I Grieve – Peter Gabriel


IMG_9522

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

 

Peter Gabriel

Mandela and the wrath of his forefathers….


Photo © Sipho Futshane
Photo © Sipho Futshane

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.

Photo Credit: goafrica.about.com
Photo Credit: goafrica.about.com

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/

 

Bickering, Fighting and Death….


BNwxajwCUAA1KLnWhy 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….

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


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

26.6.2013
26.6.2013

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

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

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

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

The boys and I huddled together and wept.

Stepping Stone foundation
Stepping Stone foundation

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.

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My beautiful child


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

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.

Vic’s letter from Heaven


Vic's letter from Heaven
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 15th 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.

stepping_stones_of_memory_by_nwwes-d3krg59


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.

“Amare et fovere” to love and cherish…


“Amare et fovere” to love and cherish….