Tag: death

Rest-in-Peace, Tony Nicklinson – Brave Warrior!


Tony Nicklinson

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!

Today was a bad day


Vic and her boys Christmas 2011
Christmas 2011

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.

Cannabis and Pain Control 14.8.2012


http://citydesk.freedomblogging.com/files/2011/04/bud.jpg

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

Skin to Bone 13.8.2012


Skin to Bone 13.8.2012.

Skin to Bone 13.8.2012


This morning, when I checked the BBM status’ of my loved ones,  Jared had the lyrics to Linkin Park‘s “Skin to Bone” as his status.  I did not realize that it was a song’s lyrics and wondered about the weird status.  Normally his status says something like “I love my beautiful Jelly Tot” or “Kirsten, my one and only”

After school, while we were waiting for Jon-Daniel to finish cricket practice, he asked me whether I had heard the song, “Skin to Bone”, before.  Obviously I hadn’t but even if I had,  I doubt if I would have been able to distinguish the words from the loud musical arrangement….I am not the greatest Linkin Park fan in the world!

He spoke about the lyrics and I asked him whether the song reminded him of his Mom.  He said “I suppose so.  When I first heard the words I thought of Mom”

Back home I downloaded the lyrics.

Linkin Park — Skin To Bone
Skin to bone, steel to rust
Ash to ashes dust to dust
Let tomorrow have it’s way
With the promises we made
Skin to Bone, steel to rust.
 
Ash to ashes, dust to dust
Your deception, my disgust
When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Right to left, left to right
Night to day and day to night
As the starlight fades to grey,
I’ll be marching far away
Right to left and left to right
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Let tomorrow have it’s way
With the promises betrayed
Skin to bone and steel to rust (x3)
Lyricsfreak.com © 2009

 “Skin to bone“, represents her frail body to him.  “Steel to steel” her steely hold on life!  Her refusal to give up.  “Ashes to ash, dust to dust”….. the inevitable

 “The promises we made” I would imagine the promise that he envisages is the unspoken promise that a parent makes at the conception of the child….. to love and hold the child – until death do them part…  The promise is not supposed to end in his early teens.

“Your deception, my disgust…..”  relates to his feelings of betrayal.  In a way he perceives his Mom’s ill health as a betrayal.  His Mom is not supposed to be this ill and suffer the way she does.  Vic was supposed to be a healthy Mom.  Their lives were supposed to be “normal.”  “My disgust” …. the despair of his life…..Anger for his mother’s suffering!  Disgust with the medical system failing her.  Anger for the OI gene.  He is unable to understand all the “why’s”.

 “When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.”

 Jared absolutely adores his mother.  He often says “Oumie, I don’t want Mommy to die.” I have however seen the sheer helplessness in his eyes when he sees her suffering the way she does.  I know that Jared too longs for his mother to be at peace, without pain – Her spirit freed from her frail, pain wretched body.  So my precious grandson joins the song and broken hearted sings along with Linkin Park

 “I’ll be happy that you’re gone.  Ash to ashes, dust to dust….”

Mommy I broke my Back!!


Vic as a Young Mommy

Mommy I broke my Back!!.

Mommy I broke my Back!!


Vic as a young Mommy!

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.

Dummy’s Guide for the Parents of a Terminally ill Child


Dummy’s Guide for the Parents of a Terminally ill Child.

Dummy’s Guide for the Parents of a Terminally ill Child


Danie and I with a happy and carefree Vic at Mabalingwe!
Vic and the boys before she had her blotched back operation

I often read about a child that had been ill for a long time and the parent being in denial. Death is never discussed. I know it may take months or even years for Vic to die. Maybe, with a bit of luck, I will die before she does. But when either one of us dies there will be nothing unspoken. Vic and I talk a lot. We talk about many things. If ever I think of something that I am not certain of, I ask her immediately.

I have fully accepted that Vicky is always walking the tightrope even when she is doing great. It is the nature of the beast and the beast can take you by surprise.

We have spoken about heaven and what a peaceful, healthy place it will be. We often speak about meeting again in heaven and Vic always says she is not scared of dying. Vicky feels terrible about leaving us behind.  She worries about leaving us all behind. She worries about how sad we will be. I wish I knew what to say to truly put her mind at peace and to let her “let go”…

It was very difficult to first raise the question of death. It started approximately 8 years ago with a tentative “Sweetie, is all your paperwork in order before you have this surgery?” and progressed to discussing and shopping for 18th birthday gifts, Confirmation bibles and 21st Birthday Keys. It was strangely “pleasant” going shopping with Vic. I knew that her mind was at ease having done the shopping. Maybe she will be around for these milestone events. Maybe not….. But Vic is prepared. She is far more prepared than I am. She has written letters to be read after her death. She has “special events” cards that I will give the boys when the occasion or need arises.

To arrive at the point, where we are, has been hell! No matter what age your child is, when you first find out that your child is terminally ill, your initial instinct is to shelter the child. (Regardless of the child’s age – the child will always remain the child!!) The parent’s first instinct is to leave no stone unturned. You watch the child like a hawk, looking for small signs of improvement or deterioration, looking for symptoms, hoping against all hope that the doctor made a mistake!

I analyze every ache and pain, hoping that the stomach cramps are merely side effects of the medication. I know when Vic is heading for a UTI; I know how her body reacts to different medications. Unfortunately there is no “Dummy’s Guide for the Parents of a Terminally ill Child”.

Professional counselling is available at a terrible cost. By the time your child is diagnosed or rather sentenced to terminal illness, hundreds and hundreds of thousands of rands has been spent on medical bills. Within two months of the new medical year the medical aid is exhausted….. The medication and treatment cannot stop regardless of the claimable amount left on the medical aid limits…  I have said it before – morphine or counselling???? No contest! Morphine wins hands down. Now in a civilized world Hospice should enter the picture at this stage….. Unfortunately we live in South Africa and Vic does not have AIDS or cancer. I pray that she will find the peace that I know she does not have.

No-one in the world can live in so much pain for so long!

It has to end sometime.

What can we hope for when there is no hope?


What can we hope for when there is no hope?.

What can we hope for when there is no hope?


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

Pain medication – Dependence or Addiction?


Pain medication – Dependence or Addiction?.. 

 

Pain medication – Dependence or Addiction?


28 days pain medication

What are the different types of pain medication options?

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).

Medication Choices

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:

Recommended Related to Pain Management

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.
  • Trigger point injections. These may relieve pain by injecting a local anesthetic into trigger points (or specific tender areas) linked to chronic fascial pain or fibromyalgia. These injections do not relieve chronic pain in everyone.http://www.webmd.com/pain-management/tc/chronic-pain-medications

Vic’s pain medication as at 4.8.2012 (Transcribed from medication received from Pain Clinic

TABLET NO OF TABLETS PER DAY
TRAMADOL 50MG 4 3 TIMES PER DAY
AUSTRELL PARACETAMOL 500MG 2 3 TIMES PER DAY
STILPAYNE 2 3 TIMES PER DAY
CYMBALTA 60 2 1 TIMES PER DAY
NEURONTIN 100MG 6 3 TIMES PER DAY
SRM RHOTARD 400MG (MORPHINE)   2 TIMES PER DAY
ELTROXIN .1MG 1 IN MORNING
BACTRIM 1 3 X PER DAY
LOSEC 20MG 1 IN MORNING
STEMITIL 5MG 1 2 TIMES PER DAY
MORPHINE SYRUP 25MG/5ML AS NEEDED
JURNISTA 4MG 1 1 TIMES PER DAY
PANAFORTE 1 2 TIMES PER DAY
DEGRONOL 2 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!

Happy birthday Mommy! 3.8.2012


Happy birthday Mommy! 3.8.2012.

5 Stages of Dying


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.