Today I researched a guide how to handle a terminally ill patient. The advise is as follows:
1. Listen, to the patient.
Tick. I like to believe that we do this. We listen to Vic’s fears, concerns and wishes. Vic does not talk a lot anymore. Her basic conversation is about how she is feeling, her pain levels and tiredness…she has discussed her last wishes, her wishes for the boys. There is nothing unsaid. All her paperwork is in place.
2. Respect their position in the family.
“If the dying loved one is a parent, then it is important to allow them to continue to live with dignity in their final days. Care for them, but don’t treat them like a child. They will be much more content knowing that they maintained the role of the parent until the very end.”
When she first moved home we really did respect her role but we are now at the stage that Vic is no longer capable of being the parent. We try and consult her on everything but it is difficult because she is either sleeping or out of it with pain. Quite frankly I think Vic is relieved that the boys are settled in and that we have assumed responsibility for them. It has also provided security for the boys. I actually disagree with this point of the “Industry Guide on Dying”
3. Share responsibility.
“A better strategy is to share and delegate care responsibilities with siblings or other family members. Sometimes only one family member takes the entire responsibility and it adds to stress or depression. Sharing the responsibility will help to reduce the burden on one person and patient also get the opportunity to talk with other members as well.”
Oops GUILTY!! “EPIC FAIL” as the boys would say. Vic is my baby girl. I do not want to delegate the responsibility of caring for Vic to anyone. Danie is amazing! He fetches and carries the boys. He has even driven to the Pain Clinic and sat there for hours waiting to get a morphine script. The boys help with small things but I try and shield them as much as possible.
It is not that Esther and Lani do not offer to help. They ask if they can help all the time. Rob and Tracy also offer help all the time. Reuben and Nonthanthle said they would come and stay at home to look after Vic if we wanted to go away for a weekend…Will I ever do it? No, No, No!!! And it is not because I don’t trust them…I am selfish! I want to spend every second I can with Vic…
My sister will come stay with Vic while Jared is in hospital.
4. Encourage them to talk.
“Giving a terminally ill individual a chance to talk about their life provides two benefits: it takes their mind off of the pain associated with their illness, and helps them find peace and satisfaction with everything they have enjoyed and accomplished throughout their lives.”
We are past this stage.
5. Seek professional help.
“The individual who is caring for a terminally ill relative will likely to be burdened with a great deal of mental stress. They may also show symptoms of anxiety or depression. Family therapy or support group or psychological counselling can help the caretaker to cope up.”
We have sought professional help for the boys. They are seeing a wonderful lady, Renee, on an informal basis. There is no way I am going now. Later maybe. I have managed to keep my emotions well packaged, together and organized.
The one thing that is missing from the Guide is that no where does it say “Seek Professional Help for the Terminally Ill person” I think this is due to the fact that is assumed that at this stage of the journey Hospice is already in place. Well, maybe in the rest of the world but not in South Africa. Hospice care is only available for AIDS and Cancer patients and then also for patients with an Advanced Neurologic Disease or Organ Failure. Osteogenesis Imperfecta does not fall into any of the categories.
A country is judged on how it cares for it’s citizens. As much as I love South Africa, our government fails it’s citizens basic constitutional rights as far as medical care goes. Is there anything I can do to change it? Well I don’t vote for the ruling party, I endeavor to alleviate poverty and to make the country a better place. I will have to find a way to improve palliative care for the dying in this country.
“Death should simply become a discreet but dignified exit of a peaceful person from a helpful society …..without pain or suffering and ultimately fear (Phillipe Aries 1981)”
Well, I am seeing Prof Froehlich on Tuesday and I will NOT leave her office until she has spoken to Hospice. For years I fought to keep Vic alive. Now I will fight for her to die with dignity! Doctors have made U-Turns in the passages when they see me – this will happen again!
So be warned Hospice. The Mother is on the Warpath!
Today was a day out of hell for Vicky. She is deadly pale – she actually has a ghost like appearance. She was so ill that she was unable to take pain medication and now her pain is out of control.
If I am having a hard time with this how must this poor child feel? HOW CAN SHE CARRY ON???
Jared has withdrawn completely! Rene, Jared’s councillor managed to speak to Jon-Daniel today. He is in total denial! He said “My Mom is a miracle. She was not supposed to live past the age of 12 The doctors said she would die when she fell pregnant with my brother and me and she is still alive. Lots of times they said she would die…She will get better again”
At first I was filled with disbelief and then I realized with a shock that Jon-Daniel is right! A couple of weeks ago I bumped into an ex-business partner. When he inquired after Vic’s health I said that she was desperately ill and that I thought that the end was near. Frik laughed and said “that is what you said 15 years ago when she was pregnant with her eldest son…”
Reading some of the pre-blog stuff that I wrote and when I look in my Bible there are markings “Vic ICU“, “Vic critical”, etc etc etc.
Vic has been on death row all her life. I know we start dying the day we are born but for most of our lives we are oblivious to the fact. At funerals we may think of our own mortality but for the rest of it we think we are invincible. Jon-Daniel thinks his Mom is invincible.
A colleague asked me earlier today what he should pray for when he prays for Vic. I replied “Mercy”. When I got home tonight and I saw this tiny, pitiful little bundle doubled over from the pain, I panicked and thought to myself “What if Jon-Daniel is right and she gets better again?”
If there is a God He will release my poor child from this dreadful life! It is an inhuman existence that not even an animal deserves. If Vic had been an animal she would have been put out of her misery a long time ago!! God does not have to heal her. He does not even have to take all her pain away. If she could just have SOME quality of life…some pain free time with her boys… Please God hear my prayer!
It was a rough weekend for Vic. Although we had a house full of loving visitors she was in so much agony.
Vic is experiencing severe intestinal cramping. Again her abdomen is very distended and quite hard to the touch. She is also nauseous. I know these are all signs of an obstruction but I know it isn’t an obstruction. Maybe a partial obstruction at worse.
Vic is on a strict pain control regime. Every four hours she has pain medication in one or other form. She has to eat to be able to take the medication as she already has a vicious ulcer. I asked her what she felt like eating for lunch and she replied “Just a cocktail that will send me to heaven”. This is not the first time that Vic has said this…
Conceding defeat… Wanting to die…
Vic has also gone through a mourning and grieving process. Every bit of independence that she has ever known is lost to her. Most things that Vic has ever loved doing, eating, drinking is a long-gone memory. Things that she took for granted are now an event. In her state of dependence Vic has become a soft, gentle sick person whose life consists of saying “thank you” and ” Mommy, I am not feeling well at all” Even as a child Vic would listen to the news every morning when she woke up. Now she is no longer even aware of what day of the week it is.
Vic loved being a Mommy. She loved caring for her boys. She always tried to tuck them into bed at night. My Dad always said that if Vic had one breath of air she would organize a party…
I keep asking the question “when will it end?” It is so difficult for Vic to die that I should maybe be asking “How is she going to cope with this level of quality of life for many more months or even years?” Maybe the question should be “How will she die?” Will she develop pneumonia from immobility of will she develop a fully fledged obstruction? Maybe her brave heart will give up the battle? If there is a God of Mercy Vic will go to sleep and not wake up.
I know that whilst there is one breath of air left in her little longs we will care for her and fight for her to continue breathing. Vic is long past the stage of living. She merely breathes.
Jared and Jon-Daniel 12.10.2011
It has been a busy weekend! Friday afternoon Reuben and Nonthanthle came to visit. Reuben is my son from another mother and Nonthanthle is his beautiful wife. She is 14 weeks pregnant with their first baby. Life and death go hand-in-hand and I wonder if this is the baby that will celebrate Vic’s life?
Reuben is a pastor in a poor community. He is an amazing person filled with love and compassion. I truly admire him for all the hurdles he has overcome in life. He is proud and yet not scared to talk about his fears. He fears that he will not be a good father to the baby… It made me think: What makes a good father?
So today, on Fathersday, I reflected on fatherhood…
I was blessed with a wonderful father. My Dad was a gentleman as well as a gentle man. He was a wonderful provider, husband, father and friend. A cruel blow of fate was dealt this wonderful, proud man when he was diagnosed with Alzheimer’s. Mercifully my dad succumbed to Alzheimer’s Pneumonia on the 20th of May 2011. So, even though I could not wish him a happy Fathersday today, I have first hand experience and knowledge of what a good father should be like…
Danie is a wonderful father to Vic. If she had been a biological child he could not have been more caring and loving than he is. Vic’s own father could not handle the guilt knowing that he was a carrier of Osteogenesis Imperfecta. He coped with the diagnosis by walking away. He could not handle seeing her broken little body knowing that it was his genes that caused it. We were so young. I no longer judge him but I am grateful that he is not around to see her suffering now. I know that when the time comes Tienie will be around to help her pass…
Vic so desperately wanted to get out of bed to be with the family at lunch. Poor poppet only made it to the bathroom. She sobbed her little heart out. Esther, gentle soul that she is, lay with Vic until her sobs subsided. .. Eventually the pain meds kicked in and she was able to sleep peacefully for a while.
I received a sms from Robbie (Vic’s friend) and she wrote ” I feel so sorry for you all. Poor Vicky. Its too awful. For all of you. One wonders if God is watching. I always pray for you but you don’t seem to have a guardian angel”
Some days I agree. Today after having the kids around for the day I disagree. Guardian angels come in many different forms. Some come as a young pastor who travels far and at great expense to come and pray for Mercy, a sister (Esther) who lies beside Vic and cries with her, another sister (Lani) who brings flowers and milk tart, a Dad who takes Vic toast and coffee at 06:30 so she can have tablets. We are surrounded by guardian angels…
I pray that Vic will have a good night’s sleep – undisturbed by pain.
I pray for just one more good day with the boys.
My heart nearly stopped when I walked into Vic’s room this morning. She looked as if she had died. Vic had had a terrible night and actually, a terrible day too.
Today, I again realized that Vic is truly a prisoner of pain and despair. For 36 years she has held onto life, against all odds. Poor precious child. I cannot help but ask the question “Why was Vic dealt such horrible cards in life?” Surely there must of been people more worthy of this tortuous life??? Oh yes, the purification process… Surely we have been through the melting ovens enough – if we have not been purified by now it will never happen! Now whoever brought this upon us – please move along!! It is someone elses’s turn.
Vic once said to me that if she believed in reincarnation she may have understood her life. She would then have believed that she was Pontius Pilate in her her previous life…
If I could change places with my child I would. If by any magic I could take over her pain and misery – even for a couple of hours, I would. I can’t!!!!!
“Where there is life there is hope”. Who came up with that stupid cliche? Vic has hoped and prayed for so long! Everyone has prayed for her. People from all continents and across all religions and denominations have prayed for her to be healed. She has been anointed with oil. And then there are those religious know-it-all’s who claim that the sins of our forefathers have brought this curse upon Vic. What absolute hogwash! How can people, who believe in a God of Mercy, make such a statement?? Either there is a God of Mercy and a Son who died for our sins or there isn’t! You cannot have it both ways!
Walk in our shoes for one day before you make such cold, uncaring, loveless statements. Look at Vic’s beautiful sons and then YOU, oh righteous, pious one, tell them that Vic’s journey is because of a curse cast on her by the God that they trust and love…
We’re all on a journey toward death anyway – how we get there, and what we’re able to do in that time is the important thing. But all journeys have an end. I pray that Vic’s journey will end! 
“I am going to dance my way to heaven because I have already been through Hell” – is the copyrighted saying of a brave lady who is terminally ill. I cannot find her blog nor a reference in Google that this is the case, but I would like to credit her with this. It was posted in Vic’s facebook by a family member. If I created the impression that it is my clever line I apologise! The credit goes to Martha Mayhew-Merson – Meriale46@aol.com
This afternoon Vic and I were chatting and then she said: “Mommy, why does God hate me? Why does He let me suffer like this? Why doesn’t He allow me to die?”
I could not come up with a reply. I don’t have an answer to this question that not only haunts Vic but so many other people. Today Rob Cramp, Tracey, (both very dear friends to Vic) as well as Hermien, the pharmacist, asked me exactly the same question.
“I’m going to dance my way to heaven, because I’ve already been through Hell.. Vicky Bruce you are one of God’s special angels.” My young niece, Muriel, posted this apt message on Vic’s Facebook Page. Sometimes I think the Catholics are right about purgatory. Only this must be the purgatory stage of our existence. This existence of ours can only be Hell…
I omitted to say in yesterday’s post, that with a few exceptions, euthanasia and assisted suicide are very cowardly actions – the ill person getting their caregiver to do the dirty deed. It is such a selfish action. If the sick person can swallow their own tablets they can take their own lives. This is my opinion.
Life is hard but death is even harder.
Tonight I am feeling mentally and physically exhausted. Depressed actually.
Tomorrow I will feel better. Tomorrow my brave child will continue her relentless battle against pain and indignity.
God have mercy…
Today was a mixed day. Although Vic seems marginally more ill and weaker than yesterday she was more upbeat. When the boys got home we all had tea with her and the boys joking brought a smile to her beautiful little face. For approximately fifteen minutes there was easy banter in her room. What a change – our conversations tend to revolve around bowel movements and the color of vomit.
Lying on her bed with me I realized how small our world has become. Vic’s days consist of Eat, Sleep, Vomit or Eat, Sleep, Tablets – one of the two combinations. It is amazing that she has not developed bedsores yet.
The Concise Oxford Dictionary defines euthanasia as being “gentle and easy death; bringing about this, especially in a case of incurable and painful disease”.
I have a simple theory. Most people who are terminally ill and of full mental capacity are able of ending their own lives at one or other stage of the disease. The terminally ill are able to take that extra dosage of morphine themselves. The vast majority of people have an incredible desire to live and will live through pain and suffering and continue to breath! Euthanasia is not the issue… You really want to die, you will find a way to die
In the event of a patient suffering from a disease or illness that incapacitates them i.e. motor neuron disease where the patient is ventilated or the patient was left severely brain damaged from an accident, life sustaining treatment should not be allowed. If doctors are allowed to prolong lives should they not be allowed to end life? I firmly believe that doctors do not know when to give up. Vic’s Dad, Tienie, had severe brain damage after a car accident and yet the ICU team resuscitated him after the brain damage had been confirmed! Why??? What is the purpose of breathing when you are not able to walk, love, talk, breathe on your own?
Professor S A Strauss in his book Doctor and Patient Law, 1984 edition published by J L van Schaik on page 387 states that “in principle every person is legally entitled to refuse medical attention, even if it has the effect of expediting his death. In this sense the individual has a right to die’. All that is required is that the declarant, at the time of making his refusal known, is compus mentus…
In the case of Vic she is on 400mg of morphine twice per day and takes 25ml of morphine syrup every 4 hours for breakthrough pain. Vic has become morphine resistant and the dosages are increasing to keep her incredible, debilitating pain at bay. Surely the dosages of pain medication that she is on must become lethal? I know that it is Vic’s doctor’s primary intention to make her life as comfortable as possible by the administration of pain alleviating medicines. Yet the mercy shown to her may have the side effect of hastening death… Please do not misunderstand me – If I knew how to pray I would pray for her suffering to end!
Vic has a living will with a DNR (Do Not Resuscitate) clause. I will ensure that it is enforced if the “need” ever arises.
Sometimes I am scared Vic will not die – that she will continue to live, no breath, in this hell that we call life. The bottom line is however that Vic will NEVER take an extra dose of morphine and NO ONE will ever administer an extra dosage of morphine. We all fear God’s retribution for murder… both the terminally ill and their caregivers.
As my dear friend Mohammed says:- her life is in the hands of her God. We can speculate as much as we like, we have absolutely NO control over life.
I hate seeing Vic suffer but I so cherish the 15 minutes we had today. Fifteen good minutes in two months…I know I would have taken that extra dose of morphine a long time ago if I was her her shoes.
The world is filled with evil, bad people. Why don’t they suffer the pain and indignity that my sweet, loving child suffers? LIFE IS NOT DARN FAIR!!!!!!!!
28 days medication….
This weekend we were showered with love. A good weekend for us as a family but a lousy one for Vic. Vic is in a lot of pain. Mercifully she sleeps most of the time. The sharp stabbing abdominal pains are getting worse. Strangely her temperature is only slightly elevated but her heart rate and blood pressure is high. Signs of pain… Today was particularly bad, Worse than yesterday…
Esther brought Vic wonderful nutritional rusks – so she can take MEDs first thing in the morning, Lanie a huge pot of sweet corn soup that Vic devoured and Tracy Chinese soup and cake for the family. Gill popped in with Chelsea buns. I was so touched by the caring of our family. I know it is hard for them to see Vic like this. Gill, as she walked down the passage to Vic’s room said, “now my blood pressure is going to be high again…”
Gill lives in Whiteriver, a four-hour drive from me. We have been friends for roughly 34 years – literally and figuratively through thick and thin. As young Mom’s I did blood and plasters and Gill did dentists and invasive tests. When Vic was in hospital, as a little girl, Gill would sit with her and Len would take me for tea and anchovy toast!
In 2007 Vic was desperately ill and I sent Gill a text message at 9.30pm to say “Vic is in trouble. Been put onto life support. Pray for her” The next morning Gill walked into the hospital to be with me. When the doctors told us they were switching the life-support machines off as Vic had no chance of getting better and surviving the septic shock and ARDS, Gill sat with me. Gill came home with me and helped me tell the boys that the doctors said their Mommy was going to die… We took turns in holding the boys that night. The next morning we walked into the chapel and prayed that God would spare Vic one more time… Gill stayed with me the entire day. God spared Vic.
Gill is an amazing person – she works so hard on her friendships. She has a clipped way of speaking and has amazing compassion. She chats to the boys on BBM. She checks in with all of us on a regular basis. I think she is amazing because we are all so focused on Vic that we sometimes forget to ask the boys how they are!
What I want to say is that this is so hard for the people around us too. Many people/friends have come and gone but Gill and Len have stuck around. There are other friends too – not many though. And of course our wonderful family. It is hard for them to not only see Vic suffer but also the rest of the immediate family. I will go to my grave eternally grateful for this wonderful friendship.
Poor Lani arrived this morning with her eyes swollen from crying. Yesterday would have been her sister-in-laws 40th birthday. Anmar tragically died in a car accident in November last year. Of course my blog triggered so much emotion in her. She has decided to take a break from the blog as it is too difficult for her to read. She has such a “soft” heart.
It is amazing how Danie’s kids have accepted Vic and I into their lives. How they talk about their sister. Vic grew up as an only child and was 16 years old when I married this wonderful man. She hated Danie and spoke of him as “that man”. But from the second that we said “I do!” Vic has called him Daddy…Danie has treated her exactly as if she is one of his own! On Saturday morning he took her toast and coffee at 06:30 so she could take her tablets and allowed me to sleep in. During the week Jared makes his mom breakfast so I can sleep. Vic has MEDs at 03:00 and I go to sleep after that. Thank goodness I work from home and can sleep in a bit. The nights seem to be more difficult for Vic than the days.
I am rambling. Thank you Esther, Lani, Gillian and Tracey for your love and support.
Today was another bad day! Esther came to visit and was in tears when she walked out of Vic’s room. Not because Vic looked worse but because Vic actually admitted to Esther that she was feeling terrible. Vic will not often admit to anyone that she is not feeling well. The minute someone walks into her room she puts on a mask. She is always “fine”. Normally she laughs too much and too loud – I have just realized that I have not heard her laugh in a couple of weeks. When last did she laugh?? I don’t even know when last she came through to my TV lounge! Over Easter she would still come through and lie on the sofa and watch TV with the boys and me. Deteriation has sneaked up on us…
When Vic came to live with us, seven months ago, she was so scared that we would highjack the parenting role from her. She was a little dictator. She ruled her boys with an iron fist. I always smiled at how tiny she is and how “scared” the boys are of her. When she speaks they listen. Scared is the wrong word – respectful may be a better word. Every morning she got up with the boys and took them to school. Most afternoons she would pick them up from school. We would help only if she asked. It must be almost four months that we have taken over the fetch and carry duty from her… Vic is no longer able to parent the boys.
It is amazing how everything always works for the best. I am so grateful that Vic is back home. She has seen that the boys are settled and happy.
Vic has raised two beautiful, caring, compassionate, honest boys. She has made her mark in life and will leave “two monuments” of her mothering. I am so proud of my child!
It is amazing that in seven months her health has deteriorated to this extent. For 10 years she has been living with a death sentence, she has been in and out of hospital, in and out of the theatre, in and out of ICU…but never bedridden. She has always walked or tried to walk. She has always tried to remain part of the family and take care of the boys. She loves driving her little car and fetching the boys from school and taking them for milkshakes. Watching them do sport…For 10 years she has gotten dressed every day at home! Always wore make-up and had her hair immaculate. The past two months she has remained in bed, in pajamas with no make-up. She has been “out of bed” three times in two months. Once to the pain clinic…And then paid the price…
Today Vic received a beautiful note from her childhood friend, Gia. She was so delighted and we will try and reply tomorrow if she feels a bit better. I am so proud of Gia – Senior Director of an International Corporation…Amazing how a “child” becomes this “international expert”… When we spoke about Gia Vic said “I must be such a disappointment to you. I have done nothing with my life!”
I have thought about that – Vic always knew what the prognosis for Osteogenesis is. She was determined to live life and not waste it on unnecessary activities…She only ever wanted to be a Mommy and a wife. She is a wonderful Mommy. If Vic had a career she would not of had been able to spend the time with her boys that she did. Vic has put a lifetime of motherhood into 13 and 15 years respectively. I am so proud of the mother that she is, the daughter she is, the person she is. I love her unconditionally. I am proud of my beautiful, brave, caring, loving child.
Vic is the bravest person I know! For many years she bravely fought OI – Now she has made the bravest decision of all…the decision to give up the fight.
May God give Vic the strength for this last heartbreaking part of her journey. The long goodbye…
Today is really a bad day! Vic is not well at all! She is experiencing severe intestinal pain. I think it is the adhesions that maybe causing the pain.
I have visions of the adhesions strangling her intestines. Adhesions are like ivy – fast growing and aggressive. Her surgeon says that the adhesions have formed a solid concrete wall and the tissue is like soggy tissue. I look at diagrams and photos of adhesions, partial and complete obstructions and I find it difficult to come to terms with the fact that the surgery that saved her yesterday is killing her today.
We have reached a stage in Vic’s journey where she is almost 100% bedbound. She needs help with every facet of her life.
Vic is very aware that her declining health is leading her towards death. She says she is not scared of dying but I know that she has many other fears and emotions. She fears for her boys and us – how we will cope with the inevitable. She worries about the emotional and financial stress of her situation. She grieves the fact that she will not see her sons graduate or marry.
People say “well, at least you can say goodbye…I never got to say goodbye to my loved one…” Today I want to say to those people “Be Grateful”! Do you think it is easy to stand next to the bed of your child seeing her suffer? Fighting back tears of frustration because you are so darn helpless! Watching as every day she loses more of her dignity? Seeing the tears of pain run down her pale cheeks? Think again! Prolonged goodbyes are absolute hell.
Just about the worse part of the situation is the helplessness that I see in the boys’ eyes when they look at their Mom. I see their red-rimmed eyes. I hear them cry in the privacy of their rooms. I can only hold them. I cannot say everything will be okay or that things will be better tomorrow. Because I know it won’t be!
“Mommy, I am sick” Every time Vic opens her eyes she utters these words.
Vic is running a slight temperature, her heart rate is up, she is nauseous and her tummy is cramping. She is deadly pale and looking so old and forlorn.
We all know people who have been diagnosed with a terminal illness and have lived far past their doctor’s expectations. In our own family Leon, our son-in-law was diagnosed with grade 4 colon cancer. Today, mercifully and against all expectations, Leon is in remission and living a full and healthy life.
Why is it that some people die quickly, while others are able to linger or even recover? If it were a simple matter of “willing it” most people would never die. Yet, so many times I have seen/felt that definitive moment when I KNEW Vic would live. Maybe it was a twitch or something – I cannot define “it”. Each and every time when the doctors had given up, the death councillors had been called in; there was that definitive moment when Vic walked away from death. It was almost as if Vic shook her shoulders and made a U-Turn… I could see it!!!
Vic has defied the laws of “dying” many times. Liam, one of the ICU doctors at the Donald Gordon says he wants to write a book on Vic’s fight and victory against death
Faith and prayer may provide comfort and strength, but certainly offers no guarantees of recovery. Many faithful have lost their lives to illness long before they were ready to say goodbye. Wealth, intelligence, good looks, and a charming personality may be great gifts to have, but disease plays no favourites and claims people from all walks of life. The bottom line is that some who are diagnosed as terminal will die, but not everyone will. Some will beat the odds. So far Vic has.
Will she win what we believe to be the final round? Life aka Vicky vs. Death… Ten long, long years she has fought with every fibre in her little body. I sense that she is tired. Ready to concede defeat… She says she isn’t scared. I am! I am scared of facing life without my baby. This is the first exam EVER that Vic has not been studying with the boys. She has always willed them to study. When she was in hospital she would encourage and push from her hospital bed. Now she is not even aware of whether they are home or not…
In 1994, responding to the need for a more useful system for describing chronic pain, the International Association for the Study of Pain (IASP) classified pain according to specific characteristics: (1) region of the body involved (e.g., abdomen, lower limbs), (2) system whose dysfunction may be causing the pain (e.g., nervous, gastrointestinal), (3) duration and pattern of occurrence, (4) intensity and time since onset, and (5) etiology.[9] This system has been criticized by Clifford J. Woolf and others as inadequate for guiding research and treatment.[10] According to Woolf, there are three classes of pain : nociceptive pain (see hereunder), inflammatory pain which is associated with tissue damage and the infiltration of immune cells, and pathological pain which is a disease state caused by damage to the nervous system (neuropathic pain, see hereunder) or by its abnormal function (dysfunctional pain, like in fibromyalgia, irritable bowel syndrome, tension type headache, etc.).[11] http://en.wikipedia.org/wiki/Pain
Nociceptive pain is caused by stimulation of peripheral nerve fibers that respond only to stimuli approaching or exceeding harmful intensity (nociceptors), and may be classified according to the mode of noxious stimulation; the most common categories being “thermal” (heat or cold), “mechanical” (crushing, tearing, etc.) and “chemical” (iodine in a cut, chili powder in the eyes).
Nociceptive pain may also be divided into “visceral,” “deep somatic” and “superficial somatic” pain. Visceral structures are highly sensitive to stretch, ischemia and inflammation, but relatively insensitive to other stimuli that normally evoke pain in other structures, such as burning and cutting. Visceral pain is diffuse, difficult to locate and often referred to a distant, usually superficial, structure. It may be accompanied by nausea and vomiting and may be described as sickening, deep, squeezing, and dull.[15] Deep somatic pain is initiated by stimulation of nociceptors in ligaments, tendons, bones, blood vessels, fasciae and muscles, and is dull, aching, poorly localized pain. Examples include sprains and broken bones. Superficial pain is initiated by activation of nociceptors in the skin or other superficial tissue, and is sharp, well-defined and clearly located. Examples of injuries that produce superficial somatic pain include minor wounds and minor (first degree) burns.[13]
Vic’s pain falls into all of the abovementioned classes.
Today was a very bad pain day. This morning Vic said “Mommy my body is so sore I cannot cry. My eyes are just tearing…”
I don’t understand pain. I have never been seriously ill. Once every couple of years I may get a cold or flu and then I immediately start moaning and groaning. I am such a wimp!! I could never understand tummy-ache. I have NEVER had tummy ache in my life! I once said to my friend Marlene that I lie in bed and I try and will my body to “pain” – needless to say it just doesn’t happen that way. Marlene said there was a certain laxative that she had used that gave her very bad tummy cramps. I desperately needed to know what my poor baby was experiencing every day.
I bought a packet of the tablets and took one. (I sleep from half a Disprin). Emotionally I was prepared to experience the pain, more specifically the tummy ache that my child lived with every day of her life. Well, I nearly died from pain. Nothing could ever prepare me for the tearing pain that wracked my body. I cried, prayed, begged God to let me die… My ordeal lasted maybe 30 minutes…
Vic is so brave. I know with every fibre in my body that if I was subjected to that type of pain every day of my life I would end my life.
I believe in Euthanasia. The right to die with dignity. Is “die” the right word? I think not! I think a more accurate description would be “the right to stop breathing” because when one is in so much pain you are no longer living – you are only breathing. Will I ever give Vic an extra dose of morphine? Hell no!! She wants to live. She fights to breathe. She wants to see her boys grow up.
Vic was very emotional today. Maybe it is just the physical pain. It breaks my heart when she is sad. A couple of weeks ago she said to me “Mommy, it makes me so sad to know that no-one will ever love me again.” Even as a little girl Vic always wanted to be married and be a mommy. She was three years old when she started playing the “Guess what my baby’s name is going to be when I am big?” game.
This morning Lanie came to visit. She is truly a breath of fresh air. She is our biker child. Last year she bought a Ducati Monster bike. She lives life to the full. She is a fun mommy. On Friday she popped in with the girls for a quick visit. Tom, her husband, also left work early to visit. The girls, Kari and Simone, performed a little concert and for a short while we laughed and forgot about the cloud of illness, impending death and excruciating pain that hangs over our home.
The boys are studying so hard! Hope their exams go well tomorrow!
Today was another bad day. I had to let Prof Froehlich know that there will be no Ketamine Infusion tomorrow. On the one side I am so disappointed because maybe, just maybe, it may have worked. On the other hand I am relieved. Five hours under anaesthetic would be a killer on her spine and intestines. Third last operation Vic developed a skull fracture from lying on an operation table for 4.5 hours. This procedure would have been done without her normal theatre team who understands her Osteogenesis and her frail condition. They understand and know she will fracture on the operating table if not handled with the utmost care.
I really feel we are in an absolute no win situation. Not even the pain control procedures can be done without causing further harm to her little body.
Michael Wolff of the New York Magazine writes “The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live, the longer it will take to die,” he writes. “Part of the advance in life expectancy is that we have technologically inhibited the ultimate event.”
Now technology has finally deserted Vic.
The boys are starting exams this week. Jared has worked so hard with Rene on his maths this weekend. I hope they will do well. Poor babies have so much to cope with – they cannot still cope with poor marks and the consequences of it.
On the 27th Jared will undergo major surgery. Poor baby has a reflux problem that has caused third degree burns to the oesophagus and he also has a massive hernia. The doctor says there has been “cell changes” so I hope and pray he will be okay.
In this house we seem to go from one heartache to the next.
Tomorrow is another day I suppose.
Writing a blog is scary. I am very aware of the fact that I am baring my soul to the world. It makes me feel weak and vulnerable. Naked to the world…
Over the years I have written many unpublished “blogs” – it is a coping mechanism. After my mom’s passing I wrote her letters. In these letters I lamented our lot, wrote about my childhood memories, my happiness, fears and frustrations. When my dad moved in with us I started researching Alzheimer’s and discovered the therapeutic value of a Caregiving Forum. I started reading blogs of other AD caregivers’ journeys with their loved ones. I have made many online friends with other caregivers that are in the same situation as we were in. My dad passed away a year ago and I still subscribe to the blogs and forums. I feel “connected” to my Dad through this.
So when you read my blog, please know that I am not looking for sympathy. I am selfishly coping with my pain and fears. I hope somewhere the blog will of some value to someone who may be in the same situation as we are. I am not blogging to move anyone to tears – I am blogging through my tears. You see, when we are around someone who is terminally ill, we cope through a conspiracy of silence. We talk about mundane things, we smile and even laugh but it is superficial. We do not share our deepest feelings, our tears and sorrow.
Vic often says she worries how I will cope with her passing. How ironical is that?? But I know it is because I won’t cry now. 
Vic's Final Journey 