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.
Over the past 10 years I have seen my child suffer so much indignity and indescribable pain. I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks. I have wept before God and prayed for Vic to die. I begged God to take away her suffering.
I advocated the right to die with dignity.
Vic has been in the care of Hospice for the past 3 months. In this time Vic has been given a new lease on life. Hospice cannot change the prognosis but they have given Vic quality of Life. For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening. She completed her photo albums.
Vic is in renal and hepatic failure. Her tissue is horrendous. Her pain is under control! As and when symptoms surface, Vic’s medication is adjusted. She is treated with compassion and respect. Her wish is the teams command….
As the situation is now I am so grateful that my child is alive. I treasure every breath that she takes. We chat, laugh and cry. We dream of going to Italy in 2013.
So given the situation now what would I advocate – The right to die with dignity or the right to live?
I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end. If it remains as great as it is now of course I want her to live. But it is key that Vic is allowed to live with Dignity!
As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person. It is not for family or physicians to play God. The patient has to be the only decision maker.
I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.
We all have the right to Live with Dignity. There is a huge difference between breathing and living…
Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition. In actual fact they are merely kept breathing…. More treatment will only prolong their dying.
It is at this point that patients and families face difﬁcult choices about the kind of care they want….
I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.
Vic has reached a stage in her life where she wants to die. She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity. Vic needs help with almost all her day-to-day activities.
Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones. Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want. It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…
“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:
I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice. I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!
WHAT IS PALLIATIVE CARE
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in their own bereavement;
uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
will enhance quality of life, and may also positively influence the course of illness;
WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.
The main things hospice can help with are:
pain and symptom control
psycho-social support and advise
equipment (wheelchairs etc)
The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.
Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”
As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…” I do not want my child to die. I merely want her suffering to END!
As a family we have moved into a phase where the stress of the situation can no longer be ignored. It is making all of us ill.
This week has been an emotional roller coaster! On Tuesday I cried in front of a strange doctor. Wednesday I felt that I was losing the plot. I was unable to function on a professional level. My mind was absolutely fogged over. Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…
Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…
He said “Oumie I can see when you are stressed. You zone out… You have been very stressed this week….”
“Yeah” I said. “I have been a little stressed this week.”
“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before! You always smiled.”
OMG. What am I doing to the boys? I realized today that I have to be more careful. The mask has to go back on. I scare them when I show my stress. Imagine what it would do to them if they read my blog….. Thank God they don’t!
I left the best for last though – no immediate lymph biopsy will be done on Jared. The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks. We will give his kidney some time to heal and the CT scan will be repeated again in two months time.
I am feeling so positive!
There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family. I pray that He will enfold Vic and the boys in His Mercy and Grace. I pray for my mask!
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.
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
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….
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.
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….
The World Trade Centre – did the jumpers commit suicide or were they murdered? According to most religions the jumpers will go to hell because they took a life – albeit their own…. How stupid!!!!
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.
Different strokes for different folk… What pain medication works for one type of pain does not work for a different type of pain. Simple example: – Morphine does not relieve toothache or headaches….. It relieves bone pain.
Medicines can often help control chronic pain. Many different drugs, both prescription and non-prescription, are used to treat chronic pain. All these medicines can cause side effects and should be taken exactly as they are prescribed. In some cases, it may take several weeks before medicines work to reduce pain. To avoid dangerous drug interactions, tell your doctor all the medicines you are taking (including herbal and other complementary medicines).
You will likely be given medicines that cause the fewest side effects first (such as acetaminophen) to treat chronic pain. The dose will be increased or the medicines will be changed as needed. Medicines used to treat chronic pain include the following:
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin,ibuprofen (Advil, for example), ketoprofen, and naproxen (Aleve, for example). Always take NSAIDs exactly as prescribed or according to the label. Do not take a non-prescription NSAID for longer than 10 days without talking to your doctor.
Pain relievers that are applied directly to the skin (topical analgesics), such as EMLA cream or a lidocaine patch (Lidoderm).
Capsaicin, a naturally occurring substance that is found in chili peppers and is used to make certain topical analgesic creams.
Cooling spray. This involves using a cooling spray (such as Biofreeze) directly on the skin. This may be repeated several times.
Creams or gels containing medicines or combinations of medicines. The cream or gel is rubbed directly on the painful area. Some of these creams or gels can be made at the pharmacy according to your doctor’s directions.
Other therapies that may be used to treat chronic pain include:
Nerve block injections. An anesthetic is injected into the affected nerve to relieve pain. The anesthetic may relieve pain for several days, but the pain often returns. Although nerve blocks do not normally cure chronic pain, they may allow you to begin physical therapy and improve your range of motion.
Epidural steroid injections (injecting steroids around the spine). Although these injections have been used for many years and may provide relief for low back or neck pain caused by disc disease or pinched nerves, they may not work for everyone.
Vic’s pain medication as at 4.8.2012 (Transcribed from medication received from Pain Clinic
NO OF TABLETS
3 TIMES PER DAY
AUSTRELL PARACETAMOL 500MG
3 TIMES PER DAY
3 TIMES PER DAY
1 TIMES PER DAY
3 TIMES PER DAY
SRM RHOTARD 400MG (MORPHINE)
2 TIMES PER DAY
3 X PER DAY
2 TIMES PER DAY
1 TIMES PER DAY
2 TIMES PER DAY
2 TIMES PER DAY
This is scary. The amount of opioids Vic takes would certainly kill most people. Is Vic an addict? Certainly not!!
Opioids work by mimicking the body’s natural painkillers known as endorphins. They control pain by blocking pain messages to the brain. Because morphine is an opioid, some people worry about becoming addicted. When you take an opioid to control pain, it is unlikely that you will become addicted. The body uses the drug to control pain, not to give you a ‘high’ http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/morphine
I read a heart rendering account of chronic pain and the fear of being treated as an addict written by Tracy Rydzy, a Licensed Social Worker. http://ohwhatapain.wordpress.com/being-treated-like-an-addict/ Tracy writes a heart rendering blog on chronic pain and prejudge that she faces every day. Tracy writes: “I may be on medication, but I am intelligent and I know what is going on. Please understand that I didn’t choose this for myself. I don’t want these damn pills, but I have no other choice right now as I have exhausted my other options for pain relief. Don’t hold my condition against me. I understand the pen is mightier than the sword, so I can’t even ask to change dosages, I can’t request anything different, I certainly can’t be rude in any way (regardless of how you treat me) and I can’t question you because you hold my ability to move and get out of bed in your little prescription pad.”
We are so fortunate that we have access to The Pain Clinic run by very sympathetic professionals. We do not have a problem getting a prescription for the medication. Our problem lies in the fact that from time to time the pharmacy of the Helen Joseph Clinic runs out of Morphine both in tablet or syrup form. Sometimes we are able to get a private script from the Pain Clinic and other times I have to go back the next day, sit in a queue again, get the script and then get it filled privately. Try and get 4.2 litres of morphine syrup from a pharmacy…. Sometimes I am busy and then find it easier to pay a doctor for an appointment to get a script. We may get a script for 1 litre….
Fortunately Vic’s eldest sister is a pharmacist and we are known to the staff at that particular pharmacy. The times we have tried to use other pharmacies (because they do not have morphine in stock) we are treated with suspicion.
“Many people confuse physical dependence, which is the occurrence of withdrawal when the drug is stopped, with addiction. Withdrawal is a physical phenomenon that means that the body has adapted to the drug in such a way that a “rebound” occurs when the drug is suddenly stopped. The kind of symptoms that occur include rapid pulse, sweating, nausea and vomiting, diarrhoea, runny nose, “gooseflesh,” and anxiety. All people who take opioids for a period of time can potentially have this withdrawal syndrome if the drug is stopped or the dose is suddenly lowered. This is not a problem as long as it is prevented by avoiding sudden reductions in the dose.
Physical dependence is entirely different from addiction. Addiction is defined by a loss of control over the drug, compulsive use of the drug, and continued use of the drug even if it is harming the person or others. People who become addicted often deny that they have a problem, even as they desperately try to maintain the supply of the drug.
Addiction is a “bio psychosocial” disease. This means that most people who become addicted to drugs are probably predisposed (it is in the genes) but only develop the problem if they have access to the drug and take it at a time and in a way that leaves them vulnerable. A very large experience in the treatment of patients with chronic pain indicates that the risk of addiction among people with no prior history of substance abuse who are given an opioid for pain is very low. The history of substance abuse doesn’t mean that a patient should never get an opioid for pain, but does suggest that the doctor must be very cautious when prescribing and monitoring this therapy.
People with chronic pain should understand the difference between physical dependence and addiction. Unreasonable fears about addiction should not be the reason that doctors refuse this therapy or patients refuse to take it.
Tolerance to opioid drugs occurs but is seldom a clinical problem. Tolerance means that taking the drug changes the body in such a way that the drug loses its effect over time. If the effect that is lost is a side effect, like sleepiness, tolerance is a good thing. If the effect is pain relief, tolerance is a problem. Fortunately, a very large experience indicates that most patients can reach a favorable balance between pain relief and side effects then stabilize at this dose for a long period of time. If doses need to be increased because pain returns, it is more commonly due to worsening of the painful disease than it is to tolerance. “
Vic is “embarrassed” the amount of medication she needs to take to control her pain. She is oversensitive to the point of being paranoid about being called an addict.
Is my child an addict? Hell no!! Does it worry me that she needs increasing amounts of medication to handle the pain associated with the deterioration of her little body? Hell no!! Whatever it takes for one pain-free moment in her little life! Tracy to you and all the other chronic pain sufferers out there – I wish you all a sympathetic doctor, nurse and pharmacist!
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”
The journey of dying has many stages – I have heard it called check-in stations. I know that some people bypass some of the stages/stations. Some people take their time and linger. Some people die quickly and easily, like my beloved Dad and best friend Marlene.
My dad suffered with a terminal illness called Alzheimer’s. It was dreadful seeing that proud, dignified man’s brain slowly degenerate. He lived with us for the last 18 months of his life.
After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc. On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt. Dad played with the little ones and at the end of the afternoon abruptly got up and walked off. We let him be – he got tired of people and confused after a while.
An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat. He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge. Obviously my Dad’s balance was deteriorating. I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…
On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day. He recognized no-one and his legs no longer received the walk commands… Every time he got out of bed he would fall. I was sleeping on the second bed in his room so I could hear him get up. I would put my arm across his chest so I would wake up when he moved.
On the 4th of May 2011 Vic was admitted to hospital for operation number 80. On the 6th of May Vic spent 6.5 hours in theatre with her colostomy reversal. The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic” However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure. Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted. Even the pain of the Elastoplast in her neck is too much post-op. Apparently it is not a common error but it happens. With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…
By the 9th of May I was absolutely exhausted. I had been unable to spend any time with the boys. And they really needed me. Between Vic/hospital/work/ Dad and the boys I was absolutely torn.
That night I did not hear my Dad get up during the night. He fell again. We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly. Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU. Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead. Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.
My dearest friend was dead. She had simply had a heart attack and died! I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!
The next day I met with the medical team. Dad appeared to be in a coma. The physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist surgeon wanted to operate on my Dad’s aneurysm.
I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.
On the 13th it was my dearest Marlene’s funeral. The next day I discharged my Dad from the hospital and brought him home. We had received the Hospice bed and Hospice had evaluated and accepted dad as a case. On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously. Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …
I played his favorite classical music and tried to keep him comfortable. I treasured every moment that I sat and listened to his labored breathing but I was at peace. There was nothing unsaid between the two of us. Yet I was so sad…I did not expect it to happen that soon.
On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe. Twenty three days after his first fall…
Why the detailed timeline in this post?
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
For a long time Marlene wanted to die. She did her best and yet only when it was her time did she go. Not on her timing, terms or conditions. But when her time came it was quick and hopefully not too painful. Marlene wasn’t ill. She was sick of life!
If I could ask my dad I think he would have been surprised at how quickly he died. Do I regret my decision to not allow aggressive treatment? No! I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!
Vic has lingered for 10 years… It is really hard work for her…
I thought Sunday to Wednesday was a nightmare but boy oh boy come Wednesday morning and my child became a terror! The “my son really needs me” adrenaline kicked in and Vic was uncontrollable!
She was out of bed, marching into Jared’s ward as if she was the healthiest person in the world! I was at a total loss. My dearest friend Gillian wrote me a message: “What a wonderful mom. Her child comes before her illness. Will not let go until her kids are okay. You can be very proud of your daughter”… My reply was: “Yeah – too cross with her to give her any credit at this stage”
Vic cannot pace herself. Like on Sunday, she will be like a jack-in-the-box and when the moment is over, crash! In this super human effort to be there for Jared she causes so much stress to everyone around her. Jared stresses because she fusses around him, I stress because she is overdoing things again and I know there is a severe penalty to be paid for that, Jon-Daniel stresses for both them! Danie stresses for me… I get irritated with Danie for trying to protect me…. It is a vicious cycle of nerves!
Jared’s operation went very well. The poor baby was in so much pain but stoically brave! Not a whimper!! I am so proud of this beautiful boy. I was a little concerned for his emotional well being after Sunday. He cried with fear and frustration for his mother.
Vic was up and down the passages last night checking on her son! This morning Jared said “Oumie I am so tired. Mom kept coming in and touching me…” Vic means so well! She wants to be there for her children but often does not understand that she is the sick one. Her actions stress us out. On the other hand, I must admit, that I was more at ease knowing that Vic was in the same hospital as Jared and able to check on him…
It is such a heart wrenching situation. Vic wants to be a mother and I want her to be a child!! When she is okay she can be whatever she wants’ to be. When she is ill I want her to become my baby again… Vic is an amazing mother. She loves her boys with every fiber of her body. She has fought to stay alive for the boys. Who am I or anyone to deprive her of this wonderful privilege? At the end of the day it is her reward for surviving the odds…
On Monday the physician cancelled the bloods he had ordered and agreed that palliative care was the only route to go… I don’t think he thought she would leave the hospital alive… On Wednesday Vic was looking out for her son…What a brave woman my child is.
Vic was discharged from hospital this morning. It is Thursday.