Posted in Angels, Death, Death of a child, Family, Family Life, Grief, Terminal Illness, Vicky Bruce

Why don’t I just go to sleep and never wake up?


IMG_7151Last year Vic said:  “Why don’t I just go to sleep and never wake up?”

This year – today – I am saying “Why don’t I just go to sleep and never wake up?”

Last year Vic said:  “My boys don’t need me anymore.  I have been sick all my life.  Even my ears hurt. ”

On the 8th of January 2013 Vic said “Mommy my room is full of angels…”

Tonight I reread something a friend sent me as a comment https://tersiaburger.wordpress.com/wp-admin/edit-comments.php?p=383&approved=1

Dear Tersia

I have been following your journey now for some time and my heart goes out to you and your family. It is NOT EASY to care for somebody that is terminally ill. It makes it even more difficult if that person is your child.
I would like to share something with you though. It is vitally important that you take care of yourself in this tiring time. Please accept all the help from family and friends that’s been offered to you. This will give you some breathing space. It will also allow Vic to know that it is okay if Mom is just having a little bit of “me” time. Her energy is very powerful and she proved it to everybody up to now that she wants to survive.

Allow all Angels and guides to assist you with the care that you and your family so much need right now. God allows you to call upon their assistance when you need them. When Jacob was struggling with an Angel he called the Angel Michael to assist him and Michael was there not only to help him, but also to guide him with whatever he was struggling with. There are many stories in the Bible and other scriptures about God’s Angels. What still amazes me is that God found it necessary to create Angels. HE knew that we and all other creatures would need assistance and comfort when we are lonely. It took me a long time to work this out. It was only after my mom passed away and I fell very ill that my awareness of these wonderful creations of God was awakened.

Dear Tersia, know they are there, they are with you. You just need to ask for their guidance and assistance. Please know that Angels come in all forms. It might be your neighbour, your friend, nursing staff or maybe a presence! Nurture yourself. Get all the friends, family and help that you can now and trust people. They will be guided and equiped with the knowledge to help you now. You need to be taken care of now and so does your family.

Your friend

Louise xxx

The angels did come to comfort my child in her most fear-filled day.

We have found many angels in human form.  Friends, family, acquaintances, WordPress Friends, Facebook friends…..

Thank you Louise for opening my eyes to the angels.   Thank you for the angels that comforted my child in her hour of need and thank you for the angels that came and took her by the hand and whisked her away to a pain-free, joy filled place.

https://tersiaburger.com/2013/01/08/gramps-was-here/
https://tersiaburger.com/2012/06/17/i-always-pray-for-you-but-you-dont-seem-to-have-a-guardian-angel-17-6-2012/
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, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

September and awareness of pain


As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively.  I have argued with physicians and meet with pain specialists at the pain clinic every month.  I have bullied hospital nursing staff.  I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…  

September and awareness of pain.

 

Posted in Uncategorized, Vicky Bruce

Relax, it’s just a bend, not the end!


We are seeing a GP tomorrow morning regarding Vic’s arm.  Both her arm and hand are so swollen that I am concerned that she may actually lose her arm.  It has now been more than a month from the day that she fractured her arm.  When I bathed her tonight I removed part of the dressing that is protecting her arm.  Her arm is still black and blue and horrifically swollen.  I am convinced that she has pressure sores under the cast.

Today was a truly exciting day… (Relax, I am being facetious)

We phoned the Orthopod that treated Vic in hospital.  Sorry, he (Dr Y) can only see Vic next week!  We then phoned her original Orthopod (Dr V) with the permission of Dr Y.  Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y.  We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him.  “We will not even allow you into Dr’s rooms without a letter.  Doctor V is too busy to phone.  Get a letter if it is so urgent for you to see Doctor!”

Well!!!  What the hell do you do?  You cannot force a receptionist to allow you to see a doctor.  Even if you force your way into the consulting rooms you cannot force a doctor to see you.

ImageImage

The fact that Vicky is terminal does not give any doctor permission to wash their hands off her.  It is written into our Constitution that every citizen of this beautiful country has the right to medical care!!  “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.

The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”

I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.

Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms!  Why only tomorrow?  She is too fully booked today to see us today…

Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working.  Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?

I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!” 

Is there hope after all?  I am cautiously optimistic!

Tomorrow afternoon we see the Urologist.  Strangely I am at peace about Jared.  God cannot be that cruel so I trust in a positive outcome!

JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure.  In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle.  She coughs throughout the night and end up sitting upright to breathe easier.  When I get home she is so excited that she has a coughing spell.

JD follows me where ever I go.  If I step back I step on her.  She sleeps in my room.  JD and I have a system worked out.  When I come out of the shower she is already waiting for me.  When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have.  I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!

I do not want JD to suffer any further.  Tomorrow morning she will go to the parlour one final time.  In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven.  Vic and Jared want to go with her.

I am a coward.  I do not have the resilience and strength to take her.

Vic and JD watching a movie
Posted in Vicky Bruce

For some dying is hard work. 18.7.2012


Jon-Daniel, Jared, Tersia, Vic, Dad
Less than one month before my Dad died.

“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”

The journey of dying has many stages – I have heard it called check-in stations.  I know that some people bypass some of the stages/stations.  Some people take their time and linger.  Some people die quickly and easily, like my beloved Dad and best friend Marlene.

My dad suffered with a terminal illness called Alzheimer’s.  It was dreadful seeing that proud, dignified man’s brain slowly degenerate.  He lived with us for the last 18 months of his life.

After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc.  On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt.  Dad played with the little ones and at the end of the afternoon abruptly got up and walked off.  We let him be – he got tired of people and confused after a while.

An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat.  He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge.  Obviously my Dad’s balance was deteriorating.  I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…

On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day.  He recognized no-one and his legs no longer received the walk commands…  Every time he got out of bed he would fall.  I was sleeping on the second bed in his room so I could hear him get up.  I would put my arm across his chest so I would wake up when he moved.

On the 4th of May 2011 Vic was admitted to hospital for operation number 80.  On the 6th of May Vic spent 6.5 hours in  theatre with her colostomy reversal.  The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic”  However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure.  Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted.  Even the pain of the Elastoplast in her neck is too much post-op.  Apparently it is not a common error but it happens.  With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…

By the 9th of May I was absolutely exhausted.   I had been unable to spend any time with the boys.  And they really needed me.  Between Vic/hospital/work/ Dad and the boys I was absolutely torn.

That night I did not hear my Dad get up during the night.  He fell again.  We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly.  Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU.  Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead.  Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.

My dearest friend was dead.  She had simply had a heart attack and died!  I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!

The next day I met with the medical team.  Dad appeared to be in a coma.  The physician said that Dad had pneumonia.  The Neurologist confirmed that Dad was in the Severe advanced stage of AlzheimersThe Specialist surgeon wanted to operate on my Dad’s aneurysm.

I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia.  There would be no operation.  The Physician agreed with my decision.

On the 13th it was my dearest Marlene’s funeral.  The next day I discharged my Dad from the hospital and brought him home.  We had received the Hospice bed and Hospice had evaluated and accepted dad as a case.  On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously.  Dad battled to swallow and I was pretty distressed about his liquid and food intake.  Dad’s core body temp had dropped to 34.5 degrees C.  Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake.  On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …

I played his favorite classical music and tried to keep him comfortable.  I treasured every moment that I sat and listened to his labored breathing but I was at peace.  There was nothing unsaid between the two of us.  Yet I was so sad…I did not expect it to happen that soon.

On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe.  Twenty three days after his first fall…

Why the detailed timeline in this post?

Some people take their time and linger. Some people get it over with quickly. For some dying is hard work.  But all of us are heading towards the same destination. Passing through our physical stages of dying.  Into death…

For a long time Marlene wanted to die.  She did her best and yet only when it was her time did she go.  Not on her timing, terms or conditions.  But when her time came it was quick and hopefully not too painful.  Marlene wasn’t ill.  She was sick of life!

If I could ask my dad I think he would have been surprised at how quickly he died.  Do I regret my decision to not allow aggressive treatment?  No!  I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!

Vic has lingered for 10 years…  It is really hard work for her…

Posted in Uncategorized, Vicky Bruce

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.

A lifetime ago…