Another birthday…..


South African grandchildren
South African grandchildren

Yesterday I celebrated (another) birthday.

Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me.  At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy.  I just want 30 minutes alone with you on your birthday…”

“No problem angel.  I’ll switch the kettle on.” I said

“I will be back in a minute” she said

I made coffee and checked some e-mails.  At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….

I went through to her room and the poor baby had fallen asleep on her bed…

Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose!  “Happy birthday Oumie” he said.

He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives.  I was so thrilled that he remembered.

Just before 01:00 am Vic shuffled into my TV lounge.

“Oh Mommy, I am so sorry I fell asleep.  I thought I would just close my eyes for 5 minutes whilst you make the coffee…”

We sat and chatted for a while.  Vic shared her good wishes with me and we just sat and spoke.  We spoke about our very special mother-daughter relationship.  We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)

The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake.  The grandchildren set the table…  My sister Lorraine and dear friend Judy arrived bearing armloads of gifts.  The grandchildren had written me letters and cards – it was so special.  Vic bravely cooked a pot of rice and had lunch with the family.  All the grandchildren swam and played tug-a-war!   We laughed and joked.

It was a perfect day.

Esther and Lani planned the day to start early whilst Vic is at her best.  As the day progresses so her energy levels decrease.  Immediately after lunch Vic went to bed.  She was in so much pain and absolutely exhausted.

All the grandchildren wanted to stay.

Sunday evening we Skyped my son and his family in the UK.  Vic and Danie spoke.  Vic and Danie Jnr have a special bond.

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Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11…  Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16.  Vic and Danie Jnr were the two kids who lived with us.  Vic embraced her new family.  (I was petrified of the children!)

Vic’s siblings have been amazing over the years.  I could never have coped as well as I do if it was not for their love, support and encouragement.  The siblings are fiercely protective of their little sister.

Vic and Danie Jnr spoke for at least 10 minutes last night.  It was a sad conversation between a brother and his older, little sister.

“I miss you so much Little Brother” Vic said

“I miss you too Vic.  How are you feeling?”  Jnr asked

“I am battling Boetie (Little Brother) Vic said

“We are coming to visit in April then I will see you Vic”

“I don’t know if I am going to make it to April” Vic said

“Just hang in there Vic.  It is not that long to April…” Jnr consoled her

“I know but I am tired.  I am just missing you” Vic cried

“I will fly over for a weekend.  I want to see you again” Danie promised

Vic was so tired last night.  Her little body cannot handle parties anymore.  She tries so hard.  This weekend we will have Jared’s 16th birthday.  It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.

I know this will more than likely be another last for Vic.

Esther, Vic and Lani
Esther, Vic and Lani

 

 

 

 

 

 

 

 

 

5 Stages of Dying


It became crystal clear to me when Vic yelled at me in the ICU that she had deep-seated anger issues with me and where she was in her journey.  Dying is unknown territory and none of us have walked this road. Yet we are all morbidly curious about dying. Everybody has some shadows of uncertainty.

According to Hospice there are FIVE stages of dying.

1.      DENIAL: “I’m too young to die. I’m not ready to die (is anyone ever really ready?)”  It became clear to me that despite the fact that Vic was sentenced ten years ago she is still in denial. Even after Brendan had informed her that nothing more could be done for her she still clings to her lifelong defiance of death. The prediction from one’s physician of imminent death can do several things. It can give you time to prepare, take care of business, close doors, make amends. The shock begins to ebb as you come to grips with approaching death.  Vic has some doors to still close.  Her business is in order.  She has written letters to her loved ones, bought major birthday gifts and cards for the boys

 2.      ANGER: Suddenly the terminally ill person is no longer in control of their life.  They have no choice any more – the die is cast….. They are going to die. This is really where Vic is now.  She has lost control of her life.  At the age of 37 she is living in her mother’s home, decisions are made for her she has become a child again.  Her anger on Sunday morning was directed at me.  Her profuse sense of helplessness and loss of control is however not a new feeling.  Vicky has endured a long, debilitating illness.  Doctor error has robbed her of a life.  Illness has robbed her of her dignity.  She is angry with God for allowing this to happen to her.  She is angry for God not taking her.  On Monday afternoon she said “Mommy, God does not even want me…”She has been robbed the opportunity to see her sons complete school, university, get engaged and eventually marry……  Many people die too early but at 37 it is mainly due to misfortune, wrong place wrong time, an accident…..  At the age of 27 Vicky was sentenced to death…..

 3.      BARGAINING: I do not know what bargaining Vic has done with her God.  I know that I have made lots of bargains with my God.  Just one more Christmas….. Just one more birthday…..

 4.      DEPRESSION: Knowing that you are dying must be depressing!  This must be a normal part of the process of preparing to die. Vic is depressed about her inability to deal with her responsibilities. Vic is too ill to get away from the symptoms of her illness …..  She waits for death every day. Vic is depressed about the pain that her illness is causing her sons, friends and family.  Vic is depressed because she feels that she has failed her sons.   Vic is depressed because she is lingering…. Vic is depressed about the loss of love that she has suffered.  Vic is depressed period!  But with good reason.  Antidepressant’s are part of the pain control regime.  If it is helping for her pain that is great.  I hate to think what her mental condition would have been if she had not been on antidepressants.

 5.      ACCEPTANCE: Vic is not at this stage yet.  This is one of the main reasons why we need Hospice.  Brendan (her Gastroenterologist) referred her to a councillor last year to guide her into this phase of her journey.  Vic went a couple of times and then it became a matter of budget – medication or counselling.  Medication won.  Hospice defines acceptance as follows…”Acceptance is NOT: doing nothing, defeat, resignation or submission.  Acceptance IS: coming to terms with reality. It is accepting that the world will still go on without you. Death is after all, just a part of LIFE.”

I see absolutely no peace in Vic.  She is still kicking and fighting.  At times she may fool herself into thinking or believing that she has accepted her situation but it is crystal clear to me that it is not the case.

We met as a family on Tuesday evening to discuss all our frustrations.  It becomes difficult to handle one’s day to day frustrations as we have different agenda’s.  A while back Vic asked my permission to give up.  She spoke to the boys.  We cried and gave her “permission”. 

The family immediately went into palliative mode.  No demands or expectations for any normal functionality from us to Vic….. Therein lies the issue.  We became an “Us” and “Her”… “Us” became the protectors and “Her” became the invalid.  We tippy toed around Vic.  The boys stop bothering her with everyday issues like “Can we go to the movies”; “please pick me up at 16:00”; “Do I have to go to extra lessons?” When we walked into her room and she was sleeping we would turn around and walk out.  We would show no concern for the amount of pain medication Vic was on. 

It is so easy to slip into a “mode”.  I took all responsibilities out of Vicky’s hands, we as a family organized our lives around her pain levels and energy (or lack thereof) levels, we stopped laughing and living in our house.  We were all dying!

When she lashed out at me in ICU I realized that we had serious problems.  Vic was not ready for Stage 5.  She started kicking against death – again.  Her fight is back.

It is however a difficult and delicate balance between pain-free and functional…..  Vic said that she wanted to reduce her pain medication as maybe she would not be so tired all the time.  By Monday evening she was in so much pain that she was vomiting.  She could not keep tablets down….. It took two days to get her pain under control again.

I have also read Katie Mitchells Blog on Chronic Pain and the way that brave lady articulates her battle with pain truly opened my eyes.  I realize now that I cannot take living away from Vic whilst she is still breathing.  I have to let go.  I cannot protect her against pain.  I cannot protect her against death.  I have to try to look at her through her pain filled eyes as I don’t understand pain or her frustration.  I am active and busy.  Today I joined a gym so I can train with the boys.  I do the things with her sons that Vic would LOVE to do!  A couple of weeks ago Vic said “You are the fun person in the family.  You do all the fun things with the boys” Obviously there must be resentment and anger (Stage 1). 

But we live in a civilized home.  We don’t scream, shout or curse.  We bury things under the carpet.  We walk away from conflict so we don’t know what the other is thinking or feeling.  We only see the veneer..… How terribly sad!!  We have lost our ability to function properly.

So from now when I am frustrated with Vicky attempts at doing things for herself or the boys I will leave her be!!  PLEASE God help me!!!!  I am such a control freak!!!  I will endeavor to not stop her from going for a cup of coffee with one of her friends.  I will just pick up the pieces afterwards. 

I have to stop being selfish.  I realize that I was trying to keep Vicky pain-free as it is easier for me to handle!!  Pain free means medication on the strict regime, no strenuous activities, protected and wrapped up in cotton wool.  Vic must make her own painful decisions.  If she wants to take the boys to school who am I to stop her?  Of course she must but not on 400 mg of morphine! 

The problem is that I look at Vic and all I see is that fragile little toddler…… And she is sick.  Very sick!  I want to protect her, breathe for her, die for her.  Vicky is my baby.

Facts about Osteogenesis Imperfecta


 I am posting this extract from the Osteogenesis Imperfectawebsite.  It is informative and will give you some idea of the terrible disease called Osteogenesis Imperfecta.The problem with Vic is the Connective Tissue issues.  If she had not had the blotched pro-disc surgery she would have been fine.

Vic is terminal due to doctor error!  Vic will probably die from her frozen abdomen and the issues that arise from a frozen abdomen. That is the short and the tall of it.

 

Osteogenesis imperfecta (OI) is a genetic disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” A person is born with this disorder and is affected throughout his or her life time.

  • In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people.
  • OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues. It is not caused by too little calcium or poor nutrition.
  • OI is variable with 8 different types described in medical literature.
    • The types range in severity from a lethal form to a milder form with few visible symptoms.
    • The specific medical problems a person will encounter will depend on the degree of severity.
  • A person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime.
  • The number of Americans affected with OI is thought to be 25,000-50,000.
    • The range is so wide because mild OI often goes undiagnosed.

Genetics

  • The majority of cases are caused by a dominant mutation to type 1 collagen (COL1A1 or COL1A2) genes
  • Other types are caused by mutations of the cartilage-associated protein (CRTAP) gene or the LEPRE1 gene. This type of mutation is inherited in a recessive manner.
  • OI occurs with equal frequency among males and females and among all racial and ethnic groups.
  • Approximately 35% of children with OI are born into a family with no family history of OI. Most often this is due to a new mutation to a gene and not by anything the parents did before or during pregnancy.

Testing and Diagnosis

Diagnosis for OI is primarily based on signs seen in a doctor’s examination. When there is uncertainty about the diagnosis, it is best to consult a physician who is familiar with OI. Genetic testing is available to confirm a diagnosis of OI through collagen or gene analysis—a skin sample or a blood sample are used to study the amount of Type I collagen or to do a DNA analysis.

Types

Since 1979, OI has been classified by type according to a system based on mode of inheritance, clinical picture, and information from x-rays. The characteristic features of OI vary greatly from person to person, even among people with the same type of OI, and even within the same family. Not all characteristics are evident in each person. The OI type descriptions provide general information about how severe the symptoms probably will be. Health issues frequently seen in children and adults who have OI include:

  • Short stature
  • Weak tissues, fragile skin, muscle weakness, and loose joints
  • Bleeding, easy bruising, frequent nosebleeds and in a small number of people heavy bleeding from injuries
  • Hearing loss may begin in childhood and affects approximately 50% of adults
  • Breathing problems, higher incidence of asthma plus risk for other lung problems
  • Curvature of the spine

See Types of OI for a detailed description.

Treatment

Doctors who see children and adults with OI include primary care physicians, orthopedists, endocrinologists, geneticists and physiatrists (rehabilitation specialists). Other specialists such as a neurologist may be needed.

  • Treatments focuses on minimizing fractures,  maximizing mobility, maximizing independent function and general health
  • Treatments include
    • Physical therapy and safe exercise including swimming
    • Casts, splints or wraps for broken bones
    • Braces to support legs, ankles, knees and wrists as needed
    • Orthopedic surgery, often including implanting rods to support the long bones in arms or legs
    • Medications to strengthen bones
    • Mobility aids such as canes, walkers, or wheelchairs and other equipment or aids for independence may be needed to compensate for weakness or short stature.

Treatments Being Studied

  • Medications
    • Bisphosphonates such as ©Aredia (pamidronate), ©Fosamax (alendronate) or ©Reclast (zoledronic acid)
    • ©Forteo (teriparatide injections) for adults only
  • Growth Hormone
  • Increased vitamin D intake
  • Physical activity
  • Potential for gene therapy

At this time, there is no cure.

Prognosis

The prognosis for a person with OI varies greatly depending on the number and severity of symptoms.

  • Life expectancy is not affected in people with mild or moderate symptoms.
  • Life expectancy may be shortened for those with more severe symptoms.

The most severe forms result in death at birth or during infancy.
Respiratory failure is the most frequent cause of death for people with OI, followed by accidental trauma.

Despite the challenges of managing OI, most adults and children who have OI lead productive and successful lives. They attend school, develop friendships and other relationships, have careers, raise families, participate in sports and other recreational activities and are active members of their communities.

Managing OI

  • Techniques for safe handling, protective positioning and safe movement are taught to parents
  • Infancy, early childhood and the pre-teen years are often challenging
  • Growth and hormonal changes can affect the frequency of fractures
  • Children and youth learn which activities to avoid and how to practice energy conservation
  • The number of fractures usually decreases in adulthood
  • Following a healthy lifestyle including not smoking, and maintaining a healthy weight is beneficial

History of OI in Medical Literature

There is evidence that OI has affected people throughout history. OI has been recognized in an Egyptian mummy dating from 1000 BC. It has also been identified as the medical condition suffered by Ivan the Boneless who lived in 9th century Denmark. Prince Ivan, according to legend, was carried into battle on a shield because he was unable to walk on his soft legs.

Case studies of fragile bones and hearing loss have appeared in the medical literature since the 1600s.The term “osteogenesis imperfecta” was originated by W. Vrolik in 1849, and the condition was loosely divided into “congenita” and “tarda” by E. Looser in 1906. Van der Hoeve in 1918 described the occurrence of fragile bones, in combination with blue sclera and early deafness as a distinct inherited syndrome.

In the 1970s, Dr. David Sillence and his team of researchers in Australia developed the system of categorization using “Types” that is currently in use. His original four classifications (Type I, Type II, Type III and Type IV) combine clinical symptoms with genetic components. This listing is based on the number of people in the study who had similar symptoms. The types do not go from mildest to most severe. This classification system has been generally accepted world wide since 1979 but continues to evolve as new information is discovered. In recent years, evidence from bone biopsies and other research led to the addition of Types V, VI, VII and VIII.

More Information

http://www.oif.org/site/PageServer?pagename=AOI_Facts

Chronic Illness versus Terminal Illness


Chronic Illness versus Terminal Illness.

Chronic Illness versus Terminal Illness


Vic’s other parents visiting…

What a lovely surprise.  Gillian and Len popped around for a cup of tea!  What makes it unusual is the fact that they live in White River and have just been to the Sani Pass.  Vic was so happy.  She cried tears of happiness when she saw Len.  For a precious hour today we were able to laugh and visit with dear friends.

Len is the second “oldest” living male role figure in Vic’s life.  My brother Johan is the “oldest” living male role model.  Gill and Len have been my dearest friends for the past 34 years.  Is oldest the correct word?  Len is older than Johan and yet Johan is the “oldest” male…So “oldest” in this case means the “longest around”…

Gill was so amazed.  When she last saw Vic she was convinced that she would not see Vic alive again… In the meantime Vic has had her fall and technically speaking should be so much worse off.  But Vic has once again bounced back.

I decided that maybe I should check the difference between critical, chronic and terminal illness.  Maybe Vic is just chronically ill and the doctors got the terminology wrong.

“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects.[1] The term chronic is usually applied when the course of the disease lasts for more than three months.[1] Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and HIV/AIDS”.  From Wikipedia

Critical illnesses are serious illnesses that put the afflicted in danger of possibly dying. The illnesses that are considered critical tend to vary. Typically the big four critical illnesses that are covered would be heart attack, cancer, stroke and coronary artery by-pass surgery.

“Terminal illness is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer”.  From Wikipedia

So according to Wikipedia Vic squarely falls into the terminal illness category.

The experience of death and dying has been transformed over time by significant advances in medical care and technologies, from a short-term event into one that usually involves a prolonged time of slow decline from chronic degenerative conditions.

Let’s look at Vic.  Vic was diagnosed with Osteogenesis Imperfecta as the age of 18 months.  By her 3rd birthday Vic had had 41 fractures.  The prognosis: – Vic would not live to be older than 12

Vic survived her 12th birthday and got married at the age of 21.  Vic fell pregnant 6 weeks after the wedding.  The prognosis:  Vic would not survive the birth of her baby.

Vic survived the birth of Jared.  When he was 7 months old Vic needed surgery to both her wrists.  She had fractured both her wrists and torn the ligaments picking up her baby.  When Jared was 13 months old Vic fell pregnant for the second time.  The prognosis:  Vic and the baby would not survive the pregnancy.  Vic was on bed rest when she was 3 months into her 2nd pregnancy.

It was a difficult pregnancy.  Vic survived and so did Jon-Daniel.

The pregnancies took a severe toll on her health.

At the age of 26 Vic had a hysterectomy.  Age 27 Vic had her blotched pro-disc surgery.  Life threatening sepsis resulted in 80, mainly abdominal surgeries. Now in 2012 there is no further treatment or surgeries available.  Over the past 10 years Vic has bounced between life and death.  She has certainly had good times as well as bad times over the past 10 years.  She has loved and hated, laughed and cried.  She has had good days and real bad days.  She has raised two beautiful boys to be compassionate, caring, responsible young men.  Boys that have brought so much joy to their mother’s life and that make us all so proud.  Young men that we know will honor their mother and their upbringing for the rest of their lives.

The difference however is that this year I believe Vic went from chronic illness to terminal illness.  This year the medical profession has given up hope.  Brendon has categorically stated he will perform no further gastrointestinal operations on Vic, The orthopedic surgeon refuses to pin her arm and the physician cancels blood tests…  On Friday we went back to the orthopod as her hand is so swollen and the pain is getting worse in the arm.  The X-rays showed that the fracture has been aggravated.  The displacement worse and yet he cannot do anything.  The sepsis from the spine and abdomen will spread to the arm.

Everyone has given up on Vic.

It is so soul destroying that no-one is prepared to try anymore.  This year every darn doctor has refused me.  I have always been able to bully them into trying one more time…just one more time.  I cannot take Vic to another gastroenterologist because someone who does not know the condition of her abdomen will certainly cause her death.

Tonight, after Vic’s 23:00 medication she just sobbed and sobbed.  I know her arm is really hurting.  She asked me to lay with her and I held her until her sobs subsided and her breathing became deep and peaceful.  She kept murmuring “I am sorry Mommy…”

Sorry for what?  Vic is sorry that she has “let me down”.  That she has failed at surviving and truly bouncing back. Being able to maintain a “life” and assuming responsibility for her own household and family.

Gill gently suggested that I blog happy moments…  So when I sat down tonight I tried to think of happy moments to share but I could not!  Gill says my blog is sad and I suppose it is.  The blog however mirrors my deepest feelings.

I am sad for my beautiful little girl.  I am sad seeing Vic deteriorate and her suffering increase.  I am sad for my beautiful grandsons and the despair in their eyes when they look at their Mom…

 

 

Who is taking care of the caregiver? 5.7.2012


Who is taking care of the caregiver? 5.7.2012.

Who is taking care of the caregiver? 5.7.2012


When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups.  I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011.  On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys.  I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group.  http://www.caring.com/home-care.  The practical advice of caring for an AD patient was of immeasurable help.  The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted.  I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol.  I don’t have time.  My days are very long and I don’t get a lot of off-time.  Last year Danie and I went for a walk every night.  Sometimes the boys joined us.  It was great and I miss it.  But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote:  “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird.  I don’t have time to sit and do anything.  I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of…  For many years I was very involved in working with the less fortunate.  I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”  Done and dusted.  One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival.  Selfish – maybe…  For now that is the way it has to be.

Do things you enjoy—you deserve it. 
Carol Blackburn wrote:  “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick.  I love my Children and grandchildren.  I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck.  I desperately miss my UK grandchildren.  I am permanently miserable when I think of them.  I miss them with every fiber of my body.  Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg.  Now we see them and the girls on a regular basis.  We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world.  I look forward to flying down to Cape Town to visit with them.  As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing.  But the little ones know Aunty Vic is ill and are so good!

Carol is right.   I enjoy having the grandchildren around and I deserve to have my grandchildren around me.  Grandchildren are the joy of my life!  And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote:  “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote:  “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it.  Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church?  A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares.  Put you in a bed for sleep therapy.  But I know you won’t trust a soul with your family”.  Few people know me as well as Gillian does.  I cannot leave Vic.  There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”.  Vic ain’t heavy she is my baby.

I am trying to get Hospice involved.  Danie does help a lot and so do the boys.  Esther bathed Vic on Tuesday whilst I was at a meeting.  The church and I deserted one another some time back.  I don’t have many friends.

People have their own lives.  We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother.  Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:  

We do.  Today I watched Rango with the boys.  It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote:  “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity.  I have been guilty of impatience, I have lacked understanding.  I am petrified that Vic’s pain and suffering will continue for many more years.  It is strange that Vic is having a better week than she has had in three months.  As Esther said, her eyes are bright and she has mobilised pretty well.  She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote:  “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta.  But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction.  Today I found a website where a doctor who claims great success with the treatment of frozen abdomens.  On the surface it seems very positive.  http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life.  If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering.  I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope.  “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.”  Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love!  Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.

“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’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…

Vic regrets not going to Italy


Vic regrets not going to Italy.

Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.

Vic’s fears 2.7.2012


Vic’s fears 2.7.2012.

A Mother’s Love for her Sons


A Mother’s Love for her Son’s.

A vicious cycle of nerves


A vicious cycle of nerves.