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”.
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.
This year – today – I am saying “Why don’t I just go to sleep and never wake up?”
Last year Vic said: “My boys don’t need me anymore. I have been sick all my life. Even my ears hurt. ”
On the 8th of January 2013 Vic said “Mommy my room is full of angels…”
Tonight I reread something a friend sent me as a comment https://tersiaburger.wordpress.com/wp-admin/edit-comments.php?p=383&approved=1
I have been following your journey now for some time and my heart goes out to you and your family. It is NOT EASY to care for somebody that is terminally ill. It makes it even more difficult if that person is your child.
I would like to share something with you though. It is vitally important that you take care of yourself in this tiring time. Please accept all the help from family and friends that’s been offered to you. This will give you some breathing space. It will also allow Vic to know that it is okay if Mom is just having a little bit of “me” time. Her energy is very powerful and she proved it to everybody up to now that she wants to survive.
Allow all Angels and guides to assist you with the care that you and your family so much need right now. God allows you to call upon their assistance when you need them. When Jacob was struggling with an Angel he called the Angel Michael to assist him and Michael was there not only to help him, but also to guide him with whatever he was struggling with. There are many stories in the Bible and other scriptures about God’s Angels. What still amazes me is that God found it necessary to create Angels. HE knew that we and all other creatures would need assistance and comfort when we are lonely. It took me a long time to work this out. It was only after my mom passed away and I fell very ill that my awareness of these wonderful creations of God was awakened.
Dear Tersia, know they are there, they are with you. You just need to ask for their guidance and assistance. Please know that Angels come in all forms. It might be your neighbour, your friend, nursing staff or maybe a presence! Nurture yourself. Get all the friends, family and help that you can now and trust people. They will be guided and equiped with the knowledge to help you now. You need to be taken care of now and so does your family.
The angels did come to comfort my child in her most fear-filled day.
We have found many angels in human form. Friends, family, acquaintances, WordPress Friends, Facebook friends…..
Thank you Louise for opening my eyes to the angels. Thank you for the angels that comforted my child in her hour of need and thank you for the angels that came and took her by the hand and whisked her away to a pain-free, joy filled place.https://tersiaburger.com/2013/01/08/gramps-was-here/ https://tersiaburger.com/2012/06/17/i-always-pray-for-you-but-you-dont-seem-to-have-a-guardian-angel-17-6-2012/
Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..
It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.
It is estimated that a maximum of 5% of people who die from terminal illness in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.
Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?
Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?
They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?
I read the post of an amazing woman who is suffering from congenital heart failure. She is in so much pain. I cried when I read her post. http://thedrsays.org/2012/11/08/ She replied to a question whether better pain control was possible….. “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”
Vic has received a new lease on life. Vic has 100% better quality of life since her pain is under control. We discovered, through the expertise of a wonderful palliative care team that Vic’s body did not absorb monstrous quantities of morphine! Now she is not only functioning, she is LIVING! Vic is more lucid than she was before.
The pain was killing Vic… Palliative care has given her life.
Being prepared to die is one of the greatest secrets of living. George Lincoln Rockwell
When Tony Nicklinson’s legal team visited him two days after the high court decision, he communicated via computer by moving his eyes “So, we lost. In truth I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.
“I suppose it was wrong of me to invest so much hope and expectation into the judgment but I really believed in the veracity of the arguments and quite simply could not understand how anybody could disagree with the logic. I guess I forgot the emotional component.”
Nicklinson’s despair following last week’s ruling was evident to all, as he broke into sobs that shook his paralysed body. In a statement issued through his lawyers, he added: “I am saddened that the law wants to condemn me to a life of increasing indignity and misery.” http://www.guardian.co.uk/uk/2012/aug/22/tony-nicklinson-right-to-die-case?newsfeed=true
Today at 10:00 Tony Nichlinson died surrounded by his loved ones. His family said he simply gave up….. This supports my theory that death is actually a conscious decision. I have seen Vic turn back from death. It is not anything physical but in that second something changes! We all know of someone who has “held on” until a loved one walked in whilst others wait until their loved ones have left the room before they die. I have personally experienced this with my mom when she passed.
I take great comfort from all my research into Near Death Experiences.
First, published studies have shown that people who undergo cardiac arrest can recall specific memories and demonstrate consciousness. Second, during cardiac arrest, there is no measurable brain activity. “If you combine these two sets of data together, it indicates a need to do a large study to determine: is this real or not? Can this really be going on?”
Still, the explanation behind these events can be attributed to the complexity of the human mind, not, as some believe, a universal spiritual experience, or even a new realm of science.
“When you study mind and brain, you see that, although in many circumstances this practical model we have developed — mind and brain are the same thing — is fine, when you go to an extreme environment like during a cardiac arrest…they don’t seem to apply anymore,” says Parnia. “It may suggest that there’s something that hasn’t been discovered scientifically.”
Studies by Parnia and other researchers show that between 10 and 20 percent of who are resuscitated from cardiac arrest had a near-death experience (NDE). Various other studies show the frequency of near-death experience to be between 4 and 18 percent. The experience is typically described as a progression of stages. First, the person has a sense of peace, then a sense of separation from the body. The person then enters into darkness, and sees a bright light like the end of a tunnel. Finally, the person enters the light and interacts with an entity, described as God, Allah, or simply a universal cosmic force.
During the time that people report the feeling of detachment from their physical body, or an out-of-body-experience, they report a perception of floating above their body, or floating near the ceiling in the room where the experience occurs. http://www.popsci.com/sam-barrett/article/2008-10/first-few-minutes-after-death?page=1
The art of dying is the art of letting go. Our fear of death and letting go keeps us in fear of uncertainty and change, which are a natural part of life. Out of these fears we hold on to old beliefs which make us live in fear, misery and the idea of separation. Our fear of death is deeply repressed and usually unconscious. We are filled with fear and trepidation when a beloved dies, is terminally ill, or when we ourselves are challenged with illness, old age or a life threatening situation.
I am grateful that Tony Nicklinson’s suffering and misery has ended. He is at peace and I believe now truly lives in a healed body His suffering is over. I thank God for His Mercy.
Rest in peace Tony Nicklinson – brave warrior!
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!
Today was a bad day – again.
I just finished watching a program called “How to Die in Oregon“. I am in total awe of the terminally ill people who make the decision to die with dignity. People often say that it is a coward who commits suicide. I don’t agree. I think people must be so brave to do it!!
There is however a huge difference between suicide, assisted suicide and euthanasia.
From Wikipedia, the free encyclopaedia
Assisted suicide is the common term for actions by which an individual helps another person voluntarily bring about his or her own death. “Assistance” may mean providing one with the means (drugs or equipment) to end one’s own life, but may extend to other actions. It differs to euthanasia where another person ends the life. The current waves of global public debate have been ongoing for decades, centering on legal, religious, and moral conceptions of “suicide” and a personal “right to death“. Legally speaking, the practice may be legal, illegal, or undecided depending on the culture or jurisdiction
From Wikipedia, the free encyclopaedia
For other uses, see Suicide (disambiguation).
Suicide (Latin suicidium, from sui caedere, “to kill oneself”) is the act of intentionally causing one’s own death. Suicide is often committed out of despair, the cause of which can be attributed to a mental disorder such as depression, bipolar disorder,schizophrenia, autism spectrum disorders, alcoholism, or drug abuse. Stress factors such as financial difficulties or troubles with interpersonal often play a significant role.
The TV documentary, “How to Die in Oregon” is the tender and poignant story of Cody Curtis, a 54 year old, dignified, lady, who is diagnosed with terminal liver cancer. Cody, early in her final journey decides that pain strips one from the ability to make rational decisions. She decides that she will not suffer the indignity of living with loss of control of her bodily functions. She desires a “tidy death”. Her journey takes her way past her “expiry date” and she muses “People are waiting for me to die. I do not understand why I am feeling so good”.
Her decline into intolerable pain and discomfort is sudden. “Compassion and Choices” sends in volunteers to counsel and assist with the final act of assisted suicide. Cody’s final journey is gentle, beautiful and “easy”.
Every time I say those terrible words “Vic is better” it is as if I place a curse on my poor child. Poor Vic did not have a good day today. Isn’t it amazing that 400mg of Morphine does not help for a headache! It actually takes something like Grandpa’s or a Migraine Kit to help….
Vic and I sat chatting tonight. She too had watched “How to Die in Oregon” and wanted to know how I would feel if she ever took a similar decision. She cried and said that she is so sad and lonely. She feels that the boys no longer trust her to “mother” them.
It is not the case. What the boys have however started doing is setting her free….
How would I feel? I would be devastated if Vic ever passed before I do. I would miss her every second of my remaining life. I would respect her wishes. I would honor her memory and heart wrenching decision.
Nobody can begin to comprehend the pain that Vic suffers. Nobody can comprehend that she drifts from one pain filled day to the next. If she lived an extra month or two months it would be another month or two months of pain. That is a lot of pain.
I know that this post will elicit a lot of condemnation and criticism. When you have walked just ONE mile in our moccasins you may speak….
A place to rest
A hand to hold
Quiet inside my head
For friendly smiles
Of futures untold
A place to rest
Did God intend for man or woman to “live” connected to machines to keep them breathing? People accept the death of a six-year-old child by aerial bombardment or economic sanctions and defend the life of a six-week-old fetus. I personally live in a country where children still die from inadequate medical care and hunger.
via The right to die.
After Vic’s Dad spent a week in ICU, ventilated and bleeding from his eyes, she signed the documents to allow the doctors to turn off the ventilator. Tienie was an organ donor. We were allowed to say our goodbyes and then the transplant team swept in. Sometime later the machines were switched off and Tienie was officially declared dead…..
Tienie lived life to the full. He believed sleep was a waste of time. He never sat still for a single minute. He loved life! He had a brilliant mind. He was articulate and well educated. He was a very proud man. If Tienie had lived he would have been condemned to “Locked-In Syndrome“. I remember standing next to his hospital bed thinking “What if that brilliant mind is trapped in a body that cannot communicate?”
Vic received a couple of letters from grateful recipients telling her what a difference Tienie’s organ’s had made to their lives.
On numerous occasions Vic has been on life support. We have been told to say our goodbyes. We said our goodbyes. Vic started breathing on her own…
Across the world people have prayed for Vicky’s life to be spared/saved. I have seen medical teams fight for her life refusing to let her slip into the arms of death. The bottom line is that doctors have played God in her life for many, many years. They decided when she was NOT allowed to die…
Doctors proclaim they do not want to play God…..They will fight day and night, for weeks on end, to save a very sick person’s life regardless of the individual’s wishes and quality of live. Doctors and Governments assume the right to decide when a sick person may die. God surely did not intend people to live a miserable life… Just yesterday Britain’s High Court rejected an attempt by a man who has locked-in syndrome to overturn the country’s euthanasia law by refusing to legally allow doctors to end his life.
Tony Nicklinson had a stroke in 2005 that left him unable to speak or move below his neck. He requires constant care and communicates mostly by blinking, although his mind has remained unaffected and his condition is not terminal. Locked-in syndrome is a rare neurological disorder where patients are completely paralyzed, and only able to blink. Patients are conscious and don’t have any intellectual problems, but they are unable to speak or move……
“The suicide, the mystic, the woman who seeks an abortion, the cancer patient who smokes a joint (the cancer patient’s long-suffering lover who smokes a joint)—all are roundly condemned for their escape from “responsibility” but truly feared for their escape from jurisdiction. It is a fear with a long and traceable history. The Roman emperor Tarquin crucified the bodies of citizens who committed suicide in order to escape his tyranny. When Margaret Sanger began her campaign for birth control, she was accused of permitting women to escape their God-ordained sorrow in bearing children.” http://harpers.org/archive/2005/02/0080411
We live in a world filled with hypocrites and people with double standards. I have said it before – people take the moral high ground and assume the role of God. Did God intend for man or woman to “live” connected to machines to keep them breathing? People accept the death of a six-year-old child by aerial bombardment or economic sanctions and defend the life of a six-week-old fetus. I personally live in a country where children still die from inadequate medical care and hunger.
It is not physician-assisted suicide that poses the greatest threat to the poor and the disabled but physician-assisted eternal life: Rich people will pay a lot of money for illegally harvested organs… The poor, from a different continent, will sell their organs to buy seed for their farms….
It is my personal opinion that Tony Nicklinson has been sentenced to a Life of Disability rather than being allowed “Death with Dignity.” He cannot wipe his own nose, wipe a tear from his eyes, scratch his ear….. He cannot control his bodily functions. He cannot even take a lethal dose of medication.
I pray that God will have mercy on me and allow me the time, mobility and clarity of mind to end my life rather than live the indignity and miserable life that Tony Nicklinson has been condemned too.
God have mercy!
Today was a terrible day. The pain Clinic was crazy! I have never seen so many people waiting to see the Professor.
When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients. But today there were two new faces. An attractive young woman and her tired looking mother. They appeared to not be very cultured or refined people. The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic. His sister (S) and mother (M) are his proxy’s.
S became very agitated because she was told – “no appointment, no consultation, no prescription”. She actually used some choice language! She kept saying “It is not for me. I actually don’t care….”
She however bullied the nurse into agreeing to allow the unscheduled appointment. But it was a long wait and S, I suspect, is a little ADD. She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident. At one stage of the monologue she said “Sometimes I just think I must give him some poison….”
Holy Moses!! It flashed through my mind “What type of person is this?”….
I was intrigued by the personality so I started chatting to her. All it took was one or two questions and a flood of emotions and words poured out of them. Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.
She started telling their sad story. Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures. He spent many months in hospital and gangrene developed in his leg. His leg was amputated but the gangrene spread and this lead to 3 further amputations! The mother said if she had known how he was going to suffer she would have prayed for him to die.
A small percentage of amputees suffer from phantom pain. “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain. Brother apparently squarely falls into this category.
Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother enough morphine to end his misery. She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…
The mother is taking care of her son. It is obvious that her life has come to an end. I see the despair in her eyes when she says “He doesn’t sleep. Yesterday he threw his crutch at me…..”
Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”
I asked them whether they had ever considered giving him cannabis. “Oh yes” they said. “We made him tea and he hated it!”
“It is better if he smokes it” I said
I looked around and saw shock and surprise register on everyone’s faces. I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”
Well, I do know about cannabis. I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.
- Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
- Medium doses of marijuana can reduce pain perception, another study found. Fifteen healthy volunteers smoked a low, medium, or high dose of marijuana to see if it could counteract the pain produced by an injection of capsaicin, the ”hot” ingredient in chili peppers. The higher the dose, the greater the pain relief. The study was published in Anesthesiology. http://www.webmd.com/pain-management/news/20100218/medical-marijuana-has-merit-research-shows
A couple of years ago I bought some cannabis and put it in brownies for Vic to eat. She hated it. I gave her some to smoke. She hated the effect that it had on her. I know it is illegal. Personally I have never smoked or eaten the stuff so I do not know what effect it has on people. I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.
I will stop at absolutely nothing to relieve my childs pain.
I then had a light-bulb moment – I realized that the mother and daughter were no different to me. They know the heart wrenching despair of caring for a loved one who has indescribable pain. They too pray for their loved one to find peace and release in death. They will also do anything to relieve the pain of their loved one.
I just have an extra layer of veneer
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.