Thank you God 17.12.2012 – One year ago

Thank you God

I just finished a batch of choc-chip cookies. The house is quiet and sweet smell of the biscuits has permeated the air. The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped. It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning. She lanced the cellulitis abscess on Vic’s arm. My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face. He cried with pain. Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated. She has a kidney infection. Kidney infections make her tired. I just checked on Vic, and she is sleeping so peacefully. She has a serene expression on her beautiful face, and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home. I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved. I can now care for my child without having to consider my “position” in her life. I am able to be her mommy and take care of her. The boys are settled and happy living with us. We love having them so close to us. They are such well-behaved, kind and helpful boys! Before Vic moved home the boys, mainly Jared, had to cook most days. Now they are able to be children. Life has settled into an easy routine. We have laughter and fun. We cry and despair. We hug. We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking. She helped with the preparations for Jared’s 16th birthday party. Vic passed me the spices when I baked this year’s Christmas cakes. We laughed when we decided the cake needed another “splash of brandy”. Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person. He is my rock and pillar. He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.

Stepping Stone Hospice

This week I truly realised that the Stepping Stone Hospice patients are “our” people. Our friends. They are not strangers. They are people we know from church, they are our neighbours, our friends; friends of friends… Our Hospice cares for our own. We are not “removed” from the community.

We however continually grieve.

Stepping Stone Hospice is just so different. We are not a group of detached, paid staff doing a job. This is a Hospice driven by the tears of its members. It understands the fear in the hearts of its dying and its survivors. We see our loved ones

We have lost our fear of death. We have not become immune to the tears of our community and friends. We truly live and experience “Ubuntu” every day.

A little old lady has shuffled into our offices with R150.00 ($15.00). She told us that when the interest rate went up she would be in a position to increase her monthly contribution to our “worthy cause”. How amazing would it be if everyone in our community contributed $15.00 a month?

I love spending time in our building. I feel close to Vic.

Our Hospice journey is a healing journey. We have been helped over the stepping stones…now it is our turn to take the hand of another and help them over the stepping stones. What an amazing privilege. All built upon our own tears and the deaths of our loved ones.

Together We Walk the Stepping Stones
by Barb Williams

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

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

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

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

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

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

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

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

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

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

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

Christian prayers for the dying

All religions have prayers for the dying. There is so much common ground between the different religions and their prayers. I will post different religions prayers for their dying.

Kahlil Gibran – 1883-1931 writes…If you would indeed behold the spirit of death, open your heart wide unto the body of life. For life and death are one, even as the river and the sea are one.

Christians believe in the redeeming power of love.

Christians are encouraged to be childlike in their faith; to pray for forgiveness regardless of how far they had strayed.

Christians believe in the resurrection of the body. One week before her death Vic requested that she be served Holy Communion. I believe that Vic was comforted by the words of John 6:54 that reads “Whoever eats my flesh and drinks my blood has eternal life, and I will raise them up at the last day.” Vic truly believed in the words of Paul in Romans 1:16b, “because it is the power of God that brings salvation to everyone who believes…

Here are some examples of Christian Prayers that can be prayed with the dying:-

“Oh Righteous Father, we know our days are numbered in your book of life and that precious in your sight are the death of your saints. We are so thankful that we can stand on your promises and know that when we die, we are instantly in your holy presence. All of those who have gone before us, beloved friends and family, are there waiting for us. We know that death cannot hold us because just as Jesus died and was resurrected, we too know that we also will be raised to eternal life. There is such peace in knowing that there will be no more tears, no more sorrow, and no more pain. What great and precious promises you have given us. We know that nothing can ever separate us from your love. No one or nothing can snatch us out of Your mighty hands. Blessed Lord, please be with [name] in this time and with his/her family; to comfort, strengthen, and encourage them during the coming difficult days and times ahead. We pray that Your tender mercies be upon [name] now. I thank God for [name] and the faithfulness that he/she has shown in their life. [name] has placed his/her trust and faith in You and we know that you will never leave [name] nor forsake him/her. We thank you for your precious gift of salvation which came through the precious the blood of the Lamb of God at supreme cost. Our atonement was made possible by Him and has made us one with You. We ask these things in the power, majesty, glorious, and most holy name of our Saviour, King, Master, and Lord, Jesus Christ. Amen.

Saying “Thank you” and “Good-bye” – Helen Meier, Hope Hospice, Dublin, CA

________(person’s name) thank you for all you have given me, your family, friends, and the world. You have impacted my life with your love, your caring and your wisdom. Now that you are gone, I will carry all your love and everything I learned from you within me. The essence of who you were as a person will live within me and within others. You will continue to give to the world as we pass on to others what we learned from you. I will miss you, but will have joy in remembering all you meant to me. Each thing you touched will bring you to mind. Your laugh, your smile, your words will resound in my mind and heart. Good-bye dear one.

John 14:1-3

Let not your hearts be troubled: believe in God, believe also in me. In my Father’s house are many rooms; if it were not so, would I have told you that I go to prepare a place for you? I will come again and will take you to myself, that where I am you may be also.

The Lord is my shepherd;
I have everything I need.
He lets me rest in green meadows;
he leads me beside peaceful streams.

He renews my strength.
He guides me along right paths,
bringing honor to his name.

Even when I walk
through the dark valley of death,
I will not be afraid,
for you are close beside me.

Your rod and your staff protect and comfort me.
You prepare a feast for me
in the presence of my enemies.

You welcome me as a guest,
anointing my head with oil.
My cup overflows with blessings.

Surely your goodness and unfailing love
will pursue me all the days of my life,
and I will live in the house of the Lord forever. Amen

– The Bible, Psalm 23 –

Benedict,
when the storm rages
around me,
and I can hold on no more,
when the waves of fear engulf me
and I am weary,
battered and sore,
take me then and steer me,
storm-tossed, broken and afraid,
into the arms of your safe harbor
safely home.
Amen

– Prayer to St. Benedict –
– Friar Dennis Ward O.S.B. –

http://www.facebook.com/group.php?gid=2342444733

Our Father who art in heaven,
hallowed be thy name;
thy kingdom come;
thy will be done on earth as it is in heaven.

Give us this day our daily bread,
and forgive us our trespasses,
as we forgive those who trespass against us.

And lead us not into temptation;
but deliver us from evil.

For thine is the kingdom,
the power and the glory,
for ever and ever.
Amen

– Lord’s Prayer, traditional –

Lord, make me an instrument of Thy peace;
where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

O Divine Master,
grant that I may not so much seek
to be consoled as to console;
to be understood, as to understand;
to be loved, as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that
we are born to Eternal Life.
Amen.

– Peace Prayer of St Francis –

Unto God’s gracious mercy
and protection we commit you.
May the Lord bless you and keep you;
may the Lord make his face to shine upon you
and give you peace evermore.
Amen

– The Bible, Chapter 6, Verses 24-26 –

To every thing there is a season,
and a time to every purpose under the heaven:
A time to be born, and a time to die;
A time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal;
A time to break down, and a time to build up;
A time to weep, and a time to laugh;
A time to mourn, and a time to dance.

– The Bible, Ecclesiastes 3, Verses 1-4 –

Blessed are the poor in spirit:
for theirs is the kingdom of heaven.

Blessed are they that mourn:
for they shall be comforted.

Blessed are the meek:
for they shall inherit the earth.

Blessed are they which do hunger
and thirst after righteousness:
for they shall be filled.

Blessed are the merciful:
for they shall obtain mercy.

Blessed are the pure in heart:
for they shall see God.

Blessed are the peacemakers:
for they shall be called the children of God.

Blessed are they which are persecuted for righteousness’ sake:
for theirs is the kingdom of heaven.

– The Sermon on the Mountain, Matthew 5:3-10 –

Watch thou, dear Lord,
with those who wake,
or watch, or weep tonight,
and give thine angels charge
over those who sleep.

Tend thy sick ones, Lord Christ.
Rest thy weary ones.
Bless thy dying ones.
Soothe thy suffering ones.
Pity thine afflicted ones.
Shield thy joyous ones.
And all, for thy love’s sake.
Amen.

– Saint Augustine’s Evening Prayer –

Credit: http://www.whatchristianswanttoknow.com/how-to-pray-with-the-dying-5-helpful-tips/

http://www.beliefnet.com/Prayers/Protestant/Death/Prayer-For-Someone-Who-Is-Dying.aspx

http://www.sofriendsofhospice.org/spiritual/words.shtml

Deathbed promises kept and broken

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

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

“What is wrong with my wife?” he asked

“She is very ill” I said

“When will she come home?” she asked.

“You must speak to the staff” I said

“They say nothing” he said

“Your wife is dying… I am so sorry.”

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

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

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

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

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

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

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

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

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

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

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

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

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

It is one promise I was able to keep.

The entrance to Stepping Stone Hospice being blessed

The boys outside the Vicky Bruce Dignity Room

The shadow of grief

Grief becomes a shadow. It finds you and follows you. At times the shadow is small and then at times it is big.

Your shadow is a constant companion. It keeps up with your pace… It will run with you but it will also crawl with you. When you stop it will stop.

It follows you into the valleys of despair and will climb mountains of triumph with you. Grief is a constant companion.

When you are in the deepest valley your shadow is there. When at the heights of the highest mountain it is still there.

A shadow is a dangerous thing. If offers a wonderful hiding place. A place to lose one self. At times the shadow invites me in and I get lost in my shadow of grief. In the shadow I am invisible and no one can see my pain, my sense of loss, my loneliness. My shadow is a safe haven where I get to become one with my grief.

The boys are a light that draws me out from my shadow. Hospice and my faith is a light that draws me out from my shadow.

The grief of losing a child is not only on high days and holidays. Grief follows you on bad days, good days, every day… It gets into bed with you and awakens with you.

It even permeates your dreams.

Today it is 8 months since Vic died. Not a single day has passed that I have not been acutely aware of the shadow of grief that accompanies me on my journey. Has it become a journey of recovery? No, I doubt it. I think it is too soon. I do have better days…Then I have days where I walk into a supermarket and see Vic’s brand of deodorant or shampoo. I will put out my hand to touch a @$*# tin of deodorant and tears will well up in my eyes.

For heaven’s sake! A stupid tin of deodorant now has the ability to reduce me to tears!

Today I stood outside the Hospice building. It is nearing completion. I experienced a profound sense of achievement. Pride and satisfaction welled up in my heart but disappeared into that massive, gaping hole left by Vic’s death.

“This is because my child died” it rushed through my brain….

Of course someone would have started a Hospice. That I don’t doubt for one second. Maybe the rest of the team would have been involved. Maybe the financial backing would have been better – who knows? The fact remains that the reason I got involved is because my child died and I promised her that her death would not be futile.

The Anniversary

There are times in the life of a terminally ill person that death is no longer the enemy but rather a friend. Vic too surpassed all anniversaries and eventually I though she was invincible. But with invincibility comes pain, indignity, despair, depression… Thinking of you Mike in your brave journey.

200 days

Today we lit candles in remembrance of Vic dying 200 days ago. My mind keeps crying “No! It is not true!” The void in my heart and life shrieks “Yes, it is!”

I met with a new Hospice patient today. She is in her early 60’s, petite, bright, friendly, positive and so unbelievably brave! She is also in denial and dying.

“I believe I will wake up one morning and I will be healed!” she said

Her skin has discoloured from the chemo, her eyes are turmeric yellow and her belly is very extended. Her feet and legs are dreadfully swollen. I believe that she is close to death. Yet this incredible woman is determined to go to the office from the 12^th of August until the 27^th of August as her replacement is on leave then…. I doubt that she will live that long!

I sat there and it was déjà vu… It was as if I was listening to Vic planning next week, next month and next year…. I heard her husband encouraging her to write letters, finalising her will. I shared with them how Vic had labeled every piece of her jewellery, given strict instructions on what had to happen to her possessions, planned her own funeral…

“Am I correct when I say that I hear you saying your child died?” the patient asked.

“Yes” I said. “200 days ago today”

“I cannot believe that you can talk about your child’s death! You are smiling and look so normal” she said. “When our son died we could not talk about it. We cried all the time…”

“Death is not the enemy. I prayed for my child to die…” I said.

“It is okay to cry” they said

“I cry every day” I said

Mandela Day 18 July – what are you going to do?

South Africans from all walks of life are gearing up to celebrate Nelson Mandela International Day on Thursday, the 18^th of July. This is in honour of Nelson Mandela‘s legacy, whose life and commitment to democracy has shown that everyone is useful and has potential to bring change for the good of all.

The idea of Mandela Day was inspired by Nelson Mandela at his 90th birthday celebrations in London’s Hyde Park in 2008 when he said: “It is time for new hands to lift the burdens. It is in your hands now.”

The United Nations officially declared 18 July as Nelson Mandela International Day in November 2009, recognising Mandela’s “values and his dedication to the service of humanity” and acknowledging his contribution “to the struggle for democracy internationally and the promotion of a culture of peace throughout the world”.

Website:www.mandeladay.com
UN website:www.un.org/mandeladay
Play Your Part, a social network that links individuals eager to make a difference with community organisations:www.playyourpart.co.za

People around the world are challenged to spend at least 67 minutes doing good work in their communities in honour of the 67 years that Mandela gave in service and sacrifice. Please help us make the world a better place!

The overarching objective of Mandela Day is to inspire individuals to take action to help change the world for the better, and in doing so build a global movement for good. Ultimately it seeks to empower communities everywhere. “Take Action; Inspire Change; Make Every Day a Mandela Day.”

‘It is in your hands to make of our world a better one for all’ – Nelson Mandela (Photo: Mandela Day)

South Africa‘s focus this year would be “on community development and a call to everyone to use their energies, wisdom and skills to contribute towards eradicating poverty, addressing food security and reducing hunger”

Groundbreaking week…

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

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…

Steering Committee and Construction Team on site

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

What a beautiful world we live in.

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.

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.

Mommy’s dream is coming true…

Jon-Daniel’s BBM status today was “Mommy’s dream coming true” with this photo…

Your dream is coming true my angel child. Your Stepping Stone Hospice is functioning, and we have received a building as a donation! Next week construction will start and by the end of the month we will move in!

Behind the building there is a duck pond and a quaint little chapel. I look forward to planting some roses in the garden! We anticipate wheeling our day-care patients into the garden so they can feed the ducks.

Of course we do not have furniture yet. The boys are donating the furniture for the two Dignity Rooms (dying rooms). It was their decision! We want to real make the rooms pretty and lively… We will play gentle music and burn candles like we did for you… It will truly be rooms of love…

Yesterday I was at the site and I was looking at the terrain that they were clearing. All of a sudden there was this perfect white feather…Another message from you Angel. Thank you. I needed a sign…

Stepping Stone Hospice is daunting. This week an article appeared in the Tames Times. It opened a floodgate of telephone calls… An elderly man called. His voice was raw with grief and despair. His wife is dying from liver cancer and he is going through all those familiar caregiver anguish. How will he know when it is time? But she is still working and in total denial…He did not want help and will put my number on speed dial… I experienced what Arlene must have experienced when I phoned her the first time…. Quite a few new patients this week…so much pain and fear…

We have had wonderful offers of help. A woman phoned today and said that she did not know how to care for a sick person, but she was prepared to go clean a sick person’s home… We have had offers of help from professional councillors, people from all wards of life…Now we can only hope and pray that people will volunteer furniture and make some financial contributions!

I am amazed at the goodness and generosity of people. The company that donated the building belongs to a young man, Jaco Schultz. You would have liked him my angel. He is really a nice young man with a “white heart”.

I can hear you asking “Where did you find him Mommy?”

I did not find him. He found us! Long story…here is the short version!

We sell second-hand clothing to raise funds… El-Marie, Jaco’s sister took 14 bags of clothing to Trix. Trix (a wonderful woman with a superb sense of humour and a passion for Stepping Stone Hospice) told her what we do with the proceeds of the clothes (we buy medication for the indigent patients). Two weeks later she dropped off more bags and asked whether we could meet her brother…

The meeting itself was quite funny. It was when I had that terrible flu. The morning of the meeting I hardly had a voice, my head was throbbing and I was certain I would die. Remember the woman you met, who lives around the corner from us and whose daughter-in-law was paralysed in an accident in December 2012? She was at the meeting. I was so scared I would spread my flu germs, and she would contract my flu, that I wore a facemask – I did not want DiL’s death on my conscience. It must have looked so funny! Me with this horrible surgical facemask… gasping for oxygen and only breathing in concentrated germs!

Jaco asked to see the terrain, and we went on a walk-about. He asked whether a tree could be moved….We had a promise of a building that would have a small day-care centre, two dignity rooms, a treatment room…! As easy as that!

Within weeks the promise is becoming a reality. Construction starts next week! I am so excited! So my Angel Girl, there was a purpose to your suffering after all. I wish it was different but it isn’t. We have been blessed beyond comprehension.

I believe that God is personally overseeing this project.

Love and miss you with all my heart Sweetie.

https://tersiaburger.com/2012/11/08/being-prepared-to-die-is-one-of-the-greatest-secrets-of-living-george-lincoln-rockwell/

https://tersiaburger.com/2012/11/16/we-both-laughed-and-the-moment-was-over/

https://tersiaburger.com/2012/12/02/where-to-now/

https://tersiaburger.com/2013/02/13/the-process-of-preparing-for-death/

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

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2013/05/27/hospice-patients-live-longer/

https://tersiaburger.com/2013/04/24/stepping-stone-hospice/

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

“This is to have succeeded”

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

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

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

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

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

“That is terrible Mommy. Why?”

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

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

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

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

Her last words ever were “I love you Mommy”

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

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

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

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

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

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

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

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

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

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

When the soul leaves the body

When the soul leaves the body.

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