Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
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.
Women’s Day is celebrated internationally in March. In South Africa we celebrate Woman’s Day on the 9Th of August. This day commemorates the 9 August 1956 when 20000 women of all races and ages participated in a national march petitioning the then National Party Government against pass laws … (“Pass laws” were legislation that required African persons to carry a document on them to ‘prove’ that they were allowed to enter a ‘white area’ during the Apartheid regime).
The march was a resounding success and South Africa recognised the bravery of these women who risked arrest, detention and banning by declaring 9 August National Women’s Day
During the March the women sang Nkosi Sikelel’ iAfrika, which became the joint national anthem of South Africa along with Die Stem van Suid Africa, in 1994. An interesting fact is that ‘Nkosi Sikelel’ iAfrika was composed as a hymn in 1897 a Missionary teacher in Johannesburg. Five countries, Zambia, Tanzania, Namibia, Zimbabwe and South Africa adopted ‘Nkosi Sikelel’ iAfrika as their national anthem. Zimbabwe and Namibia have since adopted new national anthems.
‘Nkosi Sikelel’ iAfrika
Lord, bless Africa May her spirit rise high up Hear thou our prayers Lord bless us.Lord, bless Africa Banish wars and strife Lord, bless our nation Of South Africa.
I was surfing “Strong Women” and found some amazing quotes which I would like to share with you tonight. Interesting,
The next generation of Power Houses!
when I was surfing “Women + Abuse” many, many sites with “50 Shades of Grey” came up….. I am going to have to read the book to find out why “Shades of Grey” is tagged with “women + abuse”…..
“In politics, if you want anything said, ask a man. If you want anything done, ask a woman.” Margaret Thatcher
“Above all, be the heroine of your life, not the victim.” ― Nora Ephron
“A girl should be two things: classy and fabulous.” ― Coco Chanel
“After all, Ginger Rogers did everything that Fred Astaire did. She just did it backwards and in high heels.” ― Ann Richards
“Yes, we praise women over 40 for a multitude of reasons. Unfortunately, it’s not reciprocal. For every stunning, smart, well-coiffed, hot woman over 40, there is a bald, paunchy relic in yellow pants making a fool of himself with some 22-year old waitress. Ladies, I apologize. For all those men who say, “Why buy the cow when you can get the milk for free?”, here’s an update for you. Nowadays 80%of women are against marriage. Why? Because women realize it’s not worth buying an entire pig just to get a little sausage!” ― Andy Rooney
“Perhaps if we saw what was ahead of us, and glimpsed the follies, and misfortunes that would befall us later on, we would all stay in our mother’s wombs, and then there would be nobody in the world but a great number of very fat, very irritated women.” ― Lemony Snicket
“The greater your capacity to love, the greater your capacity to feel the pain.” ~ Jennifer Aniston
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” ~ Mother Teresa
“Pick the day. Enjoy it – to the hilt. The day as it comes. People as they come… The past, I think, has helped me appreciate the present – and I don’t want to spoil any of it by fretting about the future.” ~ Audrey Hepburn
“When women are depressed, they eat or go shopping. Men invade another country. It’s a whole different way of thinking.” ~ Elayne Boosler
So, tonight I salute all the strong (and witty) women of the world. I salute the mothers of nations, leaders, sisters and friends. I salute my daughters. I salute Vic for the life she has lived. In the words of― D.H. Lawrence, Lady Chatterley’s Lover “A woman has to live her life, or live to repent not having lived it.” Vic has not wasted a single breath!
But, in conclusion, the best quote of the day: “I, with a deeper instinct, choose a man who compels my strength, who makes enormous demands on me, who does not doubt my courage or my toughness, who does not believe me naive or innocent, who has the courage to treat me like a woman.” ~ Anais Nin, French born American author of short stories.
We all deserve husbands/partners that respect our strength! I salute my beautiful husband who is truly “the wind beneath my wings”. Dankie my skat! Jy is die beste!!
Danie and I with a happy and carefree Vic at Mabalingwe!
Vic and the boys before she had her blotched back operation
I often read about a child that had been ill for a long time and the parent being in denial. Death is never discussed. I know it may take months or even years for Vic to die. Maybe, with a bit of luck, I will die before she does. But when either one of us dies there will be nothing unspoken. Vic and I talk a lot. We talk about many things. If ever I think of something that I am not certain of, I ask her immediately.
I have fully accepted that Vicky is always walking the tightrope even when she is doing great. It is the nature of the beast and the beast can take you by surprise.
We have spoken about heaven and what a peaceful, healthy place it will be. We often speak about meeting again in heaven and Vic always says she is not scared of dying. Vicky feels terrible about leaving us behind. She worries about leaving us all behind. She worries about how sad we will be. I wish I knew what to say to truly put her mind at peace and to let her “let go”…
It was very difficult to first raise the question of death. It started approximately 8 years ago with a tentative “Sweetie, is all your paperwork in order before you have this surgery?” and progressed to discussing and shopping for 18th birthday gifts, Confirmation bibles and 21st Birthday Keys. It was strangely “pleasant” going shopping with Vic. I knew that her mind was at ease having done the shopping. Maybe she will be around for these milestone events. Maybe not….. But Vic is prepared. She is far more prepared than I am. She has written letters to be read after her death. She has “special events” cards that I will give the boys when the occasion or need arises.
To arrive at the point, where we are, has been hell! No matter what age your child is, when you first find out that your child is terminally ill, your initial instinct is to shelter the child. (Regardless of the child’s age – the child will always remain the child!!) The parent’s first instinct is to leave no stone unturned. You watch the child like a hawk, looking for small signs of improvement or deterioration, looking for symptoms, hoping against all hope that the doctor made a mistake!
I analyze every ache and pain, hoping that the stomach cramps are merely side effects of the medication. I know when Vic is heading for a UTI; I know how her body reacts to different medications. Unfortunately there is no “Dummy’s Guide for the Parents of a Terminally ill Child”.
Professional counselling is available at a terrible cost. By the time your child is diagnosed or rather sentenced to terminal illness, hundreds and hundreds of thousands of rands has been spent on medical bills. Within two months of the new medical year the medical aid is exhausted….. The medication and treatment cannot stop regardless of the claimable amount left on the medical aid limits… I have said it before – morphine or counselling???? No contest! Morphine wins hands down. Now in a civilized world Hospice should enter the picture at this stage….. Unfortunately we live in South Africa and Vic does not have AIDS or cancer. I pray that she will find the peace that I know she does not have.
No-one in the world can live in so much pain for so long!
Today we buried a very dear friend. As his coffin was lowered into the grave, gentle snowflakes fell. A light layer of pristine white forming on the dark, cold soil…..
One does not leave a funeral in the same way that you have come. One cannot help but have death on one’s mind. One cannot help but be aware that such is the end of all life. One may look at oneself and have a new awareness that one’s body will not last forever. These thoughts are ones that humans must face and find a way to deal with. Some believe that the death is only the beginning of the next great mystery and the soul is eternal. Others take a practical view that death is all there is. Everyone leaves a funeral with thoughts of life and its fragility on their mind.
Today we bid farewell to a dear friend, a brother in every way but blood. We know that friends like Dries come so infrequently that we want to cling to them and not let them leave. We want to beg them to stay, but love’s power gives us the strength and the courage to let go. To let them leave when it is time to say goodbye and give them the wings they deserve. To let them fly into the boundless sky…… where the gentle snowflakes reminded us of them as it brushes against us
My regrets are many. If only I had gone to the hospital to visit when I heard about Dries’ heart surgery…… If only I had gone to visit with Danie when he popped around after Dries was discharged from hospital…….. If only I had truly made Dries realize the value our friendship. Regrets will not bring him back. I have become so self-centred in my journey with Vic that I have closed myself off from the world. I have excluded friends and acquaintances and almost jealously guarded my pain.
I bid you adieu, my dear friend. Your kindness, your generosity and gentle spirit will live on through everyone whose path you crossed. It is with love and the faith that we shared that I will move forward from here. I will never forget you.
Rest in peace my dearest friend!
Though I do mourn for you my friend
And though I may cry,
And though you are leaving me
I do not say goodbye.
For goodbyes mean forever
Yet here you still remain.
Because, forever you will live
Here in my memories,
And forever in my heart
You will remain. (Thomas Barnes)
(That was for you dear friend, I love you, and will miss you)
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
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:
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.
Corticosteroids, such as prednisone. Sometimes, steroids are injected around the base of the spine to relieve low back pain (epidural steroid injections).
Pain relievers that are applied directly to the skin (topical analgesics), such as EMLA cream or a lidocaine patch (Lidoderm).
Capsaicin, a naturally occurring substance that is found in chili peppers and is used to make certain topical analgesic creams.
Cooling spray. This involves using a cooling spray (such as Biofreeze) directly on the skin. This may be repeated several times.
Creams or gels containing medicines or combinations of medicines. The cream or gel is rubbed directly on the painful area. Some of these creams or gels can be made at the pharmacy according to your doctor’s directions.
Other therapies that may be used to treat chronic pain include:
Nerve block injections. An anesthetic is injected into the affected nerve to relieve pain. The anesthetic may relieve pain for several days, but the pain often returns. Although nerve blocks do not normally cure chronic pain, they may allow you to begin physical therapy and improve your range of motion.
Epidural steroid injections (injecting steroids around the spine). Although these injections have been used for many years and may provide relief for low back or neck pain caused by disc disease or pinched nerves, they may not work for everyone.
Vic’s pain medication as at 4.8.2012 (Transcribed from medication received from Pain Clinic
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.
Vic's Final Journey 