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.
Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.
“Rays of hope” I thought.
I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…
Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.
This morning I remembered that Vic had absolutely no quality of life. I remembered my fear that her suffering would never end… I remembered my prayers, pleading with God to end Vic’s suffering.
So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…
I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.
I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.
Rest in Peace my Angel Child. You are ALWAYS in my heart.
It was very presumptuous of me to actually think I could write a series on depression. The more I research the subject the more I realise that it is not for hacks (like myself) to blog about. It is a very difficult and complex issue. So I shall only share my own notes with you.
Please note I am NOT a doctor or a psychiatrist or psychologist…I have no training or expertise. Just my own notes. I am sharing because it is so fascinating!
Anxiety and depression have been called first cousins…
Whilst there is a lot of commonality between the two – they are separate conditions that requires different treatment! Furthermore,the symptoms often overlap, and one can suffer from GAD and depression at the same time!
People suffering from anxiety often find themselves feeling like something bad might happen and they’re worried it will. People suffering from depression often assume a bad future and don’t expect anything else or think there’s anything worth preventing.
The term “anxiety disorder” refers to generalized anxiety disorder (GAD) which is a condition that describes a situation when a person experiences stress for no particular reason. GAD patients worry excessively, uncontrollably, and irrationally about normal situations to the extent that they have trouble functioning because of their fears about money, death, family, relationships, and work. People with GAD might feel tired, fidget, have constant headaches, feel nauseous, and have pain all over the body. Other symptoms of GAD include trouble swallowing, rashes, hot flashes, and problems breathing. The physical symptoms of anxiety can be as disturbing as the emotion itself.
A powerful anxiety attack will cause moments of intense fear. During a panic attack one may experience increased muscle tension and rigidity, an accelerated heart rate or palpitations, light-headedness, chest pain, shortness of breath, a dry mouth, trembling, sweating and clammy hands, a queasy stomach, nausea, and perhaps even diarrhoea. A panic attack might occur in response to a particular situation or for no reason at all.
My BFF Marlene, who died of a heart attack in 2011 suffered from panic attacks. She feared the panic attacks themselves, as they were overwhelming and unpredictable. The first couple of times she thought she had a heart problem (which she did). Her fear compounded the attacks. Her anxiety manifested itself through pronounced restlessness (restless legs), fidgeting, clenching her hands and grinding her teeth.
There is a free anxiety test that can help. It is possible to have a combinations of both. This is called a “comorbid” condition. Symptoms may overlap as both share similar causes, issues, etc.
Depression can occur after someone experiences anxiety, because someone who deals with severe anxiety may end up feeling drained and hopeless once their anxiety or anxiety attack is over. Similarly, those with depression can still fear certain things getting worse, despite already being of the belief that the future is less positive or bright.
Although the physical symptoms between anxiety and depression can be very different there are similarities. Both anxiety and depression can leave you feeling drained and fatigued. But in the case of anxiety, the intense fatigue usually occurs after intense anxiety, while with depression it tends to be more constant, without necessarily any triggers.
Depression tends to have fewer physical symptoms, but the mental symptoms can be so dangerous (especially the potential for suicidal thoughts) and the lack of energy so pronounced that many people with depression deal with intense struggles daily that certainly rival the symptoms of anxiety.
Getting rid of anxiety disorders isn’t the same as taking out the trash. If you take your trash out to the curb, it’s gone forever, and won’t come back. But when you try to dispose of chronic anxiety, you often find that this task is more like the child’s game, “Whack a Mole“, than it’s like taking out the trash. Each time you hit a mole, more moles pop up. Every effort that you make to fight against anxiety, invites more of it.
So you need to be able to work smart, not hard, to overcome anxiety disorders. This guide will help you do that.
The Anxiety Trick
The fears, phobias, and worry that you experience with chronic anxiety disorders often seem “irrational”, and difficult to overcome. That’s because there is a “Trick” to chronic anxiety problems. Have you ever wondered why fears and phobias seem like such difficult problems to solve? The reason is that chronic fears literally trick you into thinking and acting in ways that make the problem more chronic. You can’t learn to float through anxiety disorders if you don’t understand the Anxiety Trick.
The outcome of the Anxiety Trick is that people get fooled into trying to solve their anxiety problems with methods that can only make them worse. They get fooled into “putting out fires with gasoline”.
The Key Fears
There are six principal anxiety disorders. The fears are different, but each one relies on the same Anxiety Trick, and draws upon the same kinds of anxiety symptoms.
And in each case, the person tries to extinguish the fears by responding in ways that actually make the problem worse and more chronic. Here are the key fears, and typical responses, of the six main anxiety disorders.
Panic Disorder and Agoraphobia
A person with Panic Disorder and Agoraphobia fears that a panic attack will disable him in some way – kill him, make him crazy, make him faint, and so on. In response, he often goes to great lengths to protect himself from a panic attack, by avoiding ordinary activities and locations; by carrying objects, like water bottles and cell phones, that he hopes will protect him; by trying to distract himself from the subject of panic; and numerous other strategies will ultimately make the problem more persistent and severe, rather than less.
A person with Social Phobia fears becoming so visibly and unreasonably afraid in front of other people that they will judge her as a weak, inadequate person, and no longer associate with her. In response, she often goes to great lengths to avoid social experiences, hoping that this avoidance will save her from embarrassment and public humiliation. However, her avoidance of social situations leads her to become more, rather than less, fearful of them, and also leads to social isolation.
A Specific Phobia is a pattern of excessive fear of some ordinary object, situation, or activity. A person with a fear of dogs, for instance, may fear that a dog will attack him; or he may be afraid that he will “lose his mind”, or run into heavy traffic, on encountering a dog.
People with phobias usually try to avoid what they fear. Unfortunately, this often creates greater problems for them. Not only do they continue to fear the object, but the avoidance restricts their freedom to enjoy life as they would see fit.
A specific phobia is usually distinguished from Panic Disorder by its narrow focus. A person with a fear of flying who has no fear of other enclosed spaces would likely be considered to have a specific phobia. A person who fears airplanes, elevators, tunnels, and bridges is usually considered to have Panic Disorder or claustrophobia. However, the fear of public speaking is usually considered to be a part of Social Phobia.
A person with a Blood Phobia may fear a variety of situations, but they all involve the prospect of seeing blood. A person with a fear of vomiting (either fearing that they will vomit, or that that they’ll see someone else vomit) would be considered to have Emetophobia. The official definitions of some of these disorders will change in 2013, so don’t get preoccupied with the label.
Whether you have one or multiple phobias, these are very treatable conditions.
Obsessive Compulsive Disorder (OCD)
A person with Obsessive Compulsive Disorder experiences intrusive, unwelcome thoughts (called obsessions) which are so persistent and upsetting that he fears the thoughts might not stop.
In response, he tries to stop having those thoughts with a variety of efforts (called compulsions). Unfortunately, the compulsions usually become a severe, upsetting problem themselves.
For example, a man may have obsessive thoughts that he might pass swine flu on to his children, even though he doesn’t have the flu himself, and wash his hands repetitively in an effort to get rid of that thought. Or a woman may have obsessive thoughts that she left the garage door open, and repeatedly check the garage all night in an effort to stop thinking that. Not only do these efforts fail to rid the person of the unwelcome thoughts, they become a new form of torment in that person’s life.
Generalized Anxiety Disorder
A person with Generalized Anxiety Disorder worries repeatedly and continually about a wide variety of possible problems, and becomes so consumed by worry that she fears the worry will eventually kill her or drive her to a “nervous breakdown”. In response, she often tries a wide variety of “thought control” methods she hopes will enable her to “stop thinking about it.” Distraction is one such effort. Unfortunately, the effort to stop thinking about it actually makes the worrisome thoughts more persistent.
Post Traumatic Stress Disorder (PTSD)
A person who has witnessed or experienced some dangerous or life threatening event (a shooting or a car crash) fears that the subsequent thoughts and powerful reminders of that event will lead to a loss of control or mental illness. The powerful symptoms of fear and upset a person experiences when recalling a terrible event are reactions to that event. However, the person gets tricked into responding to these reactions as if they were warnings of an upcoming danger, rather than reminders of a past one.
And Depression, too?
It’s very common for people to experience depression in response to the way anxiety disorders have disrupted their lives. Less frequently, sometimes people experienced a strong depression before the anxiety set in, and this is a different kind of problem. Either way, depressive symptoms need to be addressed in recovery, so it’s useful to know something about how depression and anxiety disorders are related.http://www.anxietycoach.com/anxietydisorders.html
Clinical depression goes by many names — depression, “the blues,” biological depression, major depression. But it all refers to the same thing: feeling sad and depressed for weeks or months on end (not just a passing blue mood).
Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behavior, feelings and sense of well-being. Depressed people may feel sad, anxious, empty, hopeless, worried, helpless, worthless, guilty, irritable, hurt, or restless. They may lose interest in activities that once were pleasurable, experience loss of appetite or overeating, have problems concentrating, remembering details, or making decisions, and may contemplate or attempt suicide. Insomnia, excessive sleeping, fatigue, loss of energy, or aches, pains, or digestive problems that are resistant to treatment may also be present.
If you identify with several of the following signs and symptoms, and they just won’t go away, you may be suffering from clinical depression.
Feelings of helplessness and hopelessness. A bleak outlook—nothing will ever get better and there’s nothing you can do to improve your situation.
Loss of interest in daily activities. No interest in former hobbies, pastimes, social activities, or sex. You’ve lost your ability to feel joy and pleasure.
Appetite or weight changes. Significant weight loss or weight gain—a change of more than 5% of body weight in a month.
Sleep changes. Either insomnia, especially waking in the early hours of the morning, or oversleeping (also known as hypersomnia).
Anger or irritability. Feeling agitated, restless, or even violent. Your tolerance level is low, your temper short, and everything and everyone gets on your nerves.
Loss of energy. Feeling fatigued, sluggish, and physically drained. Your whole body may feel heavy, and even small tasks are exhausting or take longer to complete.
Self-loathing. Strong feelings of worthlessness or guilt. You harshly criticize yourself for perceived faults and mistakes.
Reckless behaviour. You engage in escapist behaviour such as substance abuse, compulsive gambling, reckless driving, or dangerous sports.
Concentration problems. Trouble focusing, making decisions, or remembering things.
Unexplained aches and pains. An increase in physical complaints such as headaches, back pain, aching muscles, and stomach pain.
Negative thoughts. You can’t control your negative thoughts, no matter how much you try
Suicidal thoughts. You have thoughts that life is not worth living (seek help immediately if this is the case)
There are many on-line depression tests. These tests should not replace or substitute a visit to a physician. It is only an indicator. http://www.depressedtest.com A physician will have to rule out other serious medical conditions that may cause similar symptoms.
The main types of depression include:
Major depression — to be diagnosed with major depression, you must have five or more of the symptoms listed above for at least 2 weeks. Major depression tends to continue for at least 6 months if not treated. (You are said to have minor depression if you have less than five depression symptoms for at least 2 weeks. Minor depression is similar to major depression except it only has two to four symptoms.)
Atypical depression — occurs in about a third of patients with depression. Symptoms include overeating and oversleeping. You may feel like you are weighed down and get very upset by rejection.
Dysthymia — a milder form of depression that can last for years, if not treated.
Postpartum depression — many women feel somewhat down after having a baby, but true postpartum depression is more severe and includes the symptoms of major depression.
Since Vic’s blotched back surgery in 2002 I have been on anti-depressants. The anti-depressants allowed me to continue functioning; fighting – living. It made life bearable. I was able to survive and support my child through 11 years of hell. The tablets certainly dulled my senses, my emotions. I have also gained 15 kgs in weight.
I have decided that I can no longer rely on medication. I have to take back control of my life. I have to heal. I have to let go of all my crutches.
I know I have to wean myself off the medication… Now that I no longer have symptoms and treatments to research to keep Vic alive, I decided to research depression. It has been absolutely amazing! I will be doing a series on depression and the treatment thereof.
Feelings of sadness, hopelessness, and anxiety are obvious signs of depression. A less known fact is that depression can also cause unexplained physical symptoms. Physical pain and depression often go hand in hand….
Depression has no respect for colour, creed, sex or nationality. Depression does not discriminate.
The exact cause of depression is not known. Depression seems to be related to an imbalance of certain chemicals in your brain. Some of these same chemicals play an important role in how you feel pain. So many experts think that depression can make you feel pain differently than other people. An episode of depression may also be triggered by a life event such as a relationship problem, bereavement, redundancy, illness; or it can develop without any reason; there may be some genetic factor involved that makes some people more prone to depression than others. Women are more predisposed to depression than men i.e. postnatal and menopausal depression….
Depression is quite a common cause of physical symptoms. But, the opposite is also true. That is, people with serious physical conditions are more likely than average to develop depression.
A high percentage of patients with depression who seek treatment, in a primary care setting, report only physical symptoms, which can make depression very difficult to diagnose. Many people suffering from depression never get help because they don’t realize that pain may be a symptom of depression. The importance of understanding the physical symptoms of depression is that treating depression can help with the pain–and treating pain can help with depression.
Physical pain and depression have a deeper biological connection than simple cause and effect; the neurotransmitters that influence both pain and mood are serotonin and norepinephrine. Dysregulation of these transmitters is linked to both depression and pain.
I have noted a common denominator in the lives and blogs of chronic pain sufferers – depression. Pain in its own right is depressing. Depression causes and intensifies pain. Some research shows that pain and depression share common pathways in the limbic (emotional) region of the brain. In fact, the same chemical messengers control pain and mood. According to an article published by the Harvard Medical School, people with chronic pain have three times the average risk of developing psychiatric symptoms–usually mood or anxiety disorders–and depressed patients have three times the average risk of developing chronic pain.
The link between pain and depression appears to be a shared neurologic pathway. Some antidepressants, such as Cymbalta and Effexor, is used to treat chronic pain.
Most of us know about the emotional symptoms of depression. But you may not know that depression can be associated with many physical symptoms, too
In fact, many people with depression suffer from chronic pain or other physical symptoms. These include:
Headaches. Headaches is a common symptom of depression. Research found that over a two-year period, a person with a history of major depression was three times more likely than average to have a first migraine attack, and a person with a history of migraine was five times more likely than average to have a first episode of depression.
Back pain. Back ache is aggravated by depression. A study from the University of Alberta followed a random sample of nearly 800 adults without neck and low back pain and found that people who suffer from depression are four times more likely to develop intense or disabling neck and low back pain than those who are not depressed.
Muscle aches and joint pain. Depression can make any kind of chronic pain worse. According to research published in the Journal of General Internal Medicine, arthritis-like physical symptoms may improve if the depression is treated with medication.
Chest pain. Chest pain must be checked out by a doctor immediately. It can be a sign of serious heart problems. But depression can contribute to the discomfort associated with chest pain. A study from the Sahlgrenska Academy, University of Gothenburg, Sweden, indicates several common factors among those affected by chest pain not linked to biomedical factors such as heart disease or some other illness–depression was one of the significant common factors.
Digestive problems. Queasiness, nausea, diarrhoea and chronic constipation can all stem from depression. Studies show that up to 60 percent of people with irritable bowel syndrome (IBS) also have a psychological disorder, most commonly depression or anxiety. According to one study published in General Hospital Psychiatry, those who reported symptoms of nausea were more than three times as likely to also have an anxiety disorder, and nearly one-and-a-half times more likely to suffer from depression. Depression is a possible cause for digestive disorders
Exhaustion and fatigue. No matter how much one sleeps, they still feel tired. Getting out of the bed in the morning is very hard, sometimes even impossible. Fatigue and depression are not a surprising pair. Depression and fatigue feed off each other in a vicious cycle that makes it hard to know where one begins and the other ends. Researchers have found people who are depressed are more than four times as likely to develop unexplained fatigue, and those who suffer from fatigue are nearly three times as likely to become depressed.
Sleeping problems. People with depression often have difficulty falling asleep, or awaken in the early hours of the morning and find themselves unable to get back to sleep. It is reported that 15 percent of people suffering from depression sleep too much. Lack of sleep alone doesn’t cause depression, but it can contribute–and lack of sleep caused by other illness or anxiety can make depression worse.
Change in appetite or weight. Several studies have found excess weight to be linked with depression symptoms, a history of depression, and other measures of psychological distress (e.g. anxiety). Others suffering from depression experience a reduction in appetite i.e. weight loss.
Dizziness or light-headedness.
Because these symptoms occur with many conditions, many depressed people never get help, because they don’t know that their physical symptoms might be caused by depression. These physical symptoms aren’t “all in your head.” Depression causes real changes in your body.
Jon-Daniel has had the best birthday ever! Yesterday he left school early for extra time with his Mom, we had a fun family lunch and then there was a cake and tea last night at his Dad’s.
Today it was his birthday party and Vic was well enough to enjoy it! It was a glorious summer day; the pool was a sparkling blue, the trees and grass a vivid green…. The sun shone and sparkled on Vic’s hair as she stood watching the children play.
Vic helped laying out the table, she bought helium balloons, she refused to sit or lie down. She insisted on carrying Jon-Daniels birthday cake! She started the singing. She laughed and glowed with pride. For a single day Vic looked just like a normal, healthy Mommy. I could hear her heart crying…. “this is the last birthday I will have with my son”
I thank God for a glorious day and memories. I thank God for granting Vic the joy of celebrating her baby boy’s 14th birthday.
C.S. Lewis says “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
For 37 years I have bargained with God. He alone knows of all my anguish, tears, pleading, my fears and pain. I am strong. I don’t cry easily or often. I have cried before God. Pleaded with Him for mercy.
He chose to ignore my pleas for mercy.
I have not been to Church in more than two years. I attended Marlene and then my Dad’s funeral. I went to one service at Reuben church. I have been angry with God….. Disappointed that the God of Mercy I learnt about from my parents’ knees does not exist. I have only experienced a God who has sentenced my child, and now my grandson, to a life of pain and suffering.
Today I attended the annual church fete. The arms that I have missed for more than 2 years enveloped me. Kisses rained on my cheeks. “I have missed you”, “We still pray for you and Vicky everyday of our lives”….. “It is so good to see you!”
The minister, Martin, hugged me and said “I think of you every day. We are always here for you….
I cried. I miss my church friends but I cannot go back for the wrong reasons.
I wondered tonight why the friendships did not last outside the confines of the church? I realized that our pain is too much for people to cope with. They hurt for me…..
But in the silence in our everyday lives is deafening…God’s megaphone has obviously not roused the deaf in our world…….
When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.
So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.
Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!
An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.
My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!
As usual I digress.
Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her. She fears that the boys will abandon her and look to us, the grandparents, for parenting. She fears losing the only “position” in life that she has left – the position of “Mother”. It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.
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!
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.
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!
When Brendan (Vic’s gastroenterologist) took me into the passage, outside Vic’s hospital room, and said “No more. This is the end of the road” my heart stopped. How can there be no hope? Brendan has been so brave until that moment. It was not easy for him to sentence Vic to the “No Hope” section of her journey.
Where does hope live when we hear the words announced to us, “There is no hope”? We cannot return to life as it was.
Immanuel Kant, who lived and wrote in the 1700s, thought a lot about the kind of subjects we might label as “the eternal verities”: hope, ethics, God, morality, the meaning of life. Kant came up with three questions that he thought expressed the central human concerns. Here are his famous questions:
What can I know?
What can I do?
What can I hope?
What can I know? “A large part of Kant’s work addresses the question “What can we know?” The answer, if it can be stated simply, is that our knowledge is constrained to mathematics and the science of the natural, empirical world. It is impossible, Kant argues, to extend knowledge to the super sensible realm of speculative metaphysics. The reason that knowledge has these constraints, Kant argues, is that the mind plays an active role in constituting the features of experience and limiting the mind’s access only to the empirical realm of space and time.” http://www.iep.utm.edu/kantmeta/
I know I can only address this on an emotional level.
I know that life is unfair and difficult! I know we are scared – not only of Vic’s painful journey but of what lies beyond her release from pain. I know I hate seeing my child suffer and losing her dignity.
I know I love my child more than life. I know she wants to live. I know she wants to love, be loved….. I know she wants the frustration of facing peak hour traffic on her way to work or back. I know Vic wants a job. I know Vic wants financial independence, a trip to Italy. I know Vic wants to attend her sons 21st Birthday parties, see them graduate, and meet the person they decide to spend their lives with. Hold her grandchild..…grow old gracefully. I know Vic wants to walk on the beach, see the sun set over the sea…..
I know that Vic is tired of the pain. I know she wants to die. I know she wants to live.
I know dying is a lonely journey. I know it is impossibly difficult to watch Vic grow weaker every day. I know I am tired of being sad. I know I want the boys to be happy…..
What should I do?
I know I should honor Vic’s wishes. I know that I should try and stay positive for the boys sake. I should fight harder for Hospice intervention. I should remain cheerful and snap out of my depression. I should concentrate on the positive moments in our lives. I should endeavor to find a way of giving Vic peace – enough peace to let go.
What can I hope? I wish her pain control will continue to work as well as it is now…I hope that her suffering will come to an end. I hope that the boys will heal in time. I hope that we will laugh again. I hope that Vic will find peace.
I hope that my beautiful little girl will fall asleep and not wake up. I hope that God will be with her when the time comes
It became crystal clear to me when Vic yelled at me in the ICU that she had deep-seated anger issues with me and where she was in her journey. Dying is unknown territory and none of us have walked this road. Yet we are all morbidly curious about dying. Everybody has some shadows of uncertainty.
According to Hospice there are FIVE stages of dying.
1. DENIAL: “I’m too young to die. I’m not ready to die (is anyone ever really ready?)” It became clear to me that despite the fact that Vic was sentenced ten years ago she is still in denial. Even after Brendan had informed her that nothing more could be done for her she still clings to her lifelong defiance of death. The prediction from one’s physician of imminent death can do several things. It can give you time to prepare, take care of business, close doors, make amends. The shock begins to ebb as you come to grips with approaching death. Vic has some doors to still close. Her business is in order. She has written letters to her loved ones, bought major birthday gifts and cards for the boys
2. ANGER: Suddenly the terminally ill person is no longer in control of their life. They have no choice any more – the die is cast….. They are going to die. This is really where Vic is now. She has lost control of her life. At the age of 37 she is living in her mother’s home, decisions are made for her she has become a child again. Her anger on Sunday morning was directed at me. Her profuse sense of helplessness and loss of control is however not a new feeling. Vicky has endured a long, debilitating illness. Doctor error has robbed her of a life. Illness has robbed her of her dignity. She is angry with God for allowing this to happen to her. She is angry for God not taking her. On Monday afternoon she said “Mommy, God does not even want me…”She has been robbed the opportunity to see her sons complete school, university, get engaged and eventually marry…… Many people die too early but at 37 it is mainly due to misfortune, wrong place wrong time, an accident….. At the age of 27 Vicky was sentenced to death…..
3. BARGAINING: I do not know what bargaining Vic has done with her God. I know that I have made lots of bargains with my God. Just one more Christmas….. Just one more birthday…..
4. DEPRESSION: Knowing that you are dying must be depressing! This must be a normal part of the process of preparing to die. Vic is depressed about her inability to deal with her responsibilities. Vic is too ill to get away from the symptoms of her illness ….. She waits for death every day. Vic is depressed about the pain that her illness is causing her sons, friends and family. Vic is depressed because she feels that she has failed her sons. Vic is depressed because she is lingering…. Vic is depressed about the loss of love that she has suffered. Vic is depressed period! But with good reason. Antidepressant’s are part of the pain control regime. If it is helping for her pain that is great. I hate to think what her mental condition would have been if she had not been on antidepressants.
5. ACCEPTANCE: Vic is not at this stage yet. This is one of the main reasons why we need Hospice. Brendan (her Gastroenterologist) referred her to a councillor last year to guide her into this phase of her journey. Vic went a couple of times and then it became a matter of budget – medication or counselling. Medication won. Hospice defines acceptance as follows…”Acceptance is NOT: doing nothing, defeat, resignation or submission. Acceptance IS: coming to terms with reality. It is accepting that the world will still go on without you. Death is after all, just a part of LIFE.”
I see absolutely no peace in Vic. She is still kicking and fighting. At times she may fool herself into thinking or believing that she has accepted her situation but it is crystal clear to me that it is not the case.
We met as a family on Tuesday evening to discuss all our frustrations. It becomes difficult to handle one’s day to day frustrations as we have different agenda’s. A while back Vic asked my permission to give up. She spoke to the boys. We cried and gave her “permission”.
The family immediately went into palliative mode. No demands or expectations for any normal functionality from us to Vic….. Therein lies the issue. We became an “Us” and “Her”… “Us” became the protectors and “Her” became the invalid. We tippy toed around Vic. The boys stop bothering her with everyday issues like “Can we go to the movies”; “please pick me up at 16:00”; “Do I have to go to extra lessons?” When we walked into her room and she was sleeping we would turn around and walk out. We would show no concern for the amount of pain medication Vic was on.
It is so easy to slip into a “mode”. I took all responsibilities out of Vicky’s hands, we as a family organized our lives around her pain levels and energy (or lack thereof) levels, we stopped laughing and living in our house. We were all dying!
When she lashed out at me in ICU I realized that we had serious problems. Vic was not ready for Stage 5. She started kicking against death – again. Her fight is back.
It is however a difficult and delicate balance between pain-free and functional….. Vic said that she wanted to reduce her pain medication as maybe she would not be so tired all the time. By Monday evening she was in so much pain that she was vomiting. She could not keep tablets down….. It took two days to get her pain under control again.
I have also read Katie Mitchells Blog on Chronic Pain and the way that brave lady articulates her battle with pain truly opened my eyes. I realize now that I cannot take living away from Vic whilst she is still breathing. I have to let go. I cannot protect her against pain. I cannot protect her against death. I have to try to look at her through her pain filled eyes as I don’t understand pain or her frustration. I am active and busy. Today I joined a gym so I can train with the boys. I do the things with her sons that Vic would LOVE to do! A couple of weeks ago Vic said “You are the fun person in the family. You do all the fun things with the boys” Obviously there must be resentment and anger (Stage 1).
But we live in a civilized home. We don’t scream, shout or curse. We bury things under the carpet. We walk away from conflict so we don’t know what the other is thinking or feeling. We only see the veneer..… How terribly sad!! We have lost our ability to function properly.
So from now when I am frustrated with Vicky attempts at doing things for herself or the boys I will leave her be!! PLEASE God help me!!!! I am such a control freak!!! I will endeavor to not stop her from going for a cup of coffee with one of her friends. I will just pick up the pieces afterwards.
I have to stop being selfish. I realize that I was trying to keep Vicky pain-free as it is easier for me to handle!! Pain free means medication on the strict regime, no strenuous activities, protected and wrapped up in cotton wool. Vic must make her own painful decisions. If she wants to take the boys to school who am I to stop her? Of course she must but not on 400 mg of morphine!
The problem is that I look at Vic and all I see is that fragile little toddler…… And she is sick. Very sick! I want to protect her, breathe for her, die for her. Vicky is my baby.
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.
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.