Category: Hospice

Vic’s legacy – her story


I have not posted in a long time.  I keep thinking up posts but I never seem to have writing time.  I do dream of having time to write my book.  No, let me rather rearticulate that…I dream of having time to attempt writing a book that will capture the pain and indignity that my little girl suffered.  The book must portray the immeasurable value of her legacy.  It is not only a huge responsibility and project but the fulfillment of the deathbed promise I made.

On Saturday I spoke, at a fundraiser, about the story behind the starting of Stepping Stone Hospice.  I was given 20 minutes but I think I took much longer.  I wanted people to meet Vicky.  The “healthy”, carefree child/woman with a heart full of hope.  I wanted people to see how during the last 10 years of her life she was stripped of so much.

And, when she realized that there was no more hope to feed on…

I did not have the time to talk about the bedsores that developed the last day, the fact that I did not know I had to turn her every two hours… I wanted people to understand the helplessness her boys felt seeing their mother in so much relentless pain.  The trauma they experienced seeing Vic live through the pain, the indignity of the disease, her quiet resolve of accepting “it was over”.

It felt almost “clinical”.

How do I begin to share the horror of my child’s journey?  My horror of seeing her being wrapped in a plastic sheet… the horror of knowing that we lost the battle? The “now” nightmare of being able to sleep and wake up in tears because I miss her so much…

For so many years I did not sleep because I was scared I would not hear her.  Physically and mentally I was exhausted.  Now…I do sleep but my soul is tired.

I must capture the heartlessness of the medical profession; the lack of counseling;  the importance of hope…  I must capture the bravery of a tiny little girl fighting for just one more day – one day at a time.

But most importantly I must fight to keep Vic’s legacy alive.  I have to make a difference so that, in Vic’s words, “no one will suffer like I did.”

90968f1abf4dd596b81fe0737256e7ab-heavens-brother

A

 

 

1423 days


I have survived 1423 days (3 years, 10 months, 23 days) without my beloved child.  

It has become easier.  I am used to the pain.  I am at peace with the fact that my child’s suffering is over.  I honor her memory every day of my life.  Every day, when I walk through the In-Patient-Unit of Stepping Stone Hospice I thank her for her selfless request that “no-one should suffer the way she did”.

Families talk to me about my brave little warrior and thank me.  Thank me?  I don’t think so.  I would never have had the guts to start a Hospice.  I would still be lying in my bed grieving.

Life has been hard without Vic.  It was so difficult getting my life back on track after she died.  I have missed her wisdom and guidance with the boys,  I have resented the fact that I have become a backup mother to my precious grandsons.  I wanted to be a mother and a grandmother.  I hated being a bereaved mother.  I still do.

Our lives have settled.  Until May this year.

On the 31st of May, I received a phone call from Jared (eldest grandson) to tell me his father had died.  I was filled with terror, heartache, and fear.  My go-to person was no longer around to advise me and run interference with the boys.

I was in England at the time of Colin’s death.  I flew back the same afternoon.  All I can remember of the flight was how my face ached from crying. I was heartbroken leaving my little UK granddaughters behind.  They sobbed.  I sobbed.  We all sobbed.  I dreaded arriving in South Africa and facing the boys’ heartache.  I was consumed with guilt that I wasn’t with them on that horrible day.

I arrived in South Africa to meet two dazed young men.  I had to go and identify Colin at the mortuary and once again arrange the funeral of a child.

On the surface, the boys were brave and yet so devastated.  I was heartbroken.  At a certain level, Colin’s funeral was more difficult than Vic’s.  Colin was young and healthy.  He had truly connected with the boys and they loved spending time with him and his new family to be.  They loved being part of a family.  Vic had been ill for so many years and her suffering inhuman.  I was relieved that her suffering was over.

But Colin was so young and alive.  He had so much to live for.  So much to give.  He was at peace with his life and in love with a wonderful woman.

The day Colin’s clothes were brought into Stepping Stone Hospice, as a donation, I had a total meltdown.  It was the second time a child of mine’s clothes were donated to Hospice.

Yet, time passed and I am once again getting used to the pain.  That horrible empty feeling in your heart when you suffer a great loss…

I read many blogs and I often wondered why people remained stuck in their grief.  I wondered why they were unable to move forward…

Vic’s eldest son started displaying signs of PTS (Post-traumatic stress).  He suffers from panic attacks  and stopped wanting to be home.  He was angry with the world and especially me.

There are many reasons for this and it is not for me to write about his reasons.

What I am able to write about is the fact that Jared was trying so hard to protect his little brother and I from the pain and trauma of Vic’s death that he never dealt with it for himself.  He spread his angel wings over us and never stopped looking to see whether we are okay or not.

Now this beautiful, “parentified” young man is caught up in a cycle of trying to deal with the layers of grief resulting from his parents’ deaths.  He is working so hard to learn how to deal with his complicated/compound grief.  He is brave and beautiful.  He is in so much pain.

But, I know that in time he will heal.  He is no longer avoiding his grief.  He is dealing with the cancer in his heart eating away at the very grain of his soul.

I pray that I will have the wisdom to guide him through this difficult time in his life as he guided his brother and me through the first years after Vic’s passing.  I pray that he will always remember my love for him.  I pray that I will learn to cope with my guilt of not protecting him from something that I was aware of…

I now know why people remain locked into that cycle of grief.

https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

850 days


It is a mere 850 days since Vic died.  2 years and 4 months seems so short… 850 days seems far more representative of the longing.  It seems “longer”….

I woke up this morning with tears pouring down my cheeks.  I so longed to hold my child.  I know that the boys remembered too.  Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!”  The first to “like” his post was his brother.

I imagined that the longing would get better.  It doesn’t!

At first it felt as if I was overseas – away from the trauma of Vic being ill.  I always felt guilty at the “reprieves” I had when I was travelling for work.  Now I would give anything and everything for just an extra minute with my child.

It was hard standing next to Vic’s bed hearing her cries of pain.  It was even harder seeing the despair in the eyes of her precious boys when they stood next to their mom’s bed helpless to ease her pain and fears.

So often over the years I wanted to run away.  In the end, when Vic cried from fear of dying, I felt the need to put an end to her suffering well up in me.   I put my hands over my ears and screamed in my head.

Vic and her Dad
“Don’t leave me Daddy!  I am scared!”

How do you answer your child when she cries “I am so scared”?

We have a patient at Hospice who vocalises her fear the way Vic did.  Today I just held her.  How do you still the fear of the unknown in a dying person?  And NO!!!!  It has nothing to do with religion.  Everybody is scared.

From that dreaded moment when a patient is told they are terminally ill an avalanche of shock and fear hits them.  It is called actually “named” – terminal fear.  Vic (and Elizabeth*) fear dying, pain, saying goodbye, loss of control and mostly all-encompassing the fear of the unknown.

Vic’s overwhelming fear was that people would forget her – that she would be replaced….  Vic questioned her life’s worth.  She did not work and in her mind that meant it that she had not achieved anything.  That she would leave no legacy.  No matter how many times we reassured her that she inspired hundreds of people worldwide, the fear never left.  I hope that she now knows how powerful her legacy is!  That hundreds of patients have benefitted from her death wish and, most importantly, that her sons are her true legacy.

I have witnessed that grieving starts the moment of handing down the sentence.  It is a long and hard journey for the dying person, their loved ones and friends.

And, today that Elizabeth’s* fear rests heavy on my heart, I know that we will provide her a safe haven where she can relax into death.  We will hold her hand and guide her family through this dreadful trauma of saying goodbye to a wife, mother, grandmother and friend.

I pray for wisdom and strength to handle the déjà vu of Elizabeth’s* final journey.

 

 

Unimaginable pain


When my beautiful little girl exhaled her last breath, it felt as if my heart was ripped into a million pieces.

One year and 5 months have passed and my heart is still in a million pieces.  But, the pain is no longer that same raw pain.  Sometimes it is a sharp, searing pain; sometimes a dull heartbreaking pain.  At times I feel so alone, numb and at other times I am convinced that I will lose my mind with grief.

But, the pain is more “refined”.  It is no longer that raw, unbearable pain.

There are times that I feel that my nerve endings are exploding.  And yet, there any many things I can no longer remember.  I read today that it is my body is protecting me… I am grateful for it.  I am glad that I have forgotten some of the horror of Vic’s death.  I am clinging to the good days.

I went away with two friends last weekend.  It was amazing.  We laughed until we cried, we spoke about the death of our loved ones, we loved and supported one another.  The empathy stemmed from knowledge.

2013-08-25 11.34.27

On our first night in the mountains I dreamt of maggots.  There were maggots everywhere.  I tried to kill them, but they kept crawling out of everywhere.  I was scared and nauseous.  I am petrified of maggots!

To see maggots in your dream represent your anxieties about death. It may also be indicative of some issue or problem that you have been rejecting and it is now “eating away” at you. You need to confront it for it is destroying your sense of harmony and balance.

Maggots as true to their characters signify similar emotions in real life if appear in dreams. The strongest emotion the maggots dreamer having is the fear of its own death. You can say it as fear or curiosity related to death but the persistent thought of death can be the result of such type of dreams. Maggots in dream also signify that the person is far away from mental and spiritual peace which can prove harmful for him in many ways.
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

A very common dream of maggots is to see them gathered around you and you are trying to remove them as quickly as possible. This you are trying to do with vacuum cleaner or burner or chemicals. All the dreams suggest the need of your brain to be free from nay complications and guilt. Your attempt to kill them shows that you want to bring thing back in order. This also means that you are facing some troubles in life and standing on your grounds to let it pass
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

So, which one is it?

I do not fear death.  I fear dying in pain and indignity.  I fear being a burden to my loved ones.

I have often said that when I am dying I want to be dropped off at a hospice.  My loved ones must kiss me goodbye and leave.  I do not want them standing next to my bed watching me gasp for breath… I want a big sign put up above my bed that must read “Do not touch”.

I am facing difficulties in life.  So much has changed in the past 516 days.  I have lost more than my child.  I have lost being a mother.  I lost my best friend.  We lost our laughter… Judy reminisced this weekend about how Vic and the boys would laugh at night when they said goodnight.  I have lost others that I love because our pain collided.

Yet I am alive.  My life goes on despite the terrible void that Vic’s death left.  The boys are so amazing.  Soon Jared will attend his Matric farewell. Next year he will go to university… firsts that his mom will not be part of…I can just imagine the excitement if Vic had been around.

When you lose a child you get caught up in a maelström of grief.  The firsts never end.  Every morning the pain starts all over again.  The grieving never ends.

At a funeral I attended today the minister said “Grieve hard”.

I do.

.

Vic’s Mother’s Day roses


Iceberg Roses
Iceberg Roses
Alberton-20110914-00206
Entrance to Vic’s flat. The Iceberg Rose outside her bedroom window when it was still snow white… 14.9.2011

In 2005 I planted an Iceberg Rose outside Vic’s bedroom window.  It looked pretty and gave her great pleasure.

Roses have always held a lot of meaning for me.

   
Red Roses: A red rose is an unmistakable expression of love. Red roses convey deep emotions – be it love, longing or desire. Red Roses can also be used to convey respect, admiration or devotion. A deep red rose can be used to convey heartfelt regret and sorrow. The number of red roses has special romantic meanings associated with them. 12 red roses is the most popular of all which conveys “Be mine” and “I love you”
White Roses: White is the color of purity, chastity and innocence. White flowers are generally associated with new beginnings and make an ideal accompaniment to a first-time bride walking down the aisle. White flowers can be used to convey sympathy or humility. They also are indicative of spirituality. Hence, white roses also follow suit.
Yellow Roses: Yellow roses are an expression of exuberance. Yellow roses evoke sunny feelings of joy, warmth and welcome. They are symbols of friendship and caring. The yellow rose, like the other roses, does not carry an undertone of romance. It indicates purely platonic emotions.
Pink Roses: There are a lot of variations of the pink rose. Over all, pink roses are used to convey gentle emotions such as admiration, joy and gratitude. Light pink rose blooms are indicative of sweetness and innocence. Deep pink rose blooms convey deep gratitude and appreciation. Pink roses also connote elegance and grace.
Orange Roses: While a yellow rose reminds us of the sun, an orange rose reminds us of a fiery blaze. These fiery blooms signify passion and energy. Orange roses can be used to express intense desire, pride and fervor. They also convey a sense of fascination. These flowers rival only the red roses as messengers of passion in romance.
Lavender Roses: A Lavender rose like its color conveys enchantment. It also expresses “love at first sight”. Darker shades of lavender roses (close to purple) convey a sense of regal majesty and splendor. These roses are used to express fascination and adoration.
Blue Roses: A perfectly blue rose is still elusive like the perfectly black rose. Blue roses cannot be achieved naturally so they represent the unattainable or the mysterious. Blue roses therefore embody the desire for the unattainable. They say “I can’t have you but I can’t stop thinking about you”
Green roses: Green is the color of harmony, of opulence, of fertility. It is also a color indicative of peace and tranquility. Green roses (these are off-white roses with shades of green) can symbolize best wishes for a prosperous new life or wishes for recovery of good health
Black Roses: Black is the color of death and farewell. A black rose, like the blue rose remains elusive. What we know as black roses are actually really dark red roses. Black roses convey the death of a feeling or idea. Sending black roses to someone indicates the death of the relationship.
Mixed Roses: By mixing rose blooms of different colors purposefully, you can create a bouquet of emotions. For example, a bouquet of red and white roses would mean I love you intensely and my intentions are honorable. A random mix of roses would convey mixed feelings or send a message: “I don’t know what my feelings are yet but I sure do like you enough to send you roses.”

The white roses symbolized Vic’s pure heart; the love that filled her precious heart… Vic had no malice in her.  She was a people pleaser with an abundance of love.  Vic loved passionately.  There were no half measures in her life.  She loved the way she lived.  She loved her family, her boys, her friends.  Vic loved life.

At Stepping Stone we started a memorial garden.  Symbolic gestures are part of the healing.  Planting a rose in memory of a loved one brings a certain amount of solace…  I see people come back to check on their roses; they photograph the roses.  Is it a way of clinging to something living that represents a loved one?  I think it may be the case.

I awaited Mother’s Day with trepidation this year.  Yet the morning dawned and I was fine.  I spoke at a church on Hospice that morning.  Jon-Daniel accompanied me.  Poor baby.  He sat through an Afrikaans sermon that I am sure he did not always follow.  I stood in front of the congregation and wished all the mommies a happy Mother’s Day.  I had a smile on my face but my heart wept for Vic’s precious boys who did not have a mom to celebrate the day with.  I wept in my heart for me – I was childless.  It was not a happy day for us.

In the afternoon we went to a nursery and bought roses for the memorial garden.  The boys chose a deep pink and I chose a gentle pink.  It represented Vic’s gentle nature, her femininity and “softness”.  The boys said their rose reminded them of Vic’s boldness;  her passion for life.

We bought Steers Burgers – Vic’s favorite hamburgers and that was indeed her last meal.  We picnicked in the Stepping Stone Garden.  We planted Vic’s roses and released balloons.  Gentle tears ran down our cheeks as we sent up balloons filled with love and longing.

Vic's memorial Mother's Day Rose
Vic’s memorial Mother’s Day Rose

20140520_091449[1]

The Boys Memorial Mother's Day Rose
The Boys Memorial Mother’s Day Rose

A week ago I noticed an amazing thing.  Vic’s white Iceberg roses, planted outside her bedroom window, started turning pink…

20140521_174502[1]
Vic’s message of love – white roses turning pink
  20140522_063904[1]

20140521_174959[1]

My precious little Angel I am so grateful for the reminders that you are with me.  I wish I could hold you but I know that you see our pain, our empty hearts and that you are trying to reassure us that you are indeed our guardian angels.

 

 

 

 

16 months of Hospice and two special angels in Heaven


In the early hours of my Dad’s 3rd anniversary I feel compelled to give some feedback on Stepping Stone Hospice.

Sixteen months ago, with unbelievable arrogance we started Stepping Stone Hospice. What a journey it has been. We started working from my home with a registered palliative care sister, a wheelchair and very little else.

Sixteen months later we have not only moved into a lovely building but we have increased our In-Patient-Unit for 4 beds, we employ 2 nurses, a staff nurse and a team of 13 palliative trained caseworkers. We have plans to extend the building so we can increase the In-Patient-Unit to 10 beds. Every piece of furniture and equipment was donated by the community and to date we have not asked anyone for a single cent. There have been months where we had to pay the nursing staff from our own pockets, but we have never turned away a patient.

We have received beautiful letters of gratitude, established a memorial rose garden and a reputation as a great Hospice.

I am in total awe of the phenomenal nursing staff who go beyond the call of duty. They will go and sit with a family and their dying loved one at 3am in the morning… On Saturdays and Sundays they interrupt their lives to care for the destitute dying in our community.

We have an amazing group of volunteer caregivers who sacrifice their time to guide the families through the final stages of their loved ones journeys. We cry with the families, hold their hands and sing for the dying.

I am so grateful for this amazing organisation and everyone who is involved with it. I am grateful that Vic’s legacy has made a difference to other end-stage Alzheimer patients. I remember my precious father who fought with every fibre of his body to hold onto his memories, his mind, his family….

IMG_7742            SteppingStoneLogoSmall (2)

20130905_122019

How to die


People live as they die.

If they constantly worried about their health and each and every little pain and symptom in life, they will worry until the end. If people were unconcerned about their health in life they will be slack in seeking help and treatment. If they were bad-tempered and impatient in life, they will die impatient and bad-tempered. Gentle people die gentle deaths.  (I am excluding violent deaths from the statement above.)

In Hospice I am amazed to see with how much stoic dignity some people die. Many of my acquaintances have died in the past 14 months under our care. People that I knew were dignified, in life, died peaceful dignified deaths. Up to the end they will say “please” and “thank-you.” I have witnessed, and experienced people hold onto life with every fibre in their bodies (as did Vic). I have also seen people “decide” to die. We see it in their eyes. Death is a decision.

Dying is not a two-minute thing… some people die slowly over many days. In these slow, lingering days it is our job to keep the dying pain and symptom free. Comfortable surrounded by their loved ones.

In a perfect world people die at Hospices surrounded by their loved ones – in theory that works, only in theory.

Many people are dropped off at the In-Patient-Unit and as soon as it is “decent” the family will leave to rest… Some don’t return. Some do after many phone calls updating them of the gravity of their loved ones condition. Some will pop in for the final moments. Some don’t. Some stay. They enfold their loved one with compassion and love, complementing us in our job. Some people die with their loved ones united in prayer; others die with the family singing gentle songs. Some die telling their loved ones to f… off…..

I have come to the conclusion that people without a spiritual and/or religious base die bad deaths. They swear at their families and the world until their final day… They worry about their new cars; a business deal – some have alcohol sneaked into the IPU. They deliberately remove their diapers and urinate on the sheets; one even defecated on his sheets defiantly grinning at the staff. A final “f— you” act. No, he was fully conscious of his actions and the effect that it has on those caring for him. He was dying from cancer not Alzheimer’s.

Seeing someone die is quite amazing. It is a beautiful experience witnessing the soul leave the body. There can be no doubt that there is life hereafter.

A young woman died in the IPU. She lingered for 8 days. Finally only her mom was left next to her bed gently whispering words of love and encouragement. After she died we prepared her cancer ravished little body for collection by the undertakers. When they arrived I escorted them to her room. She lay there with an angelic smile on her face. I called her mom and said “you have to see this…” When her mom had left her side it was just a tiny little bag of bones that lay there. When her mom next saw her she had this peaceful, angelic smile on her face. Truly a message for heaven for her grief-stricken mother.

I hope that I will be stoic and brave in death. That fear of the “Great Beyond” will not overwhelm me. I hope that I will be dignified and brave in death. I am such a ninny in life.

Stepping Stone’s first death


Vic was the first Stepping Stone Hospice death.

I was clearing up some filing at the office when I came across Vic’s case notes. Tears ran down my cheeks when I read the observation of the Hospice nurse…

21.11.2012:- Pt gradually getting weak but stable. Pain controlled and up and about

20.12.2012:- Very weak but stable. Pain controlled

3.1.2013 Pt experiencing obstruction. Started on SD (Syringe Driver). Buscopan, Zantac, morphine over 24 hours. Prognosis short

8.1.2013 Pt seen by Dr Sue, very weak. Actively dying. Not eating or drinking. Vomiting much better. Pt still responsive even in deep sleep. Continue SD

11.1.2013 Pt terminally weak but stable on SD. Actively dying. Family up to speed with progress

18.1.2013 Pt R.I.P this am. Peaceful and comfortable at home

Vic’s suffering had been reduced to a couple of lines. A couple of words. No mention of her vomiting blood or did I forget to mention it to the nurse? No mention of her being unable to breathe because of the pain. “Pain controlled”…

The pain of Vic’s death is as fresh as it was a year, a month and 11 days ago.

We have now lived many Hospice deaths. Some have been friends, some strangers that became friends and some strangers that remained strangers. I feel the pain of the mothers whose daughters died in the In-Patient-Unit. I held them and comforted them, but I could not take their pain away. I tried to prepare them for the emptiness that would follow the funeral…the guilt, the anger, the loneliness.

I know that our Nursing Sisters are compassionate and caring. I know that I would want to die in the Unit. I know the staff will light candles to shield me from the harsh fluorescent light…. I hope that Lorraine Msini will softly sing Amazing Grace as I end my journey on earth. I have truly learnt that death is not the enemy. Living is.

I no longer cry for those who are dying. I cry for the ones who are left behind. I cry for the emptiness I have seen in mothers eyes… the raw, undiluted pain… I know that when I see them in a few months’ time they would have learnt to mask that raw, undiluted pain and emptiness in their eyes.

030114_1211_SteppingSto1.jpg 030114_1211_SteppingSto2.jpg

One death, one funeral, one dying, one day….


Friday morning, as the first rays of the new day peeped through the clouds, a brave young mother breathed her last breath.  She was surrounded by her mother, her two daughters, her ex-husband and a friend…  Seconds earlier her mom was whispering words of love to her.  Telling her it is okay to go… Friday afternoon I attended the funeral of another brave young mother who had died at Stepping Stone.  She died with her mom and Hospice volunteers next to her bed.  Earlier we had sung for her, prayed for her… Her family could not bear to see her dying and abandoned her and her mom in her final days.  This brave young woman had a beautiful smile on her lips when the undertakers arrived to remove her cancer ravished body. At the funeral pink balloons were sent into the sky

balloons

Friday evening I stood in the room of a father and husband who was dying.  The youngest son sitting slumped in a chair.  His eyes red and swollen.  At the foot end of the bed a stepson smelling of alcohol.  “Had a couple of beers tonight Pop.  At least four for you” he said. “He was a man’s man.  He came home drunk every night of his life.  He lived his life!  He provided well for my mom.  He worked and played hard.” he said with admiration in his voice… My thoughts went back to earlier that day when the dying man’s wife tried to hug him. “F…. off… F…. off” he told her.  His wife wept for him.  She stayed with him.  She will mourn for him.

In Memory of Vicky Bruce for my friend Tersia


“Hi my name is Shaun from Scotland.”

Shaun is an amazing man who lives in Scotland with his beautiful partner Dawn, two sons and two daughters.  Shaun suffers from Fibromyalgia.  Fibromyalgia robbed him from coaching soccer and his active life.  Shaun has suffered many losses but has grown in his pain to be an amazing blogger and friend.  In his own words ,”The pain took things and kept doing so. I decided to make the pain my friend and live and laugh.”

Shaun started following my blog on the 19th of January 2013.  How do I remember?  Shaun responded to my post https://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/

I remember his words.  He said that he and his partner, Dawn,  sat and hugged for an hour crying for Vic…. Shaun reached out to me in the midst of my worse pain and never abandoned me.  Many people have grown tired of my tears and sorrow and moved on to other blogs.  Shawn has stayed.  He comments, consoles and encourages.

Shawn, Dawn and Dean (their son, made this beautiful picture and link in memory of Vic.

When I read his post tears just ran down my cheeks.  Tears missing my child that had such a profound effect on people all over the world mixed with tears of gratitude for friends who are not afraid to use my child’s name…  Thank you Shaun, Dawn and Dean for taking time out of your lives to remember and honour my precious child.

I cherish our friendship!

 

Textbook death 13.1.2013


I am cautiously optimistic that we have managed to stop the bleeding ulcer and that the new medicine regime has the vomiting under control.  Vic is still running a fever, her BP is dropping and her heart rate has stabilized in the 110’s.  She appears to be more stable than she has been in a couple of weeks.IMG_8501

This morning, after I washed her and changed her pyjamas she said “Mommy, I would like to go to the supermarket today…”

“Cool, what do you want to buy?”  I asked

“Tippex (correction liquid) for the boys and Stilpain and Syndol (Tablets)” she said.

“Okay….” I said

“But I think you will have to drive Mommy… I don’t think I should be driving!” Vic said

This incredible young woman just does not know how to die!  Vic had a good breakfast this morning.  Vic has not eaten since Christmas!

The boys are fleeing home.  Jon-Daniel has spent the past day and a half at Esther and Leon’s.  Jared went to his Dad’s.  I wish I too could flee.  For the first time in my life I have come to understand why families place their dying loved ones in hospital of in a Hospice In-Patient unit.  The waiting is gruelling and heart wrenching.  The rollercoaster of dying is horrific!

I previously researched the “length of dying”.

The Journey Begins: One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

#1: Ask For Forgiveness

           #2: Offer ForgivenessTask

           #3: Offer Heartfelt ThanksTask

           #4: Offer Sentiments of Love

           #5: Say Goodbye

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes”breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred. http://dying.about.com/od/thedyingprocess/a/process.htm

Vic has experienced severe delirium or rather terminal restlessness, which is apparently a fairly common symptom in many dying patients.

Some characteristics of delirium include:

  • Impaired level of consciousness with a reduced awareness of the surrounding environment
  • Impaired short-term memory and attention span
  • Disorientation to time and place
  • Delusions and/or hallucinations (believing and/or seeing things that are not real)
  • Uncharacteristic speech – may be really loud or soft, very rapid or slow
  • Fluctuating mood swings
  • Sleep disturbances – insomnia or reversed sleep cycle
  • Abnormal activity – body movements may be increase or decreased, very fast or slow

 

Terminal Restlessness

Terminal restlessness is a particularly distressing form of delirium that may occur in dying patients. It is characterized by anguish (spiritual, emotional, or physical),

restlessness, anxiety, agitation, and cognitive failure.

Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience, but if a patient is dying with terminal restlessness, her death can be anything but comfortable and peaceful. http://dying.about.com/od/symptommanagement/a/delirium.htm

Vic is on massive dosages of medication.  She is peaceful now.

On Monday, the 14th, Jon-Daniel will receive his school colours for academic achievements.  Vicky is determined to attend the ceremony.  We will find a way of getting her to the school to witness this achievement.  I believe it is the last goal she has.

Image
Vic and her pride and joy, Jon-Daniel 4.1.2013

So despite me saying that Vic does not know how to die she is actually having a textbook death…

“Promise me Mommy…..” 13.1.2013


ImageIt has been a long day.  Vic is in a drug induced sleep.  She looks so peaceful.  Vic is not anesthetized – she wakes when she is thirsty or in pain.  She has only urinated once in 24 hours.  Her end is near.

Vic is looking angelically beautiful.  Her skin is blemish free and almost transparent.  Her hair seems to have taken on a life of its own.  Her little hands look skeleton like.  Her body is wasting away and yet she remains as beautiful as ever!

I will not sleep tonight.  Many years ago I promised Vic that she would not die alone or in a hospital.  The time is near and I must honour this promise.

Earlier tonight she woke up and I wasn’t in her room.  She had a panic attack… Danie found her trying to walk down the passage.  She was holding onto the wall and tears were running down her cheeks.  “Mommy, I am scared…”

Something has started bleeding again.  Vic vomited and there are signs of old and new blood again.  “Look Mommy, my mouth is bleeding…” she said.

Vic is deadly pale and her body has involuntary “jerking” movements.   She is decidedly unstable.

“Mommy, you have to get me to the awards evening.  I don’t care how.  Promise me Mommy!!!”  She sobbed tonight.  Tomorrow I will speak to the school and make the arrangements.  It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony.  We will find a way.

We had a strangely “normal” day today.  Jared brought his gaming computer down from the study into my TV lounge.  It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it.  Today I welcomed it.  We needed to be close to one another.  I swam twice and we ate spaghetti bolognaise.

The boys have fear in their eyes.  I have fear in my heart.

dead woman walking


My post of one year ago.  IMG_8510Reading through this post, retracing last year, I can only thank God my baby girl’s suffering is over.  Do I miss her?  With every fibre in my body.  At times I feel as if I am drowning in my grief.  At other times I am so grateful that my prayers were answered and that my little Angle now runs, free of pain, Last night I had a discussion with someone who Vic loves very dearly.  This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic.  She is actually the only person that has truly travelled this horrific journey with us.  Vic has lived through many death sentences and reprieves.  Lee has been around for at least the past 7 years of Vic’s journey.  Lee has nursed Vic back to health many times and I know she cares deeply for her friend.

I discussed the various treatment options with her.  Do I insist on having a stent fitted or do I request feeding tubes?  Or do I go with Vic’s non-intervention wish?  But if I comply how do I bring calmness and peace in Vic’s life?  Vic is no exception to the rule…As Bella (the Minister) pointed out last night: even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.

Last night I decided no sedation.  If I allow sedation, which is against her wishes, I would silence Vic’s voice, her fears and her tears.

Dr Sue says the bleeding is from the abdomen.  Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting.  Her breathing is shallow and her heart rate weak but very rapid.  Her blood pressure is dropping and her circulation is poor.  The liver is very enlarged.

We are past the point of no return.  Vicky is dying and only a miracle can save her.  There is no operation, no magic medication.  Nothing can save her.

Today I again witnessed her anguish and phenomenal will to live. 

I had a dream.  I saw Vic being escorted, in deadly silence, down a long dark passage.  Her family and friends were escorting her on her final walk into the chamber of death.  I clearly saw the fear in her eyes and I could feel her little body trembling with fear.  I heard a voice saying “Dead woman walking…”

I saw her walk into the Chamber of Death, being strapped down, and the needle being inserted into her little arm.  In my dream I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

Then I woke.

It is so cruel.  For all of us.  Why do people linger?  Why don’t we all just go to sleep and never wake up?  Or die in a car accident?  Why this suffering???  I want to go to sleep and never wake up.  Life sucks!

Vic is on a mild sedation.  She is more calm and peaceful than she has been for a couple of weeks.  She woke up this evening and had dinner…half a hamburger!!  My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food.  She has passed no urine today.

She sobbed when I told her the boys had covered their school books…”I want to do it for them!”  She wailed

“I have let down my boys.  I always cover their books…”

The boys were in her room when Vic said “Oh Jared, look!  Oupa Tienie is standing behind you…”  It really spooked the boys.  Tienie, Vic’s biological father, died on the 5th of November 1999…

Her angels have come to fetch her.

I wish Vic was married.  I wish her biological father was still alive!  I wish the decision was not mine!!!

Tomorrow I will ask that the sedation be increased.  I will silence my child’s sweet voice.  I will also silence her tears and fears.

“Dead woman walking…”

I am your child…


It is finally 2014.  I am so grateful that 2013 officially in the past.  I also get to say “My daughter died last year”

2013 was filled with tremendous loss.  Not only did I lose my child, other loved ones but I also lost myself.  2013 was filled with lessons. Painful lessons…

I have learned that grief is a solitary, unique experience. I have the learnt the difference between grief and sadness. I have learnt that grief is never-ending. I have learnt that it takes courage to grieve. I have learnt that the depth of loss depends on the depth of the relationship that has been severed.

In this process of grieving for my child I have lost me…I have become a stranger to myself. Vic and I were always “one”. I am battling to function with half of me gone. I miss the other half of my soul…

Once I was an organised person now I have become totally disorganised. My house and filing is a mess. My time management sucks! I battle to read and complete tasks. I no longer trust my judgement. I have trusted people who have scorned my love and trust. I have become forgetful. I have hidden my jewellery somewhere and for the life of me I cannot remember where. I have hidden the boys Christmas gifts – I cannot remember where. I have missed appointments, mislaid my keys…

I am preoccupied with Vic’s death. Everything that happens, I relate back to Vic’s death. In unguarded moments I relive her final moments, the vision of seeing her being loaded onto a gurney… I hear her final words echo through my mind and body “I love you Mommy…”. I relive her fear of dying, her desperation at saying her final goodbyes…

I have become impatient and intolerant. I am on the defensive. I feel isolated in my grief. I truly feel that only my WordPress friends, who have also lost a child, understands. My real world friends and family do not. How can they? They have never lost a child. They get to hold their children….They can rest their heads on their children’s heads and smell their freshly washed hair, feel their soft skins….


I have lost interest in things that used to fascinate me. I no longer enjoy decoupage, scrapbooking, painting or baking. Life has taken on a different meaning. I have new responsibilities.  Vic entrusted her beloved sons to my care and tasked me with Stepping Stone Hospice.

Because grief is primarily a personal experience it certainly takes its toll on relationships. Partners can try to understand someone else’s grief but they can never experience it or take on the burden themselves.

On the surface it appears society is accepting of this unbearable sadness and people are supportive and open to talking about it. I’ve been surprised by people’s genuine kindness and empathy as much as I’ve been repeatedly shocked & disappointed by their lack of it.

Although friends and family have been supportive, there is a mandate as for how long their unwavering support, patience, understanding, concern and empathy lasts. The truth is, the situation is so unbearably sad that it becomes incredibly emotionally draining on the other person.

The realisation that they can’t fix your sadness sets in, the frustration builds because not even they can see an end in sight, then gradually it starts to impede on the happiness in their life. They haven’t lost their child so why should they spend all their time sad about yours?

I cannot expect anyone, who did not truly witness and live the horror of seeing my beautiful child die, to understand my grief.

What frustrates and angers me most is that people, in the misguided perception that they are guiding or comforting me, insist on how I must be feeling! Who gives anyone the right to decide whether my emotions are “right” or “appropriate”. Please don’t give me advice. Don’t pretend to understand and keep your criticism to yourself. Please just be there if I invite you into my private space.

I am so tired. I am tired of living without my child, tired of trying to justify my grief, minding my words…I am tired of being hurt. I am tired of the hurt.

This morning I read the Facebook status of a brave young woman who lost her two precious daughters last year… “God has added one more day to my life. Not because I need the day but because someone else needs me. So I will get out of bed…..”

So, on the third day of 2014, I was inspired to make a decision. I will fight back against this terrible grief that is threatening to destroy me. I cannot bring back my child. I cannot make people understand, love or accept me. I will try to take back my life this year. I will start writing Vic’s book. I will focus on those who care for me; I will disregard my detractors… I will change my eating habits, exercise and sleep in a bed. I will lose my vulnerability. I will honour Vic through my life.

On the 18th of January the boys and I will do something special to celebrate their Mom’s life. Our lives will become about celebrating Vic’s life – not her death.

My brave child’s words to her boys are ringing through my head – “I am your mother not your excuse”.

I hear Vic’s voice loud and clear “I am your child – not your excuse”.

I hear you precious child. I promise to continuously remind the boys too… I miss you so much. I will honour you through my life.

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell


It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks.  The patients have controlled pain and symptoms.  Many caregivers are also looking for a dumping ground.

Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..

It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.

It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.

Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?

Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?

They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?

I read the post of an amazing woman who is suffering from congenital heart failure.  She is in so much pain.  I cried when I read her post.  http://thedrsays.org/2012/11/08/  She replied to a question whether better pain control was possible…..  “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”

I thank God that we are able to make a difference!

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell

IMG_7852

IMG-20111004-00320

rey10533_fm-1