Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.

Vic’s fears 2.7.2012


Vic’s fears 2.7.2012.

Vic’s fears 2.7.2012


The boys visiting Vic in hospital 28.8.2012

Mommy, I’m not afraid of dying.  It is the pain that scares me…”

The four most common fears of the terminally ill are:

  1. That death will be painful.
  2. Loss of dignity and control.
  3. That loved ones will be damaged and unable to manage
  4. If children are involved that they will not be looked after properly.

Death will be painful

Vic the same physical, emotional, and spiritual needs as everyone else.  Her biggest fear is however the pain that will be involved in her inevitable death.  As distressing as the physical pain, Vic battles constipation, diarrhoea, nausea, vomiting, weakness, loss of dignity and loss of appetite.

The average physician and pharmacist’s concern is addiction!  So what?  Addiction at this stage of the game is the least of my problems.   I do however believe that Vic has become morphine resistant.  In hospital last week Pethidine and Perfalgan worked well.   This is one of the reasons why it would be great to have Hospice involved in her pain management.

The Pain Clinic is great but they see Vic every couple of months.  In the past 10 months I have collected her monthly morphine script on 7 occasions.  Thank God they have enough empathy for Vic and enough realisation of her health situation to give me the script. The problem is how much more than 400mg of MST (morphine) twice a day can they prescribe??  Imagine if I had to drag her to the pain Clinic every 28 days…

I honestly believe that family involvement is imperative with someone as ill as Vic as she or any other terminally ill person simply cannot manage these situations alone.  Family members closely monitor the effectiveness of pain management.  I take Vic’s vitals a minimum of 3 times a day.  Her blood pressure and heart rate are clear indicators of where her pain levels are at.   I know her body better than any other person, nurse or doctor… I cannot imagine a terminally ill person having to fight for pain medication.

Loss of dignity and control.

Vic desperately wants to participate in ordinary daily activities such as being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favourite TV show; to hold her children.

Imagine just for one minute your mother having to help you bath, apply deodorant, dress and undress…  Vic has to endure this indignity every day of her life.

Nights are especially poignant.  Sleep difficulties abound, not only because of physical pain but also because of fear of sleep, fear of not awakening out of that sleep.  One night spent with a dying person could teach all of us, in some measure, the depth of human loneliness, anguish and fear which our own dear ones experience in the brief span of life left to them.  Vic sleeps badly at night.  She wakes every two hours from pain and then she is too scared to go back to sleep.  She refuses to take a sleeping tablet.  At night Vic is at her most vulnerable…  I am so scared that she will fall at night whilst we are sleeping.

What if Vic is nauseous and chokes in her own vomit sleeping?

That loved ones will be damaged and unable to manage

Vic worries about the family’s ability to cope with her illness and eventual death.  When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…

Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”

No amount of reassurance will comfort her…Vic in time will have to let go.  She knows how deeply we love her and what void her passing will leave in all our lives.  If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?

Vic is quite hard on the boys (for their own good I must add).  She always says “I am your Mother not your excuse”

If children are involved that they will not be looked after properly.

Vic believes that no-one can ever love the boys the way she does.  That is true.  I am not a particularly “oochy goochy” person.  At times I believe I failed Vic as she has an emotional neediness that scares me.  I attended 12 different schools in my life and maybe this is why I battle to form emotional attachments.  I don’t have many friends.  My family is everything to me.

Vic however often says that she is happy that she moved back home as she has seen how settled the boys are.  They are truly happy living with us.

Vic knows that I will care for the boys for the rest of my life.  We will guide them and provide for them in every which way.  We love the boys with all our hearts.

The question that remains is whether she trusts us enough to let go of this pain filled life where she has lost all control and dignity?  I pray that she will…

A Mother’s Love for her Sons


I have been researching the effect of a mother’s illness on her children.  The boys are two beautiful, well-adjusted, honest and compassionate young men.  Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life.  At the tender age of thirteen Jared was cooking for the family…  This must certainly have an effect on how the boys perceive relationships with people.

Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their parents. They in effect become parents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.

“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.”  The boys, especially Jared, falls into this category 100%.  When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode,  At the time I thought it to be extremely unhealthy that he already has this caregiving character trait.  He used to always make the tea and offer to do so much around the house and for his Mom.

I have put a stop to this.  I pray it is not too late for the boys to adjust to a “normal” household…

It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother.   Vic has raised her sons to be respectful.

“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”

Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday.  When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again.  This is what Vic does.

Before Jared was wheeled into theatre he whispered into his mom’s ear.  She took his hand and said “I promise”.

Vic, drip in hand, walking with Jared to theater!

The surgeon said the operation would last two hours.  Vic dutifully went back to bed and rested.  One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son.  I begged her to at least sit on the chair but she refused.  “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”

It took a superhuman effort but Vic’s love for her son drove her to keep her word.  It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own.  As Vic did.  As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.

The vicious cycle of anger truly rose to the occasions on Wednesday.  I got angry with Vic because she was not putting her health first!  I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother.  I want to wrap her in cotton so she would be spared that extra day…

Yesterday Vic said she doubted whether she would see the end of the year.  She is however adamant to be at Jared’s confirmation…one more goal…

Go Girl!!!

Well, Vic is home.  I am so grateful.  She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!

A vicious cycle of nerves


I thought Sunday to Wednesday was a nightmare but boy oh boy come Wednesday morning and my child became a terror!  The “my son really needs me” adrenaline kicked in and Vic was uncontrollable!

She was out of bed, marching into Jared’s ward as if she was the healthiest person in the world!  I was at a total loss.  My dearest friend Gillian wrote me a message: “What a wonderful mom.  Her child comes before her illness. WillVic Accompanying Jared to theater. not let go until her kids are okay. You can be very proud of your daughter”… My reply was: “Yeah – too cross with her to give her any credit at this stage”

Vic cannot pace herself.  Like on Sunday, she will be like a jack-in-the-box and when the moment is over, crash!  In this super human effort to be there for Jared she causes so much stress to everyone around her.  Jared stresses because she fusses around him, I stress because she is overdoing things again and I know there is a severe penalty to be paid for that, Jon-Daniel stresses for both them!  Danie stresses for me… I get irritated with Danie for trying to protect me…. It is a vicious cycle of nerves!

Jared’s operation went very well.  The poor baby was in so much pain but stoically brave!  Not a whimper!!  I am so proud of this beautiful boy.  I was a little concerned for his emotional well being after Sunday.  He cried with fear and frustration for his mother.

Vic was up and down the passages last night checking on her son!  This morning Jared said “Oumie I am so tired.  Mom kept coming in and touching me…”  Vic means so well!  She wants to be there for her children but often does not understand that she is the sick one.  Her actions stress us out.  On the other hand, I must admit, that I was more at ease knowing that Vic was in the same hospital as Jared and able to check on him…

It is such a heart wrenching situation.  Vic wants to be a mother and I want her to be a child!!  When she is okay she can be whatever she wants’ to be.  When she is ill I want her to become my baby again…  Vic is an amazing mother.  She loves her boys with every fiber of her body.  She has fought to stay alive for the boys.  Who am I or anyone to deprive her of this wonderful privilege?  At the end of the day it is her reward for surviving the odds…

On Monday the physician cancelled the bloods he had ordered and agreed that palliative care was the only route to go… I don’t think he thought she would leave the hospital alive… On Wednesday Vic was looking out for her son…What a brave woman my child is.

Vic was discharged from hospital this morning.  It is Thursday.

Vicky is super-human!

Vic embraces life 23.6.2012


Today is a glorious, wonderful day!!  Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!

I say “seems” because she is ill.  By her own admission today, she is ill but she has decided to “live a bit”.  And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……

This child of mine is so stubborn!!  She truly does not know the meaning of giving up.  The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die!    In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story.  This is one stubborn lady!

A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…

What makes her strong?

Her Heritage

 Image

Vic, My Dad, My Mom, Jared and I

Vic comes from a long line of stubborn Vikings.  Vic’s maternal grandmother was an amazing person.  She too was ill most of her life.  From her sickbed she “controlled” our family – as Vic now does.  My Mom certainly kept the family together.  Her immediate family was everything to her!  We only truly realized and came to appreciate her strength after her passing.  

My Dad was a wonderful caregiver and provider.  A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul.  He was a true gentleman who never let on that he did not know who you were.  Once, when he was hospitalized, I went to fetch him on his discharge.  When he saw me he exclaimed “My goodness, how wonderful to see you!  Imagine bumping into you here of all places…”  Dad lived with us…

This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up. 

Tienie, Vic’s biological dad, was an amazing person.  He lived life to the fullest – every single second of it!!  He did not ever want to grow old.  He wanted to die young.  He died young… He died living!  He hated sleeping.  Considered it a waste of time.  He was generous even in death.  He was an organ donor.

Image

 Vic and her father on her first day of school!

Tienie and I separated when Vic was very young.  He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic.  Vic’s paternal grandfather died from OI at the age of 35.  All the other paternal grandchildren are unaffected.  The only affected family member is Vic and now I believe Jared.   The curse of Osteogenesis lives on in my beautiful, innocent grandson!

Vic comes from a long line of people who lived.  It must be so hard for Vic to be trapped in a body that barely allows her to breath.  Imagine a life of pain with absolutely no prospect of recovery…

Vic is the greatest warrior of all!!   Living in the shadow of death has truly made Vic embrace life whilst she is still alive.  She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…

Vic embraces life 23.6.2012


Today is a glorious, wonderful day!!  Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!

I say “seems” because she is ill.  By her own admission today, she is ill but she has decided to “live a bit”.  And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……

This child of mine is so stubborn!!  She truly does not know the meaning of giving up.  The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die!    In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story.  This is one stubborn lady!

A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…

What makes her strong?

Her Heritage

 Image

Vic, My Dad, My Mom, Jared and I

Vic comes from a long line of stubborn Vikings.  Vic’s maternal grandmother was an amazing person.  She too was ill most of her life.  From her sickbed she “controlled” our family – as Vic now does.  My Mom certainly kept the family together.  Her immediate family was everything to her!  We only truly realized and came to appreciate her strength after her passing.  

My Dad was a wonderful caregiver and provider.  A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul.  He was a true gentleman who never let on that he did not know who you were.  Once, when he was hospitalized, I went to fetch him on his discharge.  When he saw me he exclaimed “My goodness, how wonderful to see you!  Imagine bumping into you here of all places…”  Dad lived with us…

This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up. 

Tienie, Vic’s biological dad, was an amazing person.  He lived life to the fullest – every single second of it!!  He did not ever want to grow old.  He wanted to die young.  He died young… He died living!  He hated sleeping.  Considered it a waste of time.  He was generous even in death.  He was an organ donor.

Image

 Vic and her father on her first day of school!

Tienie and I separated when Vic was very young.  He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic.  Vic’s paternal grandfather died from OI at the age of 35.  All the other paternal grandchildren are unaffected.  The only affected family member is Vic and now I believe Jared.   The curse of Osteogenesis lives on in my beautiful, innocent grandson!

Vic comes from a long line of people who lived.  It must be so hard for Vic to be trapped in a body that barely allows her to breath.  Imagine a life of pain with absolutely no prospect of recovery…

Vic is the greatest warrior of all!!   Living in the shadow of death has truly made Vic embrace life whilst she is still alive.  She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…

May God have mercy of your soul… 30.5.2012


I started this blog because I don’t trust myself to talk.  If I start crying I may not stop.  Actually I don’t have too many people to talk to.  For the past 10 years we have been waiting for Vic to die.  Initially, I think,  people believe, that holding a dying person’s hand in the final hours is  “romantic” but then the person doesn’t die…and the world moves along.  People carry on with their own lives.  That is just the way it is.  People battle to handle the emotion, the waiting, the suffering.  And it is okay for them to move on.

It is not only other peoples fault’s.  I don’t have time to visit, go for coffee, phone…  It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family.  Many of my old friends must think I deserted them.  Maybe I have but time in every which way has deserted me.

I have been moved by old friends and acquaintances sending me messages of support.  Thank you all.  I had no idea that people would actually read my blog.

Earlier today I read an blog written by Michael Wolff, a writer,  where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true.  I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye

Good news!  Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her.  She will do an experimental “procedure” on Vic next week.  Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion.  Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance.  That will be so merciful!!  Vic takes 400mg of morphine, in tablet form, twice a day.  She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain.  The meds is not what is causing her sleeping.

Vic sleeps 95% of the time.  When she is awake it is to whimper or vomit.

Jared has started to display symptoms of severe stress.  His school marks are dropping and he doesn’t sleep.  Like me, he is awake every couple of hours to check on his Mom.  Jon-Daniel doesn’t talk.  He just carries on.  I worry about him – how will he handle The Day, when it comes?

In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls.  Especially on Vic and the Boys souls…