path we walk is hard and long.
Our children brought us together, They didn’t want us on this journey alone, They knew we needed each other, To survive the pain of them being gone.
So take my hand my friend, We may stumble and fall along the way, But we’ll get up and try again, Because together we can make it day by day.
We can give each other hope, We’ll create a place where we belong, Together we will find ways to cope, Because we are Angel Moms and together we are strong!
Two weeks after our arrival in Johannesburg we celebrated Vic’s 3rd birthday. Tienie drove my car up and was able to be with us for Vic’s birthday. By her birthday Vic had 38 fractures.
The day of Vic’s birthday Tienie and I went for a drive looking for an ice-cream parlour as a birthday treat for her. Vic was sitting on the backseat. Cars did not have safety belts in 1977… a dog ran across the road, and Tienie swerved out to avoid running it over….. Vic fell off the back seat.
I immediately knew her little arm was broken.
We drove to the nearest hospital. It was Vic’s first visit to an Emergency Room in Johannesburg. There was a long queue of patients waiting to be seen. I completed the paperwork and we sat down for the long wait.
Vic being a toddler we got moved to the front of the queue. A tall, tired looking doctor took down Vic’s medical history.
“Treatment?” he asked…
I remember thinking “Duh….. You know there is no treatment.” But, then a spark of hope flamed up and I asked “Do you know of treatment for Osteogenesis Imperfecta?”
“No” he said
“Vicky is having experimental homeopathic treatment. The physician treating her is Professor Majorkenis” I said
He looked at me and took out a red pen from his pocket. In huge red letters he wrote “Homeopathic treatment” across the page. He drew two lines under the words…
In a terse voice he instructed the nurse to take us through to X-rays. There was no radiologist on duty, and we had to wait for the call-out radiologist to arrive. I eventually went through to the ER and asked the doctor whether Vic could have something for the pain. It was 2.5 hours after the event, and she was crying from the pain.
“She cannot have anything for pain. She may have to go to the theatre. But then you know that don’t you?” he asked in a very sarcastic tone of voice!
I went back to X-rays seething but knowing that what he said was true. If the bone had dislocated Vic would have to go to theatre.
By the time I got back to X-rays the radiologist had arrived and was busy setting up the machine. Vic’s cries of pain are still etched into my heart and brain when her little arm was positioned on the table. Tears ran down my cheeks whilst I kept telling her that if she kept still it would be over soon.
The X-ray showed 3 clean fractures. No surgery would be necessary.
We went down to the ER, and the doctor started applying the plaster-of-paris to Vic’s arm. She was sobbing with pain.
I absolutely lost it.
“If you have a problem with the fact that my child is having homeopathic treatment you take it out on me. “
He just fixed his tired eyes on me and said nothing.
“Do you know what it feels like when your child is sentenced to death and there is no appeal system? Western traditional doctors, like you, have offered us no hope what so ever! This Homeopath is prepared to TRY. That is a hell of a lot more than what doctors like you are prepared to do! ”
His eyes were big and he had stopped working on Vic’s arm by then.
“Now, if you have a problem treating my child with the care and dignity that she deserves I suggest you get someone else in here to take care of her!”
He drew up a syringe with some pain medication and said “This will just sting a little, but it will help for the pain…”
He gave it a couple of minutes and then completed the plaster-of-paris process.
Without a word of apology he wrote a prescription for pain medication. He curtly said “Take her to her orthopod in three weeks” and walked out of the cubicle…
I lodged a formal complaint against him the following day, but nothing ever came of it.
Was I surprised? Hell no! Homeopathic or alternative medicine was satanic in 1977 in South Africa! We would go to hell for it any way…
On Vic’s 3rd birthday her fracture count went up to 41…
A glimpse into Vic’s life and soul…a journal entry she made on the 24th of March 2003
“And so it begins. Tomorrow is the first surgery of this year. My poor children. My family. This is so difficult. I am panic-stricken, but not about the surgery. I promised Jared we would have a nice school holiday. It’s his first holiday and he was so excited about staying home with his mommy. I’m his mommy…. Do you know that? It doesn’t always feel like it. Do you understand? Do you know what I mean? I’m sure you know what I mean. It doesn’t always feel real. I carried them. I gave birth to them but there are days when they don’t even feel like my children. What if I die tomorrow? Are they going to remember me? What have I really meant in their lives? Everyone is so amazing about my bone disease that I sometimes feel smothered by their love. Does that make sense? Does that make me ungrateful? I feel so guilty. People have been unbelievable. I never knew that there were so many special people in this world. I have been carried on the wings of their prayers.
My poor children. I already miss them. I know this sounds jumbled but that is how I’m feeling. I feel like there is a hole in my stomach. I never slept last night. Again. I always think that Col and I will be closer or at least loving the day before my ops because everyone else is. But it never is that way. People are so amazing. Everyone phoning and wishing us well and saying prays for us, but then I don’t get to spend any time with the children or Colin. We land up shouting at the kids, because they keep trying to get our attention. We try to eat and the phone rings. We try to bath and the phone rings. Colin asked me to send off some documents, to the auditors and I promised I would do it this morning and by the time he got home I still had not done it, which already irritated Col. So I sent them off while Col and the boys ate dinner and my food stood getting cold. What if I die tomorrow? I wouldn’t even have enjoyed my last dinner with my family.
Mom does placements in East Africa and I help out by making the phone calls and making appointments for the interviews. (I get paid for it, very well at that). And I really enjoy doing it. It is something that I know I am good at. I am an organiser by nature. I become obsessive with the details and the smaller details to make it go smoothly. The only thing is that mom only found out last night that we needed to do 6 placements and the guys from East Africa are coming on Monday and mom still needs to do the filtering process before they arrive. Today is Wednesday. Tomorrow is hospital. Mom starts interviewing Friday. She is interviewing on Saturday as well. Mom always says if you want something done give it to a busy person. But today, I feel swamped. I like things in little neat packages. Not disorganised. I specially kept Jon-Daniel home because of me going to hospital and I did not get to even have a game of fingerboard with the children. I only found out on Tuesday that I was being operated on Thursday. I haven’t packed yet. Col and I are bickering, because I’m not getting to him and today he had a very important meeting with his boss. And we couldn’t get around to talk about it. It was about his package. We are really battling financially. But that’s another story. (I know you know what I’m talking about. We all go through it at some point in our lives.) I was so proud of Colin. To approach his boss for an increase was extremely difficult for him. It has taken him 4 months to do it. Colin is very proud. I think most men are, but Colin comes across as very blasé, which he really isn’t.
I become tearful when I think of going back to hospital. It is so difficult for me and people don’t understand that I’ve built up such a resistance to hospital. What really hurts is that I spend so much time in hospital that people don’t come and see me especially if I’m only in for a few days. Life just keeps going on. Nothing changes. It was the same after my father died 3 years ago. I so wished life would stand still and mourn with me.”
Reposted from http://sickocean.wordpress.com/2013/02/16/wings-made-of-stones/ – Aarthi is a very talented poet who manages to capture the essence of life and suffering. Thank you Aarthi for your beautiful words.
she was forever alone
in her endless fights
through life and times
she stood where
she always was
embedded in earth
clad in stones
she was buried half
under the ground
in pain, in suffocation
her strongest wish was
to fly ever high
free herself and
reside in the sky
forever to come
her helplessness grew
her pain deepened
and her struggles rose
to new levels
deep within her soul
and she flapped
ever so hard
ridding herself of all the mud
and all that was keeping her
away from the vast blue above
and when she did come up
she realized that
her wings they were
made up of stones
of mud, of metallic bones
and she realized that
through years perhaps
or because of her birth
she was defined as
a woman made of stones.
i know this poem has a sad end.. and i usually prevent myself from writing this kind, but then the irony of life sometimes is that at some point in our struggles, and very rarely so, it does happen that we might be limited by what we have made ourselves or what we were born with… certain dreams tend to be impossible, certain hopes are meant to be thrashed… and though it is not the end of it, it is certainly an important aspect of life to be realized. http://sickocean.wordpress.com/2013/02/16/wings-made-of-stones/
I know Vic is flying, feather light and unrestrained by pain. Fly Angel Child!!
Vic's Final Journey 