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.
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.
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
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:
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!
My tiny, petite little mom was born on the 3rd of August. She died on the 3rd of June 1997 from septic shock. My earliest memories of my mother are that she was a career girl. My Mom worked before it was fashionable for women to work. She loved having a career. I remember how proud of her I was as a little girl. My Mom was the “Bookkeeper” at a large German company. I used to love walking to her office after school.
My Mom had the tiniest little feet. She wore a size 3 shoe. But boy, could she put that tiny little foot down!
My Dad was fiercely protective of his wife. They were absolutely united against us kids. When Jared was a couple of weeks old we went to Bloemfontein to show him to my folks. My Mom played in a Bowls competition that Saturday afternoon. When Mom got home she was on such a high. Her team had won and she had a brilliant game. Mom sat on Dad’s lap; their faces were close together when she told him about the game. At one stage she threw her head back and they laughed….. Deeply in love, committed to one another, united in their love.
Mom died 3 months later….. Dad was absolutely devastated!
Today it is my Mom’s birthday. I wish that I could sit and have a cup of tea with her and just chat. I wish I could apologize for thinking it was absolute rubbish that she could not pluck her own eyebrows because she could not see that close….. That she had started losing her hearing in her late 50’s…
Muslims have a saying “Paradise lies at your mother’s feet”. At the feet of my mother I learnt all the values that I hold dear in my life. I wish I could thank her for the example that she set for us children. I wish I could thank her for teaching us the value of family, loyalty and unconditional love. I wish I could thank her for being this absolutely amazing grandmother to Vic. I wish I could thank her for supporting me through all my mistakes, troubled times, heartaches and joys.
I know that Mom held onto life until we as a family, one last time, confirmed her love of us to her….. We were standing around her deathbed and her time was so close! Yet she would not let go. Johan, my baby brother, said to her”Mamma, it is okay to go. You know we all love you. We know you love Daddy, Tes, Lollo and me….” Within seconds her battle against septicemia ended….
My Mom was such a brave warrior. She suffered ill health the last 20 years of her life. Mom had this amazing ability to bounce back after surgery. She too suffered chronic back pain. She adored Vic. Vic spent so much time with my parents. She was the beginning and the end of my mom’s life. I truly believe that Vic got her fighting spirit from my Mom. I often look at Vic and see my Mom. Some many of the little things that my Mom did Vic does….. Where blood does not run it gushes!
My Mom was very close to her Mother. We were very close to my gran. Mom was absolutely heartbroken when my Gran died. I think she never truly came to terms with her mother’s death. It took me 5 years before I could speak of my mom without crying. We have a family legacy of close mother and daughter relationships…
A Mother’s Love – Author unknown
A Mother’s love is something
that no one can explain,
It is made of deep devotion
and of sacrifice and pain,
It is endless and unselfish
and enduring come what may
For nothing can destroy it
or take that love away . . .
It is patient and forgiving
when all others are forsaking,
And it never fails or falters
even though the heart is breaking . . .
It believes beyond believing
when the world around condemns,
And it glows with all the beauty
of the rarest, brightest gems . . .
It is far beyond defining,
it defies all explanation,
And it still remains a secret
like the mysteries of creation . . .
A many splendored miracle
man cannot understand
And another wondrous evidence
of God’s tender guiding hand.
. Happy birthday my dearest Mommy. I love and miss you! I know when Vic’s time comes; you will be one of her angels guiding her Home!
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.
I have become accustomed to the ICU at the Donald Gordon Hospital. DGH has one of the best Intensive Care Units in the country. There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department. No full-time doctors or pain specialists in the Union’s ICU.
The difference is that the DGH is a private teaching Hospital and does not handle trauma patients. Only critically ill patients are admitted to the Donald Gordon ICU. The staff are all ICU specialists. Ok, I must admit that they also know Vic very, very well. For the past 7 years they kept Vic alive. Time and time again she has amazed and astounded them by surviving every conceivable Super Bug, ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs. The doctors that work in the ICU do work at the Pain Clinic. They understand the benefits of post operation Ketamine Infusions.
Over the years Vic has spent months and months in the DGH ICU…
When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her. He knows what she has been through.
This past weekend I spend a lot of time in the Union’s ICU. More time than I have ever been allowed to spend in the DGH’s ICU.
Vic, on Sunday morning, was like a wild animal caught in a trap. Her eyes were crazy. Vic’s pain levels were horrific and the ICU staff did not know how to handle it. On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”. I had to sit in the “Comfort Room”. It was so cold in there! The air-conditioning was turned down to near freezing levels. I was so cold that the bones in my body ached. At 03:00 I decided to go home. I was not allowed to stay with Vic and at that stage she was sleeping peacefully.
I was woken just after 07:00 by the ICU staff asking me to come to the hospital…
My well behaved, docile child had sworn at her nurse. She was insane with pain. Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down. I made the mistake of telling her to calm down… That was an epic mistake!!!
We eventually managed to get her pain under control and then the staff asked me to stay… I basically left ICU when Vic was discharged into the ward Monday afternoon …
Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support. In the one corner there was a young man. I would imagine that he was in his mid-thirties. “Was” is correct. He was declared brain dead yesterday morning. By now his organs may have been harvested. Maybe not. What I am sure of is that his bed is no longer occupied by his imposing body. Even in the claws of death he had an imposing physique and a presence. Yet he had no visitors. Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news. One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out… He was left to die alone.
Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family. The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals. Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.
I have a Living Will. I do not want to be kept alive artificially. I am absolutely certain about it. I cannot and will not be convinced otherwise. People should be allowed to die with some dignity. We all live to die…it is as certain as paying taxes.
What is the purpose of a life with debilitating pain??? I do not want to put my family through it – ever!! Oh I know my family will miss me. I know I am loved. I however know that we live to die. I look forward to dying. I look forward to what I have strived for all my life. Peace, no responsibilities, quiet… I know that I will go to Heaven. I have already been to hell. I live hell every day.
If I had been ill I could have handled it. I would quietly have found a way of leaving it behind. To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through.
So tonight I ask God again: PLEASE give me the pain. Allow Vicky to have some quality of life. Allow her a life. Allow her to be loved. Allow her to love unconditionally and without fear. Please let her be able to run… give her time on a beach; allow her to turn her face into the sun. PLEASE let her have a normal life, a job, independence or end this journey.
On Monday afternoon Vic was discharged from ICU to the ward. I asked the doctor to let Vic come home straight out of ICU. I can take better care of her at home than they can do in hospital. Vic is home and last night was a night out of hell. She was so ill, vomiting all night. She could not keep her medication down. No sooner did she take a sip or water or it just came spewing out. Pain control was absolutely out of the question.
Today I received a message from the Pain Clinic that the Hospice application motivation was underway. Hopefully we will have an answer by next week. If only I could give Vic meds intravenously it would be so much better.
Vic also needs physiological support/guidance in making peace with her situation. From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her. Vic needs to make peace with her journey and the trip itinerary.
But more about our family conference and Vic’s emotional battle tomorrow. It is time for her medication and I need to sleep.
Vic finally went to theatre on Saturday evening for an “emergency” operation. The arm was pinned. It is a long story that I will share once Vic is out of ICU.
She is doing well. Pain control as always was a major issue but is now under control again.
I have decided that Jurnista is a wonder drug.
Tomorrow Vic will go back to the ward.
Now we start worrying about the sepsis spreading from the septic spine and abdomen to the virgin arm.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo Buscaglia
I am disgustingly healthy! I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains. Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning. It is involuntary. I am a ninny. My family joke with my non-existant pain threshold. Yet I see the doctor once a year for an annual check-up as I did last week.
Liver, lungs, kidneys perfect according to my blood tests. Slightly elevated cholesterol count. Doctor says I am in near perfect health. So how do I understand my child’s pain and discomfort? I don’t! If you were born blind how could you ever understand or appreciate color?
There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome. http://connectivetissuedisorders.wordpress.com Katie gives me an insight into pain… She articulates her feelings beautifully. Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening. I will actually print the document and discuss it with the family.
Katie writes in red and my comments are in black:
Tips for dealing with people in pain:
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey. Vic very seldom is able to stick to a commitment. It fills her with remorse. She desperately wants some normality in her life. Some semblance of a social life. Pain and ill-health prevent it!
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it. Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence! As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life. As a family we become angry, frustrated and scared when Vic tries to “live”!
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. I never realized or appreciated this aspect of pain. I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain. Vic at times seems totally disinterested in the boys, the family, in life…
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. Vic battles with too much movement or noise. She becomes very irritated.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. Absolutely!! If Vic wants something she wants it now!
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. Sometimes I am too scared to ask. Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body! I am feeling like death”
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt. Tonight Vic could not rub the hand cream into her little hands. She could not pull a brush through her hair…
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others. I think Vic is past this stage. Her pain is debilitating relentless and never-ending!
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down). We are past the visiting stage.
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. Every small action elicits a “Thank you Mommy” Reuben actually remarked that in the past Vic took everything that I did for her for granted. At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Vic’s pain is well-defined but at times she has referred pain.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us. We do not understand pain. I never have pain. I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain. I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad? I don’t understand Vic screaming with pain but I KNOW her pain is real!!!
Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/
In addition to the above I would like to add some of my own observations…
13. Pain makes people emotionally over-sensitive. Vic often misinterprets what we say. She takes things very personally! She is almost jealous of the boys and my relationship. She feels excluded from so many aspects of our lives. Last week Vic said “You are the fun-Oumie. I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places… It is okay because she is scared of losing everything that is precious and dear to her.
14. Pain makes people selfish. This is a harsh statement. When your body is engulfed in pain it must be very difficult to see reason and to wait. It must be difficult not to lash out at the world. To not stop and think of the effect that your illness has on your family and friends.
15. Chronic pain and depression are closely linked. Chronic pain almost always leads to depression: Why? Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain? Imagine not having anything to look forward to… We try to set little goals for Vic.
16. Fatigue is a definite factor.
Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired. We leave her to sleep. We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired. Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…
17. Addiction:- “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“
The amount of medication that Vic takes is a source of great embarrassment to her. Her biggest fear is that people will think of her as a “drug addict”. This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about! Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.
I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain” But this is part of our journey…
Vic's Final Journey 