Vic has left home for the last time…


4th of January 2013

4th of January 2013

For a long time after Vic had breathed her last breath I lay next to her.  I touched her face and hugged her close to me.  Something I could not do in life as I may have fractured a bone or two.  Everybody left me alone with Vic.  I was so grateful for that precious time with my angel child.

I washed Vic and dressed her in her favourite pyjamas.  It was so difficult trying to dress her limp body.  Although I knew it did not matter anymore I was scared I would hurt her.  Years of conditioning I suppose.  I was shocked to see that a large part of her body had already discoloured.  Her right hand shoulder, her back and the top of her legs were black and blue.  When I washed her little body at 7am that morning, a mere 3.5 hours earlier, only her little toes had started discolouring… Her back was still so warm from the fever that had racked her body.  Her hands, feet and face were cold to the touch. 

I brushed her beautiful hair. 

Then I realised that the boys could not come home until Vic had been “removed”.  I phoned Siza to pronounce Vic and the undertakers and requested that they send their people to come and fetch my child.  I lay with her for a further 30 minutes.  I held her tight and cried for her.  I just wanted to die.

Siza, the angel of mercy arrived…. She was so matter of fact about Vic’s passing.  She put cotton wool in my child’s mouth because Vic’s jaw had relaxed!  I wish I never saw that!

Just before 1pm the undertakers arrived.  I was torn.  I did not want her to go but I could see that her beautiful soul had left her body.  It was no longer my beautiful baby girl who lay in that bed.  In death Vic looked like a stranger… yet I felt that if Vic left that room she would forever be gone.  Strange…..

The undertakers walked into Vic’s room.  They were so smartly dressed in dark suits, white shirts and red ties. 

They hugged me and said “When you are ready… We can wait”.

I remember thinking “I look so ugly when I cry.  These strangers can see me cry!”.  I nodded and they wheeled in a gurney type “bed”.

They meticulously folded up the outer cover to reveal a plastic sheet.   They lowered the gurney to the same level as Vic’s bed and took her from my arms…

Someone said “Be careful.  She breaks bones easily…”

They lay Vic on this horrible plastic sheet and covered her in it.  I wanted to die.  I still want to die just thinking of it.  My beautiful baby girl, who only deserved Egyptian cotton, wrapped in hard plastic!!  They quickly replaced the cover and zipped it close.  I think my sobs were driving them mad.

Vic looked so tiny on that darn gurney!  Tiny and dead!!

Minutes after one my baby girl left home for the last time.  Never again would she grace us with her presence.  Never again would she shuffle down the passage, never again would we hear her laughter or her cries of pain.

Vic left home – forever.

 

I heard someone wailing – it was a terrible sound


11.1.2012

11.1.2012 The last photo I ever took of Vic

On Thursday night I slept from 12 until 3.30.  I woke up with a start, and it was Danie’s watch…. He was sitting on a chair next to Vic’s bed.  Tears brimming in his eyes. 

“I have been timing her breathing” Danie said.  “Her breathing is shallow – every 5 minutes she takes a deep breath.”

“I read about it” I said.  It is called Cheyne-Stokes breathing”

We sat in complete silence counting the shallow breaths between the deep breaths.   I counted 25 breaths between every deep breath.

“It is changing” I said

My brother came through just before 5.  “Why did you not wake me?  I was supposed to be on duty from 4…” he said

“I could not sleep” I said

The three of us again just sat and listened to Vic’s breathing.  She was motionless and her eyes were slightly open.  Her feet, hands and arms were cold.  The rest of her body was burning up with fever – 40+ degrees C.  Her little toes had started discoloring.

At 7 O clock I washed Vic.  I had started cutting open T Shirts so her little chest was covered.  I was too scared to move her – scared that she would fracture and that it would cause her more pain.  I put deodorant on her and baby powder.  A light spray of Estee Lauder’s “Beautiful” finished off her beauty routine for the morning.

At 10 o’clock Lee had to leave.  She had a meeting that could not be changed.   She cried when she left.

I lay next to my beautiful child.  My hand was on her heart and my head right next hers.  I could hear her breathing becoming more and more shallow.  Leon arrived.  The three men stood at the bottom of her bed.

I whispered words of comfort and love to Vic – non-stop….

“I love you angel child…  There is nothing to be scared off….  It is almost over baby!  I love you so much” I repeated the words over and over again.

I could feel her little heart beating softer and softer under my hand.

“She is going” I said

Her little chest hardly moved.  Her breathing was so shallow!  And then it stopped!  For a couple of seconds there was no movement.   No heartbeat.  No breathing.  And then a tiny little flutter…and then nothing!  Just nothing!!

I heard someone wailing.  It was a terrible sound.  It was me.

Part of me had just died.

 

Rest in Peace My Angle Child 22.1.2013


100_7451

Where do I start?  How do I begin a farewell when I still can’t believe you’re gone?  How do I say goodbye to a part of my soul?

The day you were born I experienced this UNBELIEVABLE rush of love.  I was smitten from the first second I lay eyes on you.

You came into my life and changed me forever.  Over the years people have complimented me for being a good mother but I truly cannot take credit for that.  You were born good, and great and amazing.  You were the one who taught me lessons in life.  I believe you are an angel God sent to teach me.

You taught me love.  You taught me honesty.  You taught me to love unconditionally.  You taught me how to forgive and how to be strong.  You are the strongest person I have ever known.  You gave me strength when I was weak.  When times were sad and tough you reminded me to be grateful for the small things in life.  You taught me how to be myself.  Most of all you taught me about life and how to live.

When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die you taught me it was more important to feel and grow like any other child than to have me hide you under my wing.   It was so important to you to live.  And that you did.  You gave birth to not one beautiful baby but two!  You mothered the boys the way you lived life – with a passion.

You are the bravest person in the world.  You rewrote medical history.  You defied death for so many years… You mocked bad news and a poor prognosis…

 

You made me so proud.  You have always been my greatest pride and joy.  At school you excelled as a pianist.  As a mommy you were an example to all.  As a dying person you were brave beyond words.

I’m not sure how I can live this life without you.  You worried about me just as much as I worried about you.  You told everyone how worried you were that I would not cope without you.  You fought so hard to stay alive.  You fought until you gave your very last breath.  You did not want to leave your boys.  You lived for your boys.

You often said you were scared people would forget you…

No-one will ever forget you.  You made an incredible impact on the world.  You left two monuments of your love and mothering skills.  Your sons will honour you every day of their lives with their actions.

Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come.  It is ironic that you were Stepping Stone’s first death…

Two weeks before your passing you  started seeing angels.  You saw Gramps, Uncle Dries, your father and Auntie Marlene.  Then a week before your passing you said “My whole room is full of angels”  You fought to stay alive every single day of your life.  Eleven months ago you called a family meeting and told us that you had decided enough is enough.  No more surgeries.  No more hospitals.

Over the past 11 months you made your final wishes known.  You planned your memorial service.  You spoke to the boys about what was important.  I personally got a long list of do’s and don’t’s.

Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body.  But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!

The day you were born you filled my entire life.  You were always my first and last thought.  I feel numb and as if I am in a bubble.  You will be happy to know that we have been surrounded by love and support.  But it still feels as if the world should have stopped because you left it.

Vic, I miss you so much already and I don’t know if I can take this pain anymore.  But then I think, how can I be sad when I know you’re in a better place?  How can I be sad when you brought me so much happiness?   How can I be sad when God is already working miracles through you?  How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother?  How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes?  I thank God every day for the time we shared together.

Baby I promise you today we will be the support system for the boys you wanted.  We love them so much.  No-one in the world can ever take your place.  We promise we will keep your memories alive.  We will honour our promises to you.

So now we must bid you farewell.  It is your time to run, free from pain and suffering.  We will always love you.  We will never forget you.

Rest in Peace my Angel Child. 

 

 

Signposts for Dying


Yesterday I posted on “time”.  Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying 

Some of the stages of dying start to be discernible a few months before death occurs.  

 Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm. 

 Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods.  This year she relived every minute of her father’s final journey… Vic has started living in the past.  

 I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

 Vic no longer eats big meals and I seldom hear her say “I am ravenous”.  Due to the 81 abdominal surgeries and multiple bouts of septicemia  Vic’s absorption is very poor.  (Poor absorption = BIG appetite!)  Vic used to have the appetite of a horse – always nibbling and scrounging for food.  Now it is sheer discipline that keeps her eating.  She knows she cannot have medication without eating first.  Strange thing is that she is not really losing weight.  Hospice says it is due to the high levels of cortisone she takes…  I have been told by Hospice not to worry about her loss of appetite.  Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

 The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria.  Our bodies actually start relaxing into this stage of dying. 

 Vic still drinks a fair amount of coffee.  She used to drink it warm but now she dozes off before she has finished her cup of coffee.  She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep.  It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side…. 

 Reduced appetite and increased sleep is called “Signposts for dying”.

 A couple of weeks ago Vic was very emotional.  She would tear up without any reason.  This stage has passed.  It is as if her tears cleansed her soul. 

 Vic is battling with loneliness.  She hates being alone.  If she could she would have one of us around her all the time.  She often complains that we do not spend time with her.  We do spend a lot of time with her.  She just dozes off and then we leave to carry on with our lives…  The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

 Vic is not in good shape at all.  She is suffering severe cramping and nausea that is not responding to any of the medication.  The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning.  She also suggested that Vic be admitted to Hospice In-Patient’s.  Vic and I firmly declined…

 It is obvious that Vic has one or other infection.  I think it is the abdominal sepsis.  She seems flushed and feels hot and cold.  The thermometer does not reflect her running a fever.  This is obviously something as Ceza mentioned it to the doctor.  She explained that this happens when the auto-immune system is compromised.  I have tried to Google it but without too much success.  I will ask the doctor tomorrow morning.

 Vic is in terrible pain tonight.  I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even.  She whimpered in her drug-induced sleep….

 I know the shutting down process has started.  Not because Hospice told me but because Vic told me. 

 Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!

 

 

Is there pain after death – post 2


A pensive Vic…. 2011

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…

It is okay to let go my angel child.

Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.


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http//www.scientificamerican.com

Today I read heart wrenching posts of bloggers who are in so much pain!  Katie Mitchell’s post filled me with a deep-seated sadness and a horrible, familiar feeling of helplessness.  I am so sad and angry for all the pain out there.

Katie blogs as follows:  “Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and three days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell just to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thought and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing.”

http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water

I shivered when I read this post and for a while I was blinded by tears.  I do not cry easily. I reread the post…. How is it possible that one young person can suffer so much pain?

It is a basic human right for chronically ill patients to receive palliative care services while they are receiving life-prolonging or curative treatments…. Why is pain treated with so much disregard by the medical profession?  Is it because people on the other side of the prescription pad are inadequately trained or like me they have never experienced pain?

Doctors are taught that pain is a sign of illness.  In their quest to find and treat the cause, they often neglect to treat the pain.

Vic was treated by the pain clinic for the past five years.  The head of the department is a professor of Anesthesiology.  Vic’s surgeon has been operating on her for the past 10 years and performed at least 60 of her 80 operations.  He knows how little of her intestines are left….  So does the professor.  Yet both these doctors chose to ignore this important factor when managing Vic’s pain.

At best her absorption is extremely poor and we constantly battle malnutrition.  We fluctuate between mechanical obstructions and diarrhoea.  400mg of MST twice per day just accumulates above the heavy fecal loading or is literally being flushed from her system within a very short period of time.  Combine this with severe vomiting bouts…. Often we lose tablets, either end, which is still totally intact…. Maybe the Jurnista worked because it is a slow release tablet that absorbs differently to the MST.

“In simple mechanical obstruction, blockage occurs without vascular compromise. Ingested fluid and food, digestive secretions, and gas accumulate above the obstruction. The proximal bowel distends, and the distal segment collapses. The normal secretory and absorptive functions of the mucosa are depressed, and the bowel wall becomes edematous and congested. Severe intestinal distention is self-perpetuating and progressive, intensifying the peristaltic and secretory derangements and increasing the risks of dehydration and progression to strangulating obstruction.” http://www.merckmanuals.com/professional/gastrointestinal_disorders/acute_abdomen_and_surgical_gastroenterology/

intestinal_obstruction.html#v890928

Now with Hospice the team has realized that her tissue is too poor for subcutaneous morphine, tablets don’t absorb, morphine patches cause skin irritation….Now I administer morphine injections into the skin.  At least the Hospice team is looking for a solution and we have had more good days in two weeks than we had in six months!

In my book every single person is entitled to proper pain management.  In the past, management of chronic pain has often produced unsatisfactory results. For approximately 80% of the world’s population, pain relief when needed, is a right yet to be realized.  One of the chief reasons for this stems from misunderstandings about the pharmacological characteristics of morphine and other opiates.  Furthermore, in an attempt to limit the opium trade, barriers were put into place, to prevent people from accessing pain medications.

Morphine is an opioid.  A psychoactive chemical which has been used for centuries to treat acute pain….

A number of medical schools no longer teach opioid prescribing. Doctors inexperienced in the use of opioids do not know how to initiate, titrate, and withdraw the medication. Faced with undesirable outcomes in patients (e.g., respiratory depression after a rapid increase in dose), physicians have become reluctant to prescribe these medicines. Recent studies have proved conclusively that as long as the patient is in pain they would not develop a psychological dependence on the drug.  It is encouraging that the recent increased interest in the clinical pharmacology of symptom control has demonstrated that it is possible to use morphine safely and effectively, even in patients with advanced disease.

I have seen with Vic that freedom from pain actually prolongs life and allows the body to heal or recuperate.  It is virtually impossible for Vic to die of a morphine overdose even if the dosage is increased substantially.

The human suffering due to lack of pain relief is an affront to human dignity!

In South Africa a large portion of our population is HIV positive.  They live in rural areas where there are no doctors or pharmacies.  If they are lucky there may be a clinic with a nurse….  A doctor’s prescription is needed for morphine.  No doctor = no morphine = painful death.  In syrup form it is cheap!

What a cruel world we live in! When a young girl is fearful of seeking medical help in a first-world country it is truly a disgrace.   “I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.”

I am grateful to the Hospice team!  I am grateful that Vic has been spared further suffering.  We cannot prevent death only unnecessary suffering!

“Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.  Then you start thinking who would care…if one day they woke up-and you weren’t there.”   Unknown

I would like to list some of the wonderful blogs on pain that I follow slavishly.

http://fullcircledme.wordpress.com/2012/09/20/myths-about-pain-meds-vs-addiction-or-dependence

http://now.tufts.edu/articles/world-hurt-pain

http://ohwhatapain.wordpress.com/being-treated-like-an-addict

http://ohwhatapain.wordpress.com/2012/09/26/flares

http://walkingthroughpain.wordpress.com/2012/09/28/ahhhhhhh/

http://connectivetissuedisorders.wordpress.com/

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

A lifetime ago…

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!!

Caregiver Isolation


Alberton-20120625-00559It happened without warning…

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.

Dad and I

Dad and I

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….

“Love you Mommy…”

“Love you Baby Girl”

“Never Alone”


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We played “Never Alone” as we carried Vic out of the church to the hearse…”Never Alone” because our love will always enfold you.  We love you so much!!IMG_8396 062

Lady Antebellum – Never Alone Lyrics

“Never Alone”     http://www.youtube.com/watch?v=lnNK4Alwbsw

May the angels protect you 

Trouble neglect you
And heaven accept you when its time to go home
May you always have plenty
The glass never empty
Know in your belly
You’re never alone

May your tears come from laughing
You find friends worth having
With every year passing
They mean more than gold
May you win but stay humble,
Smile more than grumble
And know when you stumble
You’re never alone

Chorus: Never alone
Never alone
I’ll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn’t goodbye
My love will follow you stay with you
Baby you’re never alone

well
I have to be honest
As much as I want it
I’m not gonna promise that the cold winds won’t blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone

Chorus

May the angels protect you
Trouble neglect you
And heaven accept you when its time to go home
And when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone

Chorus

My love will follow you stay with you
Baby you’re never alone

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24.12.2012

24.12.2012

Jon-Daniel writes…I wish


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Jon-Daniel is going through a rough time.  He posted this on his Blackberry Status.

I wish there were visiting hours in Heaven.  Miss you my little angel.  We all do!

Hamba Kahle Little One…


Friday evening we duly said goodbye to young Izak.  My heart is at peace.  His forever-parents are a wonderful couple.  The Dad refers to Izak as his “first-born” son and the Mommy glows with pride when he does something cute (which is all the time).

I am so grateful that he will be going to a loving home.  The parents are intelligent, sociable and gentle.  The Mommy seemed a little uncomfortable changing and feeding him, but I think she may have been a little intimidated by our presence.  The Dad was born to be united with Izak.  They even look-alike!

The precious little angel was at his best behaviour.  It is as if he knows something is brewing….

Lani is such a kind, gentle soul.  She arranged a “Stork Tea” for the Mommy.  Some of her friends made up little gift parcels, and Lani packed one of each of his cereals, Purity, finger biscuits, medicines etc for the Mommy with detailed instructions.  She also made a beautiful “First Bible” with Izak’s photos in it!  The Mommy cried!

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His Oumie (that’s me) bought him a jean, baseball jacket and in African Tradition – a blanket.  I hope that when he is wrapped in his blanket at night he will feel loved and cared for, even when we are gone from his life.

I did cry when I kissed him for the last time.  I felt good knowing that he has forever-parents that love him and who will cherish him.  I can see he will be their pride and joy!

Tuesday at 1 pm Lani has to kiss baby Izak goodbye.  I know she will be heartbroken.  She has such a special bond with him!  He looks at her with absolute adoration in his bright brown eyes.  I know the girls will be heartbroken for losing their little “brother”.  Tom cried on Friday night when he prayed for Izak and his Forever Family.  I know in his heart he had some dreams of being Izak’s “wingman” on his first night out on the town.

 Take my hand and hold it as if it is my heart....
Forever Daddy – take my hand and hold it as if it is my heart….

I pray that Lani will cope with saying goodbye.  I know how hard it is!

I salute Lani and Tom for making a difference in an incredible baby’s life!  I believe that his abandonment is the best thing that could ever have happened to him.  His birth mom made an incredible sacrifice to ensure a better life for him.  In Lani and Tom’s home he had the best possible start to a good life.  Izak was showered with love by everyone he came in touch with…He won over hearts of stone!

My wish for this adorable little boy is a life filled with blessings, love, care, good health and joy.  Izak has the potential to become president of this country.  I pray that his forever parents will cherish and nurture this potential and guide him wisely.

So my precious cherub who laughs a lot, know that you started life surrounded by love.   Hamba Kahle.  I will miss you little one.  You will always remain in my heart!  (Hamba Kahle means to “go well” or “stay well”, not really goodbye)

Tom, Lani and Girls – I salute you for selflessly loving this precious child.  You have given this little boy a chance in life.  I love and admire you for it.

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I WANT MY CHILD BACK!!!


Yesterday morning I teared up – again.  Danie asked “And now?  What’s wrong?”

“Just missing Vic” I said

“Shame” he said with sadness in his voice.  “I miss her too”

We spoke about how my grief had changed over the past four months.  Today it is exactly four months since my precious child died.  I keep using the words “death and died” and not the gentler “passed”…  I do that because death is harsh.  My child DIED, she is DEAD.  My pain is as real as it was 4 months ago.  My grief is however no longer as transparent as it was to the world.

Four months ago when Vic died my body physically hurt.  My heart was physically aching.  The pain was new.  Now my grief is in me, part of me as if it is a limb or organ…  My grief is hidden from the world. If I did not tell you, you would never know.

To the world – I seem to have adjusted to the loss of my child.  I am “functioning, smiling, carrying on with life”… People are so relieved that they no longer have to cope with my raw grief…

Earlier tonight I read this on Facebook -https://www.facebook.com/TheGrievingParent

“I never knew my mind could be dominated by a single thought every day for years and still not get in the way of the progress of my life. The hands on the clock continue to turn, and the sun rises every morning. 

Even though the grief is not on the surface, the missing is as strong as it ever was. We can’t explain it, but we want to share it. We might not break down, but the strength of the grief never fades.”

We just keep on living with it and do the best we are able to do.”

I miss Vic more today than I did four months ago.  I keep looking at photographs of the past couple of years so I can REMEMBER her suffering; I re-read my blog to REMEMBER her suffering; I keep trying to find solace in the fact that she is pain-free.  It is becoming more difficult to see the positive side of Vic’s death.   My mind is blocking out the horror of her suffering!  I am remembering the good times only.

I hear you say “It is good”  No, It is not good!  If I forget her suffering I will never accept the “need for her to die” element of Vic’s death.

The night that haunts my sister

The night that haunts my sister

My sister shared her heartbreak with me…She said that one night when she slept with Vic she woke up to hear Vic talking to me.  She said Vic was crying and saying “Mommy I am so sore.  I can’t do this anymore”  Lorraine said she kept her eyes shut and pretended to sleep because she could not deal with the moment… Why am I forgetting??????  On the 13th of November I posted “Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!” http://tersiaburger.com/2012/11/13/signposts-for-dying/

I want my child back with me. I want to hold her, tell her I love her.  I want to hear her footsteps in the passage; I want to hear her voice…

I WANT MY CHILD BACK!