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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In Memory of Vicky Bruce for my friend Tersia


“Hi my name is Shaun from Scotland.”

Shaun is an amazing man who lives in Scotland with his beautiful partner Dawn, two sons and two daughters.  Shaun suffers from Fibromyalgia.  Fibromyalgia robbed him from coaching soccer and his active life.  Shaun has suffered many losses but has grown in his pain to be an amazing blogger and friend.  In his own words ,”The pain took things and kept doing so. I decided to make the pain my friend and live and laugh.”

Shaun started following my blog on the 19th of January 2013.  How do I remember?  Shaun responded to my post https://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/

I remember his words.  He said that he and his partner, Dawn,  sat and hugged for an hour crying for Vic…. Shaun reached out to me in the midst of my worse pain and never abandoned me.  Many people have grown tired of my tears and sorrow and moved on to other blogs.  Shawn has stayed.  He comments, consoles and encourages.

Shawn, Dawn and Dean (their son, made this beautiful picture and link in memory of Vic.

When I read his post tears just ran down my cheeks.  Tears missing my child that had such a profound effect on people all over the world mixed with tears of gratitude for friends who are not afraid to use my child’s name…  Thank you Shaun, Dawn and Dean for taking time out of your lives to remember and honour my precious child.

I cherish our friendship!

 

Rest in Peace Angel Child


Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.

“Rays of hope” I thought.

I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…

Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.

This morning I remembered that Vic had absolutely no quality of life. I remembered my fear that her suffering would never end… I remembered my prayers, pleading with God to end Vic’s suffering.  Alberton-20120114-00781  Image (178)

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So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…

I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.

I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.

Rest in Peace my Angel Child. You are ALWAYS     in my heart.

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One year today


My precious child

Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…

If feels as if a lifetime of sorrow has passed since you stopped breathing.  If feels as if it has been a lifetime since I held you in my arms.  It feels as if I have cried an ocean of tears.

In the past year I have aged.  I have gained weight. I have existed. A year ago my life ended.  The boys and I still burn candles for you.

I am still filled with rage.  I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity.  I know that you would more than likely have died before me but perhaps with less suffering?

I will always miss you.  I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.

Today I want to thank you for my beautiful grandsons.  Thank you for remaining my little girl through-out your life.  Thank you for fighting for so long.  You were such a warrior!

I thank God that you came home to die.  I thank God that I had the privilege of caring for you.  I thank God that He entrusted me with something as pure and precious as you.

I am grateful that you are no longer fracturing vertebrae from vomiting.  As much as I miss your laugh I do not miss your pain filled tears.  I am grateful precious baby that your suffering is over.

I miss your company.  I miss our late night chats, drinking untold cups of tea/coffee.  I miss your text messages, your telephone calls, your shuffling footsteps down the passage…  the smell of smoke alerting me that you are awake and sitting on your step…

I miss the boys laughter.  I miss the joy that you brought into our lives.

We will continue to honour your memory – every day of our lives.  Your legacy will live on in each and every person that is allowed to live until they die with dignity.

I love you Angel Child with every fiber in my body.

Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…

I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…

Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…

Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…

look and don't touch_edited vicbaby Vic 5 years old100_7453 (2)Image (184) Image (191) Image (193) Image (214) Image (220)

Setting Vic free 14.1.2013


I had stopped all visits. It was family time. Our little family united in the trauma of our loved one’s dying.

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The boys were back at school on the 9th of January. On Monday, the 14th of January, it was Jon-Daniel’s academic awards evening. Vic had so desperately wanted to attend. The Sunday evening she begged me to please promise her that she would attend. I promised her, knowing that it was a death-bed promise I would not be able to honour.

Sunday night, the 13th of January 2013, Vic gently slipped into a semi-coma. She was no longer conscious of what was happening to her and around her. She was only able to respond by blinking her eyes…

Monday morning Vic woke up….She was alert and asked to go to the toilet. She was unable to stand on her own and Primrose and I half-carried her… Her little body dumped it contents. Vic was petrified. She had not eaten since Christmas. I undressed my precious child and held her up in the shower. I washed her hair and her painfully thin little body. I was soaked but Vic was clean.

“Mommy I am dying… I don’t want to die. I am so scared.” Vic cried

“I know my angel. Mommy is here…”

“Mommy, I am so sore. Please can I have something for pain?”

“Angel, do you want the normal dose or the increased dosage that Sue prescribed?”

“The increased dosage Mommy…”

“Sweetie, you know that it will make you sleep…”

“I know Mommy. I cannot bear the pain anymore…”

“Must I keep you on the increased dosage angel?”

“Yes please Mommy….”

I drew up the syringes. It broke my heart trying to find a site to inject. Her little body was so bruised.

“Okay my angel. I am ready when you are” I said

Vic nodded. The tears brimming in her eyes. “I love you Mommy” she said

“I love you too – with all my heart” I said as I injected the medication into my precious child’s body.

Vic looked at me with so much love in her eyes. She knew that the sedation stage had started with the increased medication.

Vic had spoken her final words. Vic knew that the medication would take effect and that her voice was silenced. My precious baby girl was ready to take the hands of her angels that would accompany her on her final journey. She had fought her battle.

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“I love you Mommy were the last words Vic ever spoke.

SET YOU FREE

You’re hanging on as night turns to dawn

I know you can’t stay and soon you’ll be gone

we both know it’s hard to let go; wherever you are my love won’t be far

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

There is no fear and your leaving is clear

we’ll still have our love it remains with each tear

I cry as you leave but I truly believe; as you leave my sight we’ll both be all right

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

though you have flown to somewhere unknown

we’re never apart ’cause you’re here in my heart

 your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

though I long for you to hold me; I need to set you free  http://myjourneysinsight.com/

These words belong to a dear WP friend, Judy Unger.

Textbook death 13.1.2013


I am cautiously optimistic that we have managed to stop the bleeding ulcer and that the new medicine regime has the vomiting under control.  Vic is still running a fever, her BP is dropping and her heart rate has stabilized in the 110’s.  She appears to be more stable than she has been in a couple of weeks.IMG_8501

This morning, after I washed her and changed her pyjamas she said “Mommy, I would like to go to the supermarket today…”

“Cool, what do you want to buy?”  I asked

“Tippex (correction liquid) for the boys and Stilpain and Syndol (Tablets)” she said.

“Okay….” I said

“But I think you will have to drive Mommy… I don’t think I should be driving!” Vic said

This incredible young woman just does not know how to die!  Vic had a good breakfast this morning.  Vic has not eaten since Christmas!

The boys are fleeing home.  Jon-Daniel has spent the past day and a half at Esther and Leon’s.  Jared went to his Dad’s.  I wish I too could flee.  For the first time in my life I have come to understand why families place their dying loved ones in hospital of in a Hospice In-Patient unit.  The waiting is gruelling and heart wrenching.  The rollercoaster of dying is horrific!

I previously researched the “length of dying”.

The Journey Begins: One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

#1: Ask For Forgiveness

           #2: Offer ForgivenessTask

           #3: Offer Heartfelt ThanksTask

           #4: Offer Sentiments of Love

           #5: Say Goodbye

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes”breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred. http://dying.about.com/od/thedyingprocess/a/process.htm

Vic has experienced severe delirium or rather terminal restlessness, which is apparently a fairly common symptom in many dying patients.

Some characteristics of delirium include:

  • Impaired level of consciousness with a reduced awareness of the surrounding environment
  • Impaired short-term memory and attention span
  • Disorientation to time and place
  • Delusions and/or hallucinations (believing and/or seeing things that are not real)
  • Uncharacteristic speech – may be really loud or soft, very rapid or slow
  • Fluctuating mood swings
  • Sleep disturbances – insomnia or reversed sleep cycle
  • Abnormal activity – body movements may be increase or decreased, very fast or slow

 

Terminal Restlessness

Terminal restlessness is a particularly distressing form of delirium that may occur in dying patients. It is characterized by anguish (spiritual, emotional, or physical),

restlessness, anxiety, agitation, and cognitive failure.

Terminal restlessness is so distressing because it has a direct negative impact on the dying process. We all want death to be a comfortable and peaceful experience, but if a patient is dying with terminal restlessness, her death can be anything but comfortable and peaceful. http://dying.about.com/od/symptommanagement/a/delirium.htm

Vic is on massive dosages of medication.  She is peaceful now.

On Monday, the 14th, Jon-Daniel will receive his school colours for academic achievements.  Vicky is determined to attend the ceremony.  We will find a way of getting her to the school to witness this achievement.  I believe it is the last goal she has.

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Vic and her pride and joy, Jon-Daniel 4.1.2013

So despite me saying that Vic does not know how to die she is actually having a textbook death…

“Promise me Mommy…..” 13.1.2013


ImageIt has been a long day.  Vic is in a drug induced sleep.  She looks so peaceful.  Vic is not anesthetized – she wakes when she is thirsty or in pain.  She has only urinated once in 24 hours.  Her end is near.

Vic is looking angelically beautiful.  Her skin is blemish free and almost transparent.  Her hair seems to have taken on a life of its own.  Her little hands look skeleton like.  Her body is wasting away and yet she remains as beautiful as ever!

I will not sleep tonight.  Many years ago I promised Vic that she would not die alone or in a hospital.  The time is near and I must honour this promise.

Earlier tonight she woke up and I wasn’t in her room.  She had a panic attack… Danie found her trying to walk down the passage.  She was holding onto the wall and tears were running down her cheeks.  “Mommy, I am scared…”

Something has started bleeding again.  Vic vomited and there are signs of old and new blood again.  “Look Mommy, my mouth is bleeding…” she said.

Vic is deadly pale and her body has involuntary “jerking” movements.   She is decidedly unstable.

“Mommy, you have to get me to the awards evening.  I don’t care how.  Promise me Mommy!!!”  She sobbed tonight.  Tomorrow I will speak to the school and make the arrangements.  It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony.  We will find a way.

We had a strangely “normal” day today.  Jared brought his gaming computer down from the study into my TV lounge.  It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it.  Today I welcomed it.  We needed to be close to one another.  I swam twice and we ate spaghetti bolognaise.

The boys have fear in their eyes.  I have fear in my heart.