Posted in A Mother's Grief, Angels, Bereavement, Death, Death of a child, Family, Family Life, Vicky Bruce

Godliness of a mother


“The woman who creates and sustains a home and under whose hands children grow up to be strong pure men and women, is a creator second only to God”   Helen Marta Fiske Hunt Jackson

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Vic raised two magnificent young men.  They have beautiful manners, they are respectful to their elders and especially women.  They are gentle, compassionate and like their mom they speak badly of no one.  They have a wonderful set of values and morals.

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Vic had so little time to raise her boys.  She spent most of their lives in a hospital bed or in bed at home.  The boys grew up doing their homework in her room, helping her cook… Jared was four years old when he made his (and his brothers) bed.  “Because Mommy’s back is sore”…

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The boys are old souls.  They have witnessed so much pain and suffering… They have lived with, and cared for, a dying mother.

There was almost a Godliness to the way Vic raised her boys.  Vic taught the boys to love their Lord.  It shows in their pure hearts.  Her legacy lives on through and in her boys.

I am so proud of you my Angle Child.  You did good!

 

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

The night was not over…


“You ain’t heavy, you are my Mother”

Early this morning I posted “My child is in a pain-free sleep.  I will now try to sleep.  “Tomorrow may be a rough dayhttps://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/  not realising that the night was not over yet.

My poor child had a horrible night.  The pain was under control, but her arm still throbbed, and she was restless.  I was busy with some Christmas gifts.  I tried to go to sleep, but gave it up as a bad job.  So I wrote a post.  At 2am this morning I had just “published” when Vic rang the intercom.

The intercom is her 911

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.

Yesterday I spoke with a wonderful young man, Marchelle.  I was privileged to have worked with Marchelle worked for a couple of years.  Unfortunately we lost a large contract and had to go our separate ways.

Marchelle has a pure heart.  He is selfless and one of the very few people I trust with every fibre of my being.  Marchelle has never let me down.

Marchelle told me he is following my blog.  He asked me whether I thought the situation is truly as bad as Hospice say it is.  I said I did.

He asked what is different this time? You have been told so many times that Vic was dying, and then she bounces back…

I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back.  Organ failure is organ failure…. Talking to him I thought “Marchelle is right!  Why am I giving up this time?  I have NEVER given up on my child, and I will not give up now.” 

I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping.  I am so tired that I am allowing the negativity of the situation to get to me.  It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.

Marchelle said he prays for us every day, and I believe him.

This morning Vic took her precious boys to pick up their report cards.  Both Danie and I said we would take them.  Vic very politely refused.  She wanted to take her boys.  She wanted to be first to see their marks.  Maybe for the last time…

She was absolutely delighted with their marks.  The boys had worked hard and deserve every mark they received.  I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.

We are so proud of them.  They are brave kids.

On Sunday we will celebrate my birthday.  On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids.  Simone still believes in Santa!  On the 25th we will go to Church.  On the 26th we will celebrate Jared’s birthday.  On the 27th we will start planning our New Year celebrations.

Forward planning is “The power of positive thinking”…

Vic and her baby Jon-Daniel..
Vic and her baby Jon-Daniel..
Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Morphine extends life!


Vic and I in healthier days

The downward pain spiral has already begun.  Vic is quite swollen and had a bad day.  This afternoon late she perked up and has only had one vomiting spell tonight.

As Sr Siza was examining her this afternoon and taking her vitals I remarked on the swelling.  “It’s the organs shutting down” she whispered….

“I am scared Siza.  I administer such massive dosages of medication to Vic… What if I kill her?” I asked over a cup of tea.

“Don’t worry my love.  You won’t.  There is no upper limit to the amount of morphine that Vicky can go on… As long as we titrate the dosages she will be fine.”

So I Googled Morphine+dosage+death and one of the first articles that came up (and I could understand) is “When Morphine Fails to Kill”  By GINA KOLATA

 Proponents of assisted suicide often argue that when a doctor helps a patient who wants to die, it is no more ethically troubling than when a doctor kills a patient slowly with morphine, often without the patient’s knowledge or consent, a medical practice these proponents say is increasingly common.

So why forbid doctors to prescribe lethal pills that could allow patients to control how and when they die? There is no question that doctors use morphine this way. “It happens all the time,” said Dr. John M. Luce, a professor of medicine and anesthesiology at the University of California in San Francisco. And there is no question that most doctors think that morphine can hasten a patient’s death by depressing respiration. But Luce and others are asking whether morphine and similar drugs really speed death.

Experts in palliative care say the only available evidence indicates that morphine is not having this effect. Dr. Balfour Mount, a cancer specialist who directs the division of palliative care at McGill University in Montreal, firmly states that it is “a common misunderstanding that patients die because of high doses of morphine needed to control pain.”

 No one denies that an overdose of morphine can be lethal. It kills by stopping breathing. But, said Dr. Joanne Lynn, director of the Center to Improve Care of the Dying at George Washington University School of Medicine, something peculiar happens when doctors gradually increase a patient’s dose of morphine. The patients, she said, become more tolerant of the drug’s effect on respiration than they do of its effect on pain. The result, Dr. Lynn said, is that as patients’ pain gets worse, they require more and more morphine to control it. But even though they end up taking doses of the drug that would quickly kill a person who has not been taking morphine, the drug has little effect on these patients’ breathing.

Dr. Kathleen Foley, who is co-chief of the pain and palliative care service at Memorial SloanKettering Cancer Center in New York, said that she routinely saw patients taking breathtakingly high doses of morphine yet breathing well. “They’re taking 1,000 milligrams of morphine a day, or 2,000 milligrams a day, and walking around,” she said.

The standard daily dose used to quell the pain of cancer patients, she added, is 200 to 400 milligrams. Dr. Lynn said she sometimes gave such high doses of morphine or similar drugs that she frightened herself. She remembers one man who had a tumor on his neck as big as his head. To relieve his pain, she ended up giving him 200 milligrams of a morphinelike drug, hydromorphone, each hour, 200 times the dose that would put a person with no tolerance to the drug into a deep sleep. “Even I was scared,” Dr. Lynn said, but she found that if she lowered the dose to even 170 milligrams of the drug per hour, the man was in excruciating pain. So to protect herself in case she was ever questioned by a district attorney, she said, she videotaped the man playing with his grandson while he was on the drug.

On rare occasions, Dr. Lynn said, she became worried when she escalated a morphine dose and noticed that the patient had started to struggle to breathe. Since she did not intend to kill the patient, she said, she administered an antidote. But invariably, she said, she found that the drug was not causing the patient’s sudden respiratory problem.

One man, for example, was having trouble breathing because he had bled from a tumor in his brain, and an elderly woman had just had a stroke. “In every single case, there was another etiology,” Dr. Lynn said. “Joanne’s experience is emblematic,” said Dr. Russell K. Portenoy, the other cochief of the pain and palliative care service at Memorial SloanKettering Cancer Center.

 He said he was virtually certain that if doctors ever gave antidotes to morphine on a routine basis when dying patients started laboring to breathe, they would find that Dr. Lynn’s experience was the rule. Patients generally die from their diseases, not from morphine, Dr. Portenoy said.

The actual data on how often morphine and other opiates that are used for pain relief cause death are elusive. But Dr. Foley and others cite three studies that indirectly support the notion that if morphine causes death, it does so very infrequently. One study, by Dr. Frank K. Brescia of Calvary Hospital in the Bronx and his colleagues, examined pain, opiate use and survival among 1,103 cancer patients at that hospital, which is for the terminally ill. The patients had cancer that was “very far advanced,” said Dr. Portenoy, an author of the paper. But to his surprise, he said, the investigators found no relationship between the dose of opiates a patient received and the time it took to die. Those receiving stunningly high doses died no sooner than those taking much lower doses.

Another study, by Dr. Luce and his colleagues in San Francisco, looked at 44 patients in intensive care units at two hospitals who were so ill that their doctors and families decided to withdraw life support. Three quarters of the patients were taking narcotics, and after the decision was made to let them die, the doctors increased their narcotics dose. Those who were not receiving opiates were in comas or so severely brain damaged that they did not feel pain. The researchers asked the patients’ doctors to tell them, anonymously, why they had given narcotics to the patients and why they had increased the doses. Thirty nine (39%) percent of the doctors confided that, in addition to relieving pain, they were hoping to hasten the patients’ deaths. But that did not seem to happen.

 The patients who received narcotics survived an average of 3 1/2 hours after the decision had been made to let them die. Those who did not receive narcotics lived an average of 1 1/2 hours. Of course, Dr. Luce said, the study was not definitive because the patients who did not receive drugs may have been sicker and more likely to die very quickly. Nonetheless, he said, the investigators certainly failed to show that narcotics speeded death.

Dr. Declan Walsh, the director of the Center for Palliative Medicine at the Cleveland Clinic, said it had been 15 years since he first questioned the assumption that morphine used for pain control killed patients by depressing their respiration. He was working in England at the time, and many doctors there were afraid to prescribe morphine or similar drugs for cancer patients, Walsh said, because “they were afraid they would kill the patients.”

So Walsh looked at carbon dioxide levels in the blood of cancer patients on high doses of morphine to control their pain. If their breathing was suppressed, their carbon dioxide levels should have been high. But they were not. Nonetheless, Walsh said, the idea that morphine used for pain relief depresses respiration is widely believed by doctors and nurses because it is “drummed into them in medical school.” So, said Dr. Susan Block, a psychiatrist in the hematology and oncology division at Brigham and Women’s Hospital in Boston, it is not surprising that many doctors try to use morphine to speed dying. “There is more and more evidence most of it unpublished, but it’s coming, I’ve seen it that physicians, in addition to wanting to ease patients’ discomfort, also want to hasten death,” Dr. Block said. “Everyone is feeling guilty.”

Source: NY TIMES July 23, 1997  http://www.chninternational.com/Opiods%20for%20pain%20do%20not%20kill.htm

No more pain angel.

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

Final words….


Wedding day

This weekend I again realized that there are people who are going through worse hardships than we are….

Tom, our son-in-law is a lovely, warm and hospitable man.  He has made a huge difference in our lives.  He is brutally honest as an individual.  He has embraced the family and fulfils his role within the family with enthusiasm.   Tom is bright – very bright!  As a computer nerd he lives on STRONG coffee.   He loves playing cricket with the boys.

He is Lani’s soul mate and a wonderful back-up father for the girls.

A couple of months before Tom and Lani got married Tom’s dad died from a heart attack.   A year ago Tom’s sister was travelling from Cape Town with her Mom.  Tom’s mom had been diagnosed with breast cancer and had her first chemo treatment that morning.  A tragic accident…a car landed on top of theirs and Tom’s sister was killed.  His Mom was seriously injured.  Her accident injuries healed in time.

This weekend Tom travelled to Cape Town to say goodbye to his Mom…  She is dying.   Today my dear son-in-law had to sit next to his mom’s bed and speak his final words with her.   In my heart I can see him standing in the door of her room and looking back one final time….It is extremely unlikely that he will see her again….  What thoughts went through his Mom’s mind?  What did she see?  Did she see her adult son she must be so proud of or did she see her little boy playing in the sand?

I kept thinking how unbelievable privileged we are.  We are able to be with Vic every day, every second of the day if we chose…  There is no need for cramming in “final words”.  Every day we have new words, reassuring words, words of love and support.  I cannot imagine having to get up from Vic’s bed, saying goodbye and having to walk away!

Tomorrow morning Tom will wake up; go to work…his thoughts will be filled with thoughts of his mom.  How many times an hour will his mind turn to his mom and her final journey?

My poor Tom!

Travel well dear Marna….

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

Signposts for Dying


Yesterday I posted on “time”.  Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying 

Some of the stages of dying start to be discernible a few months before death occurs.  

 Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm. 

 Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods.  This year she relived every minute of her father’s final journey… Vic has started living in the past.  

 I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

 Vic no longer eats big meals and I seldom hear her say “I am ravenous”.  Due to the 81 abdominal surgeries and multiple bouts of septicemia  Vic’s absorption is very poor.  (Poor absorption = BIG appetite!)  Vic used to have the appetite of a horse – always nibbling and scrounging for food.  Now it is sheer discipline that keeps her eating.  She knows she cannot have medication without eating first.  Strange thing is that she is not really losing weight.  Hospice says it is due to the high levels of cortisone she takes…  I have been told by Hospice not to worry about her loss of appetite.  Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

 The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria.  Our bodies actually start relaxing into this stage of dying. 

 Vic still drinks a fair amount of coffee.  She used to drink it warm but now she dozes off before she has finished her cup of coffee.  She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep.  It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side…. 

 Reduced appetite and increased sleep is called “Signposts for dying”.

 A couple of weeks ago Vic was very emotional.  She would tear up without any reason.  This stage has passed.  It is as if her tears cleansed her soul. 

 Vic is battling with loneliness.  She hates being alone.  If she could she would have one of us around her all the time.  She often complains that we do not spend time with her.  We do spend a lot of time with her.  She just dozes off and then we leave to carry on with our lives…  The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

 Vic is not in good shape at all.  She is suffering severe cramping and nausea that is not responding to any of the medication.  The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning.  She also suggested that Vic be admitted to Hospice In-Patient’s.  Vic and I firmly declined…

 It is obvious that Vic has one or other infection.  I think it is the abdominal sepsis.  She seems flushed and feels hot and cold.  The thermometer does not reflect her running a fever.  This is obviously something as Ceza mentioned it to the doctor.  She explained that this happens when the auto-immune system is compromised.  I have tried to Google it but without too much success.  I will ask the doctor tomorrow morning.

 Vic is in terrible pain tonight.  I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even.  She whimpered in her drug-induced sleep….

 I know the shutting down process has started.  Not because Hospice told me but because Vic told me. 

 Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!

 

 

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

Endometriosis, abdominal surgery, fistula and adhesions…..


Vic has had 81 abdominal surgeries in her life.  Vic’s first abdominal operation was at the age of 10 when she had her first batch of endometrioses surgically removed.

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the peritoneum which lines the abdominal cavity. The uterine cavity is lined with endometrial cells, which are under the influence of female hormones.

Endometriosis is typically seen during the reproductive years and it has been estimated that endometriosis occurs in roughly 6–10% of women.

About 93%–100% of people undergoing abdominal or pelvic surgery will form adhesions, but luckily most do not have complications of the adhesions.  Adhesions may also result from infectious processes, such as pelvic inflammatory disease.

Abdominal adhesions are bands of fibrous scar tissue that form on organs in the abdomen, causing the organs to stick to one another or to the wall of the abdomen. Scar tissue most commonly develops after abdominal surgery, in which organs are handled by the surgical team and are shifted temporarily from their normal positions. It can also form in people who develop peritonitis, an infection that has spread to the membrane that covers the abdominal organs. Vic has developed peritonitis on numerous occasions.  Peritonitis usually occurs after appendicitis or another abdominal infection such as Vic first developed after her blotched surgery when her small bowel was perforated.  https://tersiaburger.com/2012/10/19/the-albatross/

There is no way to prevent adhesions. Abdominal adhesions can be treated, but they can be a recurring problem. Because surgery is both the cause and the treatment, the problem can keep returning. For example, when surgery is done to remove an intestinal obstruction caused by adhesions, adhesions form again and creates a new obstruction in 11% to 21% of cases.  http://www.intelihealth.com/IH/ihtPrint/WSIHW000/9339/9394.html?hide=t&k=basePrint#prognosis

Fibrous Bands of Adhesion – Bowel obstruction

In most patients, adhesions do not cause health problems. In a small number of people, like Vic, the fibrous bands of scar tissue block the intestines either completely or partially. This blockage is called a bowel obstruction, and it leads to death in about 5% of cases. Sometimes, an area of intestine that is affected by adhesions can keep becoming blocked then unblocked, causing symptoms to come and go. In about 10% of small-bowel obstructions, a portion of the bowel twists tightly around a band of adhesions. This cuts off the normal blood supply to the twisted bowel, causing what is called strangulation, and that section of bowel begins to die. When this emergency happens, the person must be taken to surgery immediately. The death rate is as high as 37% in people who develop strangulation.

Literally meters, of different parts of Vic’s intestines, has been removed.  Every time Vic had an obstruction she had surgery.  Vic has needed skin grafts to cover open wounds.  Vic developed numerous gastrointestinal fistulas.  Due to the extremely thin layer of skin covering her intestines the intestines have chaffed through.  Vic would lose up to 7 liters of feces  per day, through the fistula.

Now we cope with partial obstructions on a weekly basis.  We battle with poor absorption because Vic has lost critical parts of her intestines.  Vic will not have further surgery.  My child has been to hell and back.

No more surgery.

Ready for theater….again…..

 

 

 

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

One bloody tear


Photo courtesy of http://500px.com/photo/5192248

Thirteen years ago Vic’s dad was involved in a bad car accident.  He was airlifted to a hospital with an excellent trauma unit.

When Vic and I arrived at the hospital we were greeted by a trauma councillor.  He explained that Tienie was being stabilized but that the situation was grave….  It was terrible seeing Tienie lie in the ICU ventilated, swollen, battered and bruised.

The news was not good.  Tienie would be a quadriplegic if he survived….

Tienie was one of the most vibrant, energetic party animals I ever knew.  We were childhood sweethearts.  We started dating when I was 13.5 years old.  I have photos of us dancing at his 16th birthday party.  We got married very young.  We got divorced very young.  We remained friends and business partners until his death.  Tienie was an accountant by profession and hated every second of it.  He turned to property development and went from one cash flow crisis to the next.  He was one of the most intelligent people I ever met but also one of the stupidest!

Tienie was a giver… He would give away the clothes off his back.  He hated sleeping.  He said it was a waste of time.  Tienie never cried… he mourned Vic OI diagnosis in a different way.  Some men love cars…Tienie loved women.  He was a loyal friend.  He was the world’s friend.  Everybody loved Tienie.

The day after the accident I had some time alone with him.  I spoke to him and told him that I had forgiven him for cheating on me and finally leaving me.  Standing next to his bed I realized for the first time that I had also caused him a lot of pain!!  I asked him to forgive me.

I also told him that I knew he was worried about his situation at that moment in time.  All he had to do was pray to God and ask him for forgiveness.  I held his hand and prayed for him.

A single bloody tear ran down his cheek.  I knew he had heard me and that all was okay….

The machines went crazy and I was asked to leave.  I knew Tienie was gone as I walked out of the ICU….

Six days later Vic signed the consent forms for the machines to be switched off.  She also signed the consent for Tienie’s organs to be donated.  That is what he would have wanted.

Tienie was buried on his birthday, the 10th of November 1999

Thirteen years later my child still mourns her father.

I know that when the time comes Tienie will be there to take Vic’s hand to lead her towards the light….

And Hospice says “Go!”


 

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South Africa is advertised as “Sunny South Africa” with beautiful white shores and blue skies.  Barbeque is our national pastime.  Today is an overcast day.  It is as if Mother Nature is preparing me for England’s grey skies, drizzling cold and wet weather.

By now I assume everyone has concluded that I got the go-ahead from Hospice to travel!

I am hopping, skipping and jumping with excitement.  I cannot wait to see my UK babies.  Not only see them but hug, kiss and hold them.

Vic is insisting that I go.  We are both fearful but I also realise that I desperately need a break.  There is never a perfect time.  Vic is very swollen and not well at the moment.  She is partially obstructed but we will clear it by Thursday.  The Hospice Sister will pop in every day to evaluate and monitor her and report back to me.

In the words of the Hospice Sister Ceza:  “Things are slowly going downhill.  Go now.  You need your strength for what lies ahead”.

Timing, as always, is an issue.  Vic is well enough for me to travel but on Monday it is little Yuri (youngest grandson’s) school concert, Simone (2nd eldest granddaughter) birthday and Lani’s (2nd eldest stepdaughter) 40th birthday in the week that I will be away.  I have still not seen Liza and Adrian…. On the other hand I will get to see the girls “trick or treat”, Chloe is on a week’s school holidays and I will watch the extravagant Guy Fawkes fireworks displays and bonfires being lit… I feel so selfish and caught between two fires.

I am scared for Vic, worried about the boys, guilty for Yuri, Simone and Lani and excited as can be about seeing Danie, Michaela and the girls.    On the one hand I feel so selfish.  On the other hand I realise that I need a break.  It has been a year out of hell!  On a daily basis the demands on me are increasing.  It sounds as if I am having a pity party and/or trying to justify my decision to go to the UK….Yes I am!

The Hospice Nurse will start on Wednesday evening.  I must shop for groceries and ensure all meds are in stock.  I must write up a medication schedule for the nurse….

Got to run!  Lots to do!  I will make it up to everyone….I hope!

I will only be 14 hours away from Vic….

 

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

Vic’s Roller Coaster….


 

 The Voyage
Located at Holiday World in Santa Claus, Indiana, this roller coaster is a wooden hybrid consisting of a steel structure and wood tract. The lift goes up 163 feet, before falling 154 feet, then up and down 107 feet, and once more up and down 100 feet. Not only that, it goes through five tunnels, and it is the second longest wooden roller coaster in the world with a run of 6,442 feet. The top speed for the roller coaster is 67.4 miles per hour, third fastest in the world among wooden roller coasters. If the drops and trips through the tunnels was not enough to make you cringe, there are three 90-degree bank turns. http://roadtickle.com/worlds-scariest-roller-coasters

The life of someone who is chronically ill can be equated to being on a roller coaster ride.  Physically (and emotionally), you can be up and hopeful one minute and down and despairing the very next. The illness inevitably takes unexpected and unpredictable turns. One disease can dispose you to or give rise to another. Cortisone suppresses the immune system and is used to treat inflammation.  Cortisone weakens Vic’s bones further and has resulted in her developing Addison’s….This is frightening.

Every chemical that enters your body has a side effect.  Correct and adequate pain control, a healthy diet, balanced lifestyle is needed to minimize the effect of the illness on your daily life.  Living with illness affects every part of your life and every significant relationship you have.

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 milkshake.  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”.

Danie and I planned to go to dinner on Friday night.  Vic was not well so we decided we would go on Saturday.  On Saturday Vic had another lousy day.  She fluctuated between being confused and weepy.  She was up and down like a little jack in the box.  By Saturday night she was asleep on her feet.  The intestinal cramping kept her awake.  She was weeping from pain and frustration.

Last night Vic cried “Mommy, I am such a burden.  You don’t have a life because of me.”

“Sweetie you are not a burden.”

“I am” Vic sobbed.  ”You can’t even go to dinner with your husband because you don’t want to leave me alone.”

“Sweetie, it was our choice to stay home”  I said

“But I have ruined your life” Vic cried….

Jared spent the weekend with a friend.  The child never goes out.  The two of us are too scared to leave.  I suppose we have become overprotective control freaks.

I have come to realize that I must take a break. It is not only for my own sanity but for Vic and Jared’s sake’s too.  My protective behavior is a bad example to Jared and is causing Vic distress.  My entire family is concerned that I will “crack” under the pressure.

I hope to fly to England for just over a week to spend some time with my UK children.  I have so much to arrange.  I must sort out the toy cupboard in the girls’ bedroom to make space for a nurse; I must appoint a nurse; get adequate medication in; get Hospice to okay the trip; buy groceries to see the family through and cook a couple of emergency frozen meals..

Vic’s symptoms wax and wane on this roller coaster ride of hers. Her illness is slowly depleting her energy reserve. A cold or infection can overwhelm her ability to fight it and her overall health and functioning can change dramatically – very suddenly. There will come the day that we will not be able to clear the partial obstruction or to contain the infection…..

I hope that it will not happen whilst I am away.

 

Posted in Uncategorized

Thank you for memories


Jon-Daniel has had the best birthday ever!  Yesterday he left school early for extra time with his Mom, we had a fun family lunch and then there was a cake and tea last night at his Dad’s. 

Today it was his birthday party and Vic was well enough to enjoy it!  It was a glorious summer day; the pool was a sparkling blue, the trees and grass a vivid green….  The sun shone and sparkled on Vic’s hair as she stood watching the children play. 

Vic helped laying out the table, she bought helium balloons, she refused to sit or lie down.  She insisted on carrying Jon-Daniels birthday cake!  She started the singing.  She laughed and glowed with pride.  For a single day Vic looked just like a normal, healthy Mommy.  I could hear her heart crying…. “this is the last birthday I will have with my son”

I thank God for a glorious day and memories.  I thank God for granting Vic the joy of celebrating her baby boy’s 14th birthday.

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Happy birthday my precious son!
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Miracle Mom

 

 

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

I am taking a break from your blog


Jared and Vic lighting Jon-Daniel’s 13 Candles 12.10.2011

 

People have said “I am taking a break from your blog.  It is too difficult for me to read” or “Some days I just cannot read your blog”….. Listen up people on the 20th of July 2012 I blogged “When we first received Vic’s death sentence there was an absolute outpouring of love.  But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives.  My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace.  Well, this time you cannot hurt us because you are faceless.https://tersiaburger.com/2012/07/20/thank-you-god-20-7-2012/

My best friend says my blog is sad and I suppose it is.  The blog however mirrors my deepest feelings.  It is our journey and you (the royal you) don’t have to feel you are under an obligation to read my “sad” blog.

Well today I will however try and blog some happy moments.  Jon-Daniel, Vic’s youngest son, turns 14 on Friday the 12 th of October.  We are busy arranging his birthday party.  He wants a pool party but I don’t think the weather will co-operate!  Weather predictions are 80% chance of rain on Saturday!

Vic was born on one of the coldest days of the year.  I remember sitting hunched up in front of the fireplace saying “if ever I am going to have this baby it is going to be tonight!”  I finished work that day and was looking forward to my maternity leave.  I had weird little contractions at work but paid no attention to it.  My back was killing me!  But I had work to finish and the staff held a little “stork party” for me.  I lost my temper with someone at work and yelled at him!  I ate ice-cream in front of a heater and craved a milkshake!  It was such a busy day.

My case had not been packed as Vic was only due a month later….In true Vicky form she decided “enough is enough” and I went into labor that evening!  Vic is a “lingerer” and was born 27.5 hours after I went into labor.

When I was admitted my mother-in-law accompanied me.  She was plumpish with a youthful face.  The maternity staff thought she was being admitted…. I only gained 8 pounds (3.64 kilograms) and barely looked pregnant.  I still wore all my normal clothes.

When Vic was born she was so perfect!  Her father said “Oh, look she has my toes!”  She was heartbreakingly beautiful with a mop of black hair!

Some facts – Vic weighed in at 2.2 kilograms.  She was a mere 48 cm tall.  She was tiny but so strong and perfect!  She was the best “pooper” in the maternity ward.  Vic was a bottle baby and her preemies clothes were too big for her.

For the first two months of her life I was too scared to bath her.  My mom did.  Vic walked at 17 months but had her first tooth at 3 months.  She had her first fracture at 3 weeks – sucking her thumb!

Vic was diagnosed at 18 months with Osteogenesis Imperfecta.  By her 4th birthday she had fractured 40 bones.  Vic spoke her first words before she could sit and built basic wooden puzzles before her 1st birthday. Vic spoke Afrikaans and English fluently by the time she was 3.

At the time of diagnoses the doctors said she would not live to the age of 12.  Well she certainly showed them!

Every single birthday of Vic’s we have had lousy weather!  It was always the last cold before spring sets in on the 1st of September.

Vic does not have a good sense of humour.  Wait, let me rephrase that – Vic cannot tell a joke!  She loves a good laugh.  She has a beautiful smile that reaches her eyes.  Her dark brown eyes are truly the mirror to her soul.  Her eyes are now either clouded from morphine or pain.  Her eyes now “tear up” even when she is not crying.

Vicky is a people pleaser.  She will do everything in her power to make people happy.  She is also the most stubborn person the good Lord put on this earth.

Vic is a wonderful mother.  She loves her sons unconditionally.  Jared is her gentle giant.  He helps her mobilize and makes her coffee.  He will make her breakfast and lunch.    He is gentle and tender with his Mom.  He will carry her when she cannot walk.  He protects her…. He has a brilliant analytical mind.  He hates homework and studying.  He under achieves at school.  His room is not the tidiest in the world.  He is an accomplished guitarist.  Jared is generous and has an easy smile.  Jared is her eldest.

 

 

Jon-Daniel is the genius (he has my brain – hahaha).  He is a perfectionist and when he leaves for school his room is perfectly tidy.  He immediately starts homework when he gets home.  His lowest mark is for art – 78%.  He is an accomplished sportsman.  He only watches sport on TV and knows all the international soccer greats, tennis and cricket players.  He makes Vic laugh.  He fools around until she screeches with laughter.  He is angry because she is ill.  Even as a little boy he would cry to see Vic when she was in hospital.  Once he saw her he would start acting up – insisting that we leave!  He even saves airtime…. Jon-Daniel is her baby.

Vic loves her boys and her boys adore her.  I wish their lives were easier.  I wish I could save them the pain they live on a daily basis.

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

Danie – the “Wind Beneath My Wings”!


Today my beloved Danie turned 74.  He is an absolutely amazing person.  He has the wonderful ability to love and to be loved.

I met this amazing man through mutual friends 24 years ago.  It was two weeks before his 50th birthday.  I casually asked whether he was going to have a big party and he said “no”.  He was newly divorced and did not feel up to a party.  In a moment of pity I said “Well, nobody should be alone on his birthday.  If you are not doing anything pop around for a glass of wine…”

He duly popped around for a glass of wine.  After a couple of glasses of wine I asked him if he had dinner.  He said “No” and I said I would see if I could throw together a tuna salad…  I opened my fridge and it was pretty empty.  Some salad stuff, milk, apples and a couple of bottles of wine…

I managed to put a salad together but I could see the birthday boy was not overly impressed.  I was not concerned at all.  He was far too good looking and newly divorced so I did not want to get involved with him.  I had been divorced for many years and Vic was used to it just being the two of us.

I dodged all Danie’s advances for more than a year.  On the 8th of December 1989 I accompanied Danie to a black tie event.  At the function I could not help but notice the reverence his colleagues had for him.  He danced like a dream and remembered that it was my birthday at 12 O Clock….  It was truly a fairy tale night and I fell hopelessly in love.

Vic immediately sensed that there was danger!  She referred to him as “that man”…. She cried a lot and wanted to come home from boarding school.  Vic made a 360 degree turn around.   She went from wanting to go to boarding school to wanting to move home… from independent to needy… from being a difficult teenager to being an impossible teenager.

I met Danie’s children.  I was terrified!  I did not know or like children.  My life was structured, neat, organized and perfect.  I was totally committed to my career.  I had property, a business, lots of friends, a healthy bank balance and my own toolbox.  I did not need any complications in my life!!

I prayed so hard so direction… I explained to God that I was so scared of making a mistake that would affect so many people’s lives.  I asked for a clear scripture!

I opened my Bible and the scripture that jumped up at me was Ecclesiastes 4:9-12 “9 Two are better than one, because they have a good reward for their toil. 10 For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! 11 Again, if two lie together, they keep warm, but how can one keep warm alone? 12 And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.”

I immediately went back on my knees and prayed again.  “God, thank you for the scripture you gave me but what about all the children?”

I opened my Bible and it fell open on page 793 of the Old Testament.  Isaiah 54:1-17 “Sing, O barren one, who did not bear; break forth into singing and cry aloud, you who have not been in labor! For the children of the desolate one will be more than the children of her who is married,” says the Lord. “Enlarge the place of your tent, and let the curtains of your habitations be stretched out; do not hold back; lengthen your cords and strengthen your stakes. For you will spread abroad to the right and to the left, and your offspring will possess the nations and will people the desolate cities. “Fear not, for you will not be ashamed; be not confounded, for you will not be disgraced; for you will forget the shame of your youth, and the reproach of your widowhood you will remember no more. “

Barren? That was me…  The day after Danie’s 52nd birthday we were married.

So tomorrow this wonderful man and I will celebrate our 22ND Anniversary.  We have managed to create a “home” for our five children.  The children, I feared, I now love as my own.  Two of the four call me “Mom”.  Their children are MY grandchildren.  They allow us to be part of the children’s lives and do not discriminate between the grandmothers.  From the day we were married Vic has called Danie “Daddy”.  Danie’s four children are her siblings.  They are our infrastructure.

Danie has been so absolutely amazing with Vic and her illness.  When my dad moved in with us Danie just accepted it as part of our journey.  He was incredibly patient with my Dad who suffered from Alzheimers.  He is my back-up system.  His selfless, caring nature has allowed me to pursue my career.  I am able to travel internationally for my work as he is home…..he is my back-up.  He fetches and carries the boys.  He checks on Vic and loves her and the boys unconditionally.  He shops and manages the home in my absence.  He thinks I am beautiful and smart.

This beautiful man is more than I deserve.  I love him with every fiber of my body.  I am grateful to him for the gift of his children and grandchildren every day of my life.  I am grateful that he taught me the biggest commandment of all – love!

So tonight I salute a wonderful man, husband, father and grandfather.  He is my best friend.  He is an amazing father to Vic.  Thank you God!

He is truly “The wind beneath my wings”  http://www.youtube.com/watch?v=c9ZMDPf9hZw&feature=colike

Posted in Chronic Pain, Family Life, Grief, Jared, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Mommy I need to try and sleep…


Vic as a little girl

Vic had a good day.  She had a visit from Willemien, a pharmacist friend of Esther.  She soaked in her sons’ presence…

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.

My poor, poor baby!

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

This is Vic’s Journey


Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.

 “I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy.  We have always been so close….” Vic lamented this past week.

I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….

Knowing that death is imminent is takings its emotional toll on all of us

Vic said tonight that she has never been more scared in her entire life.  She is scared of being “isolated” from us.  She fears that we will not cope.  She is so scared of the pain.  She is so scared of leaving the boys behind….

I blogged on Vic’s fears before.  https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012   That blog was based on some research and actual observations.  Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months.   For the worse!

The good thing is that Vic is actually sharing her fears with me.  Tonight we prayed over her fears.  Vic, at last, is dealing with her fears.

Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad!  Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it.  Vic over the past couple of months has lashed out at the boys and I.

Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.

Vic feels guilty about being a burden on us.  She also feels guilty that she will be leaving her children behind.  Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident!  I told her that I felt guilty for yelling at her when she was 4 years old.  Until my dying day I will always remember the fear and confusion in her dark brown eyes….

Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…

We spoke and I told Vic that we simply have to let things go.  We cannot change the past.  We must fix what can be fixed and try to let go of the things that cannot be changed.

Vic is stressed that Jon-Daniel and she have drifted apart.  He is angry with the situation.  She wants to spend time with him to rebuild their relationship.

Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already.  The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.

Vic has had many physical and emotional losses which have come before the loss of life itself.  Yet she has gained some things too.  She is seeking spiritual peace, a new relationship with her God.

Hospice has given Vic Azor for the anxiety.  I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure.  She is getting her life in order.  Over the years we discussed death as a natural extension of life….  Now she is discussing her funeral with me.  Psalm 23 ans 1 Cor 13 will be the readings…  What I will dress her in… Her pallbearers…

I sense a loneliness of the heart in Vic.  I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.

I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly,  whilst her son suffered carrying The Cross…  She had to stand by and watch Him die the cruelest of cruel deaths…

Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time.  Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”

God please have mercy on my child.

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

Hospice counseling….


“Mom forgets things and she thinks we are all against her…  Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

via Hospice counseling…..