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…
The subcutaneous driver is down. By this morning it was obvious that Vic’s tissue was just not holding up.
On Friday morning I removed and repositioned the driver. Serum leaked out of the syringe hole for almost two days. The area is inflamed, hot to the touch, swollen and painful. Cellulitis has struck! Yesterday evening I repositioned the driver again and this afternoon I removed it. So I will now administer the 150mg of morphine and the 60 ml Stemitil IM. Vic’s derriere is black and blue and lumpy from the injections.
Where to from here? How are we going to control this poor child’s pain? I can only think that they will have to fit a central line… Will they do it? She will have to go into theatre for that! There is absolutely no way I would allow the procedure without sedation! Central lines are very susceptible to infection and sepsis.
Poor baby. She is so ill.
Today I said to my BFF, Gillian, that it is almost as if, now the decision has been made regarding “her” Hospice, she is at peace. I sat next to her and thought to myself “I wonder if she will make Christmas?” But then I thought to myself “Wait a minute…This is Vic…She bounces back!”
Tomorrow her doctor will come and see her, she will go onto a course of antibiotics and bounce back again. Then we will decide how to deal with her pain…
There are several types of central venous catheters:[1]
Non-tunneled vs. tunneled catheters
Non-tunneled catheters are fixed in place at the site of insertion, with the catheter and attachments protruding directly. Commonly used non-tunneled catheters include Quinton catheters.
Tunneled catheters are passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. Commonly used tunneled catheters include Hickman catheters and Groshong catheters.
A port is similar to a tunneled catheter but is left entirely under the skin. Medicines are injected through the skin into the catheter. Some implanted ports contain a small reservoir that can be refilled in the same way. After being filled, the reservoir slowly releases the medicine into the bloodstream. An implanted port is less obvious than a tunneled catheter and requires very little daily care. It has less impact on a person’s activities than a PICC line or a tunneled catheter. Surgically implanted infusion ports are placed below the clavicle (infraclavicular fossa), with the catheter threaded into the right atrium through large vein. Once implanted, the port is accessed via non-coring “Huber” needles inserted through the skin. The health care provider may need to use topical anesthetic prior to accessing port. Ports can be used for medications, chemotherapy, TPN, and blood. As compared to CVC or PICC catheters, ports are easy to maintain for home-based therapy.
Ports are typically used on patients requiring only occasional venous access over a long duration course of therapy. Since the port must be accessed using a needle, if venous access is required on a frequent basis a catheter having external access is more commonly used.
PICC line
A peripherally inserted central catheter, or PICC line (pronounced “pick”), is a central venous catheter inserted into a vein in the arm rather than a vein in the neck or chest.
Technical description
Triluminal catheter
Depending on its use, the catheter is monoluminal, biluminal or triluminal, dependent on the actual number of lumens (1, 2 and 3 respectively). Some catheters have 4 or 5 lumens, depending on the reason for their use.
The catheter is usually held in place by an adhesive dressing, suture, or staple which is covered by an occlusive dressing. Regular flushing with saline or a heparin-containing solution keeps the line patent and prevents thrombosis. Certain lines are impregnated with antibiotics, silver-containing substances (specifically silver sulfadiazine) and/or chlorhexidine to reduce infection risk.
Specific types of long-term central lines are the Hickman catheters, which require clamps to make sure the valve is closed, and Groshong catheters, which have a valve that opens as fluid is withdrawn or infused and remains closed when not in use. Hickman lines also have a “cuff” under the skin, to prevent bacterial migration[citation needed] and to cause tissue ingrowth into the device for long term securement.
Indications and uses
Indications for the use of central lines include:[2]
Monitoring of the central venous pressure (CVP) in acutely ill patients to quantify fluid balance
Central venous catheters usually remain in place for a longer period of time than other venous access devices, especially when the reason for their use is longstanding (such as total parenteral nutrition in a chronically ill patient). For such indications, a Hickman line, a PICC line or a portacath may be considered because of their smaller infection risk. Sterile technique is highly important here, as a line may serve as a porte d’entrée (place of entry) for pathogenic organisms, and the line itself may become infected with organisms such as Staphylococcus aureus and coagulase-negative Staphylococci.[citation needed]
Triple lumen in jugular vein
Chest x-ray with catheter in the right subclavian vein
The skin is cleaned, and local anesthetic applied if required. The location of the vein is then identified by landmarks or with the use of a small ultrasound device. A hollow needle is advanced through the skin until blood is aspirated; the color of the blood and the rate of its flow help distinguish it from arterial blood (suggesting that an artery has been accidentally punctured), although this method is inaccurate.[citation needed] Ultrasound probably now represents the gold standard for central venous access and skills, within North American and Europe, with landmark techniques are diminishing.[3][4]
The line is then inserted using the Seldinger technique: a blunt guidewire is passed through the needle, then the needle is removed. A dilating device may be passed over the guidewire to slightly enlarge the tract. Finally, the central line itself is then passed over the guidewire, which is then removed. All the lumens of the line are aspirated (to ensure that they are all positioned inside the vein) and flushed.[citation needed] A chest X-ray is typically performed afterwards to confirm that the line is positioned inside the superior vena cava and, in the case of insertion through the subclavian vein, that no pneumothorax was caused as a side effect. Vascular positioning systems can also be used to verify tip placement during insertion without the need to a chest X-ray, but this technique is not yet a standard of practice.
Videos are available demonstrating placement of a central venous catheter without[5] and with ultrasound guidance.[6]
Complications
Central line insertion may cause a number of complications. The benefit expected from their use therefore needs to outweigh the risk of those complications.
Pneumothorax
Pneumothorax (for central lines placed in the chest); the incidence is thought to be higher with subclavian vein catheterization. In catheterization of the internal jugular vein, the risk of pneumothorax can be minimized by the use of ultrasound guidance. For experienced clinicians, theincidence of pneumothorax is about 1.5-3.1%. Some official bodies, e.g. the National Institute for Health and Clinical Excellence (UK), recommend the routine use of ultrasonography to minimize complications.[7]
All catheters can introduce bacteria into the bloodstream, but CVCs are known for occasionally causing Staphylococcus aureus andStaphylococcus epidermidissepsis. The problem of central line-associated bloodstream infections (CLABSI) has gained increasing attention in recent years. They cause a great deal of morbidity and deaths, and increase health care costs. Historically, a small number of CVC infections were considered an acceptable risk of placing central lines. However, the seminal work by Dr. Peter Pronovost at Johns Hopkins Hospital turned that perspective on its head. Additionally, the Institute for Healthcare Improvement (IHI) has done a tremendous amount of work in improving hospitals’ focus on central line-associated bloodstream infections (CLABSI), and is working to decrease the incidence of this particular complication among US hospitals.
The National Patient Safety Goals NPSGs and specifically NSPG 7.04 address how to decrease infections.[8] The NSPG 7.04 has 13 elements of performance to decrease CLABSIs.
The 13 Elements of Performance (EPs):
EP 1 & 2 deal with educating staff and patients about Central Vascular Catheters and their potential complications
EP 3 specifically directs facilities to implement policies and practices to reduce CLABSI
EP 4 & 5 are about how to perform surveillance for Central-Line Associated Bloodstream Infections (CLABSIs)
EP 6-13:
– Institute for Healthcare Improvement (IHI) bundle
4. Selection of Optimal site for Central venus Catheter (CVC)
5. Daily review of ongoing need for CVC
– Disinfection of intravenous access ports before use
National Patient Safety Goals require documentation of a checklist for CVC insertion and Disinfection of intravenous (IV) access ports before use (scrub the hub). Some literature has suggested the use of a safer vascular access route – such as intraosseous (IO) vascular access – when central lines are not absolutely necessary (such as when central lines are being placed solely for vascular access). Infection risks were initially thought to be less in jugular lines, but this only seems to be the case if the patient is obese.[9]
If a patient with a central line develops signs of infection, blood cultures are taken from both the catheter and from a vein elsewhere in the body. If the culture from the central line grows bacteria much earlier (>2 hours) than the other site, the line is the likely source of the infection. Quantitative blood culture is even more accurate, but this is not widely available.[10]
Generally, antibiotics are used, and occasionally the catheter will have to be removed. In the case of bacteremia from Staphylococcus aureus, removing the catheter without administering antibiotics is not adequate as 38% of such patients may still develop endocarditis.[11]
To prevent infection, stringent cleaning of the catheter insertion site is advised. Povidone-iodine solution is often used for such cleaning, but chlorhexidine appears to be twice as effective as iodine.[13] Routine replacement of lines makes no difference in preventing infection.[14]
Rarely, small amounts of air are sucked into the vein as a result of the negative Intra-thoracic pressure and insertion technique. Valved insertion devices can reduce this risk.[citation needed] If these air bubbles obstruct blood vessels, this is known as an air embolism.
Hemorrhage (bleeding) and formation of a hematoma (bruise) is slightly more common in jugular venous lines than in others.[9]
Arrhythmias may occur during the insertion process when the wire comes in contact with the endocardium. It typically resolved when the wire is pulled back.[citation needed]
Vic has had an absolutely amazing week. Her pain has been beautifully controlled. We have had severe bouts of vomiting and cramping but compared to a month ago – it was a walk in the park!
The Jurnista is definitely working! I have an appointment with Prof Froehlich on Tuesday, the 14th of August, and she will then give me feedback on Hospice. I was completely prepared to tell her I don’t need Hospice on any level anymore. Vic’s pain is so well under control that I can handle her care with no assistance or problems at all.
My baby sister(she is only 55 years old) Lorraine, spent some time with us over the long weekend in-between umpiring at the South African National Netball Tournament. She was amazed at how well Vic looked. (Remember she last saw Vic when she fell at the end of June). Vic has been amazing. This week she has been far more mobile. She started thinking (arguing) about driving again….. The first time in months!
This morning Vic went to breakfast with her friend Angela. She was so excited.
Two hours later Vic literally shuffled into the house. “Mommy I broke my back!”
My heart stopped.
On a certain level I am angry. I am angry that Vic wasn’t more careful. I am angry that I slipped into a false sense of security! I am angry that the Jurnista is masking the pain so well that Vic is pushing her body’s boundaries.
Conclusion: 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.
Danie and I with a happy and carefree Vic at Mabalingwe!
Vic and the boys before she had her blotched back operation
I often read about a child that had been ill for a long time and the parent being in denial. Death is never discussed. I know it may take months or even years for Vic to die. Maybe, with a bit of luck, I will die before she does. But when either one of us dies there will be nothing unspoken. Vic and I talk a lot. We talk about many things. If ever I think of something that I am not certain of, I ask her immediately.
I have fully accepted that Vicky is always walking the tightrope even when she is doing great. It is the nature of the beast and the beast can take you by surprise.
We have spoken about heaven and what a peaceful, healthy place it will be. We often speak about meeting again in heaven and Vic always says she is not scared of dying. Vicky feels terrible about leaving us behind. She worries about leaving us all behind. She worries about how sad we will be. I wish I knew what to say to truly put her mind at peace and to let her “let go”…
It was very difficult to first raise the question of death. It started approximately 8 years ago with a tentative “Sweetie, is all your paperwork in order before you have this surgery?” and progressed to discussing and shopping for 18th birthday gifts, Confirmation bibles and 21st Birthday Keys. It was strangely “pleasant” going shopping with Vic. I knew that her mind was at ease having done the shopping. Maybe she will be around for these milestone events. Maybe not….. But Vic is prepared. She is far more prepared than I am. She has written letters to be read after her death. She has “special events” cards that I will give the boys when the occasion or need arises.
To arrive at the point, where we are, has been hell! No matter what age your child is, when you first find out that your child is terminally ill, your initial instinct is to shelter the child. (Regardless of the child’s age – the child will always remain the child!!) The parent’s first instinct is to leave no stone unturned. You watch the child like a hawk, looking for small signs of improvement or deterioration, looking for symptoms, hoping against all hope that the doctor made a mistake!
I analyze every ache and pain, hoping that the stomach cramps are merely side effects of the medication. I know when Vic is heading for a UTI; I know how her body reacts to different medications. Unfortunately there is no “Dummy’s Guide for the Parents of a Terminally ill Child”.
Professional counselling is available at a terrible cost. By the time your child is diagnosed or rather sentenced to terminal illness, hundreds and hundreds of thousands of rands has been spent on medical bills. Within two months of the new medical year the medical aid is exhausted….. The medication and treatment cannot stop regardless of the claimable amount left on the medical aid limits… I have said it before – morphine or counselling???? No contest! Morphine wins hands down. Now in a civilized world Hospice should enter the picture at this stage….. Unfortunately we live in South Africa and Vic does not have AIDS or cancer. I pray that she will find the peace that I know she does not have.
No-one in the world can live in so much pain for so long!
This weekend I saw raw resentment towards me in my little girl’s eyes.
We checked into Hospital on Saturday morning at 08:00. Vic was seriously peeved that she did not get a private room as per the doctor’s instruction. Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language. She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.
Then she started telling us about this wonderful neurosurgeon that she works for. She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down! Vic then said that she had decided no more surgeries…wow! Did this set the neighbour off! She took the moral high-ground and started telling us that we must have faith and God will heal Vic. Vic was in hospital because we keep asking God to heal her. We should only ask once and then have faith…
She laid hands on Vic when I went downstairs for a cup of tea. I would never have allowed it!!
Please don’t misunderstand me – I have nothing against religion. Religion is important. I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child. Jared said to me today “Oumie, I don’t want to be a Christian like that …”
I do not stand in judgement of anyone. It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin? As my friend Marlene used to say “Who died that you think you became God?” If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians. If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…
People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made. They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice. Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that? Surely love is unconditional? Through thick and thin?
I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…
Jared sat at hospital with us all day Saturday. He is old enough to want to do it! That young man adores his Mommy. Jon-Daniel copes in a different way. He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend. Jon-Daniel makes Vic laugh. Jared makes Vic coffee.
Two different boys with two different ways of coping and two different ways of expressing their love. Yet united in their love and despair for their mother.
Vic ended up going into theatre just before 19:00 Saturday night…she was starving!! Poor little poppet! I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre. HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays. He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta! I must add that he too had never had an OI patient as old as Vic. So Vic had two specialists operating on her little arm.
By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.
History was made Saturday. A doctor wrote on Vic’s file “Mother of patient to stay with her”! In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”. What a bright and intelligent young man he is even if he charged double medical aid rates.
Vic was however extremely angry with me because she was sent to ICU. Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward. She cannot be given the amount of opiates that she needs, for pain control, out of ICU.
I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control. (Thank you Google for the fact sheet). When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!” She cried. I saw the resentment in her dark, sad eyes when she looked at me.
Vic’s Humerus Pinned and Fixed
For once I did not care. I love my child and I will do anything and everything to spare her pain.
I have to find out which anaesthetic they used. The last two procedures at the Union resulted in terrible aggression in Vic. Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister. She told me exactly what she did and did not think of me. It was a horrific experience. I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.
Vic ended up spending 2.5 days in ICU. I never left her side but to go shower at home and take Jared to the urologist this morning. The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme. I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.
Well this is now behind us. We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm. That Vicky will get better and enjoy some Jurnista quality of life!
I want to blog on ICU’s and what we subject our loved ones to next. I am just too tired and emotionally drained to even attempt it today.
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed in 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.
I don’t know how much longer I can handle this. The chronic pain I am used to but this new pain is pushing all of us over the edge.
Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic… How nice is that!! But I cannot. I cannot leave Vic now. Nobody knows her body the way I do. It is too big a responsibility to hand over to anyone. She needs lots of personal help. Vic needs pain meds’ every four hours, day and night. If she misses med’s she breaks through her pain levels and then it is disastrous. What if she needs help during the night as she so often does? What if she vomits and needs me? No can do!! I cannot desert Vic. Until she breathes her last breath I will be by her side. No matter how long it takes.
Many years ago I promised Vic that I would not let her die alone.
When Jesus was praying in Gethsemane his disciples fell asleep on Him. I am so scared that I will fall asleep on Vic in her final hour. I don’t think Vic is near the end. I have been around dying people enough to know the signs. But she needs me now.
When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups. I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011. On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys. I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group. http://www.caring.com/home-care. The practical advice of caring for an AD patient was of immeasurable help. The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.
I just knew there would be solid, practical advice in the article.
Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”
Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”
Right on Carol. I don’t have time. My days are very long and I don’t get a lot of off-time. Last year Danie and I went for a walk every night. Sometimes the boys joined us. It was great and I miss it. But I have decided that I will start exercising today!
Volunteer for service to others. Carol Blackwell wrote: “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”
Carol you are weird. I don’t have time to sit and do anything. I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of… For many years I was very involved in working with the less fortunate. I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.” Done and dusted. One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival. Selfish – maybe… For now that is the way it has to be.
Do things you enjoy—you deserve it. Carol Blackburn wrote: “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “
Tick. I love my Children and grandchildren. I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck. I desperately miss my UK grandchildren. I am permanently miserable when I think of them. I miss them with every fiber of my body. Sometimes I am so weepy that I cannot even Skype with them.
I am so happy that Lanie and Tom have moved to Johannesburg. Now we see them and the girls on a regular basis. We spend a lot of quality time together.
Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…
Liza (the youngest daughter) and her husband have finished sailing around the world. I look forward to flying down to Cape Town to visit with them. As soon as Vic is able to cope without me we will fly off…
Vic finds the noise a little distressing. But the little ones know Aunty Vic is ill and are so good!
Carol is right. I enjoy having the grandchildren around and I deserve to have my grandchildren around me. Grandchildren are the joy of my life! And I love playing Cityville on Facebook.
Consider meditation/yoga. Carol wrote: “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”
Maybe one day when I have time… and the energy.
Don’t be a martyr. Carol wrote: “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it. Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “
“Is there someone who can come in for a few hours and let you take a break? Someone from church? A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”
My dearest friend, Gillian, wrote:”I would like to half your work and cares. Put you in a bed for sleep therapy. But I know you won’t trust a soul with your family”. Few people know me as well as Gillian does. I cannot leave Vic. There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”. Vic ain’t heavy she is my baby.
I am trying to get Hospice involved. Danie does help a lot and so do the boys. Esther bathed Vic on Tuesday whilst I was at a meeting. The church and I deserted one another some time back. I don’t have many friends.
People have their own lives. We live in a world where we don’t have time for other people’s problems.
Only a mother who has watched her child suffer will understand the despair of another mother. Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…
Smile or laugh each day. Carol Blackwell wrote:
We do. Today I watched Rango with the boys. It was so funny.
Cut yourself some slack. The wise Carol Blackwell wrote: “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”
This week I am truly wallowing in self-pity. I have been guilty of impatience, I have lacked understanding. I am petrified that Vic’s pain and suffering will continue for many more years. It is strange that Vic is having a better week than she has had in three months. As Esther said, her eyes are bright and she has mobilised pretty well. She is less tired… What if this vicious cycle of pain and suffering continues?
Don’t lose hope. Carol Blackwell wrote: “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”
Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta. But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction. Today I found a website where a doctor who claims great success with the treatment of frozen abdomens. On the surface it seems very positive. http://www.prweb.com/releases/2012/5/prweb9432209.htm
Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life. If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering. I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”
So for today and maybe the rest of the week I will hold onto my new hope. “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.” Until I receive a reply to my enquiries…
To all my friends, cyber friends and family thank you for your support and love! Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Muriel posted this message on Vic’s Facebook page. Today it echo’s my feelings. I am so tired of living. I am so tired of this miserable existence that we call life. Surely, there must be more to life than breathing!
Today was a day out of hell. I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating. I got up with great difficulty, showered, and made Kreemy Meal for my family. Both Jared and Vic need soft foods. I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.
Within 5 minutes, I was stuck in terrible traffic. Five lanes reduced to two…
Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!! I phoned Vic to check on her only to be told that she had gotten ill all over herself! She had to bath and I was not home to help her! I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again. Once she felt better, she would have to ask Primrose, the helper, to help her bathe. I could not leave the test site.
Danie phoned to tell me – “No Morphine Syrup – come back next week”. Some good news was that Esther came to visit and helped Vic bath. That girl is an absolute saint! Esther also took Jon-Daniel to the movies. I am so grateful that he could get out of the house of gloom and illness.
Then the system failed… The shipment would be delayed by at least another 5 weeks!
Another traffic jam to my next meeting…
An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic! A 20-minute trip became a 1.5-hour trip! Arghhhhhh
At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00. In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him. I put it through the strainer and rushed off to his room with a tray and his pureed food. I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor! I just burst into tears.
I cannot believe that something that I would normally laugh off as an accident set me off. Poor Jared had to eat soup for dinner. He is so tired of soup!
Well today, I am fed-up with life. I am tired to the core of my soul. I do not want to hear that I am doing a great job or that I am strong. I do not want to hear anything! All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.
Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party? I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill. I do know I cannot afford to cry. It distresses everyone around me.
I need a stronger anti-depressant.
I am going to bed. I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives. Life is already so hard for them. Tomorrow is another day and we will face whatever life throws at us!
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Vic's Final Journey 