Posted in A Mother's Grief, Bereavement, Chronic Pain, Death, Hospice, OI Treatment, Palliative Care, Terminal Illness

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell


It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks.  The patients have controlled pain and symptoms.  Many caregivers are also looking for a dumping ground.

Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..

It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.

It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.

Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?

Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?

They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?

I read the post of an amazing woman who is suffering from congenital heart failure.  She is in so much pain.  I cried when I read her post.  http://thedrsays.org/2012/11/08/  She replied to a question whether better pain control was possible…..  “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”

I thank God that we are able to make a difference!

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell

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Posted in Grief, Hospice, Palliative Care, Terminal Illness, Vicky Bruce

Hospice – friend or foe?


Hospice – friend or foe?

A blogger friend, Terry, is preparing for her beloved brother Al, to move home from an Assisted Living Facility. Al suffers from Parkinson’s disease and his general health condition is extremely precarious. Terry blogged: “I finally heard nothing from the phone. I had done everything I could find to do trying not to have to make the dreaded call to Hospice. I decided not to use the Hospice here in our county. I was very disappointed in them with the lack of care they gave to my father.” http://terry1954.wordpress.com/2013/06/17/al-and-hospice-meet/

Vic wrote this on her Face Book page on the 15th of May 2011… “Today Hospice came to access my Grandfather… They dripped him & made him comfortable. He has lost his swallowing reflex, sleeps most of the day, is completely bedridden & can barely talk… The suddenness of his deterioration is very difficult to comprehend. Could you all say a big prayer for my Gramps and especially my Mom, who lost her best friend of 25 yrs., age 51 to a heart attack last Tuesday. My Mother is one of the strongest, bravest people I know… How do we say goodbye, how do I take my Boys to say their Goodbyes tomorrow, how do we accept that this incredible man has such little time left regardless of the fact that we all know that its best for him. How can I be strong for my babies when my heart breaks all over again, every day when I see him…? Especially my Eunice Friends will all remember how desperately my Gramps and Gran loved and spoilt me and how VERY MUCH they meant to me… I don’t want to live without him even though I realise that that is extremely selfish, but I love my Grandfather so desperately, it’s not fair… All I ask for is compassion… Compassion for Gramps and my Mother… Thank you to everyone for all your love & support through everything… Love Vic…”

I am a great believer in the services that Hospices offer – worldwide. Hospice cared for my Dad in the last week of his life and for Vic the last 5.5 months of her life. My experience was positive.

The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. Seven years later the United States opened their first hospice facility in 1974. In America the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness. In my country only 5% of the dying actually have access to Hospice services.

The original idea of hospice is that once curative treatments are no longer effective, a patient enrols in hospice to receive comfort care. In our culture of “fighting” death illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.

Hospice care is for a terminally ill person who’s expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, however. Hospice care can be provided as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.

The benefits of hospice and palliative care

Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.

Source: National Hospice and Palliative Care Organization

Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.

When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice team often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.

The above is all well documented facts. Yet, when a family is faced with that terrible decision to call in Hospice, it is a deeply emotional decision. The phone call is a terrifying telephone call. This is evident from Vic and Terry’s posts…..

It made me realise what a massive challenge lies ahead of us in Stepping Stone Hospice.  We need to educate the community.  We need to dispel the fear of and for Hospice.

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Posted in Angels, Chronic Pain, Death, Death of a child, Family, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

It is okay to let go my angel child.


Today was an amazing day.  I desperately miss my beautiful child.

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I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan.  I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself

“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”

I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done!  I cannot undo the lie or my decision not to go…  I will however confess if I see him again.

My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed.  There was a comment on one of my first posts…I reread the post and the next and the next and the next…  I reread every one of the 335 posts I had written.

Other times, when I reread any of my journal entries or blog posts, I teared up.  Today I did not.  I was filled with relief.

I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity.  The more I read the more I realised how selfish I was being.  I took cognisance of the fact that in the early days of my blog I was careful with my words…  Today I realised how much was never written.  I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.

Today I was grateful that her suffering was over!

Does that mean I am “over” the death of my child?  No! No! No!  But I am at peace today that Vic is free of pain…

I missed her today as I will tomorrow, the day after tomorrow, next year and forever!

Vic and I
Vic and I

23.5.2012

At about 01:00 this morning Vic came into my room and got into bed with me.  Her tummy was cramping badly and she was scared.  She just lay with me for a long time, sobbing and talking about her fears.

E.H.Chapin said:  “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”… 

Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…

She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…

https://tersiaburger.com/2012/05/23/23-5-2012/

19.6.2012

Today was a day out of hell for Vicky.  She is deadly pale – she actually has a ghost like appearance.  She was so ill that she was unable to take pain medication and now her pain is out of control.

If I am having a hard time with this how must this poor child feel?  HOW CAN SHE CARRY ON???  https://tersiaburger.com/2012/06/19/37-years-on-death-row/

9.7.2012

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed with pain when I changed her.  Seeing my child sick and in pain, every day of her life , kills me.  I am dying, painfully slowly from my child’s pain. https://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/

12.8.2012  

Vic is still a very sick little girl.  The fact that her pain is better controlled does not mean that she is well.  If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death.  This week Vic’s amazing resilience again amazed me.  She is strong beyond comprehension!

My heart bleeds for her that her fragile body has once again failed her incredible will to live.  It is clear that she is merely holding onto life, as she knows it, with her fingertips……

I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved.  Vic will never function on any level again.  She is confined to bed relying on medication to keep her sane.  Maybe she will have a good couple of days here or there but her sentence has not been commuted. https://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/

Schedule 6 medication - 28 days supply
Schedule 6 medication – 28 days supply
Rest of Vic's medication - decanted
Rest of Vic’s medication – decanted

21.8.2012  

Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.

I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!

Today was a bad day – again.                                                              https://tersiaburger.com/2012/08/21/today-was-a-bad-day/

2.10.2012                

This evening she asked if she could have her injection a little earlier.  Jared is going back to theatre tomorrow morning to have his stent removed.  “Mommy, I need to try and sleep so I can be with my son tomorrow”

It is as if her wish triggered an avalanche of events.

Vic has been projectile vomiting since, and the perspiration is pouring off her.  Her heart is racing, and her blood pressure is all over.  Her abdomen is so distended and extremely tender on the abscess side!

Vic will not be at her son’s side tomorrow when he is readmitted to hospital.

https://tersiaburger.com/2012/10/02/mommy-i-need-to-try-and-sleep/

4.1.2013
4.1.2013

14.10.2012

Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next.  When she has a good and busy day, like yesterday, she pays the price for weeks.  Vic has not been out of bed today.  She is deadly pale and drawn.

It is hard for her not having privacy.  Vic is embarrassed that I hold her hair or wipe her face when she is vomiting.  Yet she needs me with her….

We are however in this together as a family. It is a rough journey for everyone.

“I am so sorry Mommy…” …it echoes through my heart.

“I love you my angel” I whisper….                                                            https://tersiaburger.com/2012/10/14/i-am-sorry-mommy/

12.11.2012

We have already had so many “extra” years.  But the fact remains that Vic is ill.  Today she is more ill than yesterday or even last week or last month.  It is not an UTI causing the pain and fever.  Her pain control is good enough to mask symptoms.  Waves of severe nausea and cramping remain…

I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another….  I have read that it feels “uncomfortable”.  It is called terminal agitation.

Only time will tell….  Time is all we have….

How did it get late so soon?                                                                         https://tersiaburger.com/2012/11/12/how-did-it-get-late-so-soon-dr-seuss/

21.10.2012

There have been times in the past couple of months that all Vic can do is lie in bed and breathe.  Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement.  There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milk shake.  She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused.  She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives.  Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.  https://tersiaburger.com/2012/10/21/vics-roller-coaster/

Mothersday 2012
Mothersday 2012

14.11.2012

Vic had a night out of hell!  The nausea was vicious and unrelenting.  Pain reduced Vic to a whimpering bundle of human flesh.

Vic’s palliative Care physician, Dr Sue, visited Vic this morning.  I think she was a little taken aback by Vic’s condition.

Sue is an amazing person.  She was so gentle with Vic.  Vic’s heart rate is fast and her blood pressure is 101/58.  Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly.  Her oxygen saturation levels are low – 90%.

Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.

https://tersiaburger.com/2012/11/14/a-night-out-of-hell/

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18.11.2012

Vic is having a lousy day.  She is exhausted and very swollen.  Despite the injections she has been nauseous all day.  This evening she had another vomiting bout.  Tomorrow we will see Dr Sue again.  Just maybe there is a 3rd anti-nausea type injection available

Vic also complained of a terrible “acidic” feeling.

I Googled her symptoms and found something that matches her new symptoms and blood test results.   Metabolic acidosis       https://tersiaburger.com/2012/11/18/worrying-doesnt-empty-tomorrow-of-its-sorrow-it-empties-today-of-its-strength/

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27.11.2012

Hospice has just fitted a subcutaneous driver – again.   Vic’s pain has spiralled out of control over the past couple of days.

Vic was in absolute excruciating pain during the night.  She battled to breath.

“Help me Mommy!  I can’t stand the pain anymore…”

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver.  “Oh Mommy, it is so sore.  Can you feel how sore it is?

As a little girl Vic used to believe that I could “feel” her pain…

“Feel how sore my toe is Mommy…”

As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease.  It cannot be so I look for a new spot on her bum to stick in a needle.                                                                                             https://tersiaburger.com/2012/11/27/mommy-can-you-feel-how-sore-it-is/

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3.12.2012 

Today I looked at her and fear struck at my heart.  My child is slowly slipping away.  Her little body is tired of the pain.  Her little organs are enlarged and diseased.  Her bones weak….

And the realisation hit home…. We need another miracle.

God please have mercy on my child.                                                         https://tersiaburger.com/2012/12/03/we-need-a-miracle-again/

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5.12.2012

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

 “Then I can die…”

https://tersiaburger.com/2012/12/05/next-year-my-mom-and-i-are-going-to-italy/

Cellulitis
Cellulitis

5.12.2012

12:42am and Vic is sleeping peacefully.  She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak.  The cellulitis on her arm has worsened despite the antibiotics.  It is now oozing pus.  Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics.  She had a violent vomiting spell just after she took her antibiotic tablets tonight.  It is very difficult for her to keep tablets and food down.  Despite the six-hourly anti-nausea injections she has….  And of course there is the problem of the poor absorption.

            “I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.            https://tersiaburger.com/2012/12/05/vic-is-sleeping-peacefully/

7.12.2012

Vic’s arm is very painful.  The antibiotics have not started working yet.  Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization.  Obviously Vic need intravenous antibiotics and her tissue is too poor….

Tonight Vic had one of her worst vomiting spells yet.  It happened after 02:00am and her dinner of 7.30pm had not digested yet.  It is obvious that the oral antibiotics are not being absorbed.  https://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/

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7.12.2012

I ran down the passage knowing that my poor child had vomited again.  The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets.  The food had not digested at all.  She was shivering and crying.

I cleaned up whilst Vic showered.

“I am sorry Mommy.  I am so sorry Mommy”… Vic sobbed.

“I can’t do this anymore Mommy.  I don’t want to live like this anymore….”

I eventually got into bed at 5am.  Three hours sleep used to be enough sleep when I was younger.  I think I am getting old.  I need more than 3 hours.  Maybe it is time to look at a night nurse…..

Hospice called early this morning.  The antibiotics have been changed to IM injections.  We cannot put up an IV drip.  Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained.  Vic refused.  “No more hospitals.  Mommy you promised…”

Monday morning Dr Sue will come to the house and do the procedure here.

https://tersiaburger.com/2012/12/07/the-night-was-not-over/

Vic and her Dad
Vic and her Dad

 

20.12.2012

Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

https://tersiaburger.com/2012/12/20/i-dont-want-to-die/

 25.12.2012

This is our last Christmas as a complete family.

Vic has been vomiting non-stop.  The acid has burnt the inside of her mouth.  Her derriere is so lumpy, black and blue from the constant injections.  Sr Siza popped in.  She examined Vic and started drawing up a Clopamon and Morphine injection.

“Please Sister, not my bum.  Please do it on my thigh.”

Vic no longer has an appetite.  She is sleeping at least 20 out of 24 hours.  Vic is very warm to the touch and appears flushed.  The thermometer reflects a temperature of 37 degrees C.

“Do you understand what your body is telling you Vic?”  Siza asked

Vic nodded and whispered “I do not want to die…”

https://tersiaburger.com/2012/12/25/a-time-to-be-born-and-a-time-to-die/

Jon-Daniel telling his Mommy he received his honours blazer
Jon-Daniel telling his Mommy he received his honours blazer

2.1.2013

Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.

“Something is wrong mommy.”

This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service.  She cried when she (again) named her pallbearers.  “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”              https://tersiaburger.com/2013/01/02/sisters-by-heart/

Jared just quietly sitting with his mommy
Jared just quietly sitting with his mommy

1.7.2012

Vic worries about the family’s ability to cope with her illness and eventual death.  When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…

Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”

No amount of reassurance will comfort her…Vic in time will have to let go.  She knows how deeply we love her and what void her passing will leave in all our lives.  If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?

Vic is quite hard on the boys (for their own good I must add).  She always says “I am your Mother not your excuse”

https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012/

And then on the 10 th of September 2012 I blogged the words that I want to repeat today…

So baby, if you read this post, know that we will miss you.  We don’t want you to leave us behind but we want your suffering to end.  We will continue to love you until we are reunited one day.  You have to trust us that you will always be “my baby” and the boys’ mummy.  But know that we will be grateful when your little body is freed from its pain and suffering.  You will be at peace…  You will not suffer more pain after death.  We will mourn you, but we will also be at peace…  We will think of you and smile…

It is okay to let go my angel child.

https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/

I promise I will go back to Alan.  I love you so much Vic!

Today I smiled.  It may have been a sad smile but it was the smile of a mother who is at peace with her beloved child being pain-free. 

The four of us on Christmas Eve 2012
The four of us on Christmas Eve 2012
Posted in Angels, Death, Death of a child, Family, Family Life, Grief, Osteogenesis Imperfecta, Palliative Care, Terminal Illness, Vicky Bruce

Can angels read?


Ah, I have been surrounded by angels this week!  Yesterday my friend Trix, just popped around with a beautiful bunch of roses…yellow and orange.  Vic would have loved the flowers and the gesture!  Vic’s eldest sibling too dropped off a beautiful bunch of flowers.
 Yesterday we burnt candles for Vic.  We all cried.  We all desperately missed Vic.
 Trix is a “new” friend.  She is part of the Stepping Stone Hospice steering committee.  Trix is funny, fit, bright, dynamic and very intelligent!  She is absolutely amazing, and no amount of effort or work for Stepping Stone Hospice is too much effort.  Trix posts these amazing comments on Facebook throughout the day.  Her posts are philosophical, funny and radiates her love of life and people.  
 Trix has become such an important part of my life in a short period of time.  She has a way of saying “Do what you must do to cope with today…”  She is not the huggy/kissy type friend… Under her chirpy exterior lies one of the most positive and honest people I have ever had the privilege of knowing.  
 Now my friendship with Trix is one of the few goods things that came out of Vic’s illness… If Vic had not dreamt of a Hospice and Trix had not lost a husband to cancer in a Hospice In-Patient unit we may never have met… 
 Another new friend is Wendie Deacon http://deaconfamilyblog.wordpress.com/an-angel-named-vic/  Wendie is a nice person who is truly gifted.  Wendie has challenges of her own and the way she has handles these challenges are so brave!  She messages and says such beautiful things of Vic… That on it’s only is enough to truly endear her to me.  Wendy wrote a beautiful poem for Vic…  Thank you dear Wendie for honouring Vic with your words!
 If only Vic could read Wendie’s beautiful poem… Do you think angels can read?  I wish Vic could read these words…

An Angel named Vic

Remembering Vic 3

 Who knew that you could fly dear Vic?

One day you sprouted wings

to soar.

Valiantly ascending heavenward

despite all you had endured.

At last the pain subsided

and all at once was gone.

You left a radiant legacy

that lovingly carries on.

A beautiful spirit in the sky.

Now free from sorrow, hurt and pain.

so many loved ones

here on earth

await embracing you again.

pink creme roses

Deaconfamilysentiments©

Wendie Jeanne Deacon©

Posted in Chronic Pain, Death, Death of a child, Family, Family Life, Grief, Osteogenesis Imperfecta, Palliative Care, Terminal Illness, Vicky Bruce

The Spoon Theory


Reblogged from http://barefootbaroness.org/2012/02/25/1343/.  I personally witnessed this theory in life with Vic…she lived the Spoon Theory every day.  Thank you BB!

A theory I live by, a theory that saves my life~ It’s also an incredible and thoughtful way to express to people in your world/life what having a chronic illness is like. They’ll get it much easier by relating to spoons of all things~

Thank you to the author of this piece Christine. You have helped me save so many relationships with people who just did not get it. If you have read this before Bravo, you are doing as much as you can to communicate what your life, days are like.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, The Spoon Theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point.

I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet.

I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away.

Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone.

Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry.

I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely.

Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”. After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine.

I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.

Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© 2003 by Christine Miserandino Butyoudontlooksick.com

 

Posted in Death, Death of a child, Family, Grief, Jared, Palliative Care, Terminal Illness, Vicky Bruce

Children are so fragile…..


IMG_7913
Christmas 2013

Day 22 has finally arrived.  Day 21 dragged on and on…  I waded through a haze of misery today.  Jared had an horrible day.  I could see he had cried.

Jon-Daniel has a friend sleeping over.  He is a young boy of 14 who lost his dad to a drug overdose a year ago.  I asked whether he had been for counselling.  He said he had but that it had not really helped.

“I had to get over it by myself” this old soul said.

“The shrink kept telling me I must forgive my dad.  I hated my father for using drugs.  So I stopped going.  He wasn’t listening to me so there was no point…”

I have to travel to an exhibition in the UAE from the 16th – 21st of February.  Upon my return the boys and I will go and see the Hospice psychiatrist again. I think we would have worked through enough grief to be able to cope with this part of our journey.

Children are so fragile.  On the surface they appear to be coping yet the pain lies shallow…

Last night Jon-Daniel cried.  Today Jared battled to breathe.

Posted in Chronic Pain, Daily Post 2012, Palliative Care, Terminal Illness, Vicky Bruce

I am scared


perfalgan_jg-1

Today was an horrible day.  Dr Sue spent a lot of time with Vic.  Siza (Hospice Nurse) was here too.

Vic’s BP is elevated and her heart rate fluctuates between 115 and 120.  Her breathing is laboured.  She appears to be a little jaundiced.  Sue says the vomiting is due to the kidney failure.

Tomorrow we will try and run some Perfalgan intravenously.  If only her veins were strong enough to tolerate an IV drip…

I am scared.

 

Posted in Chronic Pain, Daily Post 2012, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

“Next year my mom and I are going to Italy”


DSC00053

Sue saw Vic this morning.   Her liver is very distended and exerting pressure on the right lung.   I now have to use her little arms and legs as injection sites.  I HATE injecting her in the legs.  The doctor fears that she will develop abscesses on her bum.  The entire derriere area is full of lumps and bruises.  When I inject her the injection site becomes “lemon-peely”.  The immediate area swells and becomes hard.  Sometimes there is a fair amount of bleeding or serum loss.  Her tissue is POOR!!!

I discussed various central line options with Sue.  Vic refused point-blank to even consider it.  Vic has been mainlined so many times.  She always asked the anaesthetists to not tape her hair to the central line….  Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein….  Due to her poor tissue and bleeding tendencies it took two hours!

So we discussed the way forward.

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

“Then I can die…”

“We will find a way my love” Sue said…

“It is closer that she realises” Sue said to me at her car

Do I tell her?” I asked

“No, her body will…” Sue said

I cannot bear the thought of living without Vic.

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

Mommy can you feel how sore it is?


Published with Vic’s permission and knowledge.

Hospice has just fitted a subcutaneous driver – again.   Vic’s pain has spiralled out of control over the past couple of days.

Vic was in absolute excruciating pain during the night.  She battled to breath.

“Help me Mommy!  I can’t stand the pain anymore…”

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver.  “Oh Mommy, it is so sore.  Can you feel how sore it is?

As a little girl Vic used to believe that I could “feel” her pain…

“Feel how sore my toe is Mommy…”

As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease.  It cannot be so I look for a new spot on her bum to stick in a needle.

Vic seems calm now and the pain under control.  She is sleeping peacefully.  She has not vomited since this morning and managed to have a sandwich for lunch.

Please God let the subcutaneous driver work.  Please let the tissue hold up!   Please God!

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

“I shall continue the fight”


Vic when she was much healthier – 2011

Aarthi wrote Vic another beautiful poem.  Thank you Aarthi.  We needed your beautiful words to encourage and remind us today.  Vic is going through a particularly harrowing time.  She is suffering from severe nausea and the injections are no longer as efficient as before.  Poor little poppet!  She also broke another vertebra on Saturday when she put on her bra….

For the first time in Vic’s journey I am running scared of the amounts of pain medication her body needs.  This afternoon she was in excruciating pain – the pain was under the right-hand ribcage.  That is the liver.  Her eyes are slightly yellow and her skin a little sallow.

Over the weekend Vic walked into my TV lounge and I got such a fright when I saw her.  Her face was ghostly pale.  She actually looked like a geisha without the red lips and charcoal eyes.  Her eyes were dark from pain.

I had to phone Hospice this afternoon and ask them for more pain medication.  I am trying to work out what the effect of the increased medication will be to the toxicity levels in her body.  Hospice said we are at the 50/50 level.  The levels of medication can now be detrimental to her.  What do we do?

A calm courage waits in them
like a belief that breathes in her soul
those black pearls of mysterious 
power
glow like a beacon of hope
it is as if she is saying
i shall continue the fight
her will is deeper than she herself knows
that lustre speaks so much more
she is a gem as i can see
she is a warrior in her ways
that strength that originates in the depths of her
flows out and gives her eyes a brilliant grace…

https://tersiaburger.com/tag/httpsickocean-wordpress-comauthormysticparables/

http://sickocean.wordpress.com/category/poetry/

Posted in Daily Post 2012, Family, Grief, Terminal Illness, Uncategorized, Vicky Bruce

the weight in my bones.


Photo Credit: http://bike-pgh.org/bbpress/topic/why-isnt-there-a-bridge-pedal-pittsburgh

This beautiful poem was posted by Aarthi –  http://sickocean.wordpress.com   on 24SaturdayNov 2012.  Aarthi is an exceptional poet who often moves me to tears.  Thank you Aarthi for sharing your amazing talent with us.  I encourage everyone to visit Aarthi’s blog.  It is filled with so much raw emotion.  

The Weight In My Bones

like bridges made
of concrete ropes

ripping through my existence
keeping me earthly bound

so sturdy yet unchangeable a part
i am all heavy with matter contained

i try and bend yet
the break never happens

like a deeper strength holding me
pain prevents a shattering noise

the water in me weighs more
than what gives me a shape

this will is fragile
and a regret pulls me down

purposes unsolved
promises broken

a thousand images shattered
everything that i never said

all remains in unwalked places
the pores in my soul

each window was blocked
in persistent steps, in days and years and decades

leaving all weight like
ashes of a past trapped

so diseased i feel at times
lifeless like a fallen twig

and the feeling weighs me deep
deeper than skin and all the soft human matter

i feel it in my bones
like i am bond to a mountainous stone

so welded inside with a belief
perhaps i may never be able to sleep

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

So I don’t forget…


PHOTO IMAGE: http://www.blogcatalog.com/blog/just-a-lonely-girl/2

Lucinda commented today “Again, I can’t add anything on to what others have said; I don’t know how you have the courage to make these posts.”

I sometimes wonder why do I blog?  My whole being screams “so I won’t forget”.  I want to remember every day, every spoken word, every unspoken word, every feverish touch.  My friends have lifetimes ahead with their children…I don’t.  They have many more Christmases and birthdays to look forward to.  The chances are that their children will bury them… As a family we live one day at a time.  We are grateful for every morning when we wake up!

We have friends who lost their 17-year-old son almost 17 years ago.  I have not seen her in a couple of years.  When I last saw her she said that it does not become easier with time.  One just learns to cope with the pain and the loss.  My friend had to walk away from her son.  He was declared brain-dead after a drunk driver drove into the car transporting him to a rugby match….

She said “I touched his big feet.  I lay my head on his chest and I could hear his heart beat …. I walked away and his body was warm…”  Steven’s heart beats on in another person’s chest.  They generously, in all their pain, donated his organs.

Joan never had the opportunity to say “goodbye forever” to Steven.  She said “Goodbye, have a good game.  Love you!”  Joan treasures the last hug, kiss, laugh… She holds onto it.

I want to hold  on to every memory I possibly can.  As hard as it is I write so I will remember everything.

A lot of what I write I don’t post.  It is too raw.

 

Thank you for all your support


My baby girl in healthier days

It was with fear and trepidation that I started blogging on the 17th of May 2012.   I would be baring my soul……  I started blogging as a coping mechanismhttps://tersiaburger.com/2012/06/03/3-6-2012/

Over the past 5.5 months I have received many messages of encouragement, prayer, support, empathy and an outpouring of love.  Until now Vic’s final journey seemed so pointless and unfair ….

A million times I have asked myself WHY Vic?  Why has she had to travel this horrifically painful journey?  Why do her boys have to live and witness this pointless pain and suffering?

I realize now that Vic’s suffering has made us aware of the suffering of others.  In my country we have a terrible poverty problem and only 5% of people dying have access to palliative care.  Maybe Vic had to travel this terrible road so the world can become aware of  the 95%’s plight.

Tonight I was reading through the comments I received on my latest blogs.  I would like to share some of it with you.  I randomly copied some of the comments for you to read:

valeriedavies says:

November 14, 2012 at 01:47  (Edit)

 Tersia, I am still with you, and so touched that you are so conscious of all that is going on around you. I hope that as Vic surrenders, as she is already doing,, so do you, so that this stage of both of your lives becomes an experience you couldn’t have imagined. 

I hope as Vic begins to feel that gentle euphoria, you too get a share of it… the body and the mind are so complex and beautiful that not everything happens as we think it should, and I hope your grief is somehow eased and soothed. Thinking of you all, Valerie

PS I hope you don’t think this message is insensitive….

 sbcallahan says:

November 14, 2012 at 06:52  (Edit)

 In the final stages dying is something we do alone. i have often thought i would like to enter that final sleep while my husband is out. maybe that is just me and my desire to spare him more pain. you and vic are so close and i don’t think there is anything that can be said to make this more bearable for you. my heart aches for you, your husband, vic’s boys, her siblings and extended family. just remember it is easier to be the one leaving. we know that our suffering is going to end. it is your suffering we despair. whatever is meant to be will happen and yet i can’t help but hope for you to have enough time to be ready to let go

optie says:

November 14, 2012 at 07:29  (Edit)                                                                                                                                                                                    My thoughts and prayers are with you and the family. I pray that you will all have peace in your hearts and minds as you await Vic’s release from this terrible suffering.

Marita Meyer says:

November 14, 2012 at 08:23  (Edit)

 Ai Tersia! My heart goes out to you all. May Love sustain you to the end.

Andrew says:

November 14, 2012 at 08:51  (Edit)

 Amazing that you are sharing this difficult journey with all of us. This takes a lot of courage, and Vic is so lucky to have you (and the others) around her at this time.  And we are so lucky to benefit from your sharing, should (or when) we find ourselves in comparable situations.  But right now, my thoughts are with you and your family.

Ray’s Mom says:                                                                                                                                                                               November 15, 2012 at 00:53  (Edit)                                                                                                                                                 Tersia I wish you didn’t have this to bear, that your daughter could magically recover. God is with you and your daughter is so fortunate to have you near. Thank you for sharing this life experience.

optie says:                                                                                                                                                                                                                       November 13, 2012 at 07:46  (Edit)                                                                                                                                                                                                             I am so glad that Vic has been blessed with these “extra” years but I am sure she is aware that they come at a cost to her and the family. We are never ready to say goodbye to those we love dearly. Vic’s suffering is terrible and my prayer for her is that the pain control will be well managed till the end. My heart goes out to you as a mother and grandmother, I cannot imagine what it must be like for you to have witnessed all that Vic has been through.

Gillian says:                                                                                                                                                                                                                                               November 17, 2012 at 07:02  (Edit)                                                                                                                                                                                                        That is brilliant idea, is there anything I can do to help you get the (Hospice) centre up and running.

Barefoot Baroness says:                                                                                                                                                                                                              November 17, 2012 at 20:05  (Edit)                                                                                                                                             Can I just say I love you?

I also ran across this blog post Tersia and thought of course immediately of Vic. I would like to share the link.

http://sterlingsop.wordpress.com/2012/11/15/reflecting-at-the-end-of-life/

I have to thank you for bringing a subject most feel they cannot talk about out in the open in such a loving way ~

I would wish too be able to move forward with your goal with a hospice there in your area know If you need a latter writing campaign, or anything i can do from here please never ever hesitate to ask me please.
You are making a beautiful thing out of the tragedy of Vic;s life being cut far too short.

sbcallahan says:                                                                                                                                                                                                                                  November 16, 2012 at 03:06  (Edit)                                                                                                                                                                                                            it is only normal to want to hold on to your beloved vic. i do hope with all my heart that you can let her go if that is what she wants now. at this stage you know that her suffering is going to go on and no one is served by her continued pain.  this is the hardest thing you will ever do but you can find the strength to do it. wishing you peace of heart

Barefoot Baroness says:                                                                                                                                                                                                              November 17, 2012 at 17:38  (Edit)                                                                                                                                                                                      My God Tersia. I was instantly taken back to my mom who had stage 4 lung cancer that we were aware of just 2.5 months after diagnosis. I know the fear of the low oy2 count. I do know the fear of the oy2 therapy. What I did not know is the long lasting journey that you & Vic know.

Every post you share and I read I am left with this love for you both that seems to wash away all those things in life that matter not one bit. I have stopped sweating ALL the small stuff. There is something so loving & giving in your sharing with us, but more importantly Vic’s children are always going to have this. your journal of their mom’s life. I cannot think of a more loving, tender and generous thing for a mother and grandmother to do. my prayers and wishes are that this cathartic in a good way for you.

Although I am still behind in reading posts I have devoted m, myself to missing one of yours. Just may put me behind in commenting and I am wondering and hoping this does not cause you more pain having to come back to a memory of a few days ago. You tell me if so because I will understand and honor your wishes.

My gentle hugs to you both, Please give my love too. ~ BB
p.s. you will forgive me please..I cannot hit the like button on your posts.

Barefoot Baroness says:                                                                                                                                                                                                            November 17, 2012 at 19:41  (Edit)                                                                                                                                                                                               My Dear friend, You have choked me up with tears. You, who is going through so much have the sight to see beyond. I am humbled by your kind and generous words. I’d like you to know that any time you need a cyber-shoulder to lean on I would be honoured if you chose me at times, or all the time. You can even email me, you have my permission.

I am grateful Tersia for your words. I mean what I said that the small stuff is not on my plate anymore. If it arises I am able to just kick it to the curb with no further attention. You & Vic are enforcing this belief in myself every day Vic should know that all she allows to be shared is the most loving gift any human can give to another at this time when real wisdom’s surface. It’s amazing to me that at a time when it would be allowed to let her withdraw she instead reaches out to her children, her mom, and via your blog even her words.

Thank you so much for this message~ My love & gentle hugs to you both.

My Blog says:                                                                                                                                                                                                                                     October 20, 2012 at 00:43  (Edit)                                                                                                                                                                                              I too wish your child could be pain free. After I read your post I logged on to Facebook. My daughter posted about her migraine, and how her meds aren’t working. I too suffer from migraines and blame myself for passing them down to her. I wish I could help. All I can do is love her and be there when needed. Keep up your strength. We’re with you and your daughter in spirit

Peter Wiebe says:                                                                                                                                                                                                                                            October 20, 2012 at 10:53  (Edit)                                                                                                                                                                                                   May Jesus wrap his arms around your whole family and make Himself a real source of comfort for you all.

thedarkest13 says:                                                                                                                                                                                                                                      October 19, 2012 at 20:51                                                                                                                                                                                                                  It’s amazing that you have that openness with your daughter and the living fear and pain is going to be there. We are made to feel loss and sorrow. Especially when it’s our children. I am truly sorry for what is happening and watching is not easy. Just enjoy what time you do have and make the most loving memories you can. You both seem amazingly strong and I don’t even know you. The love you have transcends these moments.

Praying for you all.

 Aarthi says:                                                                                                                                                                                                                                              October 23, 2012 at 21:08  (Edit)                                                                                                                                                                                                                          the love you share

the words that say you care

those moments between you and your daughter
those drops of peace and happiness and joy
save them like drops of pearls
save them like diamonds rare
that is a form of unending love
that gives and gives and never expects
be there like a rock for your child
and i am sure she would win and survive
our world is one of miracles too
our world is an oasis rarities
and your child too shall her courage prove
just be there with a smile always
give her the courage to stand taller than before
she shall overcome her struggles soon
prove all wrong and herself right
she must win and win this time
make sure you are there to know
witness her strength, her wars, her fight
love can kill the worst of fears and
happiness shall soon return
changing the way she views her life…

with love and regards…

Dedicated to Vic and her wonderful Mom. :)

Peter Wiebe says:                                                                                                                                                                                                                                   October 22, 2012 at 01:14                                                                                                                                                                                                                           I so appreciate your openness. I pray that nothing will happen while you are away. I pray that Jesus will bring you comfort.

jmgoyder says:                                                                                                                                                                                                                                    October 22, 2012 at 02:48  (Edit)                                                                                                                                                                                                                      I am glad you are taking a break and that Vic wants you to.

Andrew says:                                                                                                                                                                                                                                                    October 22, 2012 at 03:51                                                                                                                                                                                                                  I always found the roller coaster metaphor powerful during my cancer treatment, recovery, relapse, treatment, and recovery again and I think you have captured it well with Vic. Good for you to get away for a week – caregivers sometime forget that they need care too. Best wishes.

Gillian says                                                                                                                                                                                                                                                             July 4, 2012 at 04:56  (Edit)                                                                                                                                                                                                   Dear Tertia, Do not be so hard on yourself. You have so much on your shoulders, you are allowed to have emotions, you are allowed to get irritated, What you need is a good, well deserved mental rest where you stop trying to work things out yourself …… A long much-needed look at the beautiful creations, topped off with some quality time with a friend. And trusting someone to assist with Vic for 2 days a month. She does not want to feel that she is the cause of you being house bound. Read Matthew 11:28-30. XXXXX

dlmchale says:                                                                                                                                                                                                                                    October 12, 2012 at 20:48  (Edit)                                                                                                                                                                                                                                                   I only bookmark a handful of sites that I “need” to follow; sites that do more than convey information – sites that cause an necessary evolution of my own humanity. Your site is at the top of that short list. I have so much empathy for what your family endures on a day to day basis, so much so that there are times I can’t even read another paragraph because it physically hurts to watch you and your loved ones afflicted so.

I know there are times when you feel like giving up. That is more than understandable and you should not run from those feelings….these types of reactions actually keep you sane. But know this: in your darkest moments, when all else seems insurmountable, ….you are not alone, in spirit, in prayer, in thought. You need never edit your writing to mask this incredible pain. In sharing such a violent and honest summary of your families pain, you bring a sense of belonging to something bigger to all those people who are enduring similar challenges.
I can’t tell you why the unfairness of it continues. But I can witness that you have been a champion of love and a gladiator of emotional support. You make a difference in this fight…a big difference.
We….the people who experience this on vicariously through your written word…also have an obligation, one that I commit to and cherish…and that is to be here for you when you need us.
You are an inspiration to me.

Dennis

micey says:                                                                                                                                                                                                                                                 October 23, 2012 at 21:12                                                                                                                                                                                                                                    Hi Tersia. I finally made it to your blog. I’m so sorry for the suffering your family is living through. I pray the Lord gives you strength to carry on each minute of the day. I pray He fills you with peace. I pray for miraculous healing for your sweet girl. I pray for the end of suffering. I pray you have a safe and wonderful trip to visit your family. I pray you receive many hugs from those you love. I pray you find rest for your weary soul.

sbcallahan says:

November 14, 2012 at 06:52  (Edit)

in the final stages dying is something we do alone. i have often thought i would like to enter that final sleep while my husband is out. maybe that is just me and my desire to spare him more pain. you and vic are so close and i don’t think there is anything that can be said to make this more bearable for you. my heart aches for you, your husband, vic’s boys, her siblings and extended family. just remember it is easier to be the one leaving. we know that our suffering is going to end. it is your suffering we despair. whatever is meant to be will happen and yet i can’t help but hope for you to have enough time to be ready to let go

I am so proud of my beautiful Vicky who has made a difference in so many people’s lives.  I am proud that is her most pain filled moments she can think of others who are less fortunate than she is.

I thank Vic for the vision of a Hospice in our city.  I want to thank everyone who has sent us messages of comfort, support, encouragement and prayers…  Thank you for walking with us on this difficult journey.  Thank you for the love you have shown.  Thank you for your prayers.

If  this post does not make enough sense please forgive me.  Today has been a very difficult one for Vic.  She is so tired.  I am just trying to make sense out of everything…..

The comments I extracted were absolutely random and does not minimize the value and comfort I experienced from the hundreds of wonderful messages I have received.  Most of my readers/followers have life-threatening diseases, lost a child, suffer debilitating pain of their own and yet they care!  Thank you. 

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

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

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

We both laughed and the moment was over…


Vic 25.6.2012

Last night was a better night.  The additional anti-nausea injections are working.   I hope the antibiotics are working.

Hospice measured Vic’s SP02 levels today and it is between 84 and 88%.  I don’t think that is a good sign.  Lani, second eldest stepdaughter, phoned me last night and told me that she had chronic ill patients whose SP02 levels were as low as 70%.  Lani is a physiotherapist.  I felt better after our chat.

Vic is extremely tired.  She went out for coffee with her best friend, who, very recently, was diagnosed with breast cancer.  Vic is a compassionate and caring person and wanted to support her friend emotionally!  When she got home she had a lie down – for the rest of the day.

Tonight I helped her bath and wash her hair.  Poor poppet, she is so exhausted after her bath that she had to lie down and is taking a nap again.  Her hair is still damp but we will dry it later.  I hope she has a better night but I am not very optimistic.

Whilst I was rinsing Vic’s hair she said “Mommy what do people do that don’t have a family like mine”

“Oh sweetie, it must be very hard for them…”

“Sometimes I feel guilty because I take up so much time, money and attention from you.  I have taken up your entire life…” Vic said

“But sweetie, we love you!  What do you want us to do less for you to feel better?  Tell me and we will do it!”

We both laughed and the moment was over…

A while back I made a decision.  We do not have our own Hospice in our suburb.  We fall under the auspices of the Houghton (Johannesburg) and are literally the orphans of the system.  I am going to start a Hospice in Alberton.

This Hospice will focus on palliative care and will bring purpose to Vic’s suffering.  It will be a monument of her suffering and her compassionate nature.

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

A night out of hell


Vic had a night out of hell!  The nausea was vicious and unrelenting.  Pain reduced Vic to a whimpering bundle of human flesh.

Vic’s palliative Care physician, Dr Sue, visited Vic this morning.  I think she was a little taken aback by Vic’s condition.

Sue is an amazing person.  She was so gentle with Vic.  Vic’s heart rate is fast and her blood pressure is 101/58.  Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly.  Her oxygen saturation levels are low – 90%.

Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch yet the thermometer only reflects a temperature of 36.8⁰.

I asked her what I was doing wrong because sometimes, when I inject Vic and withdraw the needle, blood and/or the injection fluid spews out!  Sue explained that it because Vic’s collagen is so poor…. In layman’s terms; the flesh does not “seal” when I extract the needle….  That is why the subcutaneous syringe driver did not work and blood and whatever else spews out.

Vic is such as gentle, beautiful, caring human being.  Last night when I gave her an additional morphine injection, in desperation, she said “Mommy, what do poor people do who have no access to pain medication?

As a layman with access to Google I Googled “low oxygen saturation” and nearly had a heart attack of my own.

Basically, a saturation of 97% of the total amount of hemoglobin in the body is filled with oxygen molecules. A range of 96% to 100% is generally considered normal. Anything below 90% could quickly lead to life-threatening complications. The margin between “healthy” saturation levels (95-98%) and respiratory failure (usually 85-90%) is narrow. If oxyhemoglobin is low (below 90%) inadequate amounts of oxygen will reach body cells!

As a rule of thumb, respiratory failure usually occurs when saturation (SpO2) falls to 90%, although some patients with chronic respiratory disease may tolerate lower saturations. http://www.favoriteplus.com/oxygen-saturation.php

Every time your blood oxygen level falls below 92% saturation your body suffers drastic consequences Insufficient oxygen level is an immediately life threatening issue. http://www.heartfailuresolutions.com/34/oxygen/low-oxygen-levels-how-low-is-too-low-and-should-you-worry

By tomorrow afternoon we should start getting the results in from the blood tests and blood gases.  In the interim Sue has increased the amount of intravenous anti-nausea medication as well as the pain medication.  Dr Sue will make a call tomorrow whether Vic should go onto oxygen or not.

We have cancelled all our vacation plans.  We desperately wanted to take the boys away for a couple of days to give them a break, but it is not possible.  We will have the best Christmas ever.  A Christmas filled with love and togetherness….  Maybe our last.