“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”
–Dame Cicely Saunders
Tag: End-of-Life
Mommy, I thought I had more time….
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.” –Dame Cicely Saunders
The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman. She has a gentle voice and long fingers with short nails. She drives a Jeep and keeps large dogs. She looks like a naturalist.
“I am Dr Sue Walters from Hospice. The Pain Clinic asked us to see you. Is it okay for me to examine you?” she asked Vic in her gentle voice.
Vic’s abdomen was severely distended and very tender. She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication. Vicky’s vitals were poor.
Sue administered a strong morphine injection.
“Vicky, you appear to have an abscess on the right-hand side of your abdomen. The skin is hot to the touch and distended. I think you have a partial obstruction.” Dr Sue said to Vic.
“I am here to see if Hospice can help you. Do you realize that you are very ill my love?” Dr Sue asked Vic.
“Hospice will not hasten your death my love. It would be our aim and purpose to provide you with pain relief and quality of life. We will treat you and not the disease. It is exclusively your decision whether you want us to help you and how you want us to help you.” She explained to Vic
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care
Vic was in so much pain that she was barely able to speak. Tears welled up in her eyes and she softly said “Please doctor”.
“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked
“I want no life extending treatment. I am so tired doctor” Vic whispered. “I can’t do this anymore…..”
“That’s fine my love. We will try and relieve your pain and give you some quality of life.”
“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.
Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a subcutaneous morphine syringe system by that afternoon. Hospice would arrange for counseling for the boys.
She hugged me and left. All of a sudden I felt so alone again!
Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.
The first couple of days Vic slept a lot. She was tired but there was immediate pain relief.
The nausea subsided and the partial obstruction cleared two days later!
The first infusion site was in her leg. Within a day and a half the area “tissued”. A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain. We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm. Within two hours the needle came out again and the morphine was running onto the skin. It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.
Last night the tissue in the abdominal area had tissued again. It was also bloody and the morphine was running onto the skin and not into the tissue. Vic was nauseous with pain. I had no option but to remove the needle and re-inserting it into a different site.
“I think we should put it into the other side of your tummy” I said
“Mommy, I will insert the needle if you help me…” Vic replied
“No sweetie” I said. “I will do it”
My heart was in my throat. I removed the needle and cleaned the injection site. I disinfected the new site that I had identified. I took the needle in my hand and lifted the skin. I pushed the needle against the skin. I assumed that the needle would just slide in… It did not just slide in! There was resistance!! I let go of the skin and changed my position. I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.
“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.
I exerted pressure on the needle and it slid in… Sweet success!!!!
“Oh Mommy you are such a star! Thank you. That did not hurt at all!” Vic gushed.
I do not believe her. I had felt her little body tense up as the needle went in. It hurt!
My entire body shook. The bile rose in my throat and I slowly let out my breath.
We have all come such a far way. Until last night I could not watch anyone stick a needle into my child. Now I have stuck a needle into my child’s flesh. I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.
The good news is that I was actually able to work the whole week. It was the annual African Air and Defense Show and we exhibited. Normally I would be absolutely frantic about Vic. But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.
Vic is far more active. She is truly so much better. The partial obstruction appears to have cleared! She spends time chatting to the boys. On Saturday she took Jared shopping for a new shirt and shoes!
On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡” Vic handed him his baptism candle that she received 15.5 years ago at his christening. He lit his candle as he took responsibility for his own walk with God. Vic and I laid hands on him and prayed for him. It was so touching.
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
Vic has reached another milestone in her life.
“The right to die”
After Vic’s Dad spent a week in ICU, ventilated and bleeding from his eyes, she signed the documents to allow the doctors to turn off the ventilator. Tienie was an organ donor. We were allowed to say our goodbyes and then the transplant team swept in. Sometime later the machines were switched off and Tienie was officially declared dead…..
Tienie lived life to the full. He believed sleep was a waste of time. He never sat still for a single minute. He loved life! He had a brilliant mind. He was articulate and well educated. He was a very proud man. If Tienie had lived he would have been condemned to “Locked-In Syndrome“. I remember standing next to his hospital bed thinking “What if that brilliant mind is trapped in a body that cannot communicate?”
Vic received a couple of letters from grateful recipients telling her what a difference Tienie’s organ’s had made to their lives.
On numerous occasions Vic has been on life support. We have been told to say our goodbyes. We said our goodbyes. Vic started breathing on her own…
Across the world people have prayed for Vicky’s life to be spared/saved. I have seen medical teams fight for her life refusing to let her slip into the arms of death. The bottom line is that doctors have played God in her life for many, many years. They decided when she was NOT allowed to die…
Doctors proclaim they do not want to play God…..They will fight day and night, for weeks on end, to save a very sick person’s life regardless of the individual’s wishes and quality of live. Doctors and Governments assume the right to decide when a sick person may die. God surely did not intend people to live a miserable life… Just yesterday Britain’s High Court rejected an attempt by a man who has locked-in syndrome to overturn the country’s euthanasia law by refusing to legally allow doctors to end his life.
Tony Nicklinson had a stroke in 2005 that left him unable to speak or move below his neck. He requires constant care and communicates mostly by blinking, although his mind has remained unaffected and his condition is not terminal. Locked-in syndrome is a rare neurological disorder where patients are completely paralyzed, and only able to blink. Patients are conscious and don’t have any intellectual problems, but they are unable to speak or move……
“The suicide, the mystic, the woman who seeks an abortion, the cancer patient who smokes a joint (the cancer patient’s long-suffering lover who smokes a joint)—all are roundly condemned for their escape from “responsibility” but truly feared for their escape from jurisdiction. It is a fear with a long and traceable history. The Roman emperor Tarquin crucified the bodies of citizens who committed suicide in order to escape his tyranny. When Margaret Sanger began her campaign for birth control, she was accused of permitting women to escape their God-ordained sorrow in bearing children.” http://harpers.org/archive/2005/02/0080411
We live in a world filled with hypocrites and people with double standards. I have said it before – people take the moral high ground and assume the role of God. Did God intend for man or woman to “live” connected to machines to keep them breathing? People accept the death of a six-year-old child by aerial bombardment or economic sanctions and defend the life of a six-week-old fetus. I personally live in a country where children still die from inadequate medical care and hunger.
It is not physician-assisted suicide that poses the greatest threat to the poor and the disabled but physician-assisted eternal life: Rich people will pay a lot of money for illegally harvested organs… The poor, from a different continent, will sell their organs to buy seed for their farms….
The World Trade Centre – did the jumpers commit suicide or were they murdered? According to most religions the jumpers will go to hell because they took a life – albeit their own…. How stupid!!!!
It is my personal opinion that Tony Nicklinson has been sentenced to a Life of Disability rather than being allowed “Death with Dignity.” He cannot wipe his own nose, wipe a tear from his eyes, scratch his ear….. He cannot control his bodily functions. He cannot even take a lethal dose of medication.
I pray that God will have mercy on me and allow me the time, mobility and clarity of mind to end my life rather than live the indignity and miserable life that Tony Nicklinson has been condemned too.
God have mercy!
Cannabis and Pain Control 14.8.2012
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
Mommy I broke my Back!!
Mommy I broke my Back!!
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
- 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?
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?
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
- Acetaminophen, such as Tylenol.
- Nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin,ibuprofen (Advil, for example), ketoprofen, and naproxen (Aleve, for example). Always take NSAIDs exactly as prescribed or according to the label. Do not take a non-prescription NSAID for longer than 10 days without talking to your doctor.
- Tricyclic antidepressants, such asamitriptyline.
- Serotonin and norepinephrine reuptake inhibitors (SNRIs), such as duloxetine (Cymbalta).
- Corticosteroids, such as prednisone. Sometimes, steroids are injected around the base of the spine to relieve low back pain (epidural steroid injections).
- Oral medicines that act like a local anesthetic, such asmexiletine.
- Anticonvulsants, such as gabapentin (Neurontin) andpregabalin (Lyrica).
- Pain relievers that are applied directly to the skin (topical analgesics), such as EMLA cream or a lidocaine patch (Lidoderm).
- Capsaicin, a naturally occurring substance that is found in chili peppers and is used to make certain topical analgesic creams.
- Cooling spray. This involves using a cooling spray (such as Biofreeze) directly on the skin. This may be repeated several times.
- Creams or gels containing medicines or combinations of medicines. The cream or gel is rubbed directly on the painful area. Some of these creams or gels can be made at the pharmacy according to your doctor’s directions.
- Opiate pain relievers, such as hydrocodone (such as Vicodin).
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!
5 Stages of Dying 2.8.2012
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.
Vic's Final Journey 
