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.

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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.

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Vic’s Mother’s Day roses


Iceberg Roses

Iceberg Roses

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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

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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…

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Vic’s message of love – white roses turning pink

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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….

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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.

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