Vic succeeded at life…


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…”

so sick

Vic in 2007

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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”

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… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respected and admired 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…

The Baby Whisperer

…… 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 at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.  We started on the 1st of January 2013 and Vic died on the 18th of January.  Our first patient.  Our first death.

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…..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.

Vic’s monuments…

……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.

 

Vic loving World Cup 2010

……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/

https://wordpress.com/post/36185300/3015/

http://download.springer.com/static/pdf/71/art%253A10.1186%252Fcc11867.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1186%2Fcc11867&token2=exp=1461937379~acl=%2Fstatic%2Fpdf%2F71%2Fart%25253A10.1186%25252Fcc11867.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1186%252Fcc11867*~hmac=08ff3ff972d6f80826a88836b665cace297a3e6feae8c461089cc821104e11fb

http://www.anaesthesiauk.com/documents/ards.pdf

http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806

 

Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube


This video touched me so deeply at every level.

I was petrified of holding Vic as a baby.  I was even more petrified of anyone else holding my baby.   I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks.  She sucked her little thumb and fractured it…  By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful.  Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married.  When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean…  Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life.  She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up.  Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless.  I could do nothing for my child.  I had been relegated from being “the Mother” to being “the mother-in-law”.  My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

 

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850 days


It is a mere 850 days since Vic died.  2 years and 4 months seems so short… 850 days seems far more representative of the longing.  It seems “longer”….

I woke up this morning with tears pouring down my cheeks.  I so longed to hold my child.  I know that the boys remembered too.  Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!”  The first to “like” his post was his brother.

I imagined that the longing would get better.  It doesn’t!

At first it felt as if I was overseas – away from the trauma of Vic being ill.  I always felt guilty at the “reprieves” I had when I was travelling for work.  Now I would give anything and everything for just an extra minute with my child.

It was hard standing next to Vic’s bed hearing her cries of pain.  It was even harder seeing the despair in the eyes of her precious boys when they stood next to their mom’s bed helpless to ease her pain and fears.

So often over the years I wanted to run away.  In the end, when Vic cried from fear of dying, I felt the need to put an end to her suffering well up in me.   I put my hands over my ears and screamed in my head.

Vic and her Dad

“Don’t leave me Daddy!  I am scared!”

How do you answer your child when she cries “I am so scared”?

We have a patient at Hospice who vocalises her fear the way Vic did.  Today I just held her.  How do you still the fear of the unknown in a dying person?  And NO!!!!  It has nothing to do with religion.  Everybody is scared.

From that dreaded moment when a patient is told they are terminally ill an avalanche of shock and fear hits them.  It is called actually “named” – terminal fear.  Vic (and Elizabeth*) fear dying, pain, saying goodbye, loss of control and mostly all-encompassing the fear of the unknown.

Vic’s overwhelming fear was that people would forget her – that she would be replaced….  Vic questioned her life’s worth.  She did not work and in her mind that meant it that she had not achieved anything.  That she would leave no legacy.  No matter how many times we reassured her that she inspired hundreds of people worldwide, the fear never left.  I hope that she now knows how powerful her legacy is!  That hundreds of patients have benefitted from her death wish and, most importantly, that her sons are her true legacy.

I have witnessed that grieving starts the moment of handing down the sentence.  It is a long and hard journey for the dying person, their loved ones and friends.

And, today that Elizabeth’s* fear rests heavy on my heart, I know that we will provide her a safe haven where she can relax into death.  We will hold her hand and guide her family through this dreadful trauma of saying goodbye to a wife, mother, grandmother and friend.

I pray for wisdom and strength to handle the déjà vu of Elizabeth’s* final journey.

 

 

16 months of Hospice and two special angels in Heaven


In the early hours of my Dad’s 3rd anniversary I feel compelled to give some feedback on Stepping Stone Hospice.

Sixteen months ago, with unbelievable arrogance we started Stepping Stone Hospice. What a journey it has been. We started working from my home with a registered palliative care sister, a wheelchair and very little else.

Sixteen months later we have not only moved into a lovely building but we have increased our In-Patient-Unit for 4 beds, we employ 2 nurses, a staff nurse and a team of 13 palliative trained caseworkers. We have plans to extend the building so we can increase the In-Patient-Unit to 10 beds. Every piece of furniture and equipment was donated by the community and to date we have not asked anyone for a single cent. There have been months where we had to pay the nursing staff from our own pockets, but we have never turned away a patient.

We have received beautiful letters of gratitude, established a memorial rose garden and a reputation as a great Hospice.

I am in total awe of the phenomenal nursing staff who go beyond the call of duty. They will go and sit with a family and their dying loved one at 3am in the morning… On Saturdays and Sundays they interrupt their lives to care for the destitute dying in our community.

We have an amazing group of volunteer caregivers who sacrifice their time to guide the families through the final stages of their loved ones journeys. We cry with the families, hold their hands and sing for the dying.

I am so grateful for this amazing organisation and everyone who is involved with it. I am grateful that Vic’s legacy has made a difference to other end-stage Alzheimer patients. I remember my precious father who fought with every fibre of his body to hold onto his memories, his mind, his family….

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486 days…


486 days; 1 year, 4 months; 69 weeks….

Oh dear God, will this pain never stop? Will my heart ever heal? Will I ever be able to look at a photograph without tears welling up in my eyes? No matter where I am or who I am with – I miss my precious Angel Child.

I know your pain is over. Remember the night you crawled into bed with me and I told you that I looked forward to your pain being over? Did you know that night how many tears I would shed for you? Did you know that my life would change forever?

Yes, I know you did. Your words echo through my mind…”Mommy, I am so worried about you. How will you cope when I am gone?”

My stock standard reply was “I will cope baby. I will remember your pain and be glad that it is over”. How stupid of me.

As time goes by I forget how sick you were my precious little one.

Then I look through my photos. I see your pain. I see death in your beautiful eyes.

You knew how hard it would be. In your infinite wisdom you tried to prepare me. You tried to prepare the boys… Sweetie, nobody or nothing in the world could have prepared me for the pain, the loneliness, the void…

Sometimes I wonder how many days it will be until we meet again. I pray it is soon. This is just too hard.

How to die


People live as they die.

If they constantly worried about their health and each and every little pain and symptom in life, they will worry until the end. If people were unconcerned about their health in life they will be slack in seeking help and treatment. If they were bad-tempered and impatient in life, they will die impatient and bad-tempered. Gentle people die gentle deaths.  (I am excluding violent deaths from the statement above.)

In Hospice I am amazed to see with how much stoic dignity some people die. Many of my acquaintances have died in the past 14 months under our care. People that I knew were dignified, in life, died peaceful dignified deaths. Up to the end they will say “please” and “thank-you.” I have witnessed, and experienced people hold onto life with every fibre in their bodies (as did Vic). I have also seen people “decide” to die. We see it in their eyes. Death is a decision.

Dying is not a two-minute thing… some people die slowly over many days. In these slow, lingering days it is our job to keep the dying pain and symptom free. Comfortable surrounded by their loved ones.

In a perfect world people die at Hospices surrounded by their loved ones – in theory that works, only in theory.

Many people are dropped off at the In-Patient-Unit and as soon as it is “decent” the family will leave to rest… Some don’t return. Some do after many phone calls updating them of the gravity of their loved ones condition. Some will pop in for the final moments. Some don’t. Some stay. They enfold their loved one with compassion and love, complementing us in our job. Some people die with their loved ones united in prayer; others die with the family singing gentle songs. Some die telling their loved ones to f… off…..

I have come to the conclusion that people without a spiritual and/or religious base die bad deaths. They swear at their families and the world until their final day… They worry about their new cars; a business deal – some have alcohol sneaked into the IPU. They deliberately remove their diapers and urinate on the sheets; one even defecated on his sheets defiantly grinning at the staff. A final “f— you” act. No, he was fully conscious of his actions and the effect that it has on those caring for him. He was dying from cancer not Alzheimer’s.

Seeing someone die is quite amazing. It is a beautiful experience witnessing the soul leave the body. There can be no doubt that there is life hereafter.

A young woman died in the IPU. She lingered for 8 days. Finally only her mom was left next to her bed gently whispering words of love and encouragement. After she died we prepared her cancer ravished little body for collection by the undertakers. When they arrived I escorted them to her room. She lay there with an angelic smile on her face. I called her mom and said “you have to see this…” When her mom had left her side it was just a tiny little bag of bones that lay there. When her mom next saw her she had this peaceful, angelic smile on her face. Truly a message for heaven for her grief-stricken mother.

I hope that I will be stoic and brave in death. That fear of the “Great Beyond” will not overwhelm me. I hope that I will be dignified and brave in death. I am such a ninny in life.

Stepping Stone’s first death


Vic was the first Stepping Stone Hospice death.

I was clearing up some filing at the office when I came across Vic’s case notes. Tears ran down my cheeks when I read the observation of the Hospice nurse…

21.11.2012:-    Pt gradually getting weak but stable. Pain controlled and up and about

20.12.2012:-    Very weak but stable. Pain controlled

3.1.2013    Pt experiencing obstruction. Started on SD (Syringe Driver). Buscopan, Zantac, morphine over 24 hours. Prognosis short

8.1.2013    Pt seen by Dr Sue, very weak. Actively dying. Not eating or drinking. Vomiting much better. Pt still responsive even in deep sleep. Continue SD

11.1.2013    Pt terminally weak but stable on SD. Actively dying. Family up to speed with progress

18.1.2013    Pt R.I.P this am. Peaceful and comfortable at home

Vic’s suffering had been reduced to a couple of lines. A couple of words. No mention of her vomiting blood or did I forget to mention it to the nurse? No mention of her being unable to breathe because of the pain. “Pain controlled”…

The pain of Vic’s death is as fresh as it was a year, a month and 11 days ago.

We have now lived many Hospice deaths. Some have been friends, some strangers that became friends and some strangers that remained strangers. I feel the pain of the mothers whose daughters died in the In-Patient-Unit. I held them and comforted them, but I could not take their pain away. I tried to prepare them for the emptiness that would follow the funeral…the guilt, the anger, the loneliness.

I know that our Nursing Sisters are compassionate and caring. I know that I would want to die in the Unit. I know the staff will light candles to shield me from the harsh fluorescent light…. I hope that Lorraine Msini will softly sing Amazing Grace as I end my journey on earth. I have truly learnt that death is not the enemy. Living is.

I no longer cry for those who are dying. I cry for the ones who are left behind. I cry for the emptiness I have seen in mothers eyes… the raw, undiluted pain… I know that when I see them in a few months’ time they would have learnt to mask that raw, undiluted pain and emptiness in their eyes.

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