Posted in A Mother's Grief, Bereavement, Death, Death of a child, Grief, Hospice, Osteogenesis Imperfecta, Palliative Care, Terminal Illness, Vicky Bruce

Deathbed promises kept and broken


During the month of August I again stood next to a deathbed. It was next to the deathbed of one of our patients.

I was touched by the absolute outpouring of love from the family to the patient. I have seen it at almost every single deathbed I have stood next to…. The second death I ever witnessed was weeks before my mother-in-law died. My Mother-in-Law was in a hospital. The lady opposite her was dying and moved into a dying-room. I was allowed to sit with her. I prayed for her and tried to comfort her. I spoke to her almost non-stop for 11 hours. In the evening her husband came to visit. He was not told that his wife was dying by the hospital staff…

“What is wrong with my wife?” he asked

“She is very ill” I said

“When will she come home?” she asked.

“You must speak to the staff” I said

“They say nothing” he said

“Your wife is dying… I am so sorry.”

I know it was not my place to tell this poor man that his wife was dying. But, if I hadn’t he would have had to live with the fact that hours after visiting hours were over, she died… He got to say goodbye.

I sat with the woman until she died. She was petrified of death. I could see that they were indigent people. Poorer than poor.

She knew she was dying. She was desperately trying to stay alive. Trying to console and calm her I asked her whether she was scared. She nodded. I asked her whether she was worried about something. Again she nodded. I asked her whether she was worried about her children. She again nodded.

In the heat of the moment I promised her I would help her husband look after her children… I made a deathbed promise.

The next day I tried to get her family’s contact details from the hospital. They refused to give it to me.

I have had to live with the fact that I promised a dying woman that I would take care of her children and that I broke that promise.

Extravagant promises to dying loved ones often pose an ethical conflict, defined as when opposing acts each fulfil an ethical value, but neither can achieve both.  The situation also arises when one is tempted to lie to dying friends and loved ones out of kindness. A mother and daughter are involved in a fatal car accident; the daughter is dead, the mother is dying. “Is our daughter all right?” the fading mother asks her husband.

In such a case, it is reasonable and ethical to conclude that the kind answer, “Yes,” is more ethical than the truthful answer, “No.” A promise to a dying loved one may be an exception to the usual rule that it is unethical to make a promise one cannot or will not fulfil.

Often ridiculous and selfish promises are coerced from the loved ones standing next to a death bed. When we stand there we promise freely…we want to give the dying person that final peace of mind.

A classic example of a deathbed promise made in good faith is depicted in the black comedy “Where’s Poppa?” In this movie, the son promises his father, he would never place his senile mother in a home… At the time it was a reasonable promise but becomes increasingly more difficult to keep as the mother becomes more demented and senile. The vicious woman destroys every aspect of his life….

“Promises openly and freely made on the initiative of a dying individual’s loved one are true commitments. Promises coerced by a dying friend or relative and made out of kindness or guilt, on the other hand, should be re-evaluated at a less emotion-charged time. Both varieties of death-bed promises, however, create ethical obligations. They just can’t be as strong as the obligations created by promises to the living.”

I have stuck to every promise I made Vic. Many of the promises were heartbreakingly difficult to keep. Others were easy.

On Wednesday the 9th of October 2013 we had the official opening of Stepping Stone Hospice’s building.

A captive audience
A captive audience

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It is one promise I was able to keep.

The entrance to Stepping Stone Hospice being blessed
The entrance to Stepping Stone Hospice being blessed

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The boys outside the Vicky Bruce Dignity Room
The boys outside the Vicky Bruce Dignity Room
Posted in A Mother's Grief, Angels, Bereavement, Death, Death of a child, Grief, Palliative Care, Terminal Illness, Vicky Bruce

Vic, embedded in my heart and a building’s cement


Today the concrete foundation was laid of our Stepping Stone Hospice’s building.

26.6.2013
26.6.2013

It was a “moment” when I saw the concrete being poured.  The builder, bless his soul, ordered extra cement and we now have a veranda area as well as a concrete path where our patients will leave our building for the last time… We also received a donation of a oxygenator.

I asked the builder if I could put a photo of Vic’s into the foundation of the building.  He thought it was a wonderful idea.  I phoned the boys, and they brought me their favorite photos of Vic and I.  We placed it in plastic sleeves and embedded it in the foundation.  It was covered with concrete.

Vic has been immortalised in the foundation of Stepping Stone Hospice.

Perhaps because Vic was cremated, it was an emotional moment for all of us seeing her being “buried” in cement.  I know it was purely symbolic, but it was sad.

The boys and I huddled together and wept.

Stepping Stone foundation
Stepping Stone foundation
Posted in Death, Hospice, Palliative Care, Terminal Illness

Groundbreaking week…


Clearing the site starts...
Clearing the site starts…

It was a ground breaking week for Stepping Stone Hospice .  

Ground Breaking week
Ground Breaking week

Excitement ran high when construction started!  A group of giggling middle-aged women invaded the site for a photo shoot with our local newspaper.  The atmosphere on site was one filled with humble gratitude, excitement, loving anticipation….

I know that Vic was looking down from Heaven, smiling… 

Steering Committee and Construction Team on site
Steering Committee and Construction Team on site

We appointed a PR person, received a flooring donation, our sign boards arrived, we received a donation of hospital beds and equipment!  The greatest donation of this week had to however be when a young mother, suffering from Motor Neutron Disease donated a motorised wheelchair… It never even hit the office.  It went from her home to the home of a patient who is in the advanced stages of MND.  A new lease on life was given…

What a beautiful world we live in.  

goodbye

Posted in A Mother's Grief, Angels, Chronic Pain, Death, Family, Family Life, Grief, Hospice, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

“This is to have succeeded”


Vic often said “I must be such a disappointment to you.  I have done nothing with my life!”

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This morning I read these beautiful words and so wished I could have shared it with Vic.

“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley

To laugh often and love much – That Vic did.  She always had a smile on her precious face.  Even when she was in dreadful pain she would try to smile.  When she was in a lot of pain her laugh was shrill.  Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.

“That is terrible Mommy.  Why?”

I felt like hitting my head against a wall!  What did the child think?  In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag.  It was too big and positioned very low down.

“I worry about you every second of the day baby.  I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything…  I worry about your wound.  I worry about your pain control….”

“Mommy, that is so sad.  At least once a week the boys and I laugh so much that my tummy hurts from it…”

Vic in 2007
Vic in 2007

Vic loved unconditionally and with every fibre of her body.  She gave everything!  She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys.  She LIVED love.

Her last words ever were “I love you Mommy”

… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respect and admire Vic for her courage, tenacity…  We called Vic the “baby whisperer”.  Children loved her.  She loved children.  Her only ambition as a toddler and teenager was to be a Mommy.  She loved her sons beyond comprehension…

The Baby Whisperer
The Baby Whisperer

…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life.  People got tired of waiting for her to die.  “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable.  False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.

….. to appreciate beauty; to find the best in others;  My precious child was so naïve.  She refused to see the bad in people!  The only time she got irritated and miserable was in hospital.  She always found the good in people.  She did not speak badly of people.  When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge.  Vic taught me unconditional love, forgiveness and tolerance.  Vic brought out the best in me and the most other people.

…..to give of one’s self; Vic was a people pleaser.  She would turn down MY bed!!!!  She made sacrifices for each and every person in her life.  Even in death she worried about other dying people who were less privileged than she was.  I promised her 2 am one morning that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.

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…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place.  Her sons are monuments of the person she was; her dream of a Hospice has been realized.

The boys taking Vic for a walk at the Donald Gordo

……to have played and laughed with enthusiasm and sung with exultation;  With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.

Vic loving World Cup 2010
Vic loving World Cup 2010

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……to know even one life has breathed easier because you have lived     Vic’s legacy will live on through her sons and Stepping Stone Hospice.  Long after I have died, people will continue to benefit from Vic’s dreams and goodness.

—this is to have succeeded.”  My angel child – you succeeded!  You succeeded in life and with living.  You made the world a beautiful place filled with goodness and hope.  I am so proud of you.  You lived life to the full.  You made a difference!  You lived a greater and more successful life than most people.  You have put the world to shame.  You are my hero!

Vic and her monuments
Vic and her monuments

https://tersiaburger.com/2012/10/16/and-the-winner-is/

https://tersiaburger.com/2012/06/09/9-6-2012/

Posted in A Mother's Grief, Angels, Death, Death of a child, Family, Family Life, Hospice, Osteogenesis Imperfecta, Palliative Care, Terminal Illness, Vicky Bruce

Caregiver Isolation


Alberton-20120625-00559It happened without warning…

In 2002 I was on top of the world.  My career was at an all-time high, financially we were secure and I LOVED my job.  I was able to work long hours and spend time with my friends.  I was on 9 Church Committee’s and very involved with community work in the poor areas.

Then it happened…Vic had her blotched back surgery and our lives changed forever.  I spent 22 days in the waiting room outside the Intensive Care Unit.  My life ground to a halt.

We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings.  I felt over-whelmed and out of control.  Doctors and nurses prodding and touching my child.  To them she was a commodity.  But, to me, she was my life.

Slowly but surely my life changed…  I became fixated with finding a “solution” to my child’s devastating health problems.  After all, I am a Baby Boomer.  We don’t accept bad situations.  We find solutions.  We sort out problems.  I refused to accept the doctors’ prognosis as I did when she was a little girl.  I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler…  I refused to accept it.  Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys.  The ventilators were turned off and Vic continued to breathe, live….

We went from one doctor to the next.  I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism.  I worked longer hours in-between surgeries.  Quite frankly, work became a crutch.  I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…

My fear, despair and pain became my constant companion.  My computer and the internet my trusted friend…

One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”

“Of course I love my family!  Why are you asking such a question?” I replied

“Because you are never home….”

I had to sit down and reassess my life.  Quite honestly the financial implications of keeping Vic alive and care for her was daunting.  I feared going home because I could not handle Vic’s pain….  I knew in my heart there was no cure.  The mere thought of Vic suffering for endless years were terrifying!  I could not bear to see the fear and helpless desperation in the boys’ eyes.

So contrary to what I have written before, and comments that have been left, I have not been the best mother.   There was a time that I ran away.  I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!”  I felt lost in the in-balance of my life.  No matter where I turned it was work and responsibility!

In 2009 my Dad came to live with us.  He suffered from Alzheimer’s.

Dad and I
Dad and I

Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.

I started sleeping downstairs many years ago when Vic was so ill.  I was scared I would not hear her if I slept upstairs.  I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa.  This continued when my Dad lived with us.  I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching!  The intercom was the 911 call.

I slowly and inextricably slipped into depression.  My entire life was dominated by my fears for my child.  The caregiving demands steadily increased as the years passed and the situation deteriorated.  It became a dark and difficult period for the entire family.  We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday.  Every activity demanded a great deal of planning.  We became more and more isolated as a family.

It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home.  Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.

My salvation was cyberspace.  I joined an Alzheimer support group, https://www.caring.com.  Without the support group I would never had coped with my dad’s descend into Alzheimer’s.  A year ago I started blogging on Vic’s final journey.  I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words.   I receive advice, support and information from a loving cyber-community.

I however realize that I need re-join life.  There are days that I just want to stay on my sofa with a blanket pulled over my head.  I fear that if I sleep in a bed I will never get out of it.  In the TV lounge there is always people.  Whether it be the boys, Danie or the housemaids.

Today I had tea with an old friend.  For almost 4 years I have not been able to see her.  She has a young son that I have never seen.  Our friendship was reduced to the odd phone call or text message.  Often she would phone and there would be a crisis with Vic.  I would say “I will phone you back” and never get around to it.  I isolated myself from friends.  I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.

My life centred round my sick child and family.

Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed.  I have had tea with my new Magnolia friends and Christelle.  We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister!  I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house.  I have seen a psychiatrist and take antidepressants.  We have started Stepping Stone Hospice.

How amazing is this?

If the truth be known it is not amazing at all.  I am dying on the inside.  I cry uncontrollably – mostly when everyone has gone to bed.  If the boys were not living with us it would have been so different.  I KNOW I would still have been in bed.   I am consumed with longing for my child.  Last night I replayed 100’s of voicemail messages that Vic had left me….

“Love you Mommy…”

“Love you Baby Girl”

Posted in Death, Death of a child, Hospice, Palliative Care, Terminal Illness, Vicky Bruce

Together We Walk the Stepping Stones – by Barb Williams


stepping_stones_of_memory_by_nwwes-d3krg59Stepping Stone Hospice is the name of the Hospice that we started as a tribute to Vic’s journey.  It is the only thing that makes sense – why else would my child have suffered so long and hard?

I am busy with the website for Stepping Stone Hospice and accidentally came across this beautiful poem…I share it with you.

If any of you talented bloggers out there have appropriate poetry that we could publish on our website please send it to me.  We will link it back to you.

The Menu will contain a Grieving and Bereavement Folder and I would like a “Poems of Love and Compassion” Section.

Please help.

Together We Walk the Stepping Stones – by Barb Williams

Come, take my hand, the road is long.
We must travel by stepping stones.
No, you’re not alone. I’ve been there.
Don’t fear the darkness. I’ll be with you.

We must take one step at a time.
But remember, we may have to stop awhile.
It’s a long way to the other side
And there are many obstacles.

We have many stones to cross.
Some are bigger than others.
Shock, denial, and anger to start.
Then comes guilt, despair, and loneliness.

It’s a hard road to travel, but it must be done.
It’s the only way to reach the other side.

Come, slip your hand in mind.
What? Oh, yes, it’s strong.
I’ve held so many hands like yours.
Yes, mine was once small and weak like yours.

Once, you see, I had to take someone’s hand
In order to take the first step.
Oops! You’ve stumbled. Go ahead and cry.
Don’t be ashamed. I understand.

Let’s wait here awhile so that you can get your breath.
When you’re stronger, we’ll go on, one step at a time.
There’s no need to hurry.

Say, it’s nice to hear you laugh.
Yes, I agree, the memories you shared are good.
Look, we’re halfway there now.

I can see the other side.
It looks so warm and sunny.
On, have you noticed? We’re nearing the last stone
And you’re standing alone.
And look, your hand, you’ve let go of mine.
We’ve reached the other side.

But wait, look back, someone is standing there.
They are alone and want to cross the stepping stones.
I’d better go. They need my help.
What? Are you sure?
Why, yes, go ahead. I’ll wait.

You know the way.
You’ve been there.
Yes, I agree. It’s your turn, my friend . . .
To help someone else cross the stepping stones.

Posted in Angels, Death, Death of a child, Family, Family Life, Grief, Osteogenesis Imperfecta, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

Stepping Stone Hospice


stepping_stones_of_memory_by_nwwes-d3krg59On the 1st of January 2013 we started Stepping Stone Hospice & Care Services in my suburb.  We operated from my home with one highly skilled Palliative Care Nurse, a Palliative Care Doctor,  a network of caregivers, a four women steering committee,  one car and a lot of enthusiasm and energy.

Vic was our first death.  Stepping Stone was borne out of her pain and her desire to “pass it (Hospice Care) forward”.  Many years ago, I promised her that I would start a Hospice in her honour…. It would be her legacy.  When Siza looked after my Dad in his final days we “connected”.  She is a beautiful, compassionate, efficient person.  She has a gentle yet confidence inspiring disposition, and she delivered on her promise to Vic on day one.  When she came to set up the subcutaneous driver the first time she promised Vic that she would take care of her pain needs.  This she did to the best of her ability.

I blogged on this new lease of life Hospice gave Vic.  We have at least two and a half wonderful months where Vic was able to “live”… go out for milkshakes with her boys.

We have been so blessed.  Six weeks ago we were able to move into an office on the premises of an amazing charity organization called Amcare.  We now have a donated desk, laptop and printer.  We have quite a lot of donated equipment such as wheelchairs, walkers etc.  We only have one dilapidated chair but our work is in people’s homes not in offices!

People have generously donated second-hand clothes which more than provides for the pain medication that is needed to treat our indigent patients.  Through generous donations by a couple of people we have managed to pay Siza’s salary, fuel and cell phone costs.  We have been able to buy a software program that will allow us to invoice the medical aids, of patients, that have terminal care cover.

Today Trix received a phone call from a lady, our of our second-hand clothing benefactors, who asked whether we could meet with her brother….he wants to donate a building to Stepping Stone Hospice!!

Our God is a faithful God.  We have not advertised nor marketed aggressively at all.

I am speechless with the wonder of people’s generosity and love!

Please pray that this will indeed happen!

Vic, your legacy will live on.  Thousands of people will be able to live and die with dignity because you had a dream.  I love you Angel Child.  I know you are our guardian angel!!

HOSPICE BLOGS:

https://tersiaburger.com/2013/01/03/tomorrow-may-be-better-than-yesterday/

https://tersiaburger.com/2012/12/18/the-right-to-live-with-dignity/

https://tersiaburger.com/2012/11/07/life-is-good-life-is-great/

https://tersiaburger.com/2012/10/15/remission-15-10-2012/

https://tersiaburger.com/2012/10/23/and-hospice-says-go/

https://tersiaburger.com/2012/09/24/mommy-i-thought-i-had-more-time/