One day less


I am glad the day is over.  I am grateful that I am one day closer to being reunited with my precious child.

Image

Tonight I fulfilled one more of Vic’s wishes.

Twenty five years ago Vic was the bridesmaid at my brother and sister-in-laws wedding.  She looked beautiful in a real grown-up pink dress…  They gave her a string of perfect little pearls which she treasured and wore on very special occasions.

After Vic died I came across the string of pearls with a little note.

The note read: “25 years ago Johan and Henda gave me these because I was their bridesmaid.  I would like to now return it to them…”

She wrote them a note telling them how much she loved them.  She told my brother that he was her hero.  She told my sister-in-law that she was amazing….

Image
Vic and her precious Uncle Johan

A lifetime of sadness


2010
13.2.2011

I am so tired of being sad.  I am so terribly tired of missing my child.  I miss our easy friendship, our laughter.

I miss laughing!

I miss being happy.

I miss looking forward to tomorrow…

The pain is just too much.  I cannot bear the longing any more.

The sad thing is that I have a lifetime of sadness ahead of me.

???????????????????????????????

 

My beautiful child


Precious angel child 2011
Precious angel child 2011
2012
2012
2010
2010
2012
2012
1991
1991
1979
1979

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

What do Alzheimer Patients Die from?


After my post https://tersiaburger.com/2013/06/16/what-is-the-difference-between-alzheimers-and-dementia/
I received a couple of emails and comments that I kept private and did not approve for publication. I decided to do this post at the time. Alzheimers is a terminal disease. Alzheimers has no survivors. The harsh truth is that there is no cure. There is no treatment.

Alzheimer’s disease is not just memory loss – Alzheimer’s kills.

• In 2010, 83,494 Americans died of Alzheimer’s disease – the 6th leading cause of death in the United States overall and the 5th leading cause of death for those aged 65 and older.

• Among 70-year-olds with Alzheimer’s, 61 percent are expected to die within a decade. Among 70-year-olds without Alzheimer’s, only 30 percent will die within a decade.

Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases, including the number one cause of death (heart disease), decreased.

Change in Number of Deaths
between 2000 and 2010


• Alzheimer’s is the only cause of death among the top 10 in America without a way to prevent it, cure it or even slow its progression.

Dementia is the second largest contributor to death among older Americans, second only to heart failure.

Alzheimer’s disease is the 6th

Today, there are no survivors of Alzheimer’s. If you do not die from it, you die with it.

• One in every three seniors dies with Alzheimer’s or another dementia.

• In 2013, an estimated 450,000 people in the United States will die with Alzheimer’s, meaning they will die after developing the disease.

• Today, over 5 million Americans are living with Alzheimer’s disease, including an estimated 200,000 under the age of 65. By 2050, up to 16 million will have the disease.

• Of Americans aged 65 and over, 1 in 9 has Alzheimer’s, and 1 in 3 people aged 85 and older has the disease.

• Another American develops Alzheimer’s disease every 68 seconds. In 2050, an American will develop the disease every 33 seconds.

Alzheimer’s takes a devastating toll not just on those with the disease – but also on their caregivers. http://www.alz.org/documents_custom/2013_facts_figures_fact_sheet.pdf

Statistics can be extremely misleading. Alzheimer’s disease cannot be definitely diagnosed until after death, when the brain can be closely examined for certain microscopic changes caused by the disease. However, through thorough testing and a “process of elimination,” doctors today can diagnose what they refer to as probable Alzheimer’s disease with almost 90% accuracy.

My father’s death certificate stated “Natural Causes“… In South Africa and most countries, the law requires that a death investigation, or autopsy, be performed when someone dies under mysterious circumstances. Autopsies are usually done if the death was caused by injury, poisoning, infectious complications, foul play (homicide), or when someone dies without an attending physician. If any one of these criteria is present, the local coroner or medical examiner will perform an autopsy to determine the cause of death.

So what do Alzheimers Patients die from?

Stroke is a major cause of death in Alzheimer’s patients

Falling. Slower reaction time, difficulty recognizing changes in the height or depth of a step, can lead to tripping and falling. Changes in balance and coordination combined with poor memory can make it difficult for a person with Alzheimer’s to get from one place to another and avoid hazardous objects at the same time. He may miss a step while looking for a door or trying to listen to someone’s conversation.

Pulmonary aspiration.  Aspiration is the entry of secretions or foreign material into the trachea and lungs.  Alzheimer’s patients forget how to eat and/or swallow and might start choking on their food. The food basically goes down the wrong pipe. A tell-tale sign is when they start coughing whilst eating. This can lead to infection and pneumonia.

Pneumonia is a major cause of death in Alzheimer’s and dementia patients. Decreased mobility and pulmonary aspiration are major causes of pneumonia…

Urinary Tract Infection (UTI). An unidentified UTI can lead to sepsis which can in turn result in organ failure…

Dad in the ambulance en-route to hospital 1

On the 9th of May 2011 my dad had a bad fall. He was taken to hospital by ambulance and admitted to ICU as he required 24/7 care.  On the 10th I met with the medical team.  My Dad appeared to be in a coma.  The Physician said that Dad had pneumonia.  The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers.  The Specialist Surgeon wanted to operate on my Dad’s aneurysm….

I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia.  There would be no operation.  The Physician agreed with my decision.

On the 14th of May I took my Dad home.  Hospice evaluated Dad and accepted him as a case.  Hospice started administering Morphine, Dormicum and Serenace subcutaneously and my beautiful dad was comfortable. My Dad battled to swallow and I was pretty distressed about his liquid and food intake.  Dad’s core body temp had dropped to 34.5 degrees C.  Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake.  On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …

Twenty three days after his first fall my Dad lost his battle against Alzheimers when he forgot how to breathe.

Did he die from Alzheimers or pneumonia? Maybe it was the fall or even the aneurysm? His death certificate read “Natural Causes” – my Dad is not an Alzheimer statistic…


A gentle death…


A gentle death, when comfort, caring, and presence are priorities, is invariable a death at home or in the peaceful surroundings of a Hospice In-Patient Unit. The opportunity to have your loved one drift away peacefully, in the comfort of their own home, in their favourite bed or in your arms, with their loved ones there at their side, is truly a gift of immeasurable worth.

Too often doctors keep treating the actively dying person aggressively. The ill person accepts the aggressive treatments doctors keep piling on them even though there is no benefit to be derived from it. At this stage of the terminally ill patient their medical care controls their lives. Pain, NG tubes, stomach tubing, IV tubing, catheters…. They remain hooked up to all sorts of beeping, pumping devices until the bitter end. We are conditioned to accept aggressive life-prolonging treatment that often destroys our family’s financial stability and quality of life.

2007

This is what the medical profession is trained to do. To heal…

It is so hard to die with all the medical technology and treatments available. People no longer die of heart attacks. People go onto preventative cholesterol and blood pressure treatments. They become old enough to develop Alzheimers…

What changes have occurred which mean we are now living longer than previous generations?

During the twentieth century, life expectancy rose dramatically amongst the world’s wealthiest populations from around 50 to over 75 years. This increase can be attributed to a number of factors including improvements in public health, nutrition and medicine. Vaccinations and antibiotics greatly reduced deaths in childhood, health and safety in manual workplaces improved and fewer people smoked. As a result of this – coupled with a decline in the fertility rate – many major industrial countries are facing an ageing population.

According to UN statistics for the period 2005 – 2010, Japan has the world’s highest life of expectancy of 82.6 years followed by Hong Kong 82.2 years and Iceland 81.8 year). The world average is 67.2 years and the UK average is 79.4 years. The average South African is expected to live to at least 60 years, an increased figure when compared with the 2005 figure of 53 years. .

During the Roman Empire, Romans had an approximate life expectancy of 22 to 25 years. In 1900, the world life expectancy was approximately 30 years, and in 1985 it was about 62 years, just five years short of today’s life expectancy.

Why are we living longer? Well in South Africa or even Africa it is because of revised HIV Anti Retro Vital policies. HIV has become a chronic illness. It is no longer a life-threatening illness. As long as you take your ARV’s you will be fine!

Improved food packaging and an increased awareness of the nutritional value of food have led to healthier lifestyles. Increased fitness levels and the reduction of smoking have also paid a major contribution in increasing life expectancy world-wide.

Adverts on buses and tubes inform us of the importance of washing our hands and covering our mouths when we cough or sneeze in order to reduce the spread of illnesses and diseases. Health and safety legislation provides strict regulations for hygiene in restaurants, hospitals and factories.

This is great but we have an increasing older population suffering from diseases like Alzheimers and Parkinson’s. I don’t believe that it is the environment or lifestyle that has led to this. Years ago people simply died younger… Our grandparents were OLD at the age of 60. Now 70 year olds have knee replacements and still play sport.

Vic was diagnosed at the age of 18 months with Osteogenesis Imperfecta. At the time it was a death sentence. I remember the professor telling us that she would not live to the age of 12.

We celebrated her 12th birthday, her 16th, 18th, 21 and 30th birthdays…We celebrated her 38th birthday. Every birthday from her 27th birthday became more difficult. The doctors and I fought to keep her alive.

Keeping her alive came at a price. Eight one (81) abdominal surgeries, literally years in hospitals, pipes and tubes in every orifice of my child’s little body, prodding and prying by strangers hands. She was stripped of her dignity. At times litres of faecal matter poured out of her intestines into bags and bottles….She had to drink revolting liquids, tablets crushed and vomit until she fractured vertebrae.

Why did we not allow her to die with dignity? Why did we fight for her life? Why did we sentence this poor child a violent life filled with suffering and pain? Because I was selfish. I drilled fighting and survival into her little brain from the age of 18 months. Vic did not know how to not fight.

The greatest gift I ever gave Vic was to respect her wishes and allow her to die. It was the most difficult thing I have ever had to do… Retreat and not fight!

July 2012

St. Francis of Assisi portrays death as “kind and gentle” in the hymn “All Creatures of our God and King”. This is certainly a minority view in our culture and faith. It speaks of a familiarity with death that seems to have been more prevalent in previous generations than it is today. Society sanitizes death. In a culture devoted to the avoidance of suffering, a culture that lives as if this life were all there is, it’s not surprising that we relegate death to the morticians. Morticians do the final honour. They wash and prepare our dead for the last time…

We avoid the sick and funerals. We relegate our dying to a noisy hospital room with beeping machines and staff on a schedule. No gentle music and candles – just harsh hospital lights and a lot of noise 24 hours a day. Hospitals are not trained in palliative care – only curing.

 When someone is dying, everyone has to wait. It takes time. All of us have a different timetable. Some wait mere hours. Some drag on for days, others, weeks. It is a lesson in patience. And it is a time when “being” edges ahead of “doing”, and just being present your loved one’s bedside is seen as the ultimate act of service.

We must allow our dying and infirm to die a gentle death. We must HEAR what they are asking! Are they ASKING for more invasive treatment or the right to die a gentle death?

 

Vic 15.1.2013
Vic 15.1.2013

Five months and 7 and a half hours ago I allowed my most precious child to die a gentle death. If I had not ignored her wishes her suffering would have ended many years ago. I have to live with this.

What is the difference between Alzheimers and Dementia?


What is the difference between Alzheimers and Dementia?In a nutshell, dementia is a symptom, and AD is the cause of the symptom. When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living…..

Too often, patients and their family members are told by their doctors that the patient has been diagnosed with “a little bit of dementia.” They leave the doctor’s visit with a feeling of relief that at least they don’t have Alzheimer’s disease (AD).

There is great confusion about the difference between “dementia” and “Alzheimer’s disease.” The confusion is felt on the part of patients, family members, the media, and even healthcare providers. This article provides information to reduce the confusion by defining and describing these two common and often poorly understood terms.

What is the difference between Alzheimer’s disease and dementia?

“Dementia” is a term that has replaced a more out-of-date word, “senility,” to refer to cognitive changes with advanced age.

Dementia includes a group of symptoms, the most prominent of which is memory difficulty with additional problems in at least one other area of cognitive functioning, including language, attention, problem solving, spatial skills, judgment, planning, or organization. These cognitive problems are a noticeable change compared to the person’s cognitive functioning earlier in life and are severe enough to get in the way of normal daily living, such as social and occupational activities.

A good analogy to the term dementia is “fever.” Fever refers to an elevated temperature, indicating that a person is sick. But it does not give any information about what is causing the sickness. In the same way, dementia means that there is something wrong with a person’s brain, but it does not provide any information about what is causing the memory or cognitive difficulties. Dementia is not a disease; it is the clinical presentation or symptoms of a disease.

There are many possible causes of dementia. Some causes are reversible, such ascertain thyroid conditions or vitamin deficiencies. If these underlying problems are identified and treated, then the dementia reverses and the person can return to normal functioning.

However, most causes of dementia are not reversible. Rather, they are degenerative diseases of the brain that get worse over time. The most common cause of dementia is AD, accounting for as many as 70-80% of all cases of dementia.

Approximately 5.3 million Americans currently live with AD. As people get older, the prevalence of AD increases, with approximately 50% of people age 85 and older having the disease.

It is important to note, however, that although AD is extremely common in later years of life, it is not part of normal aging. For that matter, dementia is not part of normal aging. If someone has dementia (due to whatever underlying cause), it represents an important problem in need of appropriate diagnosis and treatment by a well-trained healthcare provider who specializes in degenerative diseases.

In a nutshell, dementia is a symptom, and AD is the cause of the symptom.

When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living. 

Most of the time, dementia is caused by the specific brain disease, AD. However, some uncommon degenerative causes of dementia include vascular dementia (also referred to as multi-infarct dementia), frontotemporal dementia, Lewy Body disease, and chronic traumatic encephalopathy.

Contrary to what some people may think, dementia is not a less severe problem, with AD being a more severe problem. There is not a continuum with dementia on one side and AD at the extreme. Rather, there can be early or mild stages of AD, which then progress to moderate and severe stages of the disease.

One reason for the confusion about dementia and AD is that it is not possible to diagnose AD with 100% accuracy while someone is alive. Rather, AD can only truly be diagnosed after death, upon autopsy when the brain tissue is carefully examined by a specialized doctor referred to as a neuropathologist.

During life, a patient can be diagnosed with “probable AD.” This term is used by doctors and researchers to indicate that, based on the person’s symptoms, the course of the symptoms, and the results of various tests, it is very likely that the person will show pathological features of AD when the brain tissue is examined following death.

In specialty memory clinics and research programs, such as the BU ADC, the accuracy of a probable AD diagnosis can be excellent. And with the results of exciting new research, such as that being conducted at the BU ADC, the accuracy of AD diagnosis during life is getting better and better.

This contribution was made by Dr. Robert Stern, Director of the BU ADC Clinical Core.

Source BU ADC Bulletin

http://www.alzheimersreadingroom.com/2010/06/whats-difference-between-alzheimers-and.html


When tomorrow comes


My baby girl…

I wish that…


IMG_4810Someone wrote a poem for me.  I am grateful for the hand of comfort that was extended by a stranger.  This stranger happens to be ill and suffer debilitating pain.

I was so touched!  Thank you Belinda!!

13JUN2013 by http://busymindthinking.com/2013/06/13/i-wish-that

I wish that I had known you
when you struggled with your pain
but I didn’t know your situation
oblivious even to your name

I wish that I could have offered
an embrace when tears you cried
saying goodbye to your loved one
filled with sorrow when she died

I wish that things had been different
and that she didn’t have to leave
I wish most of all kind stranger
that you have comfort when you grieve

Never Alone


This was my song for Vic.  I played it for her all the time.  We spoke about the words and the meaning of the words.

Today it is 21 weeks since I have been able to touch my child, hold her, brush her hair.  I know that she is around me, but I feel so alone without her.  Vic was my dearest friend, my companion, my daughter, my soul mate.

Yes, Vic is in my heart.  Not a minute goes by that I don’t think of her, miss her…. But I really want her to be with me.  When will this pain end?  When will I come to terms with the fact that I am alone now.

Yes, I know I am surrounded by people who love me…I know they are worried about me… But nobody can fill the void that Vic’s death has left.

I feel alone even when I am surrounded by lots of people, family….

Nothing in the world could have prepared me for this thing called “grief”.  This devastating sorrow.

This weekend I will work in the garden and start preparing Vic’s Angel Garden.  I don’t want my child in a friggin garden – I want her in my home.  I want her sneaking up behind me and kissing me on the cheek.  I want to hear her voice saying “I love you Mommy”.  I want to tell her how much I love her.

I want to hear her talking to her boys.  Telling them she loves them the “mostest in the world”; reminding them to brush their teeth

I don’t want to feel this sorrow and pain.  I want to be happy again.

21 long weeks of grief


Vic's last ever outing
Vic’s last ever outing

Thinking of You with Love
We thought of you with love today,
but that is nothing new.
We thought about you yesterday,
and days before that too.
We think of you in silence,
we often speak your name.
All we have are memories,
and your picture in a frame.
Your memory is our keepsake,
with which we will never part.
God has you in His keeping,
we have you in our hearts.
A million times we`ve wanted you.
A million times we cried.
If love could only have saved you,
you never would have died.
It broke our hearts to lose you.
But you didn`t go alone.
For a part of us went with you…
the day God called you Home.
~Author Unknown

“Amare et fovere” to love and cherish…


“Amare et fovere” to love and cherish….

“Amare et fovere” to love and cherish…


3425.LoveWords

I have never consciously given thought to the difference between the words “love” and “cherish.”

Today I did.

The definition of love is as follows:

            Love/ləv/
Noun
An intense feeling of deep affection: “their love for their country”.
Verb
Feel a deep romantic or sexual attachment to (someone): “do you love me?”.
Synonyms
noun. affection – fondness – darling – passion
verb. like – be fond of – fancy – adore

The definition of cher•ish is as follows:
/ˈCHeriSH/
Verb
Protect and care for (someone) lovingly: “he cherished me in his heart”.
Hold (something) dear.

Synonyms
nurse – nourish – foster

The Latin phrase for Cherish is Alo (alui Altum), Alo (alui Altum) is defined as: nourish, cherish, support, sustain, maintain, keep.

To cherish someone means to treat them with affection and tenderness, to hold them dear – close to our hearts. To me “cherish” implies gentleness, tenderness, respect and friendship; purity of emotion….

We feel cherished when we feel precious….Feelings of being cherished takes me back to my childhood. When my parents loved me unconditionally and I was ensconced in this amazing feeling of being treasured, protected, cared for….safe. 

We all crave to be cherished by our friends, family and loved ones. When we are cherished we have a warm, “safe” feeling within the relationship.

It explained to me why I felt safe in some friendships… There are relationships where I feel loved and then there are relationships where I feel cherished. I am tough. A friend once said I was as strong as the rock of Gibraltar. Little did he know how vulnerable I was at that stage of my life….
I suppose we feel loved by the ones who do not necessarily look out for us and protect us and cherished by those who go the extra mile and have our backs.

Love is easy. We love family because we are bound by blood, DNA of the heart, memories, intellectual and physical attraction. We love our car, our homes, our pets… We cherish our children, some friends, our memories…

Yet there are many people who will not allow others to cherish them —for example, someone who exhausts herself helping others, but when she needs help herself quickly says, “No thank you, I’m fine.”

The irony is that often these people experience a kind of elemental disbelief when they feel uncherished and think someone has let them down. “Oh no! It can’t be! Why am I not loved?” A sense of loss, a basic anxiety, grips them. 

I know that I will move the world for my loved ones. Yet I find it hard to allow people close enough to me, to “cherish” me…I am a do-er. I get embarrassed when people “do” things for me…

I recall once Lani wanted to give me a hand massage…I was too embarrassed to allow it…. I stayed busy to avoid the intimacy of being cherished by someone I love dearly…

There is a difference between cherish and love.  I find it hard to allow people to cherish me because that means I have to trust them with my heart and soul.  Love is less intimidating…

I am grateful that I am able to love and cherish.  I am grateful that people have patiently hacked away at my defences and love and cherish me…

Today I miss my precious child whom I love and cherish and who loved and cherished me….

I am a Shidu… I am a Shidu…


When a parent dies, you lose your past; when a child dies, you lose your future.

 

http://www.sinous.com
http://www.sinous.com

There are more than 100 million single (only) children in China, Xinhua, the state-run news agency, reported in February. That translates into more than 200 million parents of single children.

Until 2012, there were “at least” one million families in China that had lost their only child, Xinhua wrote in a separate report carried by the Jinghua Times. About 76,000 families are added to the sad roster each year, it said.

There is a special term for the parents that has lost their only child….”shidu” family.

In the rest of the world the average woman gives birth to 2.75 children.

I gave birth to one.  My only birth child has died. I am a “shidu”

Today I am (again) desperately missing my child.  I feel as if I have lost my future.  I only have my past.  But I know that is not true.  I have Vic’s two amazing son’s to care for; 4 precious stepchildren; 9 step grandchildren that I love like my own…

Many years ago when Danie proposed I asked God for a clear sign.  I prayed so hard so direction… I explained to God that I was so scared of making a mistake that would affect so many people’s lives.  I asked for a clear scripture!

I opened my Bible and the scripture that jumped up at me was Ecclesiastes 4:9-12 “9 Two are better than one, because they have a good reward for their toil. 10 For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! 11 Again, if two lie together, they keep warm, but how can one keep warm alone? 12 And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.”

I immediately went back on my knees and prayed again.  “God, thank you for the scripture you gave me but what about all the children?”

I opened my Bible and it fell open on page 793 of the Old Testament.  Isaiah 54:1-17 “Sing, O barren one, who did not bear; break forth into singing and cry aloud, you who have not been in labor! For the children of the desolate one will be more than the children of her who is married,” says the Lord. “Enlarge the place of your tent, and let the curtains of your habitations be stretched out; do not hold back; lengthen your cords and strengthen your stakes. For you will spread abroad to the right and to the left, and your offspring will possess the nations and will people the desolate cities. “Fear not, for you will not be ashamed; be not confounded, for you will not be disgraced; for you will forget the shame of your youth, and the reproach of your widowhood you will remember no more. “

My answer was a prophesy…  Not only is my life filled with these precious people but I now also have Izak, Reuben, Nonthanthle and Shekinah to love.  I am blessed.

Does this however fill the void that Vic’s death has left?

I feel ungrateful for being in this well of despair whilst I am not alone.  I am motherless not childless.  The fact remains that I desperately miss my child.  My life is empty.  I have lost my future.

I am a Shidu

https://tersiaburger.com/2012/10/05/danie-the-wind-beneath-my-wings/

 

 

Impossible Love


 

 Nelson Mandela: Is it time for South Africa to let him go?

By Pumza FihlaniBBC News, Johannesburg

Many people still see Nelson Mandela as the antidote to current social ills.

Photo Credit: http://www.bbc.co.uk/news/world-africa-22845268

Photo Credit: http://www.bbc.co.uk/news/world-africa-22845268

So deep is the affection in South Africa for the country’s first black President, Nelson Mandela, that the thought of his passing seems incomprehensible.

But deep down the millions who adore him know that that day is inevitable.

Following a string of health scares in the recent past, South Africans are beginning to come to terms with the mortality of their 94-year-old icon.

Still, this in an uncomfortable topic here.

Somadoda Fikeni, head of the South African Heritage Resources Agency (Sahra), puts it this way: “We no longer have an icon on his level, not only here in South Africa but in the world.

“People see him as the antidote to the current social ills we are faced with. That is why people are still holding on to him.”

According to Isintu – traditional South African culture – the very sick do not die unless the family ‘releases’ them spiritually”

South Africans see Mr Mandela as the glue that is holding the country together and believe that the social challenges of crime, poverty, corruption and unemployment can only be overcome if they have him to inspire the country’s leaders to greatness.

It might be too high an aspiration to place on one individual, but in the eyes of many here, Mr Mandela is no mere individual.

Nevertheless, for the first time it seems that the tone surrounding Mr Mandela’s increasingly frail health is beginning to change.

The Sunday Times newspaper at the weekend led with the headline: “It’s time to let him go.”

A blunt phrase bound to cause discomfort for the family and indeed many others in South Africa.

 

 

The usual response to Nelson Mandela’s illnesses is a call to prayer

But these were not the words of someone who is nonchalant about what Mr Mandela represents to this country. These were the words of a dear friend and fellow Robben Island prisoner, Andrew Mlangeni, upon hearing that Mr Mandela had again been admitted to hospital.

“The family must release him so that God may have his own way with him… once the family releases him, the people of South Africa will follow,” Mr Mlangeni was quoted as saying.

Many are fully aware of Mr Mandela’s poor health and advanced age, but almost in the same breath they say they want him to live for many more years.

It’s an extraordinary relationship, an impossible love.

It may be that squabbling within his family is troubling him and that needs to be addressed while he is still here. He may not be well received on the other side until these issues have been resolved”

Somadoda FikeniSouth African Heritage Resources Agency

At dinner tables South Africans talk about the Nobel Laureate’s need to rest but none utter the phrase that could change it all: “Siyakukhulula tata” – Xhosa for “We release you, father”.

According to Isintu – traditional South African culture – the very sick do not die unless the family “releases” them spiritually – only then will they be at peace in surrendering to death.

Culturally, this practice is seen as “permission” to die and this permission needs to be given by the family; it is reassurance from loved ones that they will be fine.

Mr Fikeni says that the other reason a person fights death is because they have unfinished business.

“It may be that squabbling within his family is troubling him and that needs to be addressed while he is still here. He may not be well received on the other side until these issues have been resolved.”

This may be a reference to a recent court case which has seen an attempt by Mr Mandela’s daughters, Makaziwe and Zenani, to oust three of his aides from companies linked to him.

It is not easy to get people to speak about Mr Mandela’s passing.

The BBC contacted three other cultural experts who refused to comment for fear of a backlash from the family or indeed fellow South Africans.

The press has been less fearful. Local and international media have reported on his four hospital visits since late last year. They camp outside hospitals for days eager to get an update on his health.

During the periods of his illness, the common theme in headlines is to call on South Africans to pray for his speedy recovery – further testimony that many are not ready to lose him.

But Mr Mandela’s visits to hospital have become lengthier and his care more specialised.

President Jacob Zuma and a number of top officials from the governing African National Congress visited him at his Houghton home in Johannesburg shortly after his last release in April. Mr Mandela was seen sitting on a beige couch with a blanket on his legs.

He had a blank expression on his face. On his cheeks, the marks of where a hospital oxygen mask had been. The images were widely criticised.

This time around all we know is that he is in intensive care, and he is being treated for a recurring lung infection.

The presidency is juggling the need to inform South Africans and the world, while respecting the family’s request for privacy. It is an unenviable task.

“The best way to honour him will be to carry on his values of tolerance and conversation”

Anyone who has loved a father or grandfather can attest to wanting that person to live forever – people here see Mr Mandela as the greatest father there ever was.

He after all averted civil war, many South Africans believe, when he called on black and white people to reconcile amid marked racial tension, a time when South Africa seemed on the brink of collapse, destined to descend into anarchy like so many fellow African countries.

But the country still faces division; racism rears its head every so often, the ANC is more divided now than it has ever been.

A culture of tribalism is slowly creeping into the fibre of the new South Africa – some experts say this is due to a lack of firm leadership from the liberation movement.

These divisions are forcing South Africans to take a closer look at Nelson Mandela’s dream of the “rainbow nation” and ask whether it is still alive – and whether it will live on after him.

Some still believe South Africa can surmount its challenges.

“It’s a shared idea that what we have now is better than what he had in the past. All we need to do is hold on to this shared vision of a better South Africa,” says political analyst, Ralph Mathekga.

Fears that Mr Mandela’s passing will lead to anarchy are “unrealistic”, he says, adding that South Africans need to focus on how they can continue the legacy.

“The best way to honour him will be to carry on his values of tolerance and conversation,” says Mr Mathekga.