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.

22 thoughts on “A gentle death…

  1. Tersia, this post is so POWERFUL. I can hardly breathe after reading it. Clarity is elusive during grief, and you are an amazing woman. Raw, aching anguish and longing usually overwhelm rational thinking. I am teary to read your rational post, while I know that inside you miss Vicky with every cell in your body.

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    1. You are right -I miss her with every single fibre in my body! Thank you dear friend. Some of my bloggers friends are battling with this type of decision so I decided that I needed to share this information. This is why Vic want’s me to publish a book.

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    1. Hi Victoria Bruce – I agree. I have a living will and my family know exactly how I feel about dying without dignity. By having a living will I have taken the decision out of their hands

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      1. Oh my hat! What an amazing idea. When we are young it will be in a 8 or 10 font but I am afraid as we age and gravity sets in will become a 28 font…

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  2. you always thought what you were doing was the right thing and in the end you gave vic what she wanted and needed from you. that is a rare kind of love, to put your self aside and support your loved one in doing what seems like giving up or un-natural when it is indeed the most natural thing of all. thinking of you and vic, sending warm hugs

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  3. The more we ignore death the shallower our society becomes, because then it’s all about appearances. If we are born, then we will die. I hate that I’m forced to deal with death this way, but it’s what’s been given me, given all of us. I’ve not been blogging that long, but I’m making a community here and I feel more at home here than I do in the rest of the world. You all know; I’m sorry for it, but I’m glad you all reached out so I could find you.

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  4. Be gentle with yourself too… Your daughter had her own path, and even though you had your preference, she also made choices, as did her soul. I’m sorry you had to watch your daughter in pain for so long, I can’t imagine how difficult that must have been! Thank you for sharing your story.

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  5. This is such a powerful post Tersia… much food for thought, and wonderful that you were able to see so many different versions of truth .
    I’m going to make sure “there will be no moaning at the bar when I put out to sea”- and it will be a joyful voyage crossing the bar to a new adventure… why wait ?????

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  6. God, Tersia, this is… I don’t really know how to say. I’m sort of a bit stunned by that final photo. A very peaceful photo it is though, a body relieved, a spirit relieved.

    It was an enormous decision to allow her to die. My aunty, my mother’s sister, got cancer and did not accept treatment. She was a nurse, and very cognizant of what she was choosing.

    What you said about the aggressiveness of the doctors pretty much surprised me. Truly, are they truly aggressive in dealing with terminally ill and vulnerable people? Astounding. And so wrong.

    I always believe you should change jobs when you don’t care about your job any more, what you are doing.

    A very sobering post, Tersia.

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  7. Thank you for sharing these thoughts. We will soon have to draw up a palliative care plan for DD, without her input. This is an ethical minefield and I will bear in mind what you have written. x

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    1. I am so sad for you. It is such a hard decision and DD knows within herself that her time is close. Vic often spoke to me and told me that she was dying. When they have been ill for such a long time they know their bodies. I will continue to pray for you. No parent should ever have to go through this. Hugs xxx

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