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.
Over the past 10 years I have seen my child suffer so much indignity and indescribable pain. I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks. I have wept before God and prayed for Vic to die. I begged God to take away her suffering.
I advocated the right to die with dignity.
Vic has been in the care of Hospice for the past 3 months. In this time Vic has been given a new lease on life. Hospice cannot change the prognosis but they have given Vic quality of Life. For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening. She completed her photo albums.
Vic is in renal and hepatic failure. Her tissue is horrendous. Her pain is under control! As and when symptoms surface, Vic’s medication is adjusted. She is treated with compassion and respect. Her wish is the teams command….
As the situation is now I am so grateful that my child is alive. I treasure every breath that she takes. We chat, laugh and cry. We dream of going to Italy in 2013.
So given the situation now what would I advocate – The right to die with dignity or the right to live?
I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end. If it remains as great as it is now of course I want her to live. But it is key that Vic is allowed to live with Dignity!
As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person. It is not for family or physicians to play God. The patient has to be the only decision maker.
I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.
We all have the right to Live with Dignity. There is a huge difference between breathing and living…
Sr Siza examined Vic today. She phoned Dr Sue who will be in tomorrow morning. She also brought a script with for Dalacin antibiotics. The cellulitis has spread to all three the subcutaneous sites.
Siza expressed her concern at Vic’s decline…
Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”
That statement really shook me. Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions… I have never really considered living without my child.
Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters. We are hoping that they will “host” our Hospice at their premises.
The CEO knows Vicky and the boys. Jared was confirmed in his church earlier this year.
I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain. Vernon (CEO) quietly listened to us and explained how difficult fundraising is. Christians are tight with their money…
Vernon then shared the following with us.
“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky. I knew she was in hospital as she was on the prayer list. I drove to the Donald Gordon (Hospital) and was directed to the ICU. The nurses welcomed me although it was way past visiting time.”
“Pray for her. We are switching the machines off tomorrow morning…” they said.
“I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys. I stood next to a dead person that night. Two days later I heard that Vicky did not die when the machines were turned off…”
I just stared at him. I was speechless… I had no idea! It was the first time I had ever heard the story!
In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula. Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer. On the Tuesday Vic went into respiratory failure and was ventilated. I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator. By the Thursday her kidneys and liver had started shutting down.
My BFF, Gillian drove 350 kilometres to be with me. On the Thursday there was absolutely no sign that Vic could or would recover. Vic had a DNR and a living will that she had provided the hospital.
That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired. You must let her go…”
Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys. They were already in bed when we arrived home. We sat with them
“Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own. Mommy’s kidneys and liver is also not working that well anymore. The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much. They think it will be better for Mommy to be taken off the machines…”
Jared quietly started to cry. Jon-Daniel was stoic. Jared was 10 years old and Jon-Daniel 8 years old.
“What will happen with us Oumie” Jon-Daniel asked.
“Sweetie, Oumie and Oupie will ALWAYS be here for you. This is your home.”
Jared cried himself to sleep. Jon-Daniel just clung to me. The three of us shared a bed that night.
The next morning early Gill, Lee and I set off to hospital. When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”
The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.
Family and friends drifted in and out of the waiting room the whole day. My minister came and prayed for my child. Everyone said goodbye.
That afternoon Danie and I were allowed to see Vic. The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face. It was a grotesque sight.
Danie held her little hand and his tears dripped onto her arm.
“Oh sweetie” he said, the sorrow and pain raw in his voice.
Vic opened her eyes and said “Daddy”….
Three days later Vic was discharged from ICU….. It was not her time.
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
Hospice has just fitted a subcutaneous driver – again. Vic’s pain has spiralled out of control over the past couple of days.
Vic was in absolute excruciating pain during the night. She battled to breath.
“Help me Mommy! I can’t stand the pain anymore…”
I lay next to her and put constant pressure on the area that hurt most. It was just below her ribcage – liver. “Oh Mommy, it is so sore. Can you feel how sore it is?
As a little girl Vic used to believe that I could “feel” her pain…
“Feel how sore my toe is Mommy…”
As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease. It cannot be so I look for a new spot on her bum to stick in a needle.
Vic seems calm now and the pain under control. She is sleeping peacefully. She has not vomited since this morning and managed to have a sandwich for lunch.
Please God let the subcutaneous driver work. Please let the tissue hold up! Please God!
Lucinda commented today “Again, I can’t add anything on to what others have said; I don’t know how you have the courage to make these posts.”
I sometimes wonder why do I blog? My whole being screams “so I won’t forget”. I want to remember every day, every spoken word, every unspoken word, every feverish touch. My friends have lifetimes ahead with their children…I don’t. They have many more Christmases and birthdays to look forward to. The chances are that their children will bury them… As a family we live one day at a time. We are grateful for every morning when we wake up!
We have friends who lost their 17-year-old son almost 17 years ago. I have not seen her in a couple of years. When I last saw her she said that it does not become easier with time. One just learns to cope with the pain and the loss. My friend had to walk away from her son. He was declared brain-dead after a drunk driver drove into the car transporting him to a rugby match….
She said “I touched his big feet. I lay my head on his chest and I could hear his heart beat …. I walked away and his body was warm…” Steven’s heart beats on in another person’s chest. They generously, in all their pain, donated his organs.
Joan never had the opportunity to say “goodbye forever” to Steven. She said “Goodbye, have a good game. Love you!” Joan treasures the last hug, kiss, laugh… She holds onto it.
I want to hold on to every memory I possibly can. As hard as it is I write so I will remember everything.
A lot of what I write I don’t post. It is too raw.
Thirteen years ago, we celebrated Tienie, Vic’s father’s, birthday at his memorial service. Since the 29th of October Vic has relived every second of her father’s final journey. It has been indelibly burnt into her memory, her being, and her life.
Thirteen years ago Vic stood up in front of hundreds of Tienie’s friends, family, colleagues, lovers, ex-lovers, ex-wives and delivered a beautiful and moving eulogy! She honored her father by talking about what he represented in everyone’s lives. How giving he was…
Tienie gave his family and friends love, laughter, friendship and joy, and we knew he would want to give someone else the opportunity to have a better life. Vic made the brave decision to honor her father’s unwritten wishes. She gave permission for Tienie’s organs to be harvested and donated.
As we said our goodbyes we were able to celebrate his generosity. He had given men and women a heart, lungs, kidneys, retina, bone, pancreas, and skin… For one or other reason his liver was not used. Up to today we joke and say that he used up his own liver…
Vic received letters from grateful families thanking her for the gift of life that they had received from her daddy.
I often wonder about the fortunate person who received Tienie’s heart. I wonder whether elements of a person’s character – or even their soul – are transplanted along with a heart. CLAIRE SYLVIA, a divorced mother of one, was 47 and dying from a disease called primary pulmonary hypertension when, in 1988, she had a pioneering heart-lung transplant in America. She was given the organs of an 18-year-old boy who had been killed in a motorcycle accident near his home in Maine.
The recipient of Tienie’s heart could take on a couple of beautiful characteristics; develop a love for beer, whiskey and women… He/she would also prefer vegetables to meat, be honest to the core of his/her soul…. He/she would not cry… Party hard and work even harder. He/she would have a wonderful, mischievous sense of humor be very tidy and lose their ability to dance…
Today I miss my first love. I miss the father of my child. I am grateful that he does not have to go through the hell of Vic’s disease. I thank God for the child he fathered. I am grateful that he and Danie got on well.
By writing this post I do not want to detract from the wonderful marriage that I have. I am so grateful for the second chance I had at love and happiness. I thank God for the wonderful husband He gave me, the Dad that Vic was given. I thank God for Danie. He is an amazing Dad to Vic. Tienie will always be her father but Danie is her Dad. Danie is the greatest gift I received from God and I love my life with him. I love Danie with every fiber of my body. I will ALWAYS love Danie.
But today I miss my first love, my friend, the father of my child.
Thirteen years ago Vic’s dad was involved in a bad car accident. He was airlifted to a hospital with an excellent trauma unit.
When Vic and I arrived at the hospital we were greeted by a trauma councillor. He explained that Tienie was being stabilized but that the situation was grave…. It was terrible seeing Tienie lie in the ICU ventilated, swollen, battered and bruised.
The news was not good. Tienie would be a quadriplegic if he survived….
Tienie was one of the most vibrant, energetic party animals I ever knew. We were childhood sweethearts. We started dating when I was 13.5 years old. I have photos of us dancing at his 16th birthday party. We got married very young. We got divorced very young. We remained friends and business partners until his death. Tienie was an accountant by profession and hated every second of it. He turned to property development and went from one cash flow crisis to the next. He was one of the most intelligent people I ever met but also one of the stupidest!
Tienie was a giver… He would give away the clothes off his back. He hated sleeping. He said it was a waste of time. Tienie never cried… he mourned Vic OI diagnosis in a different way. Some men love cars…Tienie loved women. He was a loyal friend. He was the world’s friend. Everybody loved Tienie.
The day after the accident I had some time alone with him. I spoke to him and told him that I had forgiven him for cheating on me and finally leaving me. Standing next to his bed I realized for the first time that I had also caused him a lot of pain!! I asked him to forgive me.
I also told him that I knew he was worried about his situation at that moment in time. All he had to do was pray to God and ask him for forgiveness. I held his hand and prayed for him.
A single bloody tear ran down his cheek. I knew he had heard me and that all was okay….
The machines went crazy and I was asked to leave. I knew Tienie was gone as I walked out of the ICU….
Six days later Vic signed the consent forms for the machines to be switched off. She also signed the consent for Tienie’s organs to be donated. That is what he would have wanted.
Tienie was buried on his birthday, the 10th of November 1999
Thirteen years later my child still mourns her father.
I know that when the time comes Tienie will be there to take Vic’s hand to lead her towards the light….
Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz. This post elicited some comments – mainly from Vic. Vic has started reading the odd post of my blog. In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post. I find that I have become guarded in what I am writing. I am thinking that I should blog about stuff that may allay Vic’s fears….
Yesterday Vic asked “Mommy, I know what we believe in but what if there is more pain after I died?”
“You read my blog?” I asked.
“Yes” Vic replied.
“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”
“I know that Mommy but what if I am still in pain… What if the pain does not stop?”
“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind. That is what the post is about…..”
Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop? What if your pain does not stop?”
Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.”
sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”
“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.” http://thedrsays.org/2011/03/
I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind.http://thedrsays.org/2011/03/25/the-one/
Vic so often tells me how worried she is about the family. She worries about how the boys, her dad and I will cope. Whether we will cope…. whether we will be able to get over her eventual passing…. Andrew and sbcallahan write about their fears… for their loved ones. It is a fear that all terminally ill people appear to have.
My Mom died a bad death! Two weeks after major surgery she died an agonizing death from septicemia We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain. God alone knows what went through her mind because she was ventilated. When my Mom finally died we were so relieved. We were relieved that her suffering was over. We were traumatized by the dying process not her death.
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you but we will also be at peace… We will think of you and smile…
Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.
“I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy. We have always been so close….” Vic lamented this past week.
I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….
Knowing that death is imminent is takings its emotional toll on all of us
Vic said tonight that she has never been more scared in her entire life. She is scared of being “isolated” from us. She fears that we will not cope. She is so scared of the pain. She is so scared of leaving the boys behind….
I blogged on Vic’s fears before. https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012 That blog was based on some research and actual observations. Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months. For the worse!
The good thing is that Vic is actually sharing her fears with me. Tonight we prayed over her fears. Vic, at last, is dealing with her fears.
Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad! Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it. Vic over the past couple of months has lashed out at the boys and I.
Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.
Vic feels guilty about being a burden on us. She also feels guilty that she will be leaving her children behind. Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident! I told her that I felt guilty for yelling at her when she was 4 years old. Until my dying day I will always remember the fear and confusion in her dark brown eyes….
Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…
We spoke and I told Vic that we simply have to let things go. We cannot change the past. We must fix what can be fixed and try to let go of the things that cannot be changed.
Vic is stressed that Jon-Daniel and she have drifted apart. He is angry with the situation. She wants to spend time with him to rebuild their relationship.
Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already. The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.
Vic has had many physical and emotional losses which have come before the loss of life itself. Yet she has gained some things too. She is seeking spiritual peace, a new relationship with her God.
Hospice has given Vic Azor for the anxiety. I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure. She is getting her life in order. Over the years we discussed death as a natural extension of life…. Now she is discussing her funeral with me. Psalm 23 ans 1 Cor 13 will be the readings… What I will dress her in… Her pallbearers…
I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly, whilst her son suffered carrying The Cross… She had to stand by and watch Him die the cruelest of cruel deaths…
Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time. Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”
On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”
“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”
“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”
We all laughed.
“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned
Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”
The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.
“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”
I was truly taken aback. “Yes, I think we are coping. ”
“So Tersia, why do you think the boys need to see me?”
I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.
“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.
“Yes, Jon-Daniel said so” Alan replied.
“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused
“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.
“What type of party will she organize?” Alan asked.
The boys and I laughed!
“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”
“What type of things?” Alan asked
“Drive and take us for a milkshake” Jared replied.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”
The boys asked to see Alan for another session…. Thank you God for another angel!
“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.”
“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.
Joyous day!
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
Tomorrow, on the 31st of August, we will once again celebrate Vic’s life! Every year, for the past 10 years, we expected it to be Vic’s last birthday. Today I know that Vic will live forever. She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!
Tonight I sat doing Vic’s medication for the next 24 hours and I popped an extraJurnista into tomorrow morning’s tablets. Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain….. My gift to Vic an extra tablet so she can a better day.
So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.
I would pray for adequate pain relief. I would pray for some quality of life time for Vic with her boys. I would pray for Vic to have financial independence. I would pray for Vic to have peace of mind. I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.
I do thank God that Vic is still alive. I thank God for Dr Jabber Hussain and Jurnista. I thank God for Vic’s incredible boys. I thank God for the brave decision that Vic made not to have further surgery. Above all, I thank God that Vic is home.
Tomorrow Vic will have a busy day. She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Esther, afternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us. I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.
What is a relatively quiet day for us is a marathon for anyone as ill as Vic. I know that she will try so hard to survive the birthday and the party day. Somehow I don’t think she will manage it all. I just hope that she has a good day so she can spend some constructive time with her boys. They will need to remember this as a good birthday in years to come…..
On Saturday we will celebrate all the August/September birthdays. Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September…. I hope Vic will be able to handle two busy days in a row. Maybe the birthday high will carry her through it!
We have a family tradition of doing “birthday eulogies”. Everyone present gets to say something nice about the birthday person. Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is. This year I will I will merely thank her for being here!
C.S. Lewis says “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
For 37 years I have bargained with God. He alone knows of all my anguish, tears, pleading, my fears and pain. I am strong. I don’t cry easily or often. I have cried before God. Pleaded with Him for mercy.
He chose to ignore my pleas for mercy.
I have not been to Church in more than two years. I attended Marlene and then my Dad’s funeral. I went to one service at Reuben church. I have been angry with God….. Disappointed that the God of Mercy I learnt about from my parents’ knees does not exist. I have only experienced a God who has sentenced my child, and now my grandson, to a life of pain and suffering.
Today I attended the annual church fete. The arms that I have missed for more than 2 years enveloped me. Kisses rained on my cheeks. “I have missed you”, “We still pray for you and Vicky everyday of our lives”….. “It is so good to see you!”
The minister, Martin, hugged me and said “I think of you every day. We are always here for you….
I cried. I miss my church friends but I cannot go back for the wrong reasons.
I wondered tonight why the friendships did not last outside the confines of the church? I realized that our pain is too much for people to cope with. They hurt for me…..
But in the silence in our everyday lives is deafening…God’s megaphone has obviously not roused the deaf in our world…….
Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!
On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August (http://wp.me/p2rPrS-bA ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!
We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!
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.
Vic's Final Journey 