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.
A year ago I posted this. Yesterday we had visitors. We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta. I sat looking at all the happy faces and remembered Vic clinging to Danie. I remember the fear in her eyes. Her desperation. Her final Sunday.
Vic was desperately trying to finish the cards she had bought the boys. She wanted to write the perfect words. Words that would reach out to her boys from the grave. I remember my fear and frustration. Frustration that the cards had not been written and fear that it would not get done. So much pressure in death…
Tuesday brought an avalanche of visitors. It was a very, very emotional day. Vic was confused and seeing visions of angels and dead loved ones.
Vic’s friend Angela has been absolutely amazing. She has sat through many hours of Vic’s tears and fears. She has consoled and supported – at great personal expense. I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her. She has hugged and messaged. She has been a pillar of strength.
Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers. Vic’s room looked and smelled like a garden! It looked absolutely beautiful and Vic was thrilled.
Vic has refused to let go. She is holding onto life with every fibre of her being. She does not want visitors to leave and will try to get out of bed when they are here.
She cries and keeps asking “How do I say my final goodbyes?”
Esther visits every day. She picks up the boys after school. She is Vic’s guide. “Go towards the light. The light is good!” she keeps telling Vic. Esther is a ray of sunshine and like the Rock of Gibraltar. She is Vic’s sister in love.
It is heart wrenching!
Vic clings to her dad and the boys. She puts out her arms and says “Daddy don’t leave me…” When she sees her boys she cries “Please give me a hug…” and then “I love you more than life and then some more…”
It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks. The patients have controlled pain and symptoms. Many caregivers are also looking for a dumping ground.
Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..
It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.
It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.
Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?
Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?
They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?
I read the post of an amazing woman who is suffering from congenital heart failure. She is in so much pain. I cried when I read her post. http://thedrsays.org/2012/11/08/ She replied to a question whether better pain control was possible….. “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”
I thank God that we are able to make a difference!
“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell
There are times in the life of a terminally ill person that death is no longer the enemy but rather a friend. Vic too surpassed all anniversaries and eventually I though she was invincible. But with invincibility comes pain, indignity, despair, depression… Thinking of you Mike in your brave journey.
A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.
Vic basking in the winter sun!
Sunday was an amazing day. Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.
Lorraine moved a chair into the sun for Vic. Vic sat basking in the winter sun sipping lots of coffee. In true form, Vic on her occasional good day, pulled the dam from under the duck. She was like a little jack-in-the-box. Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.
Vic sobbed from pain and my poor sister wasreduced to tears. She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!
Vic dozed on and off but kept waking from the pain. Maybe she took some extra painmeds because she seemed disoriented? Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…
Sunday afternoon the boys came home after spending the weekend with their Dad. Danie took Jared and Kirsten, (Jared’s girlfriend), to church. Vic kept trying to get out of bed. She is so darn stubborn. She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication. She kept getting out of bed. She would just not stay in bed.
I got so angry with her that I said I would fetch Jared from church. I needed to remove myself from the situation. Lorraine said “let me stay with Vic” and I said “No! Come with me”
Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…
At home she was lying in a crumpled little heap full of blood and screaming from pain. Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her. Vic went hysterical when I said I was phoning an ambulance.
“No Mommy, No!!! No ambulance! No ambulance”
We agreed that we would try to get her to hospital in my car. Jared half carried her out to the car and then the drama began. We could not swing her legs into the car! She was screaming with agony.
I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed. Eventually we repositioned Vic in the car. Jared sat behind her and cradled her in his arms. The ambulance escorted us to the hospital.
At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept. Vic screamed and screamed with pain! From 21.30 to 03:00 they x-rayed and scanned Vic. Most of the x-rays were done in the Trauma section. Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.
Vic in ER
If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!! Mommy!! Mommy help me!!!”
The diagnosis – “impacted fracture of proximal metaphysis of right humerus”. Vic was admitted to the orthopedic ward and scheduled for surgery today. The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm, too great, for him to “pin” the arm. So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own. She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do? Pain control, bed rest… Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports??? I only picked it up when I read the reports this afternoon!!!! I had to report it to the nursing staff!
I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?
I am so angry with myself. This happened because I got angry with Vic. I should have stayed with her and not reneged my Caregiving duty. I should have had been there to bulldoze my stubborn child into remaining in bed. My temper has caused Vic endless, unbearable pain. Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this! I will never forgive myself for this!
Well with the bad comes the good as well. We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day. Actually, the whole week! Problem solved. She is too sore to move… And will more than likely still be in hospital on Wednesday.
The nurses just changed her bed linen and she screamed with pain! How are we going to take care of Vic at home? My sister offered to come through but two qualified nursing staff could not move her without causing major distress. She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc
For the first time, ever, I am at a loss. I am so tired. I don’t know what to do anymore.
On the 17th of May 2012 I posted this. It was my first blog post ever. I was however something I had written ion the 27th of November 2003
How could I ever think that I want my child back? It is over. Vic is at peace and pain free. The pain has transferred to me…
My dearest child
My heart breaks when I look at you. Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain. The morphine dulls your dark eyes…
It is so difficult seeing you in so much pain…the times when you are bent double from pain. My heart breaks when I see how you are still trying to care for your family. If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs… I see the helplessness in Colin’s eyes when he looks at you. It is soul destroying!!!
It is at times like this that I cry out “How much longer God? When will her suffering end?” But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”
With the obstruction I fear that you will not make it. The morphine aggravates the situation! When will you develop another fistula? It is only a matter of time. How time do we have left?
I wish I could just hold you and protect you against the pain and death. If it was a bullet I would take it for you but how do I protect you against your own body? How can your body betray you like this?
In my mind’s eye I see you lying on a bed, strapped in,poison flowing through your veins… You are dying
In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.
Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.
We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.
Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….
We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…
My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…
One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”
“Of course I love my family! Why are you asking such a question?” I replied
“Because you are never home….”
I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.
So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!
In 2009 my Dad came to live with us. He suffered from Alzheimer’s.
Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.
I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.
I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.
It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.
My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.
I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.
Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.
My life centred round my sick child and family.
Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.
How amazing is this?
If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….