Danie – Vic's Final Journey

“It is close”…

Tuesday 22.1.2013 – Tonight is the first night in a long time that I lay on my sofa, in my own TV lounge, watching Law & Order. I kept listening for the sound of Vic’s little feet shuffling down the passage…It is the first time since Vic’s death that I truly experienced the “emptiness” of the house.

The house has been so busy. In the days preceding Vic’s death the boys went to stay with friends and family. Vic’s suffering was too horrible for them to witness. I did not want them to remember life ebbing out of her. On the 15^th my brother arrived from the coast and my sister from a neighbouring city. I was in such a dazed stupor that I don’t remember them arriving. I fell asleep next to Vic with my head next to hers, and my hand on her heart whilst the minister was saying a prayer….

On Wednesday the 16th Leeann started staying with me. Danie, my brother, Lee-Ann and I took turns on Thursday night staying awake with Vic. The time still passed in an absolute maze of unreality. I knew on the 16^th that Vic would die by the weekend.

Vic was still able to communicate with her eyes. She blinked when I asked her a question and her answer were “yes”.

Thursday Dr Sue came to see Vic.

“It is close” Sue said.

Murky red urine dripped into the catheter bag…. Vic’s eyes no longer closed completely… Her eyes had “broken”… she was gasping for breath.

“We must increase the Buscopan” Sue said.

“I think I have heard a rattling sound once or twice” I said

“Yes” Sue said. “I can hear it clearly through the stethoscope”

Sue increased the pain medication as well as the sedation.

We decided to let the boys come and say their goodbyes… Someone, I am not sure who, went and fetched the boys from school. The boys walked into their Mom’s room. Their eyes wide and sad. They lay with her and whispered soft words into her ears. They softly kissed her and walked away. It must of been the hardest thing they had ever done.

I send Danie out to go find me a new blood pressure measure that fits around the wrist and would not hurt her little arms every time I took her blood pressure. (Sue had one…) I became almost obsessive in trying to ascertain where she was in her journey. Vic was very unstable – within minutes her blood pressure went from 150/123 to LO (too low to measure) on the machine. Her pulse was racing at 160 beats a minute.

I lay next to her with my hand on her heart. Her little heart was pounding against the palm of my hand. Vic was fighting with every fibre in her body to stay alive. I looked at my child and thought “If I have her admitted to the Donald Gordon ICU they may be able to save her…” but then I realized that it was futile. Vic was slipping away and nobody could do anything in the world to change that. Vic was dying and I was helpless. I could not save my child.

Quiet waters of peace

Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said. “Why not? I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.

The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.

I am babbling.

“Oh…” she said. “Why not? I think I will…”

We laughed.

Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!

I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.

I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.

I am babbling.

” Sometimes the pain’s too strong to bear…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.”

A time to be born and a time to die…

It is Christmas. It is a warm, and sunny-day, and my heart is cold.

This is our last Christmas as a complete family.

Vic has been vomiting non-stop. The acid has burnt the inside of her mouth. Her derriere is so lumpy, black and blue from the constant injections. Sr Siza popped in. She examined Vic and started drawing up a Clopamon and Morphine injection.

“Please Sister, not my bum. Please do it on my thigh.”

Vic no longer has an appetite. She is sleeping at least 20 out of 24 hours. Vic is very warm to the touch and appears flushed. The thermometer reflects a temperature of 37 degrees C.

“Do you understand what your body is telling you Vic?” Siza asked

Vic nodded and whispered “I do not want to die…”

“Nobody wants to die, Vicky. We all will walk this path. Some sooner than others… You have a degenerative illness and your body is tired…”

“You must surrender your body to God. It is time for your brain to make peace with what is happening in your body.” Siza said. “Where is your Bible?”

Siza read from Ecclesiastes 3 – New International Version (NIV)

3 There is a time for everything,
    and a season for every activity under the heavens:

²    a time to be born and a time to die,
    a time to plant and a time to uproot,
³    a time to kill and a time to heal,
    a time to tear down and a time to build,
⁴    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
⁵    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
⁶    a time to search and a time to give up,
    a time to keep and a time to throw away,
⁷    a time to tear and a time to mend,
    a time to be silent and a time to speak,
⁸    a time to love and a time to hate,
    a time for war and a time for peace.

Siza prayed for Vic and the family for peace and grace in this time. Vic cried and Danie gently held her.

Danie, and I walked with Siza. Her eyes were sad when she said “Her body is shutting down. It could be quick or it could be a few weeks.”

The rest of Christmas Eve passed as if I was in a daze. Lani and the kids arrived, my dear friend Judy arrived after a marathon charity event and the smell of gammon and roast lamb permeated the house. The tables looked festive and there were tons of gifts under the tree.

Vic handed out the gifts. The kids shrieked with delight. A lot of thought went into the gifts. The gifts were truly gifts of love.

3 There is a time for everything,
and a season for every activity under the heavens:

a time to be born and a time to die,

Our dear friend Judy, with Vic, and I. How beautiful is baby Izak?

Vic is going to Italy

I sometimes think Vic will live forever.

Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!

On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August (http://wp.me/p2rPrS-bA ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!

We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!

Life is great!

“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.“

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

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.

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