I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.
So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”
In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”
When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…
My standard answer to Vic was “I will be okay baby!”
Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”
“I will be fine. I will be grateful that your suffering is over…But I promise I will!”
I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…
So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.
We spoke briefly about the boys, but Alan firmly said that today we would focus on me…
I bravely started talking without waiting to be prompted. After all, that is why I was there.
“I knew that I would miss Vic after her death but nothing could prepare me for this” I said
“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.
I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.
I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…
I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…
I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.
I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.
I saw Alan look at the clock on the wall. I knew our time was almost up.
He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.
“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”
That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.
On the 9th of October 2012 I posted these words
https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/
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.
Vic and I discussed this post… We cried then, and I cry now.
I pray that I will find peace.
This is a very emotional time in all our lives. It is 8 weeks and 2 days since Vic died. We have all lived on our nerves for a long time and although we thought it would be a relief that Vic’s suffering was over, the grief has been overwhelming. Not only for the boys and I but also others that loved Vic…
I know the family is concerned about me. I know their concern stems from love.
I however need to blog. I need to hear from other bereaved parents that I am not going mad. That my grief is normal and that it is okay to grieve for my beautiful child.
I have subscribed to several blogs or sites for bereaved parents and it is not working for me. It is other parents words.
I will however borrow these words from another grieving parent
Dear Clueless
I would like to share with you my pain but that isn’t possible unless you have lost a child yourself and that I wouldn’t want you to have to experience. So with that being said, I would like to say this. I will try to my best to understand you if you try to understand me. I lost my child. My life will never be the same. I will never be the same again. I will be different from now on. I no longer have the same feelings about anything. Everything in my life has changed from the moment my child left to go to heaven. I will, on some days be very sad and nothing you say will changes that so don’t feel like it is your job to make me feel better on those days, just allow me to be where I am.
When you lose a child you not only lose your reason for living, you lose the motivation to go on. You also lose your sense of self. It takes a long time to come to some kind of understanding for why this has happened, if ever. Of course we who have lost children know we have to go on but we don’t want to hear someone else tell us too. Especially from someone who has not lost a child. It makes me and anyone who has lost a child want to say who are you to tell me that? Did you bury your child? I don’t want this to sound like I don’t appreciate everything you say because I know you mean well, but I just want you to appreciate where I am coming from too. I want you to understand that some of the things you say hurt me and others like me without you really knowing it. I know it must be pretty hard to talk to people like myself, not knowing what to say. That is why I am writing this letter.
If you don’t know what to say, say nothing or just say I’m sorry. That always works for me. If you want to talk ad say my child’s name feel free I would love to hear his name anytime. You not saying his name didn’t make me forget it, or what happened to him. So by all means say his name. When special dates come or holidays come please forgive me if I’m not myself. I just can’t keep it up on those days. I may wish to be by myself so I can think about my child without putting on a front. Most of all I want you to know I’m having a hard time with the death of my child and I am trying my very best to get back into life again. Some days it may look like I have accomplished that, and other days like I am at square one.
This will happen the rest of my life periodically. There are just no words to explain the living hell this feels like. There are no words that could ever do it justice. So please bear with me and give me time and don’t put your own timetable on my grief and let me be the person I am now and not have to live up to the person you think I should be. Allow me my space and time and accept me for me. I will try my best to understand you.
Love, Your Friend in Grief https://www.facebook.com/pages/Whispers-from-Heaven/604565892890783
So, if you are going to read my blog read it through my eyes and see my heart. If you are unable to handle the rawness of my words know that you are reading my soul. Remember that I don’t easily verbalize my emotions and this blog is my coping mechanism.
I have found hundreds of notes and journal entries in a file called “Our Story.” Vic loved my blog and wanted me to share “Our Story”. It was her wish. I will continue to do so.
So, love me in my time of sorrow and allow me to cope whichever way I can…. I love you too and appreciate your caring.
I am systematically packing up Vic’s belongings. It has been a humongous job! Vic was a squirrel – she hoarded! I have discarded hundreds of old VCR tapes….thousands of photos and many hundreds of cards. The “Good luck with exam cards” were totally wasted on Vic – I came across her school reports again…; get better cards, I love you cards and thank you for your friendship cards from her school friends; lots and lots of Valentine cards… The one card that got to me was a card that read:-
“To My Daughter
So many times
When you were a child,
I looked upon your
Sleeping face
And wondered
What kind of woman
You’d grow up to be?”
Then on the inside of the card it reads “You grew up as wonderful as I imagined” Today I can categorically state that was not true. Vic grew up to be a far more wonderful person than I could ever have imagined. Vic was kind and generous. Vic always smiled. Vic loved unconditionally and never judged. Vic was devoid of bitterness and hate. She never spoke unkind words. Her bravery goes without saying… Vic is the bravest person I know. Vic always said “I am fine thank you…” The shrillness of the “fine” was the “stress-indicator” of how ill she was.
The cards her school friends wrote were to thank her for her friendship and support. Gia wrote on the 26th of March – year unknown: “This is just a short note to say thanks for all your help, attention, help and love while I’ve been under the weather…” On the 28th of October 1991 Tatum wrote “You’re a great friend and I am dreading this time next year when we all have to say goodbye. Thank you for being you and putting up with me…” Monique wrote “Thanx for everything. You know what everything is.” One of the Vicky’s wrote “as friends we have walked together sharing joy, laughter and tears. Though time may pass and things may change, I’m sure you’ll agree, That one thing always stays the same…each other’s loyalty” Mouse wrote “Vicks thank you for willingly giving help – be it a smile or a thoughtful thought – It may go unnoticed but it is appreciated” Gia ended most of her notes, cards and letters with “I’ll meet you at the end of the earth”
I truly felt like a grave robber going through Vic’s private correspondence. I cannot keep it all – there is just too much and I did not want to discard her whole life. So I have made a memory box of all her school dance invitations and photos, her friends’ notes, some boyfriends’ letters and her theatre season tickets. I have added some of the hundreds of cards I sent her over the years. Yes…Vic kept them all!!!!
How can I just wipe out her lifetimes memories? Vic treasured these items and I will keep it safely for her grandchildren to see one day… This memory box is her memory box. A tribute by her friends… It was an experience to “see” Vic in high school. Vic insisted on going to boarding school in High School, and she was accepted at one of the most prestigious girl schools in South Africa. Vic LOVED the freedom and camaraderie of boarding school. She got up to a lot of mischief! I have now personally seen the photos of what the girls got up too… But I am so glad.
I have come to realise that I never truly allowed Vic to grow up. I was an over protective mother and quite honestly maybe even a little overbearing. Vic always remained a child. Albeit a mature child and an old soul but never the less a child. From the day my beautiful baby girl was born I knew I had to protect her from the world. She was too tiny and beautiful for this horrible world we live in. Now my beautiful baby girl is safe from pain, hurt and the ugliness of the world.
Esther was the first of Danie’s children that I met, when we started dating. It was a couple of weeks before her wedding. I was so thrilled when she asked me to go with her for the final fitting of her wedding dress!
I will never forget her words to me in the car that day: “Don’t worry about us kids. Just worry about you and my dad”
I cannot remember whether I articulated my fear of her and her siblings, but she sensed it!
I was PETRIFIED of Danie’s four children. I did not particularly like children. Maybe my mind refused to accept the fact that I love children because I made the conscious decision to not subject a second or third child to Osteogenesis Imperfecta. The OI gene was passed onto Vic by her Dad, but we had been divorced for many, many years and I accepted that I could not have another child. I did not have space in my heart for another child.
I loved Vic with an all-consuming love. I did not always like her, but I always loved her!
I met the kids and I was petrified. They were livelier than any other children I had ever met with their own little quirks. I actually never dated a man with children until I met Danie!
I blogged on the proposal before and will not bore you with the beautiful details of it again… https://tersiaburger.com/2012/10/05/danie-the-wind-beneath-my-wings/ . You are welcome to read the post on it.
We have been married for 22 years. For 22 years these amazing children have crept into my heart and firmly lodged themselves there. They have accepted me into their lives. They loved and nurtured my Vic. I am a punker bunker granny to their children…
Esther, is very outspoken, to the point, honest and an amazing wife and mother. She is loyal to a fault, independent and fiercely protective of her loved ones. Esther is compassionate and unbelievably intelligent. She has a superb sense of humour but very sensitive. She is an amazing person.
Esther nursed her husband through Stage 4 Colon Cancer. She researches nutritional sites for correct and healthy food. She is totally focused on her family and will demolish anyone or anything that threatens them.
Esther was truly the sister Vic always wanted. There were times when things were rough between them. There were differences and some hurt. But…there was a gentle love between the sisters.
Esther popped in to visit Vic almost every day. They texted and BBM’d. They shared war stories about their children. Esther was Vic safety blanket… Esther would lie in bed with Vic and hold her hand. She encouraged and helped. As a pharmacist she was amazing in assisting us with Vic’s meds in the last couple of weeks. As a sister she told Vic to let go; that the boys were safe; that she was loved and would never be forgotten. She told Vic to go towards the light…. Jon-Daniel went to stay with her in the last days of Vic’s life. She was there when Vic left home the last time. She may have been there when Vic stopped breathing – I can’t remember. I know that she sprayed Vic’s favourite perfume on her before Vic left home….
So Esther, if you read this know that I love you deeply. Know that I respect you for the beautiful person you are and for being an amazing mother to my beautiful grandsons. Thank you for the joy you bring in your father’s life. He loves you with an intensity that is scary. When Vic died he cried and said he cannot imagine it being you…that he hoped you would end up on the same cloud one day….
Thank you for loving Vic the way you did. Thank you for comforting her in her hour of need. Thank you for coaching her towards the end of her life. Thank you for loving the boys and having compassionate conversations with them…. You know what I am talking about!
I wish you joy and happiness in the year ahead. I love and admire you.
Last year Vic said: “Why don’t I just go to sleep and never wake up?”
This year – today – I am saying “Why don’t I just go to sleep and never wake up?”
Last year Vic said: “My boys don’t need me anymore. I have been sick all my life. Even my ears hurt. ”
On the 8th of January 2013 Vic said “Mommy my room is full of angels…”
Tonight I reread something a friend sent me as a comment https://tersiaburger.wordpress.com/wp-admin/edit-comments.php?p=383&approved=1
Dear Tersia
I have been following your journey now for some time and my heart goes out to you and your family. It is NOT EASY to care for somebody that is terminally ill. It makes it even more difficult if that person is your child.
I would like to share something with you though. It is vitally important that you take care of yourself in this tiring time. Please accept all the help from family and friends that’s been offered to you. This will give you some breathing space. It will also allow Vic to know that it is okay if Mom is just having a little bit of “me” time. Her energy is very powerful and she proved it to everybody up to now that she wants to survive.Allow all Angels and guides to assist you with the care that you and your family so much need right now. God allows you to call upon their assistance when you need them. When Jacob was struggling with an Angel he called the Angel Michael to assist him and Michael was there not only to help him, but also to guide him with whatever he was struggling with. There are many stories in the Bible and other scriptures about God’s Angels. What still amazes me is that God found it necessary to create Angels. HE knew that we and all other creatures would need assistance and comfort when we are lonely. It took me a long time to work this out. It was only after my mom passed away and I fell very ill that my awareness of these wonderful creations of God was awakened.
Dear Tersia, know they are there, they are with you. You just need to ask for their guidance and assistance. Please know that Angels come in all forms. It might be your neighbour, your friend, nursing staff or maybe a presence! Nurture yourself. Get all the friends, family and help that you can now and trust people. They will be guided and equiped with the knowledge to help you now. You need to be taken care of now and so does your family.
Your friend
Louise xxx
The angels did come to comfort my child in her most fear-filled day.
We have found many angels in human form. Friends, family, acquaintances, WordPress Friends, Facebook friends…..
Thank you Louise for opening my eyes to the angels. Thank you for the angels that comforted my child in her hour of need and thank you for the angels that came and took her by the hand and whisked her away to a pain-free, joy filled place.
https://tersiaburger.com/2013/01/08/gramps-was-here/ https://tersiaburger.com/2012/06/17/i-always-pray-for-you-but-you-dont-seem-to-have-a-guardian-angel-17-6-2012/My beautiful Angle Child
Today it was 29 long miserable days since you stopped breathing.
I have continued to breathe, walk, talk, eat, drink tea; I have attended meetings, cried and even laughed. My life has continued yet part of me is dead. I have lost my words today. I just want to have a cup of tea with you. I want to tell you how much I love you and how much I miss you.
Promises Kept
I’ve kept my promise,
of what I would do.
To continue to live,
my life without you.
I get up each morning,
I get through the day
struggling past tears,
every step of the way.
I go on with life with,
a forced happy face.
My heart aches badly,
for what I can’t replace.
I don’t know what to do,
to deaden this pain
It’s so hard, here without you,
where I must remain.
But I will keep my promise
and I must believe,
That you’ll be there waiting,
when it’s my time to leave.
-unknown
Tonight I can truly sing this beautiful song to Vic…
SET YOU FREE
You’re hanging on as night turns to dawn
I know you can’t stay and soon you’ll be gone
we both know it’s hard to let go; wherever you are my love won’t be far
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
There is no fear and your leaving is clear
we’ll still have our love it remains with each tear
I cry as you leave but I truly believe; as you leave my sight we’ll both be all right
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
though you have flown to somewhere unknown
we’re never apart ‘cause you’re here in my heart
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
though I long for you to hold me; I need to set you free http://myjourneysinsight.com/
My baby girl is in the final stages of dying. She has developed a bedsore on her heel and her hip appears to be cellulitising… Vic is jaundiced and her heart rate is up to 160 bpm.
I have been lying next to her for the better part of the day listening to her slightly laboured breathing. Vic was catheterised today and the appearance is the urine fills me with dread. It is brown red in colour.
It is amazing that all Vic’s wrinkles have miraculously disappeared. Her skin is unlined. In death she is heartbreakingly beautiful. Her face is serene.
For all intents and purposes Vic’s suffering is over. This part of her journey is peaceful and serene. I am burning candles. The house is quiet but for Vic’s gentle yet shallow breathing.
I decided today that it would be in the boys’ best interest to spend a day or two with a friend. Jared is with Ricardo, BFF, and Jon-Daniel is with Henk, cousin. I cannot bear the thought of them witnessing Vic death and then Vic being removed from the house. They were so relieved when I gave them the option.
There is a steady flow of visitors in and out. Mainly family. My sister from Pretoria and my brother from East-London have arrived.
I am numb from tiredness.
Esther brought Lasagne for dinner.
It is going to be a long night. I honestly believe Vic will not see the end of this week.
Monday 7.1.2013 was a crazy day. Vic was not in a good space.
Angela, Vic’s BFF came to visit. She is not only beautiful but also a calm and serene person. She radiates goodness. Angela being here gives me some time because I really trust her. I am able to get some essential chores done knowing that she is keeping an eye on Vic.
“Gramps was here” Vic said.
“How is he?” I asked
“I don’t know. He just came to tell me how much he loves us all…” Vic replied
My Dad forgot how to breathe on the 15th of May 2011. He died in our home (in the very same room as Vic) surrounded by his beloved family. At times he was a stranger in the world. Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom. Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill. At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.
“He has come to take you by your hand Sweetie…” I said
“I KNOW Mommy” she said impatiently.
Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers. Of course, Vic immediately got a bee in her bonnet and had to get out of bed. Always the social animal!
Esther arrived and Vic burst into tears when she saw her sister.
“I am so scared Sis” Vic cried in her sisters arms.
Esther has become Vic’s “coach”. She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for. She holds Vic and dries her tears….
Danie took the boys for a haircut and new school uniforms.
In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit. It was touching when she spoke with Vic and apologized for coming to visit too late. Vic was sleeping and not aware of the visit. Joanna left with tears streaming down her cheeks. She left a little gift for Vic
“I wrote your name in the sand But the waves blew it away Then I wrote it in the sky But the wind blew it away So I wrote it in my heart And that’s where it will stay.”Siza arrived and told me that Sue would be in tomorrow morning to assess Vic. She said Vic’s colour is very poor and the circulation in her legs bad. Siza is of the opinion that the most humane thing to do for Vic would be to sedate her… Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.
I am torn. My poor child’s anguish and pain sears through every nerve ending in my body. Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end. But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die. Sedation can end her emotional anguish, but deprive us of last words.
When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries. He came to visit. I have thought of him the whole day….”
Dries is a dear family friend who died last year…
In the evening Judy (Dries’ widow) popped around for a visit. When I told her that Vic had seen Dries she burst into tears. She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…
I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…
We laughed.
Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit. Bella, a dear friend over the years, spoke to the boys with so much compassion. He grew up in a home with a mother who was ill. He said that the congregation has never stopped praying for us as a family. He said the congregation carries us in their hearts. (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)
We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family. Someone stifled a little sob. There was absolute peace and a Godly presence in Vic’s room.
Related posts:
Rest in peace dear friend https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/
For some dying is hard work https://tersiaburger.com/2012/07/18/487/
Yesterday I celebrated (another) birthday.
Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”
“No problem angel. I’ll switch the kettle on.” I said
“I will be back in a minute” she said
I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….
I went through to her room and the poor baby had fallen asleep on her bed…
Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.
He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.
Just before 01:00 am Vic shuffled into my TV lounge.
“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”
We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)
The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.
It was a perfect day.
Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.
All the grandchildren wanted to stay.
Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.
Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)
Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.
Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.
“I miss you so much Little Brother” Vic said
“I miss you too Vic. How are you feeling?” Jnr asked
“I am battling Boetie (Little Brother) Vic said
“We are coming to visit in April then I will see you Vic”
“I don’t know if I am going to make it to April” Vic said
“Just hang in there Vic. It is not that long to April…” Jnr consoled her
“I know but I am tired. I am just missing you” Vic cried
“I will fly over for a weekend. I want to see you again” Danie promised
Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16th birthday. It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.
I know this will more than likely be another last for Vic.
Sue saw Vic this morning. Her liver is very distended and exerting pressure on the right lung. I now have to use her little arms and legs as injection sites. I HATE injecting her in the legs. The doctor fears that she will develop abscesses on her bum. The entire derriere area is full of lumps and bruises. When I inject her the injection site becomes “lemon-peely”. The immediate area swells and becomes hard. Sometimes there is a fair amount of bleeding or serum loss. Her tissue is POOR!!!
I discussed various central line options with Sue. Vic refused point-blank to even consider it. Vic has been mainlined so many times. She always asked the anaesthetists to not tape her hair to the central line…. Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein…. Due to her poor tissue and bleeding tendencies it took two hours!
So we discussed the way forward.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
“Then I can die…”
“We will find a way my love” Sue said…
“It is closer that she realises” Sue said to me at her car
“Do I tell her?” I asked
“No, her body will…” Sue said
I cannot bear the thought of living without Vic.
Sr Siza examined Vic today. She phoned Dr Sue who will be in tomorrow morning. She also brought a script with for Dalacin antibiotics. The cellulitis has spread to all three the subcutaneous sites.
Siza expressed her concern at Vic’s decline…
Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”
That statement really shook me. Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions… I have never really considered living without my child.
Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters. We are hoping that they will “host” our Hospice at their premises.
The CEO knows Vicky and the boys. Jared was confirmed in his church earlier this year.
I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain. Vernon (CEO) quietly listened to us and explained how difficult fundraising is. Christians are tight with their money…
Vernon then shared the following with us.
“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky. I knew she was in hospital as she was on the prayer list. I drove to the Donald Gordon (Hospital) and was directed to the ICU. The nurses welcomed me although it was way past visiting time.”
“Pray for her. We are switching the machines off tomorrow morning…” they said.
“I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys. I stood next to a dead person that night. Two days later I heard that Vicky did not die when the machines were turned off…”
I just stared at him. I was speechless… I had no idea! It was the first time I had ever heard the story!
In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula. Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer. On the Tuesday Vic went into respiratory failure and was ventilated. I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator. By the Thursday her kidneys and liver had started shutting down.
ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit. http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome
My BFF, Gillian drove 350 kilometres to be with me. On the Thursday there was absolutely no sign that Vic could or would recover. Vic had a DNR and a living will that she had provided the hospital.
That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired. You must let her go…”
Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys. They were already in bed when we arrived home. We sat with them
“Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own. Mommy’s kidneys and liver is also not working that well anymore. The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much. They think it will be better for Mommy to be taken off the machines…”
Jared quietly started to cry. Jon-Daniel was stoic. Jared was 10 years old and Jon-Daniel 8 years old.
“What will happen with us Oumie” Jon-Daniel asked.
“Sweetie, Oumie and Oupie will ALWAYS be here for you. This is your home.”
Jared cried himself to sleep. Jon-Daniel just clung to me. The three of us shared a bed that night.
The next morning early Gill, Lee and I set off to hospital. When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”
The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.
Family and friends drifted in and out of the waiting room the whole day. My minister came and prayed for my child. Everyone said goodbye.
That afternoon Danie and I were allowed to see Vic. The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face. It was a grotesque sight.
Danie held her little hand and his tears dripped onto her arm.
“Oh sweetie” he said, the sorrow and pain raw in his voice.
Vic opened her eyes and said “Daddy”….
Three days later Vic was discharged from ICU….. It was not her time.
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
God please have mercy on my child.
I am so tired. I think it is emotional more than physical.
Vic went to the movies with her friend Tracey today. As she wanted to leave, Hospice arrived. Sr Siza was VERY dubious whether she should go… Anyway the boys went with to make sure she was okay. They are so protective of her.
When Tracey dropped her at home she was so tired she could not lift her feet. She immediately got into bed and I know it will take days for her to recover. I am grateful that she enjoyed the movie. I cannot believe my child went and saw The Twilight Saga Breaking Dawn Part 2!! She is the most anti-vampire person I know!
She said “Oh Mommy, the one part was scary but it was so much fun!”
I have read up on the effects of continued morphine administration when someone is in Renal and Liver Failure. We have no option but to continue the pain medication regime… It will help her live and yet it will certainly contribute even hasten her death.
I don’t care. I want Vic to be as pain-free as possible. It is becoming increasingly difficult to do so. She is literally on a “morphine on demand” regime. She cannot overdose – she is too used to Morphine. The dosages have been titrated over many years…
It will be a difficult night.
Vic had a night out of hell! The nausea was vicious and unrelenting. Pain reduced Vic to a whimpering bundle of human flesh.
Vic’s palliative Care physician, Dr Sue, visited Vic this morning. I think she was a little taken aback by Vic’s condition.
Sue is an amazing person. She was so gentle with Vic. Vic’s heart rate is fast and her blood pressure is 101/58. Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly. Her oxygen saturation levels are low – 90%.
Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch yet the thermometer only reflects a temperature of 36.8⁰.
I asked her what I was doing wrong because sometimes, when I inject Vic and withdraw the needle, blood and/or the injection fluid spews out! Sue explained that it because Vic’s collagen is so poor…. In layman’s terms; the flesh does not “seal” when I extract the needle…. That is why the subcutaneous syringe driver did not work and blood and whatever else spews out.
Vic is such as gentle, beautiful, caring human being. Last night when I gave her an additional morphine injection, in desperation, she said “Mommy, what do poor people do who have no access to pain medication?
As a layman with access to Google I Googled “low oxygen saturation” and nearly had a heart attack of my own.
Basically, a saturation of 97% of the total amount of hemoglobin in the body is filled with oxygen molecules. A range of 96% to 100% is generally considered normal. Anything below 90% could quickly lead to life-threatening complications. The margin between “healthy” saturation levels (95-98%) and respiratory failure (usually 85-90%) is narrow. If oxyhemoglobin is low (below 90%) inadequate amounts of oxygen will reach body cells!
As a rule of thumb, respiratory failure usually occurs when saturation (SpO2) falls to 90%, although some patients with chronic respiratory disease may tolerate lower saturations. http://www.favoriteplus.com/oxygen-saturation.php
Every time your blood oxygen level falls below 92% saturation your body suffers drastic consequences Insufficient oxygen level is an immediately life threatening issue. http://www.heartfailuresolutions.com/34/oxygen/low-oxygen-levels-how-low-is-too-low-and-should-you-worry
By tomorrow afternoon we should start getting the results in from the blood tests and blood gases. In the interim Sue has increased the amount of intravenous anti-nausea medication as well as the pain medication. Dr Sue will make a call tomorrow whether Vic should go onto oxygen or not.
We have cancelled all our vacation plans. We desperately wanted to take the boys away for a couple of days to give them a break, but it is not possible. We will have the best Christmas ever. A Christmas filled with love and togetherness…. Maybe our last.
Vic's Final Journey 