2011 – Vic at Chaka’s 2013 – Vic’s place is empty 1
Vic back at Chaka’s Rock – 2013
Month: June 2013
A Mother’s Love for her Sons
I have been researching the effect of a mother’s illness on her children. The boys are two beautiful, well-adjusted, honest and compassionate young men. Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life. At the tender age of thirteen Jared was cooking for the family… This must certainly have an effect on how the boys perceive relationships with people.
Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their
parents. They in effect become 
parents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.
“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.” The boys, especially Jared, falls into this category 100%. When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode, At the time I thought it to be extremely unhealthy that he already has this caregiving character trait. He used to always make the tea and offer to do so much around the house and for his Mom.
I have put a stop to this. I pray it is not too late for the boys to adjust to a “normal” household…
It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother. Vic has raised her sons to be respectful.
“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”
Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday. When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again. This is what Vic does.
Before Jared was wheeled into theatre he whispered into his mom’s ear. She took his hand and said “I promise”.
Vic, drip in hand, walking with Jared to theater!
The surgeon said the operation would last two hours. Vic dutifully went back to bed and rested. One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son. I begged her to at least sit on the chair, but she refused. “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”
It took a superhuman effort, but Vic’s love for her son drove her to keep her word. It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own. As Vic did. As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.
The vicious cycle of anger truly rose to the occasions on Wednesday. I got angry with Vic because she was not putting her health first! I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother. I want to wrap her in cotton so she would be spared that extra day…
Yesterday Vic said she doubted whether she would see the end of the year. She is however adamant to be at Jared’s confirmation…one more goal…
Go Girl!!!
Well, Vic is home. I am so grateful. She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!
Chaka’s Rock and bittersweet memories….
Chaka’s Rock is a quaint coastal town on the North Coast of Kwa Zulu Natal.
We have come to Chaka’s for the past 22 years. Vic loved Chaka’s with a passion and always said that she started missing Chaka’s from the second we packed up until we set foot here the following year.
Through every possible circumstance Vic made her way to Chaka’s – with the exception of 2012. Last year she said “Mommy, I am not going to make it to Chaka’s this year…”
In 2007 Vic had 18 abdominal surgeries. She developed septicaemia and contracted every superbug in the book. She was on life support on more than one occasion. Her kidneys and lungs failed. Vic developed an intestinal fistula. It was a high output fistula and she lost up to 7 litres of fecal matter through the fistula daily. The poor poppet walked around with a machine that acted as a “catchment” for the fecal matter. Vic was on TPN (Total Parental Nutrition) and not allowed to eat anything. Her stomach had a gaping wound with fecal matter pouring out of a hole in the intestine.
Vic spent the majority of the year in hospital and reached a stage where she appeared to be like a “lamb being led to slaughter”. It was such a concern to us that she appeared to have lost her will to live.
It was such a tough decision to make whether we should discharge Vic from hospital to make the trip or not. The doctors had different views on whether we should go or not. Two of them felt it would be emotionally uplifting for her to go and a third thought we were “absolutely nuts!” I am so grateful that we decided to go ahead with our annual pilgrimage, as Vic was able to spend such precious time with us. Even the bad weather worked in our favour and we spend wonderful days playing Bingo and Trivial Pursuit.
It was extremely difficult to manage Vic’s health in accommodation other than a hospital. Changing the TPN was a sterile procedure.
On Friday morning, the 29th of June 2007, Vic collapsed was admitted to the ICU at the Albert Luthuli Hospital in Chaka’s Rock. Vic was transferred back to the Donald Gordon Hospital by ambulance on the Saturday afternoon.
In a “Get better soon” card that her boys wrote her after our little holiday they thanked her for the most wonderful holiday ever! Certainly, we had had “better” holidays in our lives but the time that we spent together was so precious.
Vic was only released from the Intensive Care Unit of the Donald Gordon Hospital on the 23rd of July 2007.
In 2010 I only spent a weekend in Chaka’s with Vic and the boys as I had to fly to the Middle East on business. . Lee drove the boys back and Vic flew home. This is an excerpt out of an email Vic sent me…
“Hi Mommy, boys are great… We had such a great evening last and day today… Jared had Tyron over to visit. We all miss Mommy already!!!! We really hope it goes well there!!! We are all holding thumbs and saying big prayers… Battling with the authorisation for the pain Infusion still. I think I broke another vertebrae on the flight back from Chaka’s. We had a bumpy landing and I am battling to breathe from the pain… I think it’s two above the last fracture. Can’t believe how much I miss Mommy already. We are all trying to think up a name for Gramps’ new puppy… J-D is still sulking, because I won’t carry her around like Gramp’s does. Can you believe it? Jared said that when we were all in Chaka’s, she didn’t need legs as Gramps’ just carries her everywhere. And I don’t know what she was eating at Moms’ but I know it wasn’t her food, she refuses to eat it, she was so spoilt Jared reckons she lived on sweets and Gramps’ food… I wish we were all still in Chaka’s, it was really great to spend the time with Mommy…
Vic in 2012…well, that is a different post….
I Grieve – Peter Gabriel
it was only one hour ago
it was all so different then
there’s nothing yet has really sunk in
looks like it always did
this flesh and bone
it’s just the way that you would tied in
now there’s no-one home
i grieve for you
you leave me
‘so hard to move on
still loving what’s gone
they say life carries on
carries on and on and on and on
the news that truly shocks is the empty empty page
while the final rattle rocks its empty empty cage
and i can’t handle this
i grieve for you
you leave me
let it out and move on
missing what’s gone
they say life carries on
they say life carries on and on and on
life carries on
in the people i meet
in everyone that’s out on the street
in all the dogs and cats
in the flies and rats
in the rot and the rust
in the ashes and the dust
life carries on and on and on and on
life carries on and on and on
it’s just the car that we ride in
a home we reside in
the face that we hide in
the way we are tied in
and life carries on and on and on and on
life carries on and on and on
did I dream this belief?
or did i believe this dream?
now i can find relief
i grieve
Mandela and the wrath of his forefathers….
An evening visit to the designated gravesite of Nelson Mandela, prayers for forgiveness to the ancestral forefathers and the tribal elders travelling to Pretoria to be with South Africa’s greatest hero is just some of the drama surrounding Nelson Mandela’s imminent passing.
The gravesite is situated about 500 metres from Mandela’s Qunu residence and is reserved for the Mandela family.
It has been reported that elders in the Mandela family visited the family gravesite in Qunu, on Tuesday evening, to plead for forgiveness from their ancestors for exhuming the bodies of family members in 2011 by Mandla – the favourite grandson. It is tribal custom that gravesites are either visited early in the morning or late in the afternoon.
The elders are furious with former president Nelson Mandela’s grandson Mandla for digging up the remains of his father Makgatho and his father’s two siblings, Makaziwe and Thembekile, and moving them to Mandela’s birthplace Mvezo. The elders have advised the family that “the Mandelas are being punished through making their beloved son (Nelson Mandela) suffer in hospital where he remains in great pain and anguish”. The elders visited the gravesite to plead for their ancestral forefather’s forgiveness and to seek advice as what to do during this difficult time.
The elders in the Mandela family have attributed Mandela’s ill health and constant hospitalization for a lung infection to the “wrath of the ancestors”.
The “wrath” was caused by the fact that Mandla Mandela, the Mvezo chief, removed the remains without consulting anyone.
Elders with knowledge of AbaThembu traditions and customs told the family that this had angered the forefathers which resulted in a curse being put on the Mandela family, by the ancestors.
City Press reported that after the meeting it was decided that elders – men only – should visit the gravesite to appeal to the ancestors to spare Mandela from suffering. Mandla did not go to the family gravesite where the elders had gone to plead with the ancestors.
It was decided at the gravesite that a delegation would visit Mandela in hospital.
“I will be going to see Tata (Father) in hospital. He cannot be alone at this hour of need. He needs AbaThembu and his family next to him,” Mtirara, an elder, said.
South Africa has such a diverse society. One of the greatest problems that face the nation in their religious walk, whatever that may be, is that the tribes revert to their dead for advice in the time of a crisis. On Sundays people will attend church and praise and worship God for hours. Six days a week, they will consult the forefathers or their spokesmen, if they have a crisis…
Superstition and witchcraft is rife in South Africa. Witchdoctors or Traditional Healers is acknowledged as a profession ….some medical aids even pay for their services. Companies have to accept a “sick note” from a Traditional Healer, who has no formal medical training.
Outside the Heart Hospital in Pretoria thousands of people have gathered singing hymns and burning candles in prayer for our beloved Madiba. Elsewhere the bones are being cast and rituals to appease the forefathers are being performed.
In the words of Mandla Mandela “At the end of the day, my grandfather’s fate, like that of everyone else, lies with God and our ancestors”
The prayer/request is the same. “Please end Madiba’s suffering. Allow him to die the way he lived…..with dignity.”
http://www.iol.co.za/sundayindependent/undermining-the-mandela-legacy
http://www.citypress.co.za/news/exclusive-mandela-elders-visit-qunu-grave/
Twinkle, Twinkle, Little Star
Note for the MS&D Side Bar: If you enjoy Morning Story and Dilbert
you will like "Suspended Coffee".
It's full of real life uplifting stories....
Kenny T
Wishing to encourage her young son’s progress on the piano, a mother took her boy to a Paderewski concert. After they were seated, the mother spotted an old friend in the audience and walked down the aisle to greet her.
Seizing the opportunity to explore the wonders of the concert hall, the little boy rose and eventually explored his way through a door marked ”NO ADMITTANCE.”
When the house lights dimmed and the concert was about to begin, the mother returned to her seat and discovered that the child was missing. Suddenly, the curtains parted and spotlights focused on the impressive Steinway on stage.
In horror, the mother saw her little boy sitting at the keyboard, innocently picking out “Twinkle, Twinkle Little…
View original post 192 more words
Bickering, Fighting and Death….
Why is it that at the time of death arguments and strife will prevail?
Whilst one of the world’s greatest statesmen, Nelson Mandela, is fighting for his life – his family is bickering… They are bickering about the burial site of the Rainbow Nation’s Icon, their father and grandfather.
The family are torn between Nelson Mandela’s favorite grandson Mandla, who wants him buried at his Mvezo birthplace, and the rest of the family, who feel that his wish to be buried next to his children should be respected.
The chieftain had moved the remains of his father Makgatho, who died of an Aids-related illness in 2005; his aunt Makaziwe, who died in 1948 at only nine months; and uncle Thembekile, who was killed in a car accident in 1969, to Mvezo. This is making it impossible for Madiba to be buried next to his children because they are buried in Mvezo. Mandela is going to be buried in Qunu. . Mvezo is the birthplace and the traditional home of the Mandelas, and thereby lies its historic and heritage significance. Qunu is the rural home of Nelson Mandela.
So whilst this brave warrior is edging closer to death his family have to make decisions that may rip the family apart.
Mandela often quoted Henley’s poem, Invictus (Unconquered)
“Beyond this place of wrath and tears Looms but the Horror of the Shade, And yet the menace of the years Finds, and shall find, me unafraid.”“The passage towards death is a difficult journey,” an ANC activist told Channel 4 News. “This country needs to celebrate his life, rather than let his death become a source of conflict. There is thing that we all unite on: all of us love Mandela. This nation will sink into deep mourning when he finally leaves us, no matter how prepared we think we might have been.”
Will the Mandela family unite in this time of sorrow or will they bring dishonour to this icon’s name?
In the meantime, South Africans are united in prayer. United in our desire for this amazing man to be allowed to die with dignity. That his family will behave with dignity and decorum…. Make Nelson Mandela proud….
Hero to Zero – one year ago….
A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.
Vic basking in the winter sun!
Sunday was an amazing day. Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.
Lorraine moved a chair into the sun for Vic. Vic sat basking in the winter sun sipping lots of coffee. In true form, Vic on her occasional good day, pulled the dam from under the duck. She was like a little jack-in-the-box. Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.
Vic sobbed from pain and my poor sister wasreduced to tears. She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!
Vic dozed on and off but kept waking from the pain. Maybe she took some extra painmeds because she seemed disoriented? Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…
Sunday afternoon the boys came home after spending the weekend with their Dad. Danie took Jared and Kirsten, (Jared’s girlfriend), to church. Vic kept trying to get out of bed. She is so darn stubborn. She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication. She kept getting out of bed. She would just not stay in bed.
I got so angry with her that I said I would fetch Jared from church. I needed to remove myself from the situation. Lorraine said “let me stay with Vic” and I said “No! Come with me”
Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…
At home she was lying in a crumpled little heap full of blood and screaming from pain. Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her. Vic went hysterical when I said I was phoning an ambulance.
“No Mommy, No!!! No ambulance! No ambulance”
We agreed that we would try to get her to hospital in my car. Jared half carried her out to the car and then the drama began. We could not swing her legs into the car! She was screaming with agony.
I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed. Eventually we repositioned Vic in the car. Jared sat behind her and cradled her in his arms. The ambulance escorted us to the hospital.
At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept. Vic screamed and screamed with pain! From 21.30 to 03:00 they x-rayed and scanned Vic. Most of the x-rays were done in the Trauma section. Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.
Vic in ER
If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!! Mommy!! Mommy help me!!!”
The diagnosis – “impacted fracture of proximal metaphysis of right humerus”. Vic was admitted to the orthopedic ward and scheduled for surgery today. The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm, too great, for him to “pin” the arm. So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own. She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do? Pain control, bed rest… Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports??? I only picked it up when I read the reports this afternoon!!!! I had to report it to the nursing staff!
I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?
I am so angry with myself. This happened because I got angry with Vic. I should have stayed with her and not reneged my Caregiving duty. I should have had been there to bulldoze my stubborn child into remaining in bed. My temper has caused Vic endless, unbearable pain. Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this! I will never forgive myself for this!
Well with the bad comes the good as well. We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day. Actually, the whole week! Problem solved. She is too sore to move… And will more than likely still be in hospital on Wednesday.
The nurses just changed her bed linen and she screamed with pain! How are we going to take care of Vic at home? My sister offered to come through but two qualified nursing staff could not move her without causing major distress. She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc
For the first time, ever, I am at a loss. I am so tired. I don’t know what to do anymore.
Vic, embedded in my heart and a building’s cement
Today the concrete foundation was laid of our Stepping Stone Hospice’s building.
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.
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.
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….
A lifetime of sadness
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
Groundbreaking week…
It was a ground breaking week for Stepping Stone Hospice .
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…
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.
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.
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!
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?
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.
Vic's Final Journey 