Twinkle, Twinkle, Little Star

Morning Story and Dilbert

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…

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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

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 9^th 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 10^th 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 14^th 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 17^th 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 12^th birthday, her 16^th, 18^th, 21 and 30^th birthdays…We celebrated her 38^th birthday. Every birthday from her 27^th 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 letter from Heaven

Today it is 5 months since Vic died. I am trying to get Vic’s estate done (not doing well at all!!) and came across a file with a letter addressed to me.

It flashed through my mind…”A letter from heaven!”

It is not a recent letter. It is a letter that Vic wrote years ago. How do I know? It was with her old Last Will and Testament.

I am grateful for the letter. I am heartbroken that I am reading it.

I love you always and forever my Angel Child.

Hospice – friend or foe?

Hospice – friend or foe?

A blogger friend, Terry, is preparing for her beloved brother Al, to move home from an Assisted Living Facility. Al suffers from Parkinson’s disease and his general health condition is extremely precarious. Terry blogged: “I finally heard nothing from the phone. I had done everything I could find to do trying not to have to make the dreaded call to Hospice. I decided not to use the Hospice here in our county. I was very disappointed in them with the lack of care they gave to my father.” http://terry1954.wordpress.com/2013/06/17/al-and-hospice-meet/

Vic wrote this on her Face Book page on the 15^th of May 2011… “Today Hospice came to access my Grandfather… They dripped him & made him comfortable. He has lost his swallowing reflex, sleeps most of the day, is completely bedridden & can barely talk… The suddenness of his deterioration is very difficult to comprehend. Could you all say a big prayer for my Gramps and especially my Mom, who lost her best friend of 25 yrs., age 51 to a heart attack last Tuesday. My Mother is one of the strongest, bravest people I know… How do we say goodbye, how do I take my Boys to say their Goodbyes tomorrow, how do we accept that this incredible man has such little time left regardless of the fact that we all know that its best for him. How can I be strong for my babies when my heart breaks all over again, every day when I see him…? Especially my Eunice Friends will all remember how desperately my Gramps and Gran loved and spoilt me and how VERY MUCH they meant to me… I don’t want to live without him even though I realise that that is extremely selfish, but I love my Grandfather so desperately, it’s not fair… All I ask for is compassion… Compassion for Gramps and my Mother… Thank you to everyone for all your love & support through everything… Love Vic…”

I am a great believer in the services that Hospices offer – worldwide. Hospice cared for my Dad in the last week of his life and for Vic the last 5.5 months of her life. My experience was positive.

The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. Seven years later the United States opened their first hospice facility in 1974. In America the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness. In my country only 5% of the dying actually have access to Hospice services.

The original idea of hospice is that once curative treatments are no longer effective, a patient enrols in hospice to receive comfort care. In our culture of “fighting” death illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.

Hospice care is for a terminally ill person who’s expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, however. Hospice care can be provided as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.

The benefits of hospice and palliative care

Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.

Source: National Hospice and Palliative Care Organization

Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.

When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice team often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.

The above is all well documented facts. Yet, when a family is faced with that terrible decision to call in Hospice, it is a deeply emotional decision. The phone call is a terrifying telephone call. This is evident from Vic and Terry’s posts…..

It made me realise what a massive challenge lies ahead of us in Stepping Stone Hospice. We need to educate the community. We need to dispel the fear of and for Hospice.

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

Happy Father’s Day…

When I started thinking about Father’s Day this year I just became so depressed. I felt that I don’t have any reason to celebrate Father’s Day tomorrow. Today, I was going through Vic’s photos when I realized that it is not true!

My Dad died on the 21st of May 2011 and Vic’s father died on the 5th of November 1999.

I was single for most of Vic’s young life. For most of her little life my Dad was her Dad. Her Gramps taught her how to play cards and have a night cap….When Gramps had a nightcap he had to mix her a “drink” that had the exact same colouring as his… They adored one another.

Just about the only thing my dad never forgot was that Vic was ill. He could not remember my name, but he remembered Vic was ill. He forgot whether she was in hospital or not but knew she was ill… My Dad was the greatest father in the world. He not only loved his family but cherished us all.

I grew up in a home with a sickly mother. A childhood back injury lead to many years of suffering and a vicious cycle of back surgery, stomach surgery, back surgery, stomach surgery…. My parents taught us that “love” was a verb – love is an action. We lived 1 Corinthians 13 in our home. We were taught to love, honour and respect. My father was the perfect example of what a husband and father should be.

In my single years I received a couple of proposals. My mom pressured me – she really wanted me to remarry… I always said I will remarry when I meet a man like my Dad. And then I did…

From the day we were married Vic called Danie “Daddy”. Danie’s four children were her siblings.

Danie was absolutely amazing with Vic and her illness. When my dad moved in with us, Danie just accepted it as part of our journey. He was incredibly patient with my Dad who suffered from Alzheimer’s. His selfless, caring nature has allowed me to care for my dad and my child; to pursue my career and start-up Stepping Stone Hospice.

Danie was a wonderful dad to Vic. She distinguished between Danie and Tienie (her biological father) by referring to Danie as “Daddy” and Tienie as her father. She absolutely adored Danie. Danie loved Vic as if she was his own.

In the final days of Vic’s life she pleaded with him to not leave her.

"Don't leave me Daddy" — “Don’t leave me Daddy”

A couple of days before her death Vic saw her father… Jared was standing at the bottom of her bed and she said “Look Jared, Oupa Tienie is standing behind you…” Her dad held her hand as she stopped breathing. Her father took her hand as she stopped breathing…

When I packed up Vic’s cupboards I found the cardigan she had bought Danie for Father’s Day this year… This year she will celebrate Father’s Day with her father and Danie will wear his cardigan.

Father’s Day and Mother’s Day were special days for Vic. She loved spoiling and being spoilt!

Vic was desperately ill last year on Father’s Day. I cooked a large family lunch and all the Gauteng kids and grandkids came for lunch. Vic tried to have lunch with us but within minutes she was nauseous. I remember her eyes filling up with tears when she excused herself from the table. “I am sorry Daddy” she said.

Later that afternoon Danie’s eldest daughter lay next to her in bed. They wept together. Danie sat with them filled with grief for the pain Vic was going through.

Danie is an amazing grandfather. He loves Vic’s boys as much as he loves his “biological” grandchildren. He enjoys spending time with them. He is teaching them the value of family, goodness and love!

This beautiful man is more than I deserve. I love him with every fiber of my body. I am grateful to him for the gift of his children and grandchildren every day of my life. I am grateful that he taught me the biggest commandment of all – love!

So tonight I salute two wonderful men. Happy Father’s Day Daddy. Danie, you are my best friend. I love you with every fibre in my body. Thank you so much for being such a wonderful daddy to Vic and grandfather to the boys.

Vic's beloved Daddy and Gramps — Vic’s beloved Daddy and Gramps

Vic, I hope you have fun in Heaven tomorrow with Gramps and your father. I know you will be surrounded and ensconced in love. We will miss you on Father’s Day and every other day in our lives.

http://www.youtube.com/watch?v=c9ZMDPf9hZw&feature=colike

When tomorrow comes

I wish that…

Someone 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.

Category: Vicky Bruce