Naked to the world… 3.6.2012

Writing a blog is scary.  I am very aware of the fact that I am baring my soul to the world.  It makes me feel weak and vulnerable.  Naked to the world…

Over the years I have written many unpublished “blogs” – it is a coping mechanism.  After my mom’s passing I wrote her letters.  In these letters I lamented our lot, wrote about my childhood memories, my happiness, fears and frustrations.  When my dad moved in with us I started researching Alzheimer’s and discovered the therapeutic value of a Caregiving Forum.  I started reading blogs of other AD caregivers’ journeys with their loved ones.  I have made many online friends with other caregivers that are in the same situation as we were in.  My dad passed away a year ago and I still subscribe to the blogs and forums.   I feel “connected” to my Dad through this.

So when you read my blog, please know that I am not looking for sympathy.  I am selfishly coping with my pain and fears.  I hope somewhere the blog will of some value to someone who may be in the same situation as we are.  I am not blogging to move anyone to tears – I am blogging through my tears.  You see, when we are around someone who is terminally ill, we cope through a conspiracy of silence.  We talk about mundane things, we smile and even laugh but it is superficial.  We do not share our deepest feelings, our tears and sorrow.

Vic often says she worries how I will cope with her passing.  How ironical is that??  But I know it is because I won’t cry now. Image

We have stopped living … 2.6.2012

Vic did not have a good day today.  She is in so much pain.  She is very swollen – I think it is a kidney thing again.  Swelling, headache, nausea = kidneys.  I suspect she has fractured another vertebra – quite high up this time.  (At any given time Vic has a couple of compression fractures in her spine.)  Poor little poppet- she was quite miserable today.

Jared was at Rene’s (his school councillor) home for a 7.5 hours math marathon session today!  She is an amazing individual with so much love and compassion.  She has taken Jared under her wing and sacrificed her Saturday for him!  How amazing can one be?  Tomorrow after band practice at school he will go to her again for a couple of hours of maths.  Jon-Daniel had a cricket match in the morning and spent the afternoon watching rugby with his Oupie.  Esther and Yuri popped around for tea and Esther spent some time with Vic.  I had a little afternoon nap = bliss!!!

Danie is a little annoyed with me.  He is going on a breakfast run with some friends, Esther and Leon.  He really wants me to go with – he even went and filled up my bike and checked the tyres…I can’t go.  I have this stupid fear that I may fall and then, who will look after my family?  If something happens to me – who will take care of my child?  Am I becoming paranoid?  Maybe!  I sometimes think we have all stopped living – we still breathe but we don’t live.  We have however learnt to live the day.  Yesterday we cannot change and tomorrow we cannot plan.  One day at a time.  In Vic’s case – one slow, pain-filled day at a time…

Tomorrow we will spend the day trying to convince Vic to go for the Ketamine infusion…It will be a difficult dayImage

“I would rather die than go back into a hospital” …1.6.2012

Today was another good day.  I however attribute this to Vic fearing being admitted to hospital next week (and trying to get out of it) as well as sheer undiluted willpower for the boys to see her having an “okay” day.

Vic fractured her tibia at the age of 5.  By then she was so petrified of hospitals and the plaster-of-Paris saw, that she hobbled on a broken leg for days!  Vic’s fractures seldom swell or bruise. Even as a toddler she would have to tell us she had a fracture.  Now she is refusing to go to hospital next week for the Ketamine infusion!!  Today she cried and said she would rather die than go back to hospital.  How are we going to convince her that she must go????

In the beginning of the year I promised her I would never make her go back to hospital – ever!  If the Ketamine reduces her pain by 10% it will be worthwhile!!  How can I go back on my word?  She spoke to us as a family and said she did not want to die in a hospital.  I promised that she could stay home and never go back to hospital until SHE decides that it is necessary.  The promises that I made are now causing severe stress in the boys’ lives.  I think they fear what lies ahead.

I understand her aversion to hospitals.  She has literally spent years in hospital!  At the Donald Gordon we know the nursing staff, the theatre staff, the cleaning staff, the kitchen staff, the receptionists, the pathologists, physiotherapists and radiologists and of course the ICU staff.  They hug us “hello”.

The ICU staff in particular is absolutely amazing!!  They know how Vic’s body reacts to the different drugs, the hospital bugs she is susceptible to, how weak her veins are.  They have pulled her out of the claws of death time after time.  Vic has survived medical crisis after crisis, each time with less and less of her physical abilities and dignity. She hates the fact that in hospital her body is no longer “hers”.  It belongs to nurses and doctors to touch and probe with little regard for her dignity or feelings. They have empathy with her, they know her sons and family but her body is just a commodity to them.  That is just the way it is!

It is going to be a tough weekend!!Image

Dying is a lonely journey. 31.5.2012

We had a good day!  Vic was up for a bit – she even went to pick up Jon-Daniel from school.  It was the first time in 7 weeks that she has driven.  It could not have happened on a better day.  At 09:30 this morning Jared BBM’d me asking me to come pick up Jon-Daniel from school.  He passed Jon-Daniel in the passage and Jon-Daniel was crying.  Jon-Daniel said he was worried about his Mom!

Vicky dragging her sick body to school to pick up Jon-Daniel defused today.

Vic received beautiful messages from Tatum and Muriel today.  It meant so much to her.  Dying is a lonely journey.  Vic inability to function as a healthy person has isolated her from the world.  Even when people come to visit she is often sleeps through the visit.

I was rubbing cream into her little feet tonight and she looked down and said “Mommy, my head and feet are really quite close together…”  We just packed up laughing!

I remember in 2007 when Vic was so desperately ill, I said to her that my heart hurts all the time.  That I think of her every second of the day and that life did not feel worth living.  Vic replied: “Oh Mommy that is so sad!  At least once a week the boys and I laugh so much that my tummy hurts from laughing!”

Things that I take for granted is an EVENT in Vic’s life…laughing, having coffee in bed with her boys, tucking them in, fetching them from school…  I love this beautiful, brave child of mine.

Please God let tomorrow be another good day!

This photo was taken on 27.3.2010


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.

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…

Last night was another bad night…23.5.2012

Last night was another bad night. 

Yesterday was the Pain Clinic.  When I gave Vic her 03:00 meds I dressed her in a tracksuit.  I would go ahead and get into the queue and Danie would bring Vic through just in time for her consultation.  I arrived at the Helen Joseph at 7:20 and was 3rd in the queue.  I calculated that if Prof Froehlich was in by 09:00, two patients ahead of us… Vic would have to be there at 10:00 to ensure the minimum wait.  Well, no Prof Froehlich and the two resident doctors started consulting just after 08:00!! I phoned Danie and told him to leave home immediately.  Murphy’s Law they got stuck in the traffic. I had to let two people in ahead of Vic as she only arrived at 09:45… 

Then three hours in the queue at the pharmacy just to be told no morphine syrup again!!!  Without morphine syrup for breakthrough pain Vic’s “life” is sheer, absolute undiluted hell!  Now I have to beg and plead for morphine syrup with GP’s…More doctors’ appointments to drag Vic’s sick little body too…  Now if Hospice would only come in life as we know it will be so much easier!  But Vic doesn’t have AIDS or cancer and no-one can guarantee that she has a maximum of 6 months left…so – no Hospice!!!

At about 01:00 this morning Vic came into my room and got into bed with me.  Her tummy was cramping badly and she was scared.  She just lay with me for a long time, sobbing and talking about her fears.

E.H.Chapin said:  Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars… 

Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when he is sad, Jared how much he helped her… She tells me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…

Oh dear Lord, when will this nightmare end? 

I am your mother – not your excuse! 8.5.2012

“I am your mother not your excuse…” brave words spoken by a true warrior!

Last night at 23:30 I received a BBM from Jared (Vic’s eldest son) “Oumie I want to ask you something and please be completely honest with me.”  I replied: “I will always be honest with you my angel” to which Jared replied “Oumie is Mommy’s time close?”

Tonight we had a family round table.  WE spoke about Vic’s imminent demise, how it would likely happen, a possible sequence of events…we spoke about the fact that there is nothing unsaid between us; that the boys would remain with me and then Vic told them that she is their mother – not an excuse for bad marks or poor behaviour…

We cried.

Vic is vomiting blood.  The pain is excruciating and she is weak and very, very tired.  How much longer before this hell ends?Image

That will be so sore… 6.5.2012

Tonight I gave my beautiful Vicky permission to die.

Vic’s pain is increasing.  I believe the sepsis in her spine has spread. The back pain is devastating.  Also the abdominal sepsis is so much worse.  In January the wound “popped” once a month and little bits of pus came out.  Five months later the pus pours out – every day…

Vic is spending more and more time in bed.  The first words she utters when I wake her in the mornings ( or any time of the day or night) is “Mommy I am not feeling well…”

Tonight she asked me what would kill her…I guessed that it would be an obstruction.  She said “that will be so sore”Image

My dearest child 27.11.2003


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 dyingImage